Dr. James Beck 00:00:02
Hello everyone, and welcome to the Parkinson's Foundation Expert Briefing. I'm Dr. James Beck, Chief Scientific Officer of the Parkinson's Foundation, and your host for today. It's a pleasure to have you with us. Today's briefing, our fifth in this year's series, addresses common complications associated with Parkinson's symptoms, as well as the impact of chronic health conditions and even normal aging on Parkinson's disease management. Our goal today is to bring awareness to these complications and address the best way to prevent or manage these issues. This includes discussions of coordination of care, medication management, and what you need to know to help achieve the best long-term outcomes for you or a loved one.

Before we begin today's briefing, I'd like to take a moment to introduce the Parkinson's Foundation. The Parkinson's Foundation is dedicated to improving the lives of those living with Parkinson's by enhancing care and advancing research. Our efforts are deeply rooted in collaboration with the Parkinson's community, ensuring that everything we do aligns with your needs and your priorities. Today's program is another example of how we are working with you to meet those goals.

Now, I'd like to take a moment to get to know you, our audience for today. To do so, we're going to launch a poll, and if you're joining us on Facebook Live, you can respond using the comment section. In this poll, you'll see several questions. Tell us what best describes your connection to Parkinson's disease. Are you a person with PD? A spouse or partner? Does your parent have Parkinson's? Are you a healthcare professional, physician or scientist? Perhaps you're just joining from a different perspective. Let us know by responding to this poll. When it's done, in a few seconds, let's see what results we get, and we can share that with the broader community.

Just take your time to do so. We've got a lot of people joining us, and maybe it's just popping up on their screen.

Okay, not surprisingly, a lot of people have a very close connection to Parkinson's disease. Many people living with PD are joining us today, as well as their care partners. Thank you and welcome for joining us.

As always, we're going to record today's Expert Briefing, and the recording will be available online shortly. There's no need to check back regularly to see if it's been posted. We'll be emailing a link to the recording and other resources related to today's topic for everyone who's already registered.

Now, I'd like to introduce you to today's expert presenter, Dr. Christina Swan. Dr. Swan obtained both her MD and PhD in biomedical engineering from Duke University. Her graduate research focused on understanding how deep brain stimulation changes the brain to improve symptoms of Parkinson's disease. She completed her neurology residency at University of Pennsylvania and went on to complete a movement disorder fellowship at Rush University Medical Center in Chicago, both Parkinson's Foundation Centers of Excellence. Dr. Swan is currently an assistant professor of neurological science at Rush within the section of movement disorders, and she co-leads the movement disorders training program for fellows. Dr. Swan, welcome and thank you for sharing your time with us today.

Dr. Christina Swan 00:03:02
All right. Thank you very much, and thank you for having me here. Without further ado, let me get my presentation going.

All right, very good. Happy to be here. Thank you so much for inviting me to speak. I have no disclosures.

Let's get into it. Our objectives today, which you'll find throughout the talk, are to, as Dr. Beck said, learn the common complications of Parkinson's, understand how other very common conditions affect Parkinson's symptoms, go over a bit of common drug interactions to look out for and end with a discussion of coordination of care among specialists.

The very first way I wanted to start is by saying that even though this is a talk about complications in Parkinson's disease, no one's Parkinson's journey is the same as anyone else's. Significant complications are not predestined, and changes in Parkinson's disease over time occur slowly and are manageable. In fact, studies show that most people are independently walking and self-sufficient with Parkinson's disease throughout their lives, and it's usually other chronic medical problems that become more significant factors than complications of Parkinson's disease.

We'll also touch on how there are important things you can do even now to impact your Parkinson's course. With that, let's just review some information about what happens in Parkinson's. This is a progressive condition stemming from the loss of cells that produce the brain chemical dopamine. Dopamine is critical for fluid movement, and loss of dopamine results in symptoms of tremor, stiffness, slowness and trouble walking. Our general approach is to replace brain dopamine by use of oral medications, which results in improved fluidity of movement.

Now, we can roughly define three different phases of the motor changes in Parkinson's disease. Early on, symptom control is pretty even. Medications don't have significant wearing off between doses. Essentially, folks remain in this nice green zone, and the dosing burden is low.

Mid-stage Parkinson's is characterized by more frequent medication dosing, starting to notice wearing off between doses, which is indicated by this pink coloration, and sometimes at the peaks of doses, extra-wiggling movements, which we call dyskinesia. But by and large, there is still a significant amount of on-time throughout the day.

As Parkinson's progresses into a more advanced stage, the ratio of time off to time on increases, dyskinesia becomes more bothersome, and symptoms like freezing of gait, which is that feeling of the feet being stuck to the floor, can occur and lead to complications such as falls.

Dr. Christina Swan 00:06:22
Parkinson's disease is not just a motor problem, nor are its effects confined to the brain. There is a spectrum of non-motor symptoms as well that are just as important to treat and recognize in order to ensure a good quality of life. In fact, the earliest prodromal signs of Parkinson's are non-motor. These include what's called REM behavior disorder, which is acting out your dreams, punching, kicking or talking in your sleep; loss of sense of smell; and constipation, which is very common in folks with Parkinson's and can be tricky to manage.

In fact, constipation, REM behavior disorder and changes in sense of smell have been considered a formal premotor stage and have been seen up to 20 years before the onset of motor symptoms.

Parkinson's disease is not just a disorder due to loss of dopamine, though it is very important for the development of the motor symptoms. We know this, for example, by looking at constipation. While constipation in Parkinson's is in part due to loss of dopamine cells in the colon, giving levodopa doesn't fully resolve it. Similarly, smell does not improve with giving levodopa, and REM behavior disturbance is more effectively treated by non-dopamine-type medications.

There can be changes in signals to other body organs as well in Parkinson's. For example, signaling changes to the blood vessels and the heart can result in drops in blood pressure when folks stand up, and if these drops are significant enough, it can lead to dizziness and, in the worst case, falls. Signaling changes to the bladder also result in symptoms of urinary frequency, urinary urgency and having to get up frequently in the middle of the night.

Other brain chemical systems other than dopamine become dysfunctional as well. Changes in serotonin levels can result in more depression and anxiety emerging in Parkinson's. Changes in a chemical called acetylcholine can impact memory and thinking. Changes in multiple neurochemicals, serotonin and norepinephrine, can result in further sleep fragmentation and fatigue during the day. These non-motor symptoms are occurring in the background of advancing motor changes, including freezing of gait, as we've talked about, balance problems and a motor swallowing problem as well.

Dr. Christina Swan 00:09:02
We're going to get into a discussion about some of the most common complications, because there can be a lot of changes that occur. I'm happy for anything I don't cover to be asked at the end, but I want to hearken back to this slide. Again, everyone's Parkinson's journey is unique, and while the symptoms that I've mentioned in the prior slides span the breadth of what we can see in Parkinson's disease, these changes are manageable. Not everybody gets them, and there are things that you can do.

Let's get started. How do we avoid complications? Can we alter the progression of Parkinson's disease? The answer to that is yes. The medications that we have for Parkinson's disease do not change what's going on in the brain. They're only for symptomatic relief. But there have been studies, notably on exercise, that render it the only known intervention that can actually slow down what Parkinson's is doing to the brain.

In fact, studies have been done looking at motor symptoms in both early and mid-stage Parkinson's, and with a certain level of intensity of exercise, which we'll cover in a moment, after six months there have been improvements in scores of motor disability and improvement in scores of memory, thinking, mood and anxiety.

The trends are consistent and reproducible. In fact, looking at animal studies of exercise in Parkinson's models, these animal studies show less dopamine cell loss in the brain, which is the primary pathology to begin with, than animals that did not follow a certain intensity of exercise. So what intensity of exercise does that mean? Well, these studies focused on about 150 minutes, so two and a half hours, but split up over seven days.

It could be 20 to 30 minutes, five or six days a week. Enough exercise just to have a light sweat, just to get the heart rate up a little bit, a little bit of huffing and puffing. It doesn't need to be high intensity because, again, movement is difficult, and there are other conditions that we'll cover that can also limit someone's physical performance.

The specific exercises that have been studied and shown to be particularly well-suited are treadmill exercises, boxing, yoga and tai chi, strength training and also stationary bicycle, which are just enough to get somebody's heart rate going but mitigate some of the balance issues that crop up in Parkinson's disease.

Dr. Christina Swan 00:11:56
Now, diet has also been of significant interest, and we get this question a lot. It has been shown, looking at many, many studies compiled, that the Mediterranean diet can actually make a difference in motor symptoms and performance on tests of memory and thinking. That diet tends to be one high in fruits, vegetables and whole grains, with more fish intake and lower dairy and red meat.

They've studied this diet both in folks with Parkinson's and also in folks that have some of the prodromal signs like loss of smell, constipation and REM behavior disorder, but not the true motor symptoms. They've seen both that this diet decreases the risk of developing Parkinson's and, similarly to exercise, improves the scores on those motor function tests, as well as improves memory and thinking performance. It has a positive impact on constipation, which, of course, is a particular problem in Parkinson's.

It's thought that the mechanism by which this diet is helping is that it is rich in antioxidants and anti-inflammatory agents. There have been shown, in biochemical studies of Parkinson's disease, that there tend to be higher levels of inflammation in the brain and also in the colon as well.

Now, let's get more into managing some of these common complications once they occur, and we'll start with constipation. Constipation is typically defined as fewer than three bowel movements per week. It's often accompanied by straining, hard stools and a sense of not completely emptying. As we've covered, this is due to changes in nerve signaling in the gut due to Parkinson's, both involving dopamine and not involving dopamine. It can also come up because of certain dietary and lifestyle factors.

One of the biggest ones is not drinking enough water, particularly if folks have a bladder problem with urinary frequency. That can be a really hard balance to strike. Or, not enough fiber in the diet, not enough exercise or certain medications, which can particularly worsen constipation. Those consist of iron supplements if someone's on them because they're anemic, opioid pain medications in case somebody's got back problems, antacid medicines in folks who have reflux that contain calcium or aluminum, and certain antidepressants and blood pressure medications can be particularly constipating. Other medical conditions that folks live with as well, like diabetes, irritable bowel syndrome and thyroid disease, can also slow the transit time from swallow through the gut, which backs up constipation even further.

Dr. Christina Swan 00:14:59
How do we manage it? Some of these are modifiable. Dietary changes, as we've reviewed. Prunes can be particularly potent and helpful, particularly prune smoothies for helping with constipation.

Setting target fluid intake at least above 32 ounces a day, which is four eight-ounce glasses, ideally between 48 and 64 ounces. Exercise, particularly some of the exercises we covered on a previous slide. Now, that's often not enough in Parkinson's, or at least not enough as time goes on. We generally escalate slowly in the potency of supplements that we recommend for managing constipation.

First, we usually start with fiber supplements like Metamucil, which can be quite effective. Then, if necessary, stool softeners like Senokot, and if we need to, laxatives like MiraLAX, either a half cap every other day or a full cap if needed. For particularly stubborn constipation, we usually send folks over to gastroenterology.

The reason why it's such an important focus in Parkinson's is a few reasons. Severe constipation, when folks are very backed up, can actually decrease the absorption of the medicines you take to treat your motor symptoms. Sometimes we can have not as good of a response from medications as we would like, just because the gut is so backed up you can't absorb your medicines.

Another reason is that the backup can often cause stomach pain, bloating and nausea, where if there's a little bit of nausea from some of our medications, it just makes the day-to-day quality of life quite a struggle. At that point, we usually recommend sending folks over to gastroenterology to consider prescription-strength options for constipation, one of which you may or may not have heard of is Linzess, which can work particularly well.

Dr. Christina Swan 00:17:07
Moving on. Orthostatic hypotension is something that is extremely common in Parkinson's. What orthostatic hypotension means is when you stand up, your blood pressure drops by about 20 points and doesn't catch up appropriately like it should. This is often experienced initially as some lightheadedness with standing. Initially, folks may just have to stand up slowly, take a moment before walking. But it can lead to more significant dizziness, with the potential to lose consciousness and fall if it's very severe.

This is caused by signaling changes in Parkinson's to the blood vessels, which are responsible for clamping down to increase blood pressure in the body, and signaling changes to the heart as well. Or, it can be a direct side effect of some of our dopamine medications. In particular, carbidopa/levodopa, which is our gold standard treatment for Parkinson's, does have the side effect of lowering blood pressure across the board.

It can be a careful balance that we have to strike between making sure that medicines for the motor symptoms are adjusted as appropriate, but at the same time managing these very important side effects that can make a big impact on quality of life. How do we avoid orthostatic hypotension? Careful monitoring for lightheadedness when you stand up, letting your neurologist know if you are noticing this as a problem, even if it is mild.

If you are feeling more profound dizziness when you stand up and start to walk, make sure you have a blood pressure cuff at home. One simple test that you can do is take your blood pressure while you've been sitting for a while, stand up, wait about two or three minutes and check your blood pressure again. If that top number has dropped by more than 20, that's something very important to at least let your neurologist know, even if you're minimally symptomatic at the time, because it's something we'll have to track as the years go on.

Dr. Christina Swan 00:19:19
What do you do if this dizziness is starting to affect you more and more throughout the day? Again, hydration is key, not just for constipation, but also for managing orthostatic hypotension. We typically recommend a minimum of about 32 ounces of fluid daily. The benefit here is that it will plump up the blood vessels, make them more full, so that increases pressure throughout the system.

Compression stockings can also be very helpful, but the important thing is that they go above the knee. This prevents blood from pooling in the legs. It helps the blood return up to the heart to get up to the brain and mitigate that lightheadedness and keep you functioning well. We have seen that folks who are chronically low on their blood pressure also often tend to be more fatigued and might even start to feel like some of their short-term memory is not quite as sharp, just because not enough blood is getting pumped up to those higher-order processing areas of the brain.

If these interventions are not sufficient, we next usually recommend an increase in dietary salt or salt tablets. Salt is important because it will help the body suck in as much moisture as possible, with the net result being, again, plumping up those blood vessels, having more fluid to go around and go up to the brain.

There are certain medications that, if needed, can be very, very helpful, particularly if we're having trouble striking that balance between the dose of dopamine-type medications that you need for your motor symptoms and the dizziness with standing and walking. The most general medication that we use is a medication called fludrocortisone. Its main job is to help the body retain salt and water via the kidney.

But there are also more potent medications that we use to try and boost some of those other chemical signals that are low in Parkinson's disease, like norepinephrine in particular. Those medications are droxidopa or a medication called midodrine. Midodrine can help the blood vessels clamp down again to just increase the pressure throughout your whole body system.

More conservative and, if needed, low doses of these medications can help keep the blood pressure nice and smooth without having to pull back on the dopamine medications, which can result in some sacrifice of mobility.

Dr. Christina Swan 00:22:07
Now, an important complication that I wanted to discuss is swallowing changes. Swallowing problems, the formal term for that is dysphagia, can occur, and they can occur on a spectrum. The reason why this is occurring is because Parkinson's is, from a motor perspective, a disease of slowing. That includes even the more automatic systems as well, like swallowing and processing of food from the stomach all the way through the colon.

Swallowing problems in Parkinson's can start by something as simple as being slow to initiate a swallow. You can swallow. Food goes down. It doesn't feel like it's getting stuck. You don't feel like you're coughing when you eat, but just getting yourself to swallow takes some extra thought.

This can manifest in a couple of different ways. It can result in pooling of saliva and drooling. Drooling is something that we see frequently in Parkinson's disease, and it's not necessarily that Parkinson's is making your body produce more saliva. But when you're slower to initiate a swallow, that saliva is not being cleared as frequently as it was or would be in somebody without Parkinson's.

Another sign of it can be maybe the drooling isn't a problem, but you're taking longer and longer to finish a meal, chewing longer, really forcing yourself to initiate that swallow.

Some folks progress to more uncoordinated motor components of the swallow but are still successful. This can be seen as coughing while eating and drinking, feeling like maybe something's getting stuck momentarily before it goes down, and difficulty swallowing pills, feeling like it takes a little effort to get them down, perhaps needing to crush them in applesauce.

Usually around this point, if we're hearing this in the clinic, we recommend engaging the services of a speech therapist to get formal measurements of swallow, which can be done via use of swallowing a very particular kind of dye, taking images, usually x-rays, and tracking how the dye moves through the esophagus.

Subsequently, as the swallowing problems get more advanced, we start to have more uncoordinated but now unsuccessful swallow. That translates to more feeling of choking when eating solid food, needing to thicken liquids to avoid a sensation that the liquid is going down the wrong pipe, weight loss and, in the worst case, aspiration pneumonia, which can occur when a little piece of food doesn't make it down the esophagus at all, but instead goes down the airway into the lung and causes an infection.

Dr. Christina Swan 00:25:09
How do we manage swallowing difficulties? For the more mild end of the spectrum, for drooling, sometimes adjustment of Parkinson's medications can even speed up the swallow enough that it mitigates this feeling like you have to swallow hard or mitigates the drooling. Something very conservative can also be hard candies. When you suck them, it stimulates the swallow, and it can help clear that saliva that's pooling.

Another option, though I personally don't use it very much, is oral atropine drops. It's a liquid medicine that you can just drop by use of an eyedropper on the tongue, and it will work for a couple hours to decrease the production of saliva in the mouth. But as folks get older or start to use it on a daily basis, it can result in some symptoms of more confusion, so we don't use it very frequently.

One therapy that can be extremely helpful is botulinum toxin injections. There are three salivary glands on each side of the face. The easiest ones to get to, because sublingual means under the tongue, are the parotid gland, which is right on the surface of the cheek in front of the ear, and the submandibular gland, which you can feel right under your jawbone.

Botulinum toxin, which is the same Botox that you may have heard of in cosmetic injections, causes just a little bit of paralysis where it is applied. When it is injected into the salivary glands, it decreases the production of saliva a little bit, such that the production of saliva slows down but can match up with the slower swallow. You no longer have an oversupply without enough swallow. Your supply is less, still enough to keep your mouth feeling adequately moist, still enough to coat your food as it's going down the esophagus and try to get that appropriate lubrication for easy swallow. But it really can help that pooling in the mouth, which can lead to bothersome drooling during the day and the night.

Dr. Christina Swan 00:27:29
As I mentioned on the prior slide, when folks start to feel like they are straining a bit, food's getting stuck or they're coughing, this is when evaluation by and training with a speech therapist can be extremely helpful.

Not only will they do swallowing exercises and teach you how to swallow hard, which is a particular trick that's done a lot in Parkinson's disease, or chin tucks, but often they can connect you with a nutritionist that can help modify the diet. Sometimes swallow is problematic only because it's unclear how to modify the consistency of the food so that it's still foods that you love to eat, but don't require as much effort to get down. These could be softer foods. These could be thicker liquids.

There is a whole variety of options that can be still quite delicious, nutritious and span the likes of even the most picky of eaters, but can really help avoid just that constant struggle to swallow, which puts somebody, again, at risk of the food going down into the airway, into the lung and causing a lung infection.

Next, I wanted to touch on falls. This is, in my opinion, one of the biggest complications of Parkinson's because it can happen as a function of the motor symptoms progressing, but also there are other factors, some of these non-motor symptoms that creep up along the way, that also can increase the likelihood that someone's going to fall. Falls are something that we are very worried about as movement disorders doctors because falls can lead to fractures. Particularly the hip, we worry about quite a bit.

As people get older, there are conditions that pop up, the most common one being atrial fibrillation, that might lead somebody to needing to be on a blood thinner. We worry about falls, particularly if someone hits their head because they can't get their hands out in time to brace themselves. We worry about bleeding as well. Anything that we can do to mitigate falls is our primary objective.

Again, as I mentioned, some of the causes for falls can be progression of shuffling over time, which leads to tripping; freezing of gait, the feet getting stuck and then throwing somebody off balance when they try and get going but their feet don't come with them; and there can also be a general loss of the sense of center of gravity in Parkinson's disease, which means that, when I bend over, I have a sense of where my trunk is in relation to the floor.

For reasons we don't quite understand, that sense goes away in Parkinson's, and our medicines are not very good at giving it back. That can result in somebody bending down to pick something up, but then tipping all the way forward. Or, somebody stands up from a chair, they're not conscious enough to shift their weight forward, and they tend to fall backward into the chair or, in the worst case, onto the floor.

Dr. Christina Swan 00:30:56
The orthostatic hypotension that we talked about, that lightheadedness, can also put somebody in a daze that could make them at risk of tripping and falling or, in the worst case, if the blood pressure drops so low, they pass out. There can be certain medications that are common in everyday use that lead to drowsiness and confusion, and when in combination with some of these other motor symptoms of Parkinson's, can increase fall risk.

Ones in particular that we tend to worry about are medications like Xanax or Ambien for sleep. As people get older, they tend, even if the dose isn't changing, to hit them harder and result in some carryover drowsiness into the next day, which, particularly as you're trying to get going in the morning before your Parkinson's medications kick in, can put folks at higher risk of a morning fall.

Dr. Christina Swan 00:31:53
Also, over time, blood pressure is one that we think about all the time. Initially, somebody might have high blood pressure. They get put on a couple medications and the blood pressure normalizes. But then, as Parkinson's pops up and as Parkinson's moves along, we adjust medications. There are Parkinson's-related changes in what the body's natural blood pressure set point is, and all of a sudden, the blood pressure medicines given to bring the blood pressure down, without any dose changes, are too strong.

That can lead to orthostatic hypotension, drowsiness and confusion, which can lead to falls. We're constantly looking at not just our own medications if somebody's got low blood pressure, but perhaps some of their antihypertensive medications. We need to get in touch with their primary care doctor or their cardiologist in order to start carefully backing off those medications because they are just not needed to the same extent as somebody with Parkinson's gets older.

Vision changes can occur as well. Some folks with Parkinson's have trouble with double vision when they're reading up close. What's going on there is that the eyes, when you read a book, have to work together. They have to converge, turn in to focus on something up close. That turning in, that convergence, gets more difficult. We don't quite understand the mechanism by which it works, and it doesn't respond to dopamine medications that well. But that can happen. It's called convergence insufficiency, and we can treat that either with just covering one eye when somebody reads or with special eyeglasses that an ophthalmologist can make.

There are also age-related changes that can result in double vision with distance, which is particularly problematic if someone is walking out and about trying to navigate a curb, but that double vision is blurring the edge of the curb so they're not exactly sure how high to lift the foot. We can see that sort of double vision as a function of age, particularly if someone had a childhood lazy eye that perhaps was patched and resolved. The muscles in general, as folks age, just weaken over time, including the muscles of the eye that control eye alignment, and sometimes that lazy eye can come back out again. That is also something that can improve with a special type of eyeglass with an ophthalmologist. We're always very careful to screen for double vision. Is it up close? Is it far? And we make sure that our patients are directed to an ophthalmologist or a neuro-ophthalmologist for a more detailed assessment and correction options.

Dr. Christina Swan 00:35:02
What can we do to mitigate falls? Identify modifiable risk factors. We talked about orthostatic hypotension management, and we also talked about looking at medications that are for diagnoses outside of Parkinson's. We talked about high blood pressure. We talked about Ambien for folks who have sleep issues and Xanax, which is common for anxiety and panic attacks.

We also talked about screening for vision changes, particularly double vision, recognizing that that's occurring and sending our folks for an ophthalmology referral. This is the type of glass I was talking about. This is called a prism lens. What it does is, if one eye is looking straight and one eye is looking out, it bends the path of light such that both eyes can focus on the same point together more easily.

Again, staying active. Exercise, even in moderate-stage Parkinson's disease, has shown an improvement in motor scores with sustained exercise over only even six months. But if there do start to be more issues with shuffling and balance, physical therapy can be extremely helpful for gait and balance training. I'll direct your attention to this website, LSVTGlobal.com. That's Lee Silverman Voice Treatment. There are specific programs for speech therapy, physical therapy and occupational therapy for patients with Parkinson's. LSVT Global is a resource that can find all of the Parkinson's-certified therapists by ZIP code near you.

Physical therapists can also be particularly helpful if a mobility aid, such as a cane or a walker, is needed, in training and proper use. A lot of the time, people may have one but end up just walking, carrying it along, because the cadence of how to place it, how to step with it, is something that isn't always intuitive.

Particularly at night, consider having a mobility aid on hand, like a walker, if you're up during the night to use the bathroom because it's dark. If you have any vision changes, the darkness makes that worse. If you have any numbness in your feet, you don't sense the floor as well, and you're drowsy because you've woken up in the middle of the night without a full night's sleep. All these factors can make you more likely to fall during the night, even if you feel fairly stable during the day. I would say that it's worse to break a hip than it is to use the walker.

We often find it's a hard thing when falls become more high-risk, when the walking becomes more uncertain, because the cane or the walker is often seen as a sign that independence is being lost. That's a very hard thing. But at the end of the day, making sure we don't fall, making sure we don't fracture bones, ensures good, longer-lasting quality of life than having to manage post-fracture. It's never too early just to make sure that you have the tools on hand, even if you never really have any significant need for them.

Dr. Christina Swan 00:38:38
This also goes along with recognizing your limitations. As I mentioned, that tendency to tip forward or backward slowly worsens over time. It's hard to know at what point it may become a significant problem until you're in that situation where you've bent over and you're still going forward. Grabber tools can avoid bending over and the risk of a fall. Again, having the tools on hand in case you need them, being familiar with how to use them in case the situation arises, is all to your benefit.

Finally, physical and occupational therapy can often be engaged to do home safety evaluations. How do I make my home less of a hazard? This can involve just decluttering. Getting rid of very thick-edged area rugs, making sure cords are out of walking paths or there are no boxes in the way, installing grab bars in the bathroom and the shower, installing night lights in the bedroom and along the hallway path to the bathroom, just to help again in the particular case of any vision issues arising, and keeping that mobility aid by the bedside because, again, stability is usually worse at night.

I wanted to make a quick plug about freezing of gait. Again, it's that sensation of the feet feeling stuck or frozen to the ground, which can occur when folks start to walk, turn, go through a doorway or in a tight space, always the kitchen or the bathroom. Initially, this may respond to levodopa, but that response may stop over time. This can be quite a struggle for us to manage, but there are things that we can do. Physical therapy is often very helpful in helping train people how to get out of a freeze, how to focus on big steps, and how to widen your stance.

If you get stuck, a wider stance puts you in a much more stable posture for your balance. If you're in spaces in the home like the kitchen or the bathroom, which are often narrow and tight and you always have a tendency to freeze, visual aids can really help. Putting painter's tape in high-risk spaces so that you can visualize picking your feet up high to step over something. Often, that act of trying to step over something breaks you out of a freeze.

There are also some very useful mobility aids. A laser cane essentially does something very similar to painter's tape on the floor, where if you're out and about, it gives you a visual target to step over. You see that he's stepping over the line to break out of the freeze, and there are walkers that come with laser modules as well.

Dr. Christina Swan 00:41:23
Now, let's just touch on Parkinson's in the larger picture. As I mentioned, Parkinson's is one thing, but there are also a lot of other common conditions, like heart disease, diabetes and arthritis, that folks are at risk for just by virtue of getting older. In particular, diabetes is that inability to process sugars in food properly, and persistently high blood sugar can lead to damage in nerve endings, blood vessels and other organs.

Some manifestations of that are sensory loss in the feet, which can further impact balance; slow transit time through the gut, which can further worsen constipation someone might have due to Parkinson's; organ damage, so some damage to the kidney, which makes us often have to be very careful about dosing medications; vision changes; and also, if there are some changes to the brain due to persistently very high sugars, memory and thinking changes as well.

We covered this in particular for the kidney. When somebody has diabetes, we keep a close eye because common medications in Parkinson's, like amantadine and gabapentin, are solely processed by the kidney. Those in particular often need to be dose-reduced or, in the worst case, if kidney function is really declining, stopped. Those are, in particular, medicine interactions between the spectrum of diabetes complications and Parkinson's that we keep a particular watch on.

How do we manage? Careful A1C control, again, exercise, periodic diabetic foot exams with a medical doctor to detect neuropathy, engaging physical therapy for balance training and, again, assistive devices if needed. If it's difficult to feel the floor, then navigating little differences in terrain will be more difficult and increase fall risk. If there is significant gastroparesis, which is, again, very slow transit time from the stomach on through the intestines, gastroenterology can help. Also, keeping a close eye on the kidney function and adjusting doses of certain kidney-processed medications as needed.

The last point I'll touch on is arthritis. Wear-and-tear changes occur over time, osteoarthritis affecting the joints, but also osteoporosis, so that loss of bone density. Arthritis can occur in large joints like the hips or the knee or even the spine, where you can have disc herniations, arthritis which narrows the space through which the spinal cord goes, which can result in pinched nerves, weakness and numbness. Numbness is a particular problem, again, for balance. Pain and weakness are also problems for proper leg swing when you're walking.

Some of this may require surgical intervention as well, so joint replacements or spinal surgery. Managing this in the context of the Parkinson's changes that affect walking and balance can be tricky. We have to keep a close eye on all of it.

Pain can also be exacerbated by a combination of arthritis and muscle stiffness. There are posture changes in Parkinson's, that stooping, which can put some strain on the low back. If there's arthritis in the back also causing pain, they can sort of compound each other.

Osteoporosis also increases the risk of fracture if there is a fall. It's again very important: exercise, physical therapy, keeping a close eye with your orthopedic doctor and your neurologist in order to ensure that both aspects are being adequately managed, and if there is any low bone density, appropriate medication therapy for that.

Dr. Christina Swan 00:45:26
Just briefly, some common medication interactions to avoid. In general, the good news is that Parkinson's medicines generally don't interact too much with heart medicines or diabetes medicines. But there are a few important things to keep in mind. Some of the anti-nausea medicines, metoclopramide, which is Reglan, and prochlorperazine, which is Compazine, which sometimes a gastroenterologist will prescribe for folks with diabetes who have slow transit time through the gut to speed things up, can actually block dopamine receptors and worsen Parkinson's disease symptoms. We generally ask patients to avoid them.

If you're on rasagiline or selegiline, there are actually some interactions to know to avoid. Certain cough and cold medicines, so Sudafed, dextromethorphan, which is a cough suppressant, phenylephrine or Afrin, can interact with rasagiline or selegiline to result in high spikes in blood pressure. Certain antidepressants, like mirtazapine, similarly don't interact well with rasagiline or selegiline. It can result in severe high blood pressure.

Otherwise, other than some of the medications that I've mentioned throughout the talk, we don't have to worry too much about the Parkinson's medicines directly interacting with medications for other conditions.

How do we approach management? As I have mentioned throughout the talk, Parkinson's is a multi-body-system condition. There are changes in your motor symptoms, memory and thinking, gastric function, bladder changes, sleep. The important thing to do is to get the specialist you need as the issues arise. The neurologists are more than happy to help. We see a lot of these things, but we are not particularly experts in all of these areas. But we're always happy to coordinate with other specialists and communicate as well.

Dr. Christina Swan 00:47:36
It's never too early to get some of these specialists, and I wanted to make my last point that it's never too early to engage with palliative care. Palliative care is really more of a quality-of-life doctor. Palliative care does not need to be just at end of life. It is separate from hospice, and it focuses on treating the whole person: emotional, mood, physical, pain. They offer a lot of pain management, advance care planning so that wishes are clear in case things progress over time, and also providing support to the care partner, the spouse, who is there caring for that loved one as more challenges arise.

Palliative care often involves a team of doctors and nurses, pharmacists looking for problematic medication interactions for any indication, social workers helping with needs, particularly if we need special modifications in the home, and nutritionists, particularly if swallowing issues arise and we need to think about different food preparations that are easier to swallow.

Ideally, it's never too early to at least get in touch with and get the opinion of a palliative care specialist. Ideally, we'd have every Parkinson's patient paired with one.

I'll end there. Again, I just want to reiterate one last time, everyone's experience is different. I wanted to touch on the complications, but complications are not guaranteed. There are things that you can do to impact your course. There are a lot of ways to manage these complications as they arise, and you can do this. With that, I'm happy to take any questions.

Dr. James Beck 00:49:24
Thanks very much, Dr. Swan. That was a fantastic presentation, and there is a lot involved. Clearly, complications are really a thing. Perhaps complexity might be another way to think about it when it comes to this disease. That's really helpful, I think, as care partners, just to have this.

Just to mention that we have so many resources that are available covering a lot of the topics you have, and I know my colleagues will be sharing those as we talk and sending it out as part of it. Some questions have been coming in, and they range from real specific, practical things to the broader ones. For instance, one person asked, particularly Marnie is her name, she's wondering, would the over-the-knee stockings that you recommend for compression stockings impact a bad knee?

Dr. Christina Swan 00:50:19
Oh, that's a good question. Well...

Dr. James Beck 00:50:24
We're trying to help them by stabilizing it.

Dr. Christina Swan 00:50:26
Well, that's just what I was thinking about. They shouldn't, and my folks that have them, I've never had them say that it's so tight that it causes uncomfortable pressure on the joint. It may stabilize the knee. I have not heard that it makes it more difficult to bend the knee. I would say that I don't think it'll hurt. Everyone's different, but I don't think if you've got a lot of arthritis in the knee that it's something that you couldn't try.

Dr. James Beck 00:50:55
Yeah, for sure. I guess if it hurts, then that's probably a good sign that's not worth doing. I wonder if they come in fashion colors.

Dr. Christina Swan 00:51:03
They do. There are all kinds of shapes, sizes and colors. But above the knee, that's really what it is. Below the knee just doesn't help. The blood just ends up below the knee. Once you get above the knee, the veins finally suck it back up into the global system, which is what we're going for.

Dr. James Beck 00:51:24
Makes sense. I guess the knee is a constriction point. There's not a lot of space there, so you need to get it back up to the thigh. Okay. That's helpful to think about.

Other questions are coming in regarding this idea of exercise and other complications that are going around. What is your advice for people to maintain exercise requirements, which we know is so helpful for helping to improve quality of life? It's this idea that it's a rising tide raises all boats. Yet they're dealing with other orthopedic difficulties. Maybe they've got this bad knee, or they have chronic arthritis. What is your advice when your patients come in, and for this audience today?

Dr. Christina Swan 00:52:02
This is a very common interaction: you want to do this for your Parkinson's, but the arthritis causes a lot of pain. One really good way of getting around that is aqua therapy. Even just walking in a pool, you're walking against resistance, but the buoyancy of the water helps mitigate that impact on the joint with every step. It will definitely get your heart rate up, even without physically swimming, because of the resistance you're walking against. That can often help meet that exercise intensity requirement while also being safe for the joints.

It depends on exactly where the pain is. Some people where the knees are okay but the back's a problem can do well with a stationary bicycle. With the knee, I would say probably more the aqua therapy.

Dr. James Beck 00:52:59
Okay. Where does the elliptical machine come in here? It just seems like it's just fluid movement without really doing much of anything. But yeah, I see people sweating on them.

Dr. Christina Swan 00:53:09
The elliptical, similar to the treadmill and the stationary bike, is also a great machine. Actually, the elliptical might be a case where, because you're pushing rather than the impact from each heel strike on the knee, it's possible that that actually could be something doable in folks with a lot of knee arthritis. So, yes, the elliptical is also a great machine.

Dr. James Beck 00:53:30
Okay, fantastic. Again, thinking about this mix with Parkinson's and other diseases. You touched on diabetes, and that clearly is an issue for many people in our country, and prediabetes. People are advised to have a low-carb diet, yet they can't really eat high protein because it interferes with their meds. How do you achieve that balance? Is the Mediterranean diet the be-all and end-all answer, or is there something more nuanced as part of this process?

Dr. Christina Swan 00:54:03
I'm glad that you brought this up because this is a question that comes up a lot. What I wanted to say is that you actually can eat protein in Parkinson's. It's the timing that's key. I want to take a couple minutes to talk about that.

The levodopa medicine is the most particular one that is sensitive to protein. When you have protein in your system and you take a dose of the medicine, you end up absorbing only 70% of the total dose. So, not nothing, but that 30% can be key. As long as you respect certain time windows around when you take the dose, you can eat as much protein as you like. Generally, what we recommend is you take a pill and wait 30 minutes to eat, and you can eat whatever you like. As long as, once you're done eating, there are at least two hours for your stomach to clear before your next dose is due, then you should not experience that interaction between protein and food.

That's something that comes up a lot, where people come in and are like, 'Oh, I can't eat any protein. What can I eat?' It just has to be well-timed. It is true that it can be a lot to time the medications and time the food. But if that happens, you really get the most bang for your buck out of your dose, and you maintain weight and you maintain nutrition if you're able to keep on that schedule.

So, low carb, yes, but you absolutely can eat protein.

Dr. James Beck 00:55:41
Okay, fantastic. That's really helpful. You briefly showed the pyramid. I don't know it very well. With a Mediterranean diet, is that something that fits nicely into the Mediterranean diet, or is that too grain-heavy?

Dr. Christina Swan 00:55:55
That's a good question. In my experience, it's more the white processed grains. The whole grains are less of a problem. They are metabolized a lot more slowly. They keep the blood sugar much more even, whereas the more white breads can cause the blood sugar to spike and kind of get a little bit out of control. The Mediterranean diet would fit in well with a diabetes plan.

Dr. James Beck 00:56:25
Okay. I'm sure people who've been counseled on their diabetes know about glycemic index and are aware of those things, so it's something to keep in mind.

Again, diabetes, you've made the recommendation of having people get their feet checked out if you're worried about neuropathy. Neuropathy is an issue with Parkinson's, too. Is that diabetes doctor or whoever you're seeing for that evaluation, would they pick up any type of PD-related neuropathy, and how do you tell the difference between them?

Dr. Christina Swan 00:56:56
Good question. Neuropathy can occur for a variety of reasons. It can occur in diabetes. It can occur if vitamin B12 is too low. Sometimes we don't find a reason and we just chalk it up to age. Fortunately, Parkinson's by itself doesn't cause damage to the sensory nerve endings in the feet, but we always screen for it because I've actually diagnosed diabetes because I found somebody who had neuropathy when they're coming to see me for their Parkinson's care. It does take a little bit of investigative work to figure out the cause when you detect sensory loss on exam.

Fortunately, Parkinson's won't do it, but it's something that is so important in maintaining balance. You need three things to have good balance: you need a healthy brain, you need healthy eyes, and you need healthy sensory nerve endings. If one of those is taken out, then the other two have to be functioning perfectly all the time in order to maintain balance and not fall. That's why at night, when it's dark, or as some of the vision-related changes crop up over time, once you start impacting that second system, then you just don't have the reserve to really catch yourself or navigate a varying surface.

Dr. James Beck 00:58:21
Excellent. Thinking about nights and falls, how do you counsel people who are dealing with orthostatic hypotension, drinking lots of water and not wanting to necessarily get up three, four, five times a night to go to the bathroom because they have full bladders?

Dr. Christina Swan 00:58:39
That is tricky, and I would say that when you get to that point with your orthostatic hypotension, it tends to be more later stages. We may have a commode right next to the bed. If it's a man, some folks might want to use a urinal. Sometimes, we say use Depends because the priority is that you don't fall. That's worse than having to have a care partner help change a Depends in the night.

But the commode by the bedside can really go a long way because you're just kind of one little lateral shift, and you don't have to worry about getting 10 feet across the room and then, unfortunately, having your blood pressure drop and having a fall.

Dr. James Beck 00:59:24
Yeah, those are really good points because it can be really devastating, those falls.

We're at the top of the hour, Dr. Swan. I really want to thank you for offering your time today for our Expert Briefing. And I want to have a big thank you to everyone in the community who joined us today. As you can appreciate, we've had a significant response to our Q&A session and just weren't able to get to them all. If your question wasn't answered, please feel free to call our Helpline, 1-800-4PD-INFO. There's still a lot to learn about Parkinson's, and your engagement can support our efforts. To learn more about PD and research and how to get involved in research, please check out our website. We've got materials there as part of that process.

Our next Expert Briefing is coming in November. This will be the last one for the calendar year before we start up again, and it's What's on Your Mind? Thinking and Memory Changes in Parkinson's Disease. Feel free to go to our website, Parkinson.org/ExpertBriefings, and you can register there and be able to join us as part of that process.

In addition to our Expert Briefing today, we offer a range of virtual education and wellness programs each week through our PD Health @ Home series. This includes Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays and other alliterative days, including our Spanish-language series, EP Salud En Casa. You can learn more, register, and if you've got your phone, you can just hold it up to that QR code with the camera icon going and then click on a link, and it can take you right there to register as part of that process.

In the meantime, just remember, we're here for you. We have a number of resources available online. We have our Helpline, as well as the email that is part of the process. Do not hesitate to reach out to us. We've got tons of resources available, not only covering today's topic, but other issues that you might have questions about as part of the process.

Before we go, and this is the Zoom world, it's just going to fade to black quickly. What will happen is a link will activate on your web browser and show up with an opportunity to complete a survey to give us your feedback. What did you think of this webinar? What kind of criticism can you provide? How can we improve? We share this with Dr. Swan, too, so feel free to provide some comments there as well. Our goal is always to continuously improve, to make certain that what we're doing is there for you and is something that you find useful. Until November, thank you very much for your time, and we'll see each other again soon.

Crista Ellis 00:00:00
Welcome to the Parkinson's Foundation's Wellness Wednesdays webinar. The Parkinson's Foundation is a nonprofit focused on bettering the lives of those living with Parkinson's through improving care and advancing research. Importantly, everything we do is in close concert with our community to ensure that our actions are aligned with the needs and priorities of those living with and impacted by Parkinson's disease. Financial and estate planning can seem overwhelming, and many just don't understand what it is and why it's important. Today, we'll learn what estate planning is, what's involved, and how to begin the process of protecting your assets to ensure you and your loved ones are cared for.

Don't leave your future to chance, and today we'll gain the knowledge to make informed decisions.

PD Health at Home is presented by the Light of Day Foundation, whose generosity has made this programming possible. Thank you, Light of Day.

The Parkinson's Foundation provides weekly education and wellness programs virtually through our PD Health at Home series, including Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays, Expert Briefings and our Spanish-language program, EP Salud en Casa.

This next Wellness Wednesday, join us to help demystify Medicare. Our speaker, Renee Harberts, will help individuals understand health insurance and Medicare in simple, plain terms.

That is not Wellness Wednesday; that will be next Tuesday, June 25. Thank you for joining us to get to know Medicare.

And I'd like to invite you to join us this Friday for our live Fitness Friday session that happens to fall on International Day of Yoga. You'll be joining me for a session of gentle yoga for Parkinson's. I'll be sharing a soothing and supportive gentle yoga class that's designed specifically for individuals living with Parkinson's. We'll focus on gentle movements, mindful breathing techniques and relaxation exercises that help promote flexibility, improve balance and reduce muscle stiffness that are commonly associated with Parkinson's. Now, yoga isn't an end-all, fix-all overnight. Movement is something that we need to devote and commit to to feel the benefits of mobility practice.

So I invite you to join me in gentle yoga for Parkinson's this Friday on International Day of Yoga.

To begin our formal presentation, I would like to introduce our presenter for today's webinar. Colleen Ceh Becvar co-founded Trinity Advocacy Group in 2015 at the culmination of a life dedicated to advocating for older adults and their families. As far back as seventh grade, aging was fascinating to Colleen. Growing up under the same roof with her grandmother and great-grandfather surely influenced her curiosity. Serving seniors and their families began formally for Colleen in 1991, and she has enjoyed every dynamic year of what she affectionately calls her life's work.

Shortly before earning her master's in gerontology, Colleen was an appointed delegate to the White House Conference on Aging and continues her advocacy through various advisory councils representing the voice of seniors. Her graduate work sparked a desire to educate others, and so began her years of teaching through written publications and presentations like this one. Ironically, the field of gerontology is quite young, so advancing it through research is critical. Along with her colleagues at Midwestern University, Colleen published original research on elder abuse and neglect, offering seniors and their families real solutions.

Knowledgeable guidance and ongoing support are the heart of Colleen's work and the energy behind Trinity Advocacy Group, LLC. Colleen, thank you so much for sharing your time and your knowledge with us today.

Colleen Ceh Becvar 00:03:50
Thank you very much. I am absolutely delighted to be here. I'm so grateful for this opportunity, and as the granddaughter of somebody who was diagnosed with Parkinson's, it is such a pleasure to be here to speak with all of you and such an honor to be invited. Thank you very much.

I echo your sentiments, Christa, when it comes to just relax, enjoy, and hopefully enjoy this next hour together. My goal as an educator is always to help people walk away with tasks or with knowledge that they can apply right away.

It is also very important to me that I make this presentation somewhat interesting, because I'm not sure it gets much drier than estate planning. But the interesting thing about what I'm going to share with you today is that, while Trinity Advocacy Group does offer some of these services, I won't be selling those services. But because we do step into these decision-making roles that we're going to be talking about today, it has equipped me to talk with you about estate planning from a non-attorney perspective.

So we're going to talk about what estate planning is and what's involved in estate planning. We're going to talk about the steps that you need to take to begin that process of financial and estate planning. And then I want to elaborate a bit on why it is important for you to consider doing these things because of your diagnosis.

Okay. Christa, just tell me: I can see at the very bottom of my screen the banner that says I'm sharing my screen. Is that showing to others?

Crista Ellis 00:05:54
You're all good, thanks.

Colleen Ceh Becvar 00:05:57
Super. Thank you very much. Okay, let's dive in.

So today I am offering a non-attorney perspective by design. I work with attorneys all the time, and they do a great job. But sometimes, I find, and maybe you do too, that it can be difficult to understand all of what you need to make an informed decision, and instead you get overwhelmed by some of the terminology. So I've done what I can today to take that terminology and really simplify it.

This is something I do in my daily work when people call me to say, "Will you be my power of attorney? Would you be my trustee?" and other things. I find myself oftentimes clarifying things for potential clients. We've been doing this work now at TAG, Trinity Advocacy Group, for 10 years.

I am, by background, a gerontologist. A gerontologist is not a physician. A geriatrician is to older adults what a pediatrician is to children. A gerontologist has studied aging from multiple perspectives, including the sociology of aging, the psychology, certainly the biology of aging, the ethics of aging and much, much more. So that, plus my 30 years' experience of working with seniors and their families, always as an advocate, makes me a gerontologist.

In my work as a gerontologist, when I am creating a care plan, which is a big part of my job, there are two things that drive every care plan. Whether I'm talking about my clients, or you are thinking about yourself throughout this presentation, and I hope you are, or a loved one who maybe has been diagnosed with Parkinson's, I want you to just keep in mind that those two things that drive every care plan are the level of care that's needed at any stage during your life and the resources to pay for that care.

Maybe that care is in home and you're not paying anybody. That's fine. Maybe that care happens in a care center of some sort, and you're getting better from a recent hospitalization. That level of care is the first component. The second component is the resources to pay for that. So I'm going to cover a lot with you today in the context of estate planning.

Colleen Ceh Becvar 00:08:47
Okay. Estate planning. What the heck is estate planning, and what's involved? Let's dive in.

I first want to demystify the word estate because I think a lot of people, when they think of this word estate, they think of what's pictured here. It's this sprawling, beautiful mansion. It just sort of exudes wealth, and that's not really what we're talking about at all. Estate just means your stuff.

It's just your stuff. It's all of your stuff. Now, you can have that mansion that we pictured in the last slide. That's fine. That's part of your stuff, but I want you to know the word estate is a legal term for property, for the things that you own. If that's your shoes that you're wearing, the shirt on your back, the toothbrush you used this morning, the car that you drive, the money that you have in the bank, the home that you live in, that's your stuff. That's stuff you paid for. It's things you own, and so that is your estate.

You don't have to have a sprawling mansion, and most people don't, frankly. So this is just stuff. That's what I want you to think of for today when we start talking about estates. How do you protect your estate, your stuff, everything you own?

And what's a plan? Well, the point is, what do you want to do with your stuff? You have to tell people what you want done with all your stuff when you are not in a position to be giving voice to those things anymore. For a variety of reasons, either temporarily or permanently, you can't give voice to those things. So what can you do if you're not in a position to give voice to those things anymore?

Estate planning. And so I'm making you the king and the queen, right? King or the queen. You pick it, however you identify, as a king or a queen or anything else. But the point here, the whole idea behind estate planning, is that you are in charge. You are the king of your stuff or the queen of your stuff, and you own this kingdom of stuff. That's your estate.

An estate plan allows you to declare how you want your stuff to be taken care of. If you're not the person that's orchestrating those things and making those decisions, the next best thing for you to do is write it down. Write it down in documents that tell people, "Okay, I want you to do this with my house. I want you to do this with my personal belongings, all of my pictures and all of my collectibles, and I want you to do this with my bank account. Some of that should go here to this person. Some of this should go to charity." Those kinds of things, okay?

So that's what you're doing. You, as the king or the queen of your own estate, make a declaration through these documents, simply telling people how to take care of your affairs, your stuff.

Colleen Ceh Becvar 00:12:23
When you start doing this kind of planning, you get to start bestowing these new titles. Those of you who follow the royals, like I do, you saw that when the Queen passed away, everybody got new titles. Similarly, when you start doing your estate planning, you get a title, and your decision-makers also get new titles.

It depends on the document that you are drafting, and I strongly encourage you to work with an attorney. More on that later. But when you are drafting your documents with an attorney, you're going to be known by something other than your first and last name. I mean, you're not going to change your name, but you get a title.

You now are going to be called either a principal, you're going to be called a grantor, or you're going to be called a testator. That all depends on the document that you're drafting. We're going to get to that in a second.

You're also going to bestow new titles on people who are going to be making decisions for you only when and if you are unable to make your own decisions. So you want to get all of this stuff in writing so that people can follow the roadmap that you've left them. When they're following that roadmap, they're going to have special titles too. They're going to be either called your agent, your trustee or your executor. Or, if you're a female, I saw this recently, you could be called an executrix, which I thought was pretty cool.

But more and more, actually, I'm seeing that in some of these documents, instead of being called an executor or executrix, it's now being called, same role, same decisions, a personal representative. I kind of like executor a little bit better. Fancy.

Colleen Ceh Becvar 00:14:40
But these are the titles. So now you know your titles are over here on the screen, right? You're going to be one of these three things, and your decision-maker, only when you are unable to make your own decisions, will have special titles. And these titles are determined by the laws across our great nation. These are not the titles according to Colleen. These are the titles that are given across our great land.

So when it comes to estate planning, we really have four primary documents. Those documents are titled here in front of you. You've got your power of attorney for health care, power of attorney for property, the trust document itself, or the trust document, and the will. And all of these titles, by the way, are just the names of the documents. The titles I was just telling you about, that will all be referenced within the particular documents. But these are the four documents that you need for your estate plan.

Your attorney may tell you, "Oh, you probably don't need this document. You probably do need this document." That's not up to me. Today, the scope of what I want to teach you is: what is the importance of these documents? What do they do for you?

All of the four documents that I just listed, three of them have to do with your money, with your stuff, with your estate, with your finances, with your bank accounts. So we're going to get to that in just a second. Very important to cover that.

But let's start, shall we, with the power of attorney for health care. Now, your power of attorney for health care document, that's the one where you're called the principal, and you don't have to remember that. You don't have to remember that at all. Your attorney is going to go over those things with you. I'm just educating you today about some of this vocabulary.

What's probably more important to you is: what is that person going to do? What are they there to do for you? And that person is called your agent. So you are the principal in the power of attorney document, and the decision-maker, when and if you cannot make your own decisions, whether that's temporarily because you, God forbid, got in a car accident or are in the hospital post-surgery, maybe it's a temporary decision-maker that's going to be making care decisions.

They're going to make sure your basic needs are met. What does that mean? Food, clothing, shelter, medications. They're going to be advocating for you. They're going to manage your crises. When I say crises, those are things that you need immediately. You are in the emergency room. Decisions need to be made. Your health maybe hangs in the balance. And then end-of-life decisions.

Colleen Ceh Becvar 00:17:29
Now, they should not be making these decisions in a vacuum. That's what you are going to be teaching them in a couple of different ways. The first way is this document, this power of attorney for health care. Across our great nation, you can certainly get these documents for free. Every state in our nation offers powers of attorney for health care documents for free. I don't recommend that.

I'll tell you why. In my experience, I spent five years working at an elder law firm for an elder law attorney, and I learned that the documents that an elder law attorney puts in place have far more protections for you than what is called the statutory documents, the documents you and I can get for free online. I really think it's in your best interest, and I only want the best for you and for my clients, so I always recommend best practice. That would be to work with a certified elder law attorney who will draft a very robust estate plan for you.

So your power of attorney for health care is going to help make these decisions based on what your document says. They're not going to make care decisions that they might make for themselves. They're going to make care decisions that you would want for yourself. Their job is not to substitute what you want for yourself. Their job is to get to know what you want for yourself and then make sure that the powers that be, the medical doctors, the nurses, whomever, the pharmacy, whoever they're talking to, Medicare, whatever that is, give voice to what you want for yourself.

Extremely important document.

Colleen Ceh Becvar 00:19:45
Now, let's talk about the other three documents. I told you a moment ago the remaining three documents have to do really with your finances and your property and your estate and all, you know, you can use a lot of those words interchangeably. I'll tell you about the differences in these documents in just a moment. But your power of attorney for property, just like your power of attorney for health care, that decision-maker's name is an agent. The decision-maker's name for the trust document would be called your trustee, and the decision-maker for your last will and testament is called your executor, okay?

All three of those positions, and there are three separate documents that do three separate things, we'll talk about that in a second, but they all have the same authority depending on the assets that they're managing. They all can negotiate agreements. They all must secure your property. They have to manage the assets under the permissions that you give them. They can move money around. They can sign contracts and approve expenses.

They can hire and fire people to help you, be it an attorney, a CPA or others. They should be opening your mail and processing that for you. Again, this is all when you can't do this for yourself. They need to be filing your taxes and keeping you compliant with Uncle Sam, and they just are going to be paying bills for you on a regular basis.

Okay. Those are some general duties that all three of these roles, all three of these documents, address.

Colleen Ceh Becvar 00:21:39
Now, two out of these three documents actually are very similar, and that is the power of attorney for property and the executor, or your will. The duties as a power of attorney for property are nearly identical to the role of the executor. The difference is this: when you name somebody to manage all of your assets with your power of attorney for property document, they can only do that during your lifetime. The moment you pass, that baton must move somewhere else. That person loses legal authority at the time of your passing, and that baton is picked up by your executor.

Okay. So all that bill pay and all of those things, your power of attorney may be doing all those things and paying the mortgage and whatever you need them to do during your lifetime. And the moment you pass, their authority is over. Okay? That is picked up by the executor, and those duties then move to your will. That's when your will becomes the governing document, and your power of attorney for property has no more authority. It expires.

So I want to clarify a little bit more about these roles. The power of attorney for property and your will, that person can be the same person. Let's say you have an adult child and that person is your power of attorney for property during your lifetime. When you pass away, you want that same person to manage everything after you die. You want them to settle your affairs. They know the bank accounts anyway, et cetera. So you're going to have them manage everything. That's fine. You can certainly do that.

But it's important for you to know that your power of attorney and your executor, your power of attorney for property, or your agent under the power of attorney for property, and your executor, they can only manage the assets that are in your name alone. Another way to say that is they can only manage assets that are titled only in your name. Well, Colleen, how do I know how they're titled? Look at the statement that comes with your assets.

Colleen Ceh Becvar 00:24:36
On your slide here, you can see in the middle of the page that this would be an example of a bank statement. You can see that John Jones, this statement is in his name alone. Therefore, his power of attorney for property, or his agent under the power of attorney for property, attorneys correct me all the time on that, I should be saying agent. So the agent under the power of attorney for property document or the executor of the will would have the responsibility and the legal authority to be able to manage this asset. That means write checks from that account. That means ask for statements. That means stop payments, all of those things, because it is in your name alone.

And I mention all of that, and I'm very specific about that titling, because it's a very different scenario when it comes to our next estate planning document. Our final estate planning document is the trust document. The trust document is a really cool document. I like it because it's such a creative and versatile document, and it is really the only document that bridges the authority of the decision-maker during your lifetime and after you die.

So this is the only estate planning document that allows the trustee, in this case, that's the name of the decision-maker, to make decisions for you with the resources that the trust, and I'm going to talk about that in a minute. The resources in that trust document are handled and managed by your trustee during your lifetime and after your death. It's a really interesting document. It's a really cool document. I like it because it's so creative. It's so versatile.

Colleen Ceh Becvar 00:26:28
On the left-hand side of your screen, you can see that that trustee can do all of those things I just talked with you about a few minutes ago. Remember, this is something that your trustee can do. Everything on the left-hand side of the screen, your trustee, your power of attorney for property and your executor are going to do all of these things, negotiate the agreements all the way down to paying bills.

But your trustee can also, through your trust, and you design this with your attorney, set strict and creative parameters for whoever is going to benefit from the assets in your trust. So there are pet trusts, where you can design a part of your trust that X amount of dollars goes to Fluffy every month during your lifetime and after you die, because maybe your pet outlives you.

I've seen a lot of interesting things in pet trusts, that the pet needs to be cared for in the way that you want them to after your passing. We had a pet trust one time here at Trinity, and the cat had to have very specific liver from a very specific butcher. The decedent left money in her trust to be able to pay for that and all of the veterinary care.

Another thing is, I've seen where a trust has said, "Well, my granddaughter can have her inheritance only if she marries a Catholic," or only if she doesn't marry a Catholic, maybe. But you can put those things in the trust document. Or I just received a trust very recently where the children will benefit from this trust until, and we will be that trustee and make sure that the children get whatever they need until they reach the age of 30, at which time the children then become their own trustee.

It's a private document versus your will. When you pass away, your will becomes a public document, but a trust remains private. That's why a lot of people like to use a trust, because a will, for example, when you die, is filed with the court system. It is a public document, although it's not easy to find for those of us who are not attorneys. But the point is the same, that people can see who you've left your money to and your stuff to. Whereas a trust document is only distributed to the people who will benefit from it. So it's a private document.

Colleen Ceh Becvar 00:29:40
It avoids court involvement. Courts are very reluctant to get involved in trusts, and the whole idea behind a trust is to keep courts out of your decisions.

It controls the flow of money over time. During your lifetime, maybe you are the only beneficiary of the trust, and you've got, say, $100,000 in there, and you want to use all that $100,000 in there. Your trustee makes sure that happens during your lifetime. But when you die, let's say you never touch that $100,000. Well then, your trust says how that $100,000 is going to be distributed after you pass away.

Most importantly, a trust allows you to retitle your assets in the name of the trust. Remember a minute ago where I showed you John Jones's bank account? When you decide to draft a trust, if you and your attorney decide that makes good sense, you can retitle your home in the name of the trust or all of your bank accounts, like you can see here. So John, this now is not just titled John Jones. This is titled John Jones Trust, and John Jones is his own trustee.

Now this tells me and you and everybody else in the world that this account no longer belongs to John Jones. This belongs to John Jones's trust. And so a trust is a mechanism for you to give away the ownership of your assets to a trust, and you protect those assets.

Colleen Ceh Becvar 00:31:23
When it comes to John Jones, or the trustee, your trustee cannot look, and it's none of that trustee's business, what is in your name alone. Your trustee can only look at bank statements or a house, maybe, that you have protected in the name of the trust. They can only access information about the assets that are retitled in the name of that trust.

A lot of people go through this effort of drafting a trust, and then they never retitle their assets, which is kind of a waste. Not kind of; it's a waste of time and money, your money, and your time and your attorney's time. So if you go through the effort to design this very versatile and creative document, your next step is always to take that trust, it's just a document, to the bank, at the advice of your attorney, and retitle certain assets, as many as you and your attorney think are a good idea, into the name of that trust.

Then your trustee can only focus on those documents. Everything that is in your name alone is your business or your power of attorney's business. Okay? Likewise, your power of attorney and your executor, remember, they can only look at things that are in your name alone. They have no jurisdiction or authority to touch the funds in your trust. That is a separation of responsibilities.

Okay. So, just as a recap, and this is a pretty busy little chart, but I want you to have it anyway, this just sort of captures what we just talked about. You’ll see all the way on the left, the documents named are the power of attorney for healthcare, power of attorney for property, the trust and the will.

And your title, remember, you get a brand-new title. Your title for your powers of attorney documents: you are the principal. You are the person making all the decisions about how you want your healthcare treated and how you want your finances treated. In the trust document, you are called a grantor because you are granting assets to the trust. You are the grantor. And when you are drafting your will, your last will and testament with your attorney, you are called the testator. So those are your titles. That’s what you’re going to be called within your documents. Don’t commit this stuff to memory. Just use it so you’re familiarizing yourself with these things.

Your decision-makers, those are the people that you have knighted, K-N-I-G-H-T-E-D, knighted them in your authority as the king or queen of your estate. You have made your decision-makers, you’ve named them in these documents and they have new titles. In the powers of attorney for property or healthcare documents, your decision-maker has the title of agent. In the trust document, they are called your trustee. And in the will, as I mentioned, they are your executor, executrix or your personal representative.

The scope of their authority is, for your power of attorney for healthcare, only your care. Your power of attorney for healthcare cannot write checks for you, cannot sign contracts for you. They are limited to your care. Likewise, your power of attorney for property has no jurisdiction to make any healthcare decisions for you, and they can only govern assets that are in your name alone. So if your name is John Jones and your bank accounts have not been moved to the trust or are jointly held with somebody else, your power of attorney for property cannot touch those. So it’s only the assets titled in your name alone. That’s the only thing that they can touch versus your trustee. The assets that are titled in the name of the trust are the only assets that your trustee can access at all.

Colleen Ceh Becvar 00:36:18
And then after you pass away, your executor can only manage and distribute and handle your final affairs for assets that are in your name alone. Now, I wanted to also memorialize for you when that authority ends, but I didn’t put on here when authority begins. But let me just address that very briefly for your powers of attorney.

Powers of attorney documents can begin either at the time that you sign them, or you can make them only valid once certain criteria is met. And we see this happening more and more. A lot of times, people get a little worried about, “Oh my gosh, if I sign these documents, my children are just going to take over,” or, “My spouse is going to take over.” Not true. Legally speaking, they don’t have the authority to do that because if you’re making your own decisions, these documents are helpful, but they don’t mean anything. They’re really here not just to memorialize what you want, but to give your decision-makers the information so that they can make decisions when you’re not able to make them for yourself.

The powers of attorney for healthcare and for property start whenever either you say they start, or if you have — I’ve seen things like two physicians need to state that I am unable to make my own decision and my cousin needs to agree. I actually had that happen. And the same thing with trusts. Sometimes you can say that certain criteria needs to be met before this person, this agent, this trustee, steps in.

Their authority ends, as I mentioned, at the time of your passing. Now, sometimes we’ll see with the power of attorney for healthcare, sometimes we’re seeing that authority ends upon my burial. That’s what the document will say, which allows that person to either have you cremated or whatever those end-of-life decisions are for you, but they can implement those. The trustee, their authority ends when the money’s gone, when they’ve distributed everything to the charities of your choice, to your beneficiaries. And then the same thing with your executor. Their authority ends when the money is gone and all of your final affairs have been managed according to the roadmap you set up in your documents.

I want to just talk a moment about myth-busting about decision-making, which is basically what I just said a moment ago. I just don’t want you to think that in putting these documents together, you lose all voice. On the contrary, you can and should continue to make decisions as long as you are able and want to do so. These folks are here to help carry that torch for you according to your wishes. And the best way for you to communicate those wishes is to document your estate plan through these four documents.

Colleen Ceh Becvar 00:39:38
When it comes to financial planning, I may not have to tell you how expensive the cost of care can be sometimes, depending on where you’re receiving that care. But I would strongly encourage you to have a financial team that coaches you through some of the decisions you’re going to need to make. And these are the three financial professionals that are going to not just keep you on the right side of the law, but help you manage your best interests and your financial goals.

So, I always recommend a certified elder law attorney, a certified public accountant. This is not somebody that you, you know, when you start getting into trusts and things like that, you’re going to want a CPA or a certified public accountant to help you with your tax filings. And then finally, a financial planner. If I had to pick which one of these folks to start with, pardon me, I would always start with a certified elder law attorney. Or if you have these other professionals already in place, either a CPA or a financial advisor, they’re going to have recommendations for you. Any one of these professionals can refer you to reputable other professionals that they know.

Just think about that. They’re going to teach you what buckets you can use to pay for care. These folks are fluent, especially your certified elder law attorneys, in asset protection. Because if you are wanting to leave money behind after you pass for legacy, for inheritance purposes, or you’re married or in a civil union and you want to leave money to somebody else, that’s legacy. You need to know how to do that legally and still qualify for government benefits because there are options where you can transparently do that.

There’s also public benefits. What about insurance? And this doesn’t just mean Medicare. This means your private insurance, your life insurance. There are life insurance vehicles now that can be used and converted to what we would call long-term care insurance policies to actually help pay for your care during your lifetime. They’re doing some pretty amazing things in the financial realm because people are living longer. So there are some creative options. And then, of course, letting you know how to best use your income and your savings to help not just preserve it, but also the best way to spend it down to reduce the tax implications. They just have the best advice for you. So I would encourage you to get a hold of those folks.

Colleen Ceh Becvar 00:42:23
So, estate planning and you. I was asked to talk about why estate planning is important for people with Parkinson’s, and you know, I don’t know that estate planning is more important for people with Parkinson’s. I think that’s your decision. What I can tell you as an advocate is that I want what is best for my clients and for all of you.

In my experience, without an estate plan, the decisions that you have the opportunity to write down, you know, what your wishes are, you leave those in the hands of people who don’t know you, who maybe don’t love you, who maybe don’t know what’s important to you. When you’re already vulnerable and you need somebody to speak on your behalf, I want you to have some sort of compass, some sort of roadmap that you’ve given people, and that’s what an estate plan is for.

So you have to decide if you want to give voice to your priorities. And if the answer is yes, then I urge you to consider an estate plan. Do you want to provide for your loved ones or for charities? Do you want to protect your assets from the high costs of care? Do you want to feel empowered, for yourself and your loved ones, to help make those decisions about how to manage your affairs when you are not able to do so, either temporarily or permanently? If the answer to any of those is yes, then that is what an estate plan is for. And if the answer to all of those is no, then that’s okay. I’m not judging that. I just want you to know that then the people that are making those decisions for you are obligated by the law to do that, and it gets pretty sterile. My experience shows me most people, like all of us, we’re individuals. And so I don’t want the law to be making decisions for you about what’s most important.

Also, do you think it’s important to have somebody that’s going to make those care decisions for you? And I just put a refresher up here on this slide that shows you what that care, that person, that power of attorney for healthcare is going to do for you and what that power of attorney for finances, your trustee and your executor will be responsible for. So do you think it’s important to have somebody giving voice to these things when you’re not able to do so? Then make a decision to go and find out more about how to protect yourself.

Colleen Ceh Becvar 00:45:24
And I have these next few slides about best practices and what I want you to do if you decide that this is for you. What are the next steps? How do you get started? My strong recommendation, as you’ve heard me say, is to get a certified elder law attorney. And I’ll tell you why.

First of all, I used to think that an elder law attorney was somebody that fought for people against elder abuse. And while that’s not untrue, that’s more personal injury. Really, the discipline of a certified elder law attorney is to understand what financial vehicles they can help you protect your assets in and access Medicaid or veterans benefits or other benefits to be able to pay for the long-term care that you may need.

And let’s be clear, you’ve got a chronic and progressive disease. I hope that the Parkinson’s Foundation and others who are doing the important work of research give you a cure during your lifetime. I hope that happens. I would have wanted that for my own family members. But if that doesn’t happen, then it’s likely that you’re going to be paying at some point for somebody to assist you to do the things that you cannot do for yourself. That’s the discipline of a certified elder law attorney, to make sure that they are helping you protect your assets and helping you access those financial options to pay for your care.

So, how do you find a certified elder law attorney? Because not every estate planning attorney is an elder law attorney. Just because they have lots of clients who are older adults does not make them an elder law attorney and certainly not a certified elder law attorney. So these two resources are going to help you, through just a simple zip code search, find certified elder law attorneys anywhere in our great nation in your area.

Sometimes people say to me, “Colleen, I can’t afford an attorney.” No problem. Every state in our great nation has an American Bar Association. So look up what those affordable options are in your area. An alternative to that is every county in our nation has what’s called an Area Agency on Aging. So get a hold of the Administration on Aging. Find out who in your county is the Area Agency on Aging, and they’re going to put you in touch with affordable legal services right in your area.

But I don’t want to diminish the fact that it is worthwhile, if you do have the resources, to spend it on a solid estate plan.

Colleen Ceh Becvar 00:48:13
The other thing I want to encourage you to do is decide what is most important to you. I teach attorneys and consumers about this all the time. The documents that we just got done talking about are excellent. They’re a great start, but I will tell you, it’s impossible to memorialize everything that you want and think through every hypothetical and get that into a document. It’s impossible to do.

These three tools that I have here for you are my very favorite tools to help people sort through what is most important for them. This middle one is called the Conversation Project. It’s a free workbook and, pardon me, it’s available in multiple languages. It’s awesome. I use it, I teach it, and it takes you through some pretty uncomfortable questions, but it’s going to help you just decide what’s important to you. And then these other two resources, one is a Hello game that kind of gets the conversation started, and the American Bar Association Commission on Law and Aging has published a document that will also help you sort through what it is that you should be thinking about as you start drafting these documents.

I also get the question sometimes, what if I don’t have anybody to step into these decision-making roles? That doesn’t mean that you don’t have family, or maybe you don’t. That just means that maybe you don’t have anybody that you trust or anybody that you want, or you’re a very private person, or you think that you need somebody who lives close to you. If you don’t have somebody to step into those decision-making roles, I urge you to get a hold of Aging Life Care Association. Again, a simple zip code search. That is the professional association that governs care management across our country.

A lot of people don’t even know that this profession exists, but care managers are really there as your frontline person that is going to take you through some pretty tough decisions, and they might be able to step into that role for you as a power of attorney, as a trustee, etc. If the aging life care professional or care manager in your area, that agency, is not able to do that, I again defer to the Administration on Aging, to the county that it is in, the Area Agency on Aging in your county. Contact them. They are going to have an information and referral service that’s going to be able to tell you who in your area will serve in that role.

More than anything else, I have to just encourage you to do something. Take one step in this direction. Do not bury your head in the sand. It’s not a fun topic. I hope I’ve made it somewhat interesting for you, making you royals and everything, but it’s not a fun topic. I know that. And I know you’re grappling with this diagnosis, and sometimes it’s hard to look at a future, or maybe you’re already feeling disabled in many ways or your loved one is. But take a step in this direction. Sit down with a certified elder law attorney. Commit to yourself to get online today and find out who these professionals are in your area, or pick up the phone. Call your Parkinson’s Foundation Helpline and have them help you discover some of these other resources that may be available to you.

Colleen Ceh Becvar 00:52:22
That’s my time. I am certainly here to answer any questions for you. My name is Colleen Ceh Becvar. I’m a gerontologist and proudly own a company called Trinity Advocacy Group and Guardians, located in Illinois. And I just want to open this up for conversation. Krista, I kick it back to you.

Crista Ellis 00:52:44
Thank you, Colleen, for offering this information in a way that I haven’t quite seen it given to the community in this way. It’s been very beneficial for me as a young adult to consider these topics in a digestible way. We received so many questions from our community, and you just continued to answer them ongoing through the presentation.

So I want to acknowledge the effort that you put into this presentation and the natural ability that you had to answer the questions without even knowing that the questions were there yet. So thank you.

Colleen Ceh Becvar 00:53:27
Thank you, Krista. Thank you so much. Is there anything that came through that still needs to be answered or that I might answer?

Crista Ellis 00:53:36
We have a few moments, and I’ll try to fire off as many as I can with the time that we have together today. So we did receive a few questions around the same topic. Still some confusion around the difference of needing a will and/or a trust. Should we choose a will and a trust? Do we need a will and a trust? Do we choose will or trust? Just wanting to revisit the topic of will versus trust. Which one is better?

Colleen Ceh Becvar 00:54:06
So, that’s really a question for an attorney based on your goals, your financial goals. What I will tell you is that if you had to pick one, the will, you’re always going to have assets and stuff in your own name, period. So if you don’t have a will, it’s going to go into the court system.

But the other thing is, if you have assets in aggregate, meaning add them all together, if those assets exceed $100,000, and I want you to think about the value of a vehicle if it was sold, the value of your home, the value of your bank accounts, all of that. If all of those things combined is over $100,000, I think most attorneys are going to recommend that you have a trust because, if it’s over $100,000, at least here in Illinois, that $100,000 is that threshold. Then if you don’t have things to protect that and you don’t have a will or a trust, it’s going to go into probate and you can just avoid that. So that’s a big reason for a trust. But that’s a conversation you definitely want to have with an attorney, definitely. Because not all attorneys are going to recommend that you have a trust. It depends on your specific goals.

Crista Ellis 00:55:36
Right. And would this be the elder law attorney?

Colleen Ceh Becvar 00:55:40
Yes. Absolutely.

Crista Ellis 00:55:42
Okay. Great. Thank you for clarifying that for us, Colleen. I appreciate it.

Colleen Ceh Becvar 00:55:46
Can I make one more comment about an elder law attorney and a trust? A lot of times, the trust that just an estate planning attorney might put together is going to be called what’s called a revocable trust. An elder law attorney is going to help put assets in a very specialized type of trust that protects the assets from the overreach of the government. That’s another reason why I encourage you to have a consult with a certified elder law attorney.

Crista Ellis 00:56:22
Thanks, Colleen. I appreciate the way that you offer comprehensive and practical responses to these questions. It’s very helpful for us to take away from our time together. We have three more questions and two minutes left in our hour, so we’ll see what we can get to for our viewers today. Someone writes in, “My adult children are listed as beneficiaries on our accounts. Is it necessary for my wife and I to create a will?”

Colleen Ceh Becvar 00:56:50
So, that’s a great question. And now we’re getting into that second or third layer of things. When you have bank accounts, when you have assets and beneficiaries are listed on those assets, then those will go directly to your children because you’ve said so. So the bank or whoever, wherever that asset is held, they must honor that.

There are alternatives to a will, and that might be a transfer on death instrument. You may have a lot of different options for that. So, there again, what is in your best interest based on your financial goals? You may not want to transfer that asset to your loved ones because of tax implications depending on the size of that asset. So that’s where I’m recommending your dream team, those three financial professionals, or your certified elder law attorney, a CPA and a financial advisor, just to have those folks weigh in on that.

Crista Ellis 00:58:07
And to follow up on this topic, just thinking about who counts as beneficiaries, could you describe what this person is? Do they own, are they family only? Just getting a little bit more clear on what a beneficiary or who a beneficiary is.

Colleen Ceh Becvar 00:58:25
A beneficiary can be anybody that you decide you want to bequeath or give your assets. So I gave you an example a little while ago of a pet, right? You can give Fluffy great care through setting up a trust and some instructions and a bank account. Charities can be beneficiaries. People or individuals can be beneficiaries. It’s whoever you want.

If you have children and you do not want them to inherit your money for whatever the reason, or one of the children, I’ve seen that happen, you specifically exclude them from your estate plan. You can do that. Families have all kinds of histories, so it doesn’t have to be next of kin. But if you don’t have an estate plan and everything ends up in the court system, it will absolutely go to your family because that’s the law. So think about that. If there is somebody that you don’t want to inherit, that’s another good reason to get your affairs memorialized.

Crista Ellis 00:59:38
We have one more question that came through, so I’d love to just take one more minute of your time.

Colleen Ceh Becvar 00:59:44
Happy to. Thank you.

Crista Ellis 00:59:46
One of our viewers is curious if the same attorney can do all of these documents, or do we need different attorneys to file and walk us through this estate plan, this financial plan?

Colleen Ceh Becvar 00:59:59
Right. If you go with a certified elder law attorney, you will only need that certified elder law attorney, which is another good reason to go to one because they have that comprehensive picture. Part of what their specialty is is these financial pieces, leveraging government benefits, helping you move assets in a way that best supports your goals. Yeah, it’s a comprehensive plan that they will put together for you.

Crista Ellis 01:00:30
I love when you can bridge the skills and knowledge and wisdom from one single group or groups of persons that makes it so easy to access for us. So, bringing in that elder law attorney once more before we close. Colleen, thank you so much for your time. Curious if you would like to share any last few words, wisdom pearls that you’d like our community to walk away with on top of what you’ve already contributed.

Colleen Ceh Becvar 01:00:58
I think, you know, just take that first step, you guys, or maybe it’s your 15th step. Just keep moving that forward because it really is going to give you such peace of mind, I can’t tell you. And you know, it’s progress, not perfection. And thank you so much for having me today. I really am honored to be here.

Crista Ellis 01:01:20
Thank you, Colleen, for your time and for sharing the labyrinth of information in a way that was so easily digestible for us. And I want to thank each of you for joining us today, for offering us questions and to get clearer on what that next step may look like for you.

Please don’t hesitate to reach out to the Parkinson’s Foundation if you have a question that went unanswered or questions come up as you start to integrate the information. Feel free to reach out to our Helpline. Information is on the screen here for you to access at another time.

And before you go, my team and I are deep in review season right now, thinking and curating what the subject matter might look like for the calendar year to come. Thinking of what topics are important to you, as we end the webinar, your Zoom screen will prompt a survey. Our programming is literally fueled by your feedback. So please, it’s with great appreciation that you take the time to let us know what you hope to learn about in future sessions. All right.

Well, take care, everyone. Colleen, again, many thanks for you and all that you do for our community and to all of you around the world. May you be well. See you next time.

Crista Ellis 00:00:01
Hello and welcome to the Parkinson's Foundation's webinar on resources for veterans with Parkinson's. I'm Crista Ellis, your host for today's webinar. Helping me behind the scenes are my colleagues Danielle Agpalo and Laura Cameron. More than 110,000 veterans with Parkinson's disease receive care through the U.S. Department of Veterans Affairs. Many U.S. military veterans with Parkinson's have access to specialized medical care and financial assistance through the VA. During this webinar, we will dive into an exploration of the extensive resources and dedicated support services that veterans have access to through the VA and the Parkinson's Foundation.

Today's webinar and the entire veterans webinar series is presented with support from the Don and Lorraine Freeberg Foundation. We want to take this moment to thank the Freeberg Foundation for helping to make these programs possible.

The mission of the Foundation is to make lives better for people with Parkinson's. Whether you are living with Parkinson's, caring for someone with Parkinson's, or working to end the disease, we are here to support you.

To achieve our mission, we pursue three goals: improve care for everyone with Parkinson's, advance research toward a cure, and empower and educate our global Parkinson's community. Today's program is a great example of one of the things we are doing to help us meet these goals.

The Parkinson's Foundation hosts weekly education and wellness programs through our PD Health at Home virtual programming. Join us for Mindfulness Mondays, Wellness Wednesdays, and Fitness Fridays. Most of the PD Health at Home programs are recorded and posted on the Foundation's YouTube channel. You can scan the QR code on the screen to connect to that channel, or find out more and register to attend our live PD Health at Home programs at Parkinson.org/PDHealth.

Part of the Foundation's commitment is to reach every person living with Parkinson's. A critical way we do that is through our partnerships. With more than 110,000 veterans living with Parkinson's disease, the Foundation is proud to have established a formal partnership with the Veterans Administration. This partnership has the overarching goal to improve the quality of life for veterans living with Parkinson's disease and their care partners through greater access to education, resources and support.

I'd like to invite you to visit our webpage and explore the resources offered by the Parkinson's Foundation that can support your navigation of living well with Parkinson's as a veteran. That website is Parkinson.org/Veterans.

Before we dive into the formal part of the webinar, I'd like to outline today's agenda. We'll start with a presentation from the associate director of education, who will discuss the resources available to veterans with Parkinson's. After that, we'll have a question-and-answer session. Then we'll move on to a second presentation providing an overview of VA disability benefits led by a veteran service representative, which will also conclude with a Q&A session.

We're happy to kick things off by welcoming Gretchen Glenn, a dedicated social worker and the associate director of education at the Philadelphia Parkinson's Disease Research, Education and Clinical Center. With a deep commitment to helping veterans and their families, Gretchen specializes in guiding individuals through the challenges of chronic illness. Her work focuses on disease education, supportive counseling, resource coordination, case management and community outreach, all centered around those impacted by Parkinson's disease and related movement disorders.

In addition to her work at the center, Gretchen leads as the chair of the National VA Parkinson's Disease Consortium Education Subcommittee. In this role, she plays a crucial part in providing educational resources to VA healthcare providers, ensuring veterans with Parkinson's disease receive the best possible care. Gretchen's passion for helping others shines through in everything she does. She has dedicated her career to supporting individuals as they navigate the complexities of chronic illness and end-of-life care. Gretchen, we're truly grateful for your time and expertise today. Thank you for being with us.

Gretchen Glenn 00:04:23
Good afternoon, everyone, and thanks for having me present today.

First, I'm going to review what we're going to talk about. I'm going to give you an overview of the PADRECCs and the National VA PD Network. I'm going to go over a little bit about the eligibility for care at a PADRECC or associated site, and then review some of the VA resources available to veterans receiving care at the VA.

The Parkinson's Disease Research, Education and Clinical Centers, otherwise known as the PADRECCs, were established in 2001 by the Department of Veterans Affairs to revolutionize services for the then-approximately 80,000 veterans afflicted with PD. That number has since grown to 110,000, and research is currently happening to obtain a more accurate number.

Each PADRECC is designed to deliver state-of-the-art clinical care, research and education to an expansive geographic region, which we refer to as our service area. All these centers are staffed by movement disorder specialists and researchers. The six VA PADRECCs are located at Philadelphia; Richmond, Virginia; Houston, Texas; West Los Angeles; San Francisco; and a split center in Portland and Seattle.

The National VA PD Network was established in 2003 to broaden the impact of the PADRECCs and promote PD awareness across the VA healthcare system by providing professional networking, mentorship and training to VA clinicians and allied health professionals who have an interest in PD and movement disorders.

Gretchen Glenn 00:05:58
The PADRECC Associated Sites were launched in 2006 to broaden the impact and reach of the PADRECC mission and provide access to specialized movement disorders care throughout the VA healthcare system. The PADRECCs and over 60 associated sites create a hub-and-spoke model of care.

In 2020, the PADRECCs were fortunate to form a partnership with the Parkinson's Foundation. As you can see from this map, many of the PF Centers of Excellence are close to VA PADRECCs or associated sites.

You can see on the map, the blue dots represent the Parkinson's Foundation Centers of Excellence. The red dots represent the six PADRECC centers. The gray dots represent the over 60 PADRECC Associated Sites. As you can see, the PADRECCs sort of outline the United States like a necklace around it. In order to provide care to our veterans across the United States, that was the reason we developed the PADRECC Associated Sites: to make accessing our specialized care easier for our veterans.

Now, to review our PADRECC mission, which is clinical care, education and research.

Our clinical services provide a multidisciplinary team approach, which can include attending neurologists, movement disorder fellows, nurses, nurse practitioners, geriatric psychiatry, neuropsychologists, social workers, pharmacists, PTs, OTs, speech therapists and several others.

The PADRECCs all do diagnosis and treatment of movement disorders; DBS and focused ultrasound evaluations for Parkinson's disease and essential tremor; neurostimulation for DBS, which is adjustments of the DBS device; Botox injections for dystonia, hemifacial spasms, spasticity and other indications requiring injections; neuropsychiatric assessments looking at the cognition of our veterans; disease education; psychosocial assessments; and palliative care discussions, which can include goals-of-care conversations, advance directives and help in treating more difficult complications related to Parkinson's disease.

We can also make referrals to PT, OT and speech therapy.

Gretchen Glenn 00:08:28
Our education program is twofold. We have patient education and professional education. For our patient education programs, we provide monthly virtual support groups and annual symposiums, which are in-person and/or virtual; distribution and creation of print and media resources; and we do a lot of community outreach. You can visit our website that's listed here to see a full listing of our education opportunities.

Professional education consists of the Movement Disorder Fellowship Program, where we train neurologists who want to become movement disorder specialists. We provide two movement disorder webinars a year, which are about four hours in length and are open to any VA clinician interested in learning more about Parkinson's disease and movement disorders. We also provide monthly case conferences and journal clubs for our associated sites to discuss and explore difficult cases that they may be experiencing.

On this slide, this shows you our PADRECC education and support groups that are currently happening. They're open to anyone, so if you're interested in joining, you can reach out to the contact person listed, and they will provide you with the meeting information.

The PADRECCs have a very robust research program. This is not an exhaustive list, but I'm just going to go over some of them with you. We do research in surgical interventions. The VA and the NIH completed the first large-scale trial of DBS, known as Cooperative Study 468, and this was conducted at all seven PADRECC sites. Drug therapies: we are currently doing a multicenter study comparing the antipsychotics pimavanserin and quetiapine.

We do research into gait and falling issues; depression and other psychiatric problems; non-motor fluctuations, such as anxiety, urinary incontinence, sense of smell and sleep issues; and looking at the benefits of exercise in Parkinson's. Basic science or lab studies look at the cause, treatment and hopefully cure for Parkinson's disease.

We are looking at drug-induced parkinsonism and the long-term exposure to antipsychotic medications, such as lithium and Haldol; gene mapping and genetic predictors; biomarkers to help diagnose PD earlier and with greater precision and track progression; and toxin exposures, looking at the environmental chemical and toxin pollutants like pesticides, Agent Orange and paraquat that are especially of interest to our veteran populations. A lot of that research has helped to make Parkinson's a presumptive service-connected condition, which I'll explain later on in this presentation.

Gretchen Glenn 00:11:12
If you're a veteran, how do you access healthcare through Veterans Affairs? Some eligibility factors are service history, VA disability rating, income and other factors. To be eligible, first you have to have served active military, naval or air service and not have received a dishonorable discharge. If you served in the Reserves or National Guard, it depends on your active duty status. If you are a service-connected veteran, you are eligible for VA healthcare through the VA, but you still need to apply for it. The PACT Act has also expanded eligibility for veterans, so it's definitely worth applying to see if you are eligible.

You can go to the VA.gov healthcare eligibility website to see if you're eligible and even apply online.

How does a veteran get care at a PADRECC or associated site? First, you must be enrolled in and eligible for VA healthcare. You would then choose a PADRECC or a PADRECC Associated Site to receive care. You go to our Getting Care page to find a center close to you. You would then ask your VA primary care provider or neurologist to make a referral to a PADRECC or associated site using an inter-facility consult. If you need any help with this process, you can reach out to our national PADRECC network hotline at 1-800-949-1001, extension 205769, and we'll be happy to provide you some guidance.

Before we move on, I want to go over some important VA lingo, and that's what service-connected versus non-service-connected means. These terms are important as we move forward talking about VA resources available, and they're terms that you'll hear often within the VA system.

Service-connected refers to veterans who are disabled by an injury or disease that was caused or aggravated by military service, or occurred while serving in the military.

Parkinson's disease is considered a presumptive condition for some veterans, which means that it's presumed that the disability is caused by military service if you served during specific wartime and/or were exposed to certain toxins.

Veterans who are service-connected receive disability compensation, which is a tax-free monetary benefit, and the amount is based on the determined level of disability.

Gretchen Glenn 00:13:41
Non-service-connected refers to veterans who have a disability or health issue not related to their military service. Veterans diagnosed with PD who do not meet the criteria for a presumptive service-connected condition may be eligible for some VA benefits under non-service-connected status, but typically there's an income limit.

Veterans who are non-service-connected might be eligible for a VA pension, which is a tax-free monetary benefit payable to low-income wartime veterans. Veterans who are eligible for a pension and are also housebound or require the aid and assistance of another person may be eligible to receive additional monetary amounts. It's just important to note that you can apply for VA service connection without enrolling in VA healthcare, but it's strongly recommended that you do so in order to receive all the benefits you are entitled to.

Now we'll talk briefly about military exposures and PD risk. When the PADRECCs were first established, Parkinson's was not a service-connected condition. But in 2010, it became a presumptive service-connected condition for veterans who served in the Vietnam era and were exposed to Agent Orange. In May 2021, parkinsonism was added to the list of presumptive conditions associated with Agent Orange. The exposure locations continue to expand, most recently with the PACT Act adding five new locations, which I'll show you on the next slide.

In 2017, VA announced Parkinson's disease as a presumptive service-connected condition for veterans who were stationed at Camp Lejeune during a specific time period, and this is due to the water contamination. It's important to note that parkinsonism has not yet been added to the presumptive condition list.

In 2013, Parkinson's disease and parkinsonism were recognized as secondary conditions to service-connected moderate or severe traumatic brain injury.

The PACT Act and Parkinson's disease expands VA healthcare benefits for veterans exposed to burn pits, Agent Orange and other toxin exposures.

Parkinson's was not added to the list of presumptive conditions for Gulf War and post-9/11 veterans related to burn pit and toxin exposure. For now, we're hoping that will eventually change. The PACT Act expanded Agent Orange presumptive conditions, including by adding the five additional locations where Agent Orange was potentially stored or present.

Gretchen Glenn 00:16:23
If you're a veteran, how do you go about applying for VA service connection if you believe that you fit in one of those criteria for a presumptive condition? To give you a little bit of an understanding of how the Department of Veterans Affairs is set up, the Veterans Health Administration and Veterans Benefits Administration both fall under the umbrella of the Department of Veterans Affairs, but we function quite separately. VHA, or the Veterans Health Administration, is the healthcare system. VBA is the financial benefits side that also includes financial assistance to veterans.

VHA can provide medical support for VBA claims, but determination of claims is done by VBA only. To apply for VA service connection benefits, you'd want to contact the Veterans Benefits Administration by calling their hotline number at 1-800-827-1000. You can visit their website here, or you can connect with a veteran service officer, which is something we strongly encourage veterans to do to help in the disability claim process because it can be complex and confusing. We're going to have Johnny, a VSO, talk to you shortly about the role of a VSO and how they can help you.

Now, just to give you a brief overview of some of the more common benefits that a veteran following at a VA can receive. Just note this is a highlight of VA benefits; it's not an exhaustive list. There might be different eligibility criteria and co-pays for many of these benefits. They can depend on income, service connection status, level of care required and even what VA you follow at.

All veterans are assigned a primary care team. This also includes the inclusion of the pharmacy benefit. A primary care team consists of a doctor, a nurse practitioner, a nurse case manager and oftentimes a social worker. They are really your director of care. We also have very robust mental healthcare services for our veterans. We provide rehab services such as PT, OT, speech, kinesiotherapy and recreational therapy. We also have contracts with many adult day healthcare centers in our communities that can provide increased socialization and supervision during the day, as well as provide some caregiver relief.

We have contracts with home health aide programs to provide assistance with personal care, such as bathing, dressing and grooming; respite care services, again, to give care partners a break; and the home-based primary care program, which is for veterans who have great difficulty or are no longer able to leave their home for care. They will bring the primary care team to you. You have to live within a certain mile radius of a VA medical center to be eligible for this. They have everything from doctors, nurse practitioners, nurses, social workers, pharmacists, psychologists and rehab specialists that can all come to your home if needed.

Gretchen Glenn 00:19:25
Hospice and palliative care can help with goals-of-care conversations, difficult treatment decisions and advance directives, as well as end-of-life care.

Prosthetics equipment, also known as durable medical equipment, can range from anything from button hooks to reachers to stair glides, to walking aids such as walkers, wheelchairs and scooters, and even having grab bars installed into your home. There needs to be a medical justification for the equipment. It oftentimes requires an assessment by a physical or occupational therapist. But we always recommend to our veterans to ask us or your primary care team. If you are in need of any equipment, let us have an assessment done, determine the need, and we can order it for you if we're able. If you purchase it on your own, the VA won't reimburse you for it.

Veterans who are 70% service-connected or more may be eligible for VA nursing home placement or payment at one of our community nursing homes.

Then we have our caregiver support program, which has two levels. There's the general caregiver support program, which is the core program that provides peer support, mentoring, skills training, coaching, telephone groups, online programs and referrals to resources for caregivers of veterans. The second part of that program is a comprehensive program, which offers enhanced clinical support and services for caregivers of eligible veterans who have serious injury or illness and require in-person personal care services, among other various requirements.

Caregivers eligible for this program also receive a monthly stipend to be their veteran's paid caregiver. You can contact the National Caregiver Support Hotline number listed here to learn more about that program and if you're eligible. To learn about any of the resources or benefits that I mentioned above, you can ask to speak to your VA social worker, who can help assess what your needs are, what might be available at your VA, and what you might be eligible for, and help facilitate those referrals.

Gretchen Glenn 00:21:38
How do the PADRECCs and the Parkinson's Foundation Centers of Excellence work together? We do a lot of co-practice. Co-practice really means that veterans who are eligible for movement disorder care at a VA do not need to give up their community neurologist. That's what we refer to as co-practice. The PADRECCs and the Centers of Excellence are really about working together to ensure veterans are receiving the best possible care with access to all eligible benefits. If you have a community neurologist that you have had a relationship with for a long time, we don't expect you or ask you to give up that community neurologist. But we do ask that you pick one person, either the community neurologist or the VA neurologist, to make the medical decisions for you.

That's just for a safety reason. We don't want to have too many hands in the pot messing around with your treatment. If you decide to keep your community neurologist, you just need to come to the VA at least one time a year to receive your VA benefits, such as medications, durable medical equipment, in-home support programs and all of those services I mentioned previously. That goes the same for your primary care provider. If you've had a relationship and followed with a primary care provider for many years, we don't ask you to necessarily give up that provider, but again, you must come to the VA at least one time a year to maintain your benefits.

We do shared fellowship programs with our Centers of Excellence and our university affiliates. For example, at our Philadelphia VA, we have four fellows who rotate, spending half their week with us at the Philadelphia VA and half their time at the University of Pennsylvania. We do a lot of joint patient education programs together.

Our physicians have shared appointments at the university affiliate, many of which are PF Centers of Excellence, and we do a lot of research collaboration. Again, we are interested in working together to ensure that our patients receive the best care possible. We're not interested in taking anybody's patients away from them. It's all about getting the care and the benefits for the patient.

Gretchen Glenn 00:23:47
I know that was a lot of information. Who can help you with that? Who can help sort a lot of that out for you? VA social workers can assess your needs and make you aware of the availability and eligibility of services, and we can help advocate for you.

I always refer to myself as a resource person. If I don't know the answer, at least I can try to help point you in the right direction. If you're receiving care at a VA, you should always ask to speak and make a connection with your VA social worker.

VA veteran service officers can help with applying for or increasing VA disability benefits. This is the service connection benefits. They can help with the process, which can often be complicated and sometimes overwhelming. The VSO can monitor your claim and, again, advocate for you. Johnny is going to talk to you in a little bit about the role of the veteran service officer.

To highlight the partnership between the VA and the Parkinson's Foundation again, which was really formed to improve the health, well-being and quality of life of veterans living with PD, we developed many resources together. There's a veteran-specific webpage, which is Parkinson.org/Veterans, where you can find information on PD and veteran benefits, stories from veterans living with PD, and connections to veteran-specific events such as these webinars. We also have fact sheets, and we have a newly updated Veterans Guide that really goes over all of what I just spoke about today in a little bit more detail and has all the links to the different webpages and contact numbers that might help you in navigating the VA system.

Here's just a listing of additional resources from the Parkinson's Foundation. There is the National Helpline, which we have done some training with on VA and veteran benefits. We work very closely with them, so if a veteran is having a hard time connecting to a VA, the Helpline staff is more than willing to reach out to us, and we'll help problem-solve and try to break down some of those barriers.

I suggest that you check out some of these other valuable resource information from the Parkinson's Foundation.

Gretchen Glenn 00:26:06
Again, this is a list of important contact information. All these slides are going to be shared with you at the end of the presentation, and many of them are the links that were presented in the presentation today to help you navigate through the VA system.

Thank you, everyone. Now I'm going to invite my colleague Emily Hall to join me for our Q&A session.

Emily Hall 00:26:30
Hi, everyone.

Crista Ellis 00:26:33
Welcome back, and thank you, Gretchen, so much for pulling us through how to navigate these benefits with the VA and collaboration with the Parkinson's Foundation, and also highlighting the partnership that does exist and is impactful in supporting our community of veterans who are living with Parkinson's. I appreciate the way that you've outlined this for our community and knowing that we can revisit it again once we post the recording later on.

The first question is from Dan and Donna, and they ask: what types of home modifications can I get support from when the time comes?

Gretchen Glenn 00:27:12
Through the VA specifically, if you're a veteran and you're enrolled in the VA healthcare system, there are grab bars that can be installed into your home; stair glides; ramping, if that's necessary to help getting in and out of the home; and there is a HISA grant, H-I-S-A, which is a one-time lifetime grant that a veteran can apply for that could make the bathroom more accessible. We know getting in and out of the shower and tub can be difficult. You could get a grant. It likely won't pay for all of it, but it could go toward the renovation of a bathroom for putting in a walk-in shower or a roll-in shower.

There is a lot that we can offer. A lot of times, what we would do is send out a physical or occupational therapist to your home to assess your home to determine what modifications would be needed and what type of equipment would be needed. They would contact us, and then we could see what we could get through the VA or if there's a certain grant that could be supportive for that.

Emily Hall 00:28:14
Yeah, and I would definitely agree with consulting with your rehab or therapy team too, because I know here through Richmond, one of the rehab therapists has to put in that referral to prosthetics for the HISA grant, with the medical justification of what's needed. But also, as Gretchen said, it doesn't necessarily always cover everything that you need done. Sometimes what people will do is use that grant and also apply for a community grant.

If you check with your local VA social worker and check in your community if there are different programs. For example, in Virginia, we have Granting Freedom, which is a specific grant for Virginia veterans too. Sometimes people will use that and the HISA grant, and that can cover a lot of the cost.

There are a couple of other disability housing grants that are a little bit more intensive and definitely a lot more difficult to get. That's available on the VA.gov site. They're called disability housing grants. These are applications submitted directly to VBA, the Veterans Benefits Administration. They have a lot of very specific clinical criteria to meet in order to qualify. I would say the HISA grant is typically the best way to go. The other two grants are a lot more difficult.

Crista Ellis 00:29:45
Thanks, Emily, for highlighting that there are grants available to support types of home modifications that Dan and Donna were asking about. I appreciate you both, Gretchen and Emily, for highlighting the types of modifications that could be provided through VA benefits and also giving us another opportunity to explore resources that could further support those home modifications. Bill is asking us: how is research coordinated across the PADRECCs to optimize results?

Emily Hall 00:30:18
I know, and you can correct me if I'm wrong, Gretchen, because this isn't my realm as much, but I believe each PADRECC has a research coordinator, correct?

So they are running their own studies either locally or nationally, and they all communicate with one another. I know the big study that I'm aware of is the Vet-PD research study that they're doing also with the Michael J. Fox Foundation. But I'll let Gretchen speak a little bit more to that too.

Gretchen Glenn 00:30:53
No, you're right.

For each PADRECC, each mission has an associate director attached to it. There is an associate director for research who really oversees the research going on locally. For the ones that are being done more nationally, they do meet, either once a month or bimonthly, and have a research call where all PADRECCs and associated sites who are doing research can come together and discuss what research they're doing and opportunities for maybe collaborating together.

As we mentioned, there have been some collaborative studies, and they're strictly monitored and really are working together. When we are having a national meeting, we do have a biannual network meeting. We're having one next week. That is one of the topics as well: talking about research and the possibility of collaboration in the future. How can we further collaborate together for the research projects for our veteran population?

Crista Ellis 00:31:54
I'll add that optimizing results in research for Parkinson's and veterans requires participation from veterans with Parkinson's. I'll just advocate for participation in clinical research at our PADRECCs and centers across the globe. Thank you for the question, Bill.

Jan is asking, can you talk more about financial considerations for care? What are the income limits?

Gretchen Glenn 00:32:22
For VA specifically?

Crista Ellis 00:32:25
Yeah. When you're considering financial care, financial considerations for VA benefits, are there income limits to receiving the benefits from the VA? Restrictions on income?

Gretchen Glenn 00:32:39
If you're a non-service-connected veteran, to be eligible for VA healthcare, there is an income limit, and I'm not exactly sure what that number is. Do you know, Emily?

Emily Hall 00:32:48
I was looking it up and having trouble finding the link, but everyone's income limits differ based on where they live. I was trying to find the actual website where you can look it up because somebody's income limits as a single person versus a dependent, or living in Virginia versus living in California, are all very different. They do it based on that, and they do change annually.

They look at your income limits and will see if you're eligible for care. In reading the information as well, I know they're trying to lower that a little bit, lowering the income limit because there have been a lot of veterans in the past who have, quote unquote, made too much money to qualify for care. So they're gradually trying to work to lower that income limit so more veterans can use the VA for care, but sometimes that also means that they might have to pay a copay to get care.

The most important thing is just making sure that you're updating your income as much as possible. Try and do it at least annually because that determines a lot of eligibility for different services.

As far as benefits and income and things like that, I know Johnnie is going to be presenting in a little bit, but to my knowledge, there's no income limit when you're applying for a service-connected disability condition. Now, the VA pension is an income-based benefit. In that, they will look at how much money you're making, and that could potentially determine the benefit payout.

Gretchen Glenn 00:34:42
All of it is listed on the website, and you can go to the VA apply for VA healthcare page. It gives you the breakdown on there, and you can actually start plugging in your information to see if you're eligible. I always tell people: just apply and let the VA make the determination if you're eligible or not because there are many factors that play into that. Even if you had a copay for care, even if you were eligible for VA and had a copay, it would be about $20 for primary care and $50 for a specialist.

If you have private insurance on top of that, not Medicare, but private insurance on top of that, they can bill part of that to your private insurance, so it may be less. I just always say, if you're a veteran, apply for VA healthcare. Let them make the determination to see if you're eligible.

Crista Ellis 00:35:36
Thank you, Gretchen. Really appreciate it.

Emily Hall 00:35:39
I've got some links for you all, if you're able to share them too.

Crista Ellis 00:35:44
Absolutely. Thanks for sharing those links, Emily. Feel free, Jan, and anyone who's interested in income considerations, to go ahead and click those links in the chat, and it'll pop open a new tab on your browser for you to browse after our program today.

Our viewer Jonathan shares that they live in the Florida Panhandle. The closest VA center with PD support is four hours away, one way. How is care provided to veterans like me?

Gretchen Glenn 00:36:12
We do a lot of telehealth. We have a lot, even prior to COVID. The VA was one of the leaders in providing telehealth care to veterans who were in more rural areas. If a veteran isn't able to get to us or an associated site, you can ask your primary care provider to reach out to your local site, or you can contact us directly and we can work with you to try to get you connected to have even a video visit with one of our PADRECC or associated sites. We are happy to do that as much as we can.

Crista Ellis 00:36:48
I would agree.

It's a testament to being connected here in the virtual world. We're all doing some form of health education here and empowering yourself to get connected through more support and quality care by way of the World Wide Web. So it is possible.

Thank you for highlighting that.

Gretchen Glenn 00:37:07
We're always looking and spreading awareness across the VA system for other providers in other areas so that we can expand our associated site locations as well.

Emily Hall 00:37:18
Mm-hmm.

Crista Ellis 00:37:20
There are a couple of specific questions in here related to service-connected and non-service-connected. Franz is just asking, what does non-service-connected mean? What are benefits for non-service-connected veterans?

Emily Hall 00:37:33
I know Gretchen touched on this in her presentation, so she can probably say it verbatim now at this point, but it essentially means that that individual veteran does not yet have a rated service-connected disability condition. That can range anywhere from 0% to 100%. I have seen where somebody has had a 0% disability rating before, but that's because that condition they're no longer getting necessarily treatment for. Non-service-connected just means that they don't currently receive, they're not... You can speak on it.

Gretchen Glenn 00:38:13
That's okay.

It's a veteran who's eligible for VA healthcare. However, they don't have an injury or illness that is connected to their service time. The disability rating for a service-connected veteran is related to if you served and if you had an injury or were diagnosed with an illness while serving active duty, or have one of the presumptive service-connected conditions, like Parkinson's related to Agent Orange.

Non-service-connected veterans, so we have a lot of non-service-connected veterans who have Parkinson's disease but were never in an area where they were exposed to Agent Orange, cannot be service connected for their Parkinson's if they were never in an area where Agent Orange was located. But they are still eligible, based on the income limits, to receive care at a VA.

Being service connected not only gets you the disability compensation check each month, which is the monetary benefit, but it also may give you more. You wouldn't have a copay for your care. If there was ever a hold on home health aide, if it was only eligible for a service-connected veteran, you would be eligible for that. For nursing home level of care, if that's needed, you have to have a service-connected rating of 70% or more to be eligible for that.

So being service connected may give you access to additional benefits over somebody who's non-service-connected. But you can still receive medical care as a non-service-connected veteran. You just may have a copay for some of those things. I hope that made sense. It's a confusing process.

Emily Hall 00:39:47
Yeah. That was a really good explanation.

Gretchen Glenn 00:39:50
Thank you.

Crista Ellis 00:39:51
Thank you, Gretchen. That did answer Linda's question specifically on: are nursing home services only available to service-connected veterans? I believe you said yes, only available to service-connected veterans.

Gretchen Glenn 00:40:03
Yes.

Emily Hall 00:40:04
So 70% or higher, specifically, or I think that there are some, yeah, 60% and unemployable, but that gets even more complicated.

Gretchen Glenn 00:40:15
I just say, if you think, just talk to a VA social worker. They can pull up your records, sit down with you, and go over all of this with you on a personal basis.

Emily Hall 00:40:25
That's eligibility through the VA. If you are eligible for Medicaid, like state Medicaid and different things like that, you still have opportunities for long-term care, just not necessarily covered by the VA. In planning for the future and thinking about the future, that's why it's very helpful to try and start pursuing, registering, and applying for things early so that when the time comes, if you do need long-term care, you already have everything kind of in place. You have a plan set up for the future.

Crista Ellis 00:41:04
Thanks, Emily. Our next question comes from Suzanne, and they ask, what's the difference between a VA clinician, a VA social worker, and a veteran service officer?

Gretchen Glenn 00:41:16
A VA clinician, I would think, would be more of your primary care doctor or nurse practitioner, or your movement disorder specialist who's managing your medical care. A VA social worker, that's Emily and me, we do more of the resource coordination, looking at what you might be eligible for through the VA, doing supportive care and disease education, talking about planning for the future and long-term care planning. I like to refer to myself, and I'm sure Emily does as well, as your resource person.

If I don't know the answer, I can at least try to find it for you or point you in the right direction. A veteran service officer works on, and so we work in the medical side, under VHA, the Veterans Health Administration. Veteran service officers fall under the Veterans Benefits Administration, which is the financial benefit piece of the VA. They are really the experts in applying for compensation disability benefits, housing grants, vocational resources for veterans who are newly coming out of the military, accessing their education benefits, etc. That's the veteran service officers, and that's really their area of expertise.

Emily Hall 00:42:35
Mm-hmm.

Crista Ellis 00:42:38
Thanks.

A question I think is really important to ask as we think about additional services provided through the VA: who do we contact for occupational therapy or physical therapy services through the VA? This question comes from Paula.

Emily Hall 00:42:55
I would say start with your local VA clinic because your primary care can definitely request that. Now, if you want to try and have someone that's a little bit more Parkinson's specific or maybe certified in some of those different programs like LSVT BIG, even for speech therapy, like SPEAK OUT!, PWR! Moves, all of that.

If you can't really find it locally, a lot of the PADRECCs, I know specifically for Richmond, all of our therapists actually do telehealth too. I know, as crazy as that might sound, thinking about physical therapy done via telehealth. But for certain patients, it does work really well. Sometimes what they can even do is a couple sessions of education or ordering specific equipment. Because the great thing about telehealth, if you're talking to an occupational therapist, is they're automatically beamed into your house. They can see what you need, they can look at you, take measurements of doorways, and help order specific pieces of equipment and things you might need.

If you're having trouble locally, start with your primary care provider. But if you are connected to a PADRECC center, trying to find someone who's a little bit more specialized with Parkinson's might work in your favor.

Gretchen Glenn 00:44:18
If you can't get it through your local VA, then your primary care doctor through the VA could see about getting it through VA Community Care, which is if a VA can't provide it, we can provide that care through a contracted provider in the community that might be closer. Or if you live three hours away from a PADRECC that has somebody that can do LSVT BIG, but you have a rehab that's two miles down the street from you, if we have a contract with them, you might be able to go get that care closer to home than traveling three hours, which is not reasonable.

Bottom line, talk to your primary care provider. If you're hooked into a PADRECC, talk to your PADRECC or associated site about therapy, and they'll help get you connected and get you started.

Crista Ellis 00:45:16
Thanks, Emily. Thank you, Gretchen.

One of our anonymous viewers is asking, there are accredited and non-accredited VSOs. How do we know the difference?

Emily Hall 00:45:27
I bet Johnnie will be able to tell you for certain. But if anyone ever tries to say you need to pay them to apply for a benefit, or sometimes I've talked to another service officer before, there are some people who will have them apply, but then somewhere in the agreement it says if they're awarded the benefit, they give a certain percentage of their benefit to that person. Those are not people that you want to utilize.

Unfortunately, because of the PACT Act expansion and just the nature of the VA and these benefits, a lot of people target veterans and try to get a little bit of money. The VSOs that are accredited, you can find them on this website as well. I'll try and find the link. I definitely prefer, or refer to, your state VSOs very often, but there are a lot of other ones through Disabled Veterans, American Legion, and those as well.

Sometimes if people apply and they're denied, they might immediately seek legal representation, but then you would have to pay those fees too. If you work through some of these VSOs, and like Johnnie will probably talk about as well, they actually have a legal team that works with them that can help through the appeals process. If anyone ever tries to ask for money for you to apply for benefits, don't go with them. You can find someone. It is a free service. It is free for you all. Just remember that.

Gretchen Glenn 00:47:20
A veteran should never have to pay for applying for benefits.

Emily Hall 00:47:25
Mm-hmm. Bottom line.

Gretchen Glenn 00:47:28
Bottom line.

Crista Ellis 00:47:29
Thanks, Emily, for explaining that and Gretchen for simplifying it.

We have time for two more questions. Brittany is a social worker who works with Parkinson's patients, and they are curious if it would be best for her to refer patients wondering if they're eligible for VA benefits to a VSO or the Parkinson's Foundation Helpline just to streamline the process for them.

Emily Hall 00:47:54
Honestly, I think a VSO would probably be a little bit easier because that way it would just cut down the communication line and then you can go straight to the source. So that would be my recommendation.

Gretchen Glenn 00:48:08
Same.

Crista Ellis 00:48:10
I agree.

Our last question for this portion of the Q&A comes from Louis, and they ask, are there any disabilities that the VA recognizes that's connected with the cause of Parkinson's? I believe you alluded to some of this in your presentation, Gretchen.

Gretchen Glenn 00:48:29
We don't know 100% what causes Parkinson's. That's the biggest problem. The toxin exposure, there was some research that was done, and it wasn't big, but it was enough for the VA to say we can't say that Agent Orange or the water contamination didn't cause Parkinson's. So we're going to put it on the presumptive service-connected list.

That's a hard question to answer because we don't really know the direct cause of Parkinson's disease. What we do know is that it is on the presumptive list for Vietnam-era veterans who were exposed to Agent Orange or were in one of those locations where Agent Orange was considered stored, or if you worked on certain airplanes. That's Parkinson's and parkinsonism.

For veterans who were the Marines who were stationed at Camp Lejeune during a specific time period who may have been exposed to the water contamination, it's presumed if you were there for 30 consecutive days during those certain years that you were exposed to the contaminated water. Parkinson's disease is on the presumptive list for that, not parkinsonism, just Parkinson's disease currently. But it took many years for them to add parkinsonism to Agent Orange, so I'm hopeful that one day parkinsonism will be added to Camp Lejeune as well and maybe even expanded further.

It's not considered presumptive for burn pits, which is what we have a lot of veterans asking about because the Gulf War veterans are now coming into that age of diagnosis of Parkinson's disease, and that's a lot of what people were exposed to: the burn pits. It's not there yet, but hopefully with continued research we'll get there. That's my hope anyway.

Emily Hall 00:50:20
Yeah. I was going to say just continue to keep your eye on the news and things coming out because, like she said, parkinsonism was just added a few years ago. I think they're going to continue to look at different areas where people served, what things were there in terms of toxins or exposures, and then maybe start making some more research connections in the future.

Gretchen Glenn 00:50:49
There are environmental health examinations that you can register with. Each VA, if you contact your VA's environmental health coordinator, I believe is the name, you can get your name in a registry so that if down the line it comes up that maybe you're service connected, you have that examination already in the system and it can maybe help with making a retroactive claim.

Crista Ellis 00:51:21
Thank you, Gretchen.

Gretchen Glenn 00:51:23
I always say, if you think your parkinsonism or Parkinson's was related to your service connection, or you think that there was a possibility that you were in an area where Agent Orange was present, just apply. Let VBA make that determination. It is a process, but it might be a process that works out for you in the future.

Crista Ellis 00:51:47
Thank you, Gretchen.

Gretchen Glenn 00:51:49
Thank you.

Crista Ellis 00:51:50
Thank you for sharing your valuable time and expertise with us today. If you had a question that was not answered, please reach out to the Helpline by calling 1-800-4PD-INFO or emailing our Helpline at Helpline@Parkinson.org. I hope everyone has gained new insights and feels empowered to apply this knowledge to enhance your quality of care and strengthen your connections.

Now we'll move into the second half of today's programming, where we will be provided with an overview of VA disability benefits. Johnnie retired from the Army in March 2016 after 24 years of dedicated service. She began her journey with the Virginia Department of Veterans Services in September 2018 as a veteran service administrator and was promoted to veteran service representative in March 2019. Throughout her career, Johnnie has been committed to assisting departing active-duty service members, veterans, and surviving spouses in securing the compensation and pension benefits they deserve. Johnnie, we're truly grateful for your time and expertise today. Thank you for being here.

Johnnie Bourque 00:52:55
Hi. Thank you for having me. I do appreciate this. I learned a lot from Miss Gretchen and Miss Emily. Thank you.

I am a veteran service representative for the state of Virginia. Next slide, please.

Crista Ellis 00:53:17
Okay.

Johnnie Bourque 00:53:19
What is a veteran representative? What do we do? We help file claims for veterans and their family members, and we also help file claims for departing service members. We will have access to your VA file once we do the representation form, and then we can actually review decision letters that the VA gives you. That's one piece.

Someone asked about an accredited VSO in the last piece. An accredited VSO will have access to your VA file, and yes, they will not charge you money. We do not charge money at all.

We as VSRs can communicate with the VA on your behalf. If you have a question and you don't want to speak to a VA representative, we can call on your behalf and ask that question and get the answer for you.

We provide free services for veterans and their family members. We also have to complete training and pass an accreditation test. That's one way to make us accredited. It's roughly a 120-question test, and we do have to pass it to receive our accreditation through the VA itself.

Our VSRs work with American Legion, Disabled American Veterans, VFWs, AMVETS, Wounded Warrior, and those all have VSOs and VSRs. Each state by law is required to have either a state-level VSO or county-level VSO. That is mandatory, that is law. Every state has a veteran service representative, an organization assigned to that state, whether it's state level or county level.

Our purpose is designed to compensate veterans for diminished work capacity as a result of a disability that occurred in military service. The condition that you are trying to claim has to have happened while we were on active duty or be well documented in your military medical records. But in this case, Parkinson's due to Camp Lejeune water contamination or Agent Orange exposure is presumed.

It is presumptive. I don't want to say it's automatic, but it's kind of automatic, especially if you were boots on the ground in Vietnam and in the locations designated by the VA. You must be a veteran. You must provide a DD 214 to be eligible.

The requirements are related to in-service injury, illness, or hazardous exposure. Disability compensations can open doors to additional benefits such as healthcare, as Miss Emily and Miss Gretchen spoke of earlier, and also the caregiver support programs and stuff like that.

Johnnie Bourque 00:56:43
There is no time limit to file a claim after service. We still have veterans today that are Vietnam veterans who are filing. We even have some that are a little bit before Vietnam who are still filing claims, and the VA is processing them. There is no time limit whatsoever.

When you come to us, to a VSR, we will complete all the paperwork for you. You will sign the documentation. You will give us your supporting documentation. For Parkinson's, I should say for any presumptive of Agent Orange or Camp Lejeune, you need a current diagnosis of that condition, whether it's Parkinson's, hypertension, et cetera. A current diagnosis is all you need for a presumptive. You do not need a nexus letter.

Disability ratings are based on the current severity of that condition that you have. It is by law, 38 CFR Part 4, where the rating schedules are given.

Like it was spoken of earlier, the ratings are zero to 100%. Even if you have a rating of zero, you can receive treatment from the VA. If it does get worse, you can request an increase.

Ratings are monthly compensation for the rest of your life. Age is not considered in the worsening of the disabilities. Please keep that in mind.

Payments are tax-free, assigned based on your combined rating, and paid for the rest of your life. Next slide, please.

Disability compensation requirements for service connection: an in-service event and/or your exposure, a current diagnosed disability, and a nexus. If you're not applying for a presumptive condition due to Camp Lejeune or Agent Orange, you do need a nexus. If you are filing for a presumptive, you do not need a nexus. You just need that current diagnosis.

Johnnie Bourque 00:59:15
Parkinson's is a neurological condition, convulsion disorders, diagnostic code 8004. This diagnostic code automatically is a minimum of 30% for that condition. But it does not take into account the symptoms associated with it. So the majority of the time, Parkinson's is rated at 30%. But once we know Parkinson's always gets worse, you start to get your symptoms, and as you get more symptoms, you file for those symptoms. That will be on the next slide. Next slide, please.

The symptoms of Parkinson's, we have this little slideshow. We file Parkinson's itself, and then, say a couple of months later or a little bit later, okay, you're now having symptoms of Parkinson's. You're having the depression, you're having the constipation, the difficulty speaking, the excessive salivation or the tremors.

If you want to file for those conditions, you go back to your doctor, your neurologist, I believe it is, the doctor you see for your Parkinson's. You say, “Okay, doc, I'm service connected for Parkinson's, but now I'm showing more of the symptoms: the constipation, the tremors, the difficulty speaking, difficulty feeding myself, difficulty swallowing.” Have your doctor write up another letter, another memo, saying, “I am treating Mr. Veteran. He is diagnosed with Parkinson's disease. He now has symptoms of Parkinson's,” and have your doctor list those symptoms: depression, anxiety, whatever it may be. You take that memo back to your veteran service representative, and your veteran representative can do another claim for you saying, “He now has,” we call it residuals, “residuals of service-connected Parkinson's, whether it's constipation, tremors, depression.”

We would list all that on the 526EZ that we fill out for you, and then we would submit that with the memo from your doctor stating that he now has these symptoms, and that will add to your 30%. So that 30% that was just for Parkinson's is now possibly up to 100% because you've added all those other symptoms, and it adds to your rating disability.

Now, the rating disabilities of the VA, I really don't want to get into it, but if you are service connected with the VA, you know 10 plus 10 with the VA equals 19. So it's not math. It's not straight math.

I can't really explain it because I'm not an engineer, but we know how to read our rating disability chart, and then we can kind of explain why 90 plus 10 equals 91 and not 90 plus 10 equals 100. But that's a whole different story. I just wanted to put that out there. These are our references. For the VSO, I do have the same as Ms. Emily had: VA.gov, “Get help from an accredited representative,” “Find a rep.”

There is a little search bar. You can type your state, like “New York VA rep” or “VA New York VSO,” and then New York will pop up. So you can do it that way. Or you can click the link right there, and then it'll bring up your state and the representative near you.

Okay. I know that was very fast. I do apologize. But what are your questions?

Crista Ellis 01:03:34
Thanks so much, Johnnie. I appreciate it. I know it's challenging to navigate conversations and receiving benefits through the VA, and so grateful that there are people like you who are helping our community receive the benefits that they so deserve because of their service to the country. So thank you for doing what you do, and know that it's really appreciated and certainly acknowledged by the Parkinson's Foundation.

Johnnie Bourque 01:04:03
Thank you. Thank you.

Crista Ellis 01:04:05
I'm curious. One of our viewers, Brittany, is asking what's the best way to locate a VSO near you? I think you touched on it just now with that link. So simply Googling a VSO near whichever city, what would be the best way that you would recommend, Johnnie?

Johnnie Bourque 01:04:22
If you want to make sure it's accredited, you would want to use the VA.gov website. There is a little search bar at the top with a magnifying glass. That's where you would want to type in VSO and your state, and then that would populate right there. We would know the VA has already vetted them. And then, of course, we don't charge.

Crista Ellis 01:04:50
Thank you, Johnnie.

I did just receive a question that seems very specific to this particular individual's circumstances, and I would recommend to this individual, who writes that they're an 11-year active-duty U.S. Navy veteran, to contact their VSO, just thinking about if there's any hope for their situation to have a closer evaluation of being connected to their injuries and limitations.

I'm not going to read the whole question to you, Johnnie, because it is very specific and I believe outside of both of our practices to address and the objective of today's webinar. So I really appreciate your patience with me, my friend, and want to direct you to the resources that are most helpful for your question.

Does anyone else have any questions related to being connected with a veteran service representative or officer while we have Johnnie here to support our navigation and receiving benefits?

We'll just pause for a moment, Johnnie, while people write in.

Gwen, I see your question about cognitive challenges associated with Parkinson's disease. I'll invite you, Gwen, to tune into our mental health webinar, where we will dive deeper into the mental health implications of Parkinson's disease, and that program will be in February. We also have lots of resources related to general Parkinson's information and education on our website.

Johnnie Bourque 01:06:25
The VA does—I'm sorry. The VA does service connect for cognitive conditions when it comes to Parkinson's.

Crista Ellis 01:06:35
That's really helpful to know. Thank you for sharing that, Johnnie. One of our viewers is asking, “Should I put a claim in if I'm already at 90% service connected for mental health and sleep apnea?” Is that something you can address, Johnnie?

Johnnie Bourque 01:06:49
Yes, ma'am.

First, for behavioral health, if you had those conditions while on active duty or if you were in combat, the VA may service connect the behavioral health. The sleep apnea is a little more tricky because everyone has sleep apnea, but our advice is if you did not have it in service, and you were diagnosed way later, you never went to medical and you didn't complain of sleep issues, more likely than not, the VA may not service connect.

If you are service connected for behavioral health and your psychiatrist is willing to write a nexus for your sleep apnea secondary to your service-connected behavioral health, you can try that way. But the VA is, I don't want to say picky, but they scrub sleep apnea claims a little bit more than a regular claim, if that makes sense.

Crista Ellis 01:07:55
What would you recommend to our friend here who's inquiring about sleep apnea? Where would they turn to get some answers about that?

Johnnie Bourque 01:08:02
Get your sleep test. Get your current sleep test. Get your strong nexus letter from your doctor that you see for sleep apnea. You can write your statement on sleep apnea. If you were married or had a roommate or something and you still speak with them, they can write a statement on your behalf too.

It's just that strong nexus letter that you will need from your doctor that states more likely than not, your current diagnosis of sleep apnea is related to your military service.

Crista Ellis 01:08:36
Jane is writing in, “I'm still confused about benefits for non-service-related Parkinson's. Where do we start?”

Johnnie Bourque 01:08:46
So they are not service connected? Sorry. Am I understanding they are not service connected for Parkinson's?

Crista Ellis 01:08:54
They don't describe themselves as being service connected or not, but confused about the benefits related to being non-service connected.

Johnnie Bourque 01:09:05
Non-service connected, like Ms. Emily and Ms. Gretchen spoke of earlier, you can receive health care. You may have a small copay. But as for receiving money on a monthly basis from VA, you will not receive that. That's for service connected only.

Crista Ellis 01:09:26
Thank you for sharing, Johnnie. Appreciate you clarifying that.

James is asking us, “How can we find out what PD symptoms have been used to assign our current rating and what our current rating is?”

Johnnie Bourque 01:09:42
You would contact the 1-800 number or your VSO. Your VSO would have access to your VA file and can see exactly, so your Parkinson's 30%, the tremors are 10% or whatever it may be. Your VSR can look at your VA file and tell you exactly what your percentages are for.

Crista Ellis 01:10:07
It's very helpful. Thank you.

We'll be able to offer that phone number at the end of the program. You'll all receive resources and a link to a full white paper of resources and links to connect to. Thank you, Emily, for continuing to drop some resources in the chat as well.

Johnnie, one of our viewers, David, is asking what benefits are available for spouses of veterans.

Johnnie Bourque 01:10:32
As long as the veteran is alive, for VA purposes, they will go to the veteran. And depending on your rating, I should say that too. If you're 100% P&T, then your spouse may be able to get VA health care. But that depends on your rating.

Once the veteran passes, and if the veteran passes from a service-connected disability, as long as that is listed on the death certificate, the surviving spouse will then be eligible for what's called Dependency and Indemnity Compensation, DIC. But his service-connected issue has to be on the death certificate, or he has to be rated at 100% P&T for 10-plus years.

Crista Ellis 01:11:33
Thank you for outlining those benefits for us, Johnnie. I know it can be a little bit confusing, which is why people like Johnnie are here to serve us and answer these questions on a more personal level. So I strongly encourage each of you to find your VSO nearby and start that dialogue with someone who's able to support you through navigating these questions, the systems, and being connected with the services that you deserve.

We have another question. I'm not sure who asked this one, but why is it not feasible anymore to obtain a copy of one's DD 214 at CVSOs? What options are there now for doing this?

Johnnie Bourque 01:12:24
So if you're trying to gain your DD 214, you can go to archives.gov. G-O-V. Do not go to archives.com because .com will charge you. So please go to archives.gov. But if your VSR has a copy of your DD 214, I know we can, for the state of Virginia. I can't speak for other states. If we have a copy of your DD 214, we can give it to you, of course. Or go to archives.gov.

Crista Ellis 01:13:00
Archives.gov. Thank you. Can you say what a DD 214 is?

Johnnie Bourque 01:13:06
It's your discharge paperwork that you receive once you're out of the service. It tells you your time in service, your rank and your character of discharge. It says your awards and stuff like that. For Vietnam vets, it's important that they have the Vietnam Service Medal, the Vietnam—there's another Vietnam citation on there too. That's how the VA knows, oh, they were in Vietnam. So, yes.

Crista Ellis 01:13:40
Johnnie, are you aware if a service member of the Navy, six years active duty, are there any benefits for hospice?

Johnnie Bourque 01:13:54
I would have Ms. Emily or Ms. Gretchen answer that because that's more health care. Possibly? I apologize.

Crista Ellis 01:14:04
Not at all. I appreciate your ability to acknowledge where you don't have the answers. Gretchen, I see you're here. So, do we know if there are benefits related to hospice?

Gretchen Glenn 01:14:15
There are. If you're eligible for VA health care and you receive VA health care, we do have hospice teams through the hospital. Many VAs, not all, but many VAs have hospice units, oftentimes at their nursing home. That's where we have ours in Philadelphia. There is also an option to have hospice covered from the VA if you're at home too, but you have to get all that authorized through your primary care team or, if you're affiliated with a PADRECC, it has to all get approved through the VA before they'll start paying for it.

If that's a question, talk to your VA health care provider. They'll connect you most likely with a social worker and possibly the palliative and hospice team at your VA to determine if you're eligible for it. But it is part of the benefit.

Crista Ellis 01:15:12
Feel free to stay on, Gretchen. We have an interesting question that I think would be curious to ask out loud. One of our viewers is sharing, “My partner's service record does not reflect any service because he was on top secret assignments. Can the VSO gain access to those secret assignments? He's been unable to obtain benefits for his Parkinson's, which he believes is connected to those assignments.”

Gretchen Glenn 01:15:44
That's a tough one that we hear a lot.

Johnnie Bourque 01:15:47
Yes. Not that I can think of. Maybe they're declassified by now, so maybe he can contact his branch of service, because I'm sure they have something on record if it's declassified by now. But as for public, no. It has to be declassified. Not that I know of.

Gretchen Glenn 01:16:12
It is a challenge that we've heard. You're not alone. I've heard this challenge before, and unfortunately, it sounds like Johnnie and I don't have a good way to direct you except to keep trying.

Crista Ellis 01:16:27
Keep trying. Yeah. Go ahead, Johnnie.

Johnnie Bourque 01:16:33
If they maybe received an award or something that says, hey, you were in Vietnam, or something that states that they were in Vietnam or the location, maybe. Even if it's not a DD 214, that's proof right there of some sort. Possibly.

Crista Ellis 01:16:53
I love your optimism.

Gretchen Glenn 01:16:57
You've got to get creative sometimes and just try. That's what we say. You just have to work with us, work with the veteran service officers to just brainstorm together. We're your advocates, and we'll try our best. We can't always make it happen, but we'll certainly try.

Crista Ellis 01:17:16
Yeah.

I am just really quickly looking through the open questions right now to see if there's one that's relevant to today's subject. If you're asking for more specific information, I highly recommend you reach out to the Parkinson's Foundation Helpline, and they'll be able to guide you with your specific questions and resources that can support you.

All right, here's one. Got it. Glenn asks, “Do I still need to pay Medicare premiums if I have 100% service-connected disability and receive all care through the VA?”

Gretchen Glenn 01:18:03
My suggestion is always to keep Medicare Part A because you don't pay for that. If you call 911, 911 is going to take you to your closest hospital emergency room. They're not going to transport you to the VA. So if you don't have Medicare Part A, you're going to get stuck with that bill if you don't have any insurance. And we can't guarantee, if it's not related to one of your service-connected conditions, if the VA is going to necessarily pick up the cost of that hospitalization or the ambulance ride or anything like that. So I always recommend that you at least keep A.

B, it's kind of up to you. If you chose to want to get a second opinion at some point, the VA does not necessarily have to agree to covering that second opinion if we provide the care at our hospital or at the VA. So if you wanted a second opinion and the VA wouldn't send you out for it because we already have the specialists here, you would then have to pay for that outpatient care that would fall under B. But I'm curious if Emily and Johnnie have anything differently that they say.

Emily Hall 01:19:17
I definitely think it's, I mean, like Gretchen said, it's not required. If you're 100% disabled and you get everything through the VA, you're not required to keep Part B. I just, as someone who also works at a community hospital and sees a lot of veterans who come through those doors as well, it opens up a lot more flexibility and options as far as community care, or if you needed to have short-term rehab done at a facility that is close to your house versus trekking to the VA.

I think sometimes it's nice for having a little bit more as far as options. Now, some of these Medicare Advantage plans, which I could go on a long rant about, sometimes the costs, the premiums are really, really high. I think it's about weighing your options on that and seeing whether or not you feel like that plan is right for you. Because again, if there are specific programs within that that you utilize, that's great, or providers that you see with it, that's great. But most of those programs are usually a little bit more costly.

If you are 100%, you have that dental eligibility, which a lot of times people will pick those Medicare Advantage plans because they have dental in there. But if you're 100%, you can use dental through the VA, which I think is a really big benefit, honestly.

Crista Ellis 01:21:00
All right, my friends and community, thank you all so much for sharing your time with us today. A big thank you to Johnnie for generously sharing your expertise. I hope everyone has walked away with fresh perspectives and feels motivated to use this knowledge to improve your care and deepen your connections.

A message that I'm receiving from today is keep trying, keep asking. You don't know the answer unless you ask the question. So continue to poke and prod and nudge your community members who are supporting you through navigating the VA system. Continue calling the Parkinson's Foundation Helpline. Send us emails. Ask the questions. Keep trying.

Today's webinar and the entire Veterans Webinar Series is presented with support from the Don and Lorraine Freeberg Foundation. We want to take this moment to thank the Freeberg Foundation for helping to make these programs possible.

Join us for the second program of our Veterans Webinar Series, Care Partners of Veterans with PD, on December 12. This program provides essential guidance for care partners of veterans living with Parkinson's disease. You will gain insights into effective strategies for navigating evolving roles and accessing beneficial support services. Join us to deepen your understanding of the comprehensive care services and caregiver resources provided by the VA and the Parkinson's Foundation. You can find more information and register for the program on our webpage at Parkinson.org/Veterans.

In the same vein of providing resources for care partners, join us this November for our Care Partner Summit Webinar Series, designed specifically for those supporting someone with Parkinson's. Whether you're new to the role or have been caring for a while, these webinars will offer valuable strategies for managing Parkinson's, maintaining strong relationships, and navigating daily challenges with confidence. Our expert panelists, people who are living with and impacted by Parkinson's disease, will offer you practical tools to support you every step of the way. We are hosting three webinars throughout the month of November. You can sign up for all three of them or one that speaks to you the most. Again, you can scan that QR code on the screen or visit our webpage at Parkinson.org/Summit.

The Parkinson's Foundation wants to hear from you through our PD Story page. The Foundation shares stories written by anyone in the Parkinson's disease community. These stories help bring awareness to this life-changing disease and help to inspire others. As a veteran or a loved one caring for someone with Parkinson's disease, your experience is unique. We encourage you to submit your PD story and share your experience with others in the community. You can visit Parkinson.org/PDStories.

Don't forget to visit our webpage and explore the resources offered by the Parkinson's Foundation that can support your navigation of living with Parkinson's as a veteran. That website is Parkinson.org/Veterans.

If you had a question today that was not answered, please reach out to our Helpline by calling 1-800-4-PD-INFO or emailing Helpline@Parkinson.org. You can use that same contact information to order our free resources, educational book series and our Hospital Safety Guide. We thank you for joining us today and hope to see you again soon. Be well and keep trying.

Dr. James Beck 00:00:07
Hello everyone. This is Dr. James Beck, the Chief Scientific Officer at the Parkinson's Foundation, and I want to welcome you to a new event of expert briefings, our 11th series of expert briefings. I think you've noticed things are a little bit different than they have been in the past. I'm really pleased to let you know that we have video. You will be able to see me. I won't be able to see you, unfortunately, but you'll also be able to see our speaker for the first time that we will be doing this. We also have some other cool things that we can do as well.

Why did we start with the video process to begin with? We listen to the community, as we always do, and look for an opportunity to deliver information in a more meaningful way, engage the community that much better, and allow us to really, as we always try to do, respond to the feedback that's provided for you.

What I also want to do is let you know, for those who are going to be joining us, the slides are going to be available for download. There's a chat window that will pop up, and right now you can see the chat icon is highlighted. As a result, you'll be able to see little things come in. Right here is the chat window. Now my icon's not showing up right there, but there's a little chat icon which will show up here, and I'm sorry, right here. Well, I clear that.

Dr. James Beck 00:01:46
The chat icon is here, and in your window, it shows up orange right now with a note from my colleague to indicate that she has a URL for you that you can click on to download the slides. If you're an allied health professional who's interested in using this expert briefing as a way to gain some CEUs, we have a different protocol for that as well. Again, we have one free CEU through the American Society on Aging, so you have had to register as part of that in order to get that CEU. Within the chat icon will be a link that'll take you to a webpage where you can participate with the quiz immediately after this expert briefing. Don't close that webpage. Keep that link handy so that you can take that quiz while the information is fresh. If you can't do it right now, you've got 30 days, until October 17, to complete the quiz and collect your free CEU.

Just a little bit more orientation about the setup. Again, we've got in the center a little diagram here. What we'll be able to do is under an option called Q&A, where those of you who are viewing this live will be able to ask questions of Dr. Roberts. We'll compile them, and those questions which are most relevant and on topic we'll be able to ask. Even those that may be very relevant, we may not be able to get to, just because we have a limited amount of time today to engage with Dr. Roberts. I just want to let you know about that.

I also want to let you know we've got a couple cool things we can do with our new interface. The first is to be able to ask questions of you. One of the things we know is that we have over 1,700 people who've registered. 758 of you are people with Parkinson's, another 400 are care partners, we have lots of families and friends, and over 250 health professionals involved. I wanted to make a shout-out to a couple viewing parties in Omaha, Nebraska. We've got a Lunch and Learn that's undergoing right now. At the Danbury Senior Living Center in Ohio, we have another viewing party, and also in Parkside Village in Westerville, Ohio, we have another viewing party. Hello to everyone. I can actually wave this time.

Dr. James Beck 00:04:13
We're going to push our first poll, asking who you are. The poll should appear up on your screen, so just click. For the viewing party, just select the best one. We can see people are coming in with the poll. You in the audience won't be able to see this, but I see that a number of one hundred and two hundred people have already responded so far. Put in your votes. We'll just leave that up there for a little bit longer and see where everyone is coming from.

We've got a couple scientists, just literally two scientists. Physicians, clinicians are on board. 62 health care professionals, hello to you guys, and a number of other folks. We can end the poll now. There we go, and let's share the results. You can see that we have a lot of people with PD who have joined us today. A lot of health care professionals too, which is really great. I'm glad that everyone finds these topics so useful.

We'll move on to another poll. We want to find out where you're viewing from. Where are you located right now? We're going to push another poll that should appear in just a moment and give you an opportunity to tell us where you're viewing this from, because typically we find that people from all over the world are watching this. But given the time zones that we're in, not everyone can do this live, and they will be able to watch it later on. A lot of people are here in the United States, and a handful of folks from Canada.

We'll give it another few minutes. One of the really nice things about our new webinar series is that you get to register just once for the entire year. That means you don't have to register all the time. Hopefully, you received an email with a number of reminders when these upcoming expert briefings are. My reminder at the end of our expert briefing was superfluous, but you'll have that there in a calendar, and you can keep track of that.

Dr. James Beck 00:05:52
Let's publish our poll right here. We can see that most of the people who are watching and joining us live today are from the United States, a handful from Canada, and just a couple from Europe. I'm going to be headed off to France this weekend for the Movement Disorder Society meeting and hopefully be able to interact with some people there as well. We'll share the results, and you can see that we've got, again, most people from the United States and Canada, as I said. We've got a lot of people who are here to see this.

Right now, I want to move to our guest, Dr. Angela Roberts. Dr. Roberts is an assistant professor at the Roxelyn and Richard Pepper Department of Communication Sciences and Disorders at Northwestern University. She is a principal investigator of the Language and Communication Aging and Neurodegeneration Research Group, which I think is a mouthful, so we'll rely on her to help us be able to speak that quickly.

Her research focuses on developing novel linguistic biomarkers of dementia progression, including spoken discourse and social interaction changes. She applies these findings to the development and evaluation of interventions for communication impairments that affect individuals with Parkinson's disease, Alzheimer's disease, as well as to help their family care partners. It's my pleasure, and now that Dr. Roberts has popped up on screen, to welcome her to our expert briefings and the new technology that we have at hand.

For those of you in the audience, if you see some glitches along the way, just bear with us. This is new for us as it is for you, and I hope we'll be able to have a very smooth expert briefing. Dr. Roberts, I turn it over to you.

Dr. Angela Roberts 00:07:59
Good afternoon, everyone, and thanks for allowing me to spend some time with you today and share a bit of the research that we do and, hopefully, helpful strategies for people living with Parkinson's disease and their families.

These are the disclosures that we let you guys know about, but more importantly, it's invaluable for us to acknowledge the funding that we receive for the research that we do.

There are a couple learning objectives that we set out for the talk today. The first is to really have a discussion around how communication changes in aging and in Parkinson's disease impact everyday conversations. The aim of this talk is to go beyond speech issues, to go beyond motor-based issues only, and to really think about how myriad changes in Parkinson's disease affect everyday interactions. We'll talk a little bit about how conversations break down and how to recognize some of the signals of those breakdowns, the relationship to those difficulties in the context of maintaining relationships and creating new relationships in Parkinson's disease, and then, really importantly, try to get you to some useful strategies that you can use, hopefully leaving this webinar and going into your everyday lives.

I want to start with the definition of what is conversation, and this becomes a little bit different than just thinking about the classic speech behaviors in Parkinson's disease. A conversation really is an interaction between two or more people, at a minimum. It is the primary means by which we create and maintain social relationships. It is a uniquely human behavior, and it's also governed by a set of rules, a set of rules that we've understood for a long time now. The good thing about having conversation governed by a set of rules is that it means that we can understand how it breaks down and how to help to repair it.

When impaired, conversations affect quality of life. They're significantly associated with increased burden in terms of burden of everyday activities and also caregiver burden. It affects quality of life. It increases caregiver burden. It creates difficulties in completing everyday activities, and it can lead to a very important consideration that we think about in terms of dementia prevention, which is social isolation and loneliness. We now know that social isolation and loneliness are primary predictors of who will go on to develop dementia.

Dr. Angela Roberts 00:10:39
When I first started doing research in Parkinson's disease, and it's been a while now, as a clinician I've worked with Parkinson's disease for over 25 years, and as a researcher for over 10 years. One of the things that I was observing when I was in the clinic is that the problems people were describing were not just limited to their speech and voice issues. Caregivers were complaining of difficulty with the flow of conversation or difficulty maintaining conversation topic, and the people with Parkinson's disease were really frustrated by the fact that they were left out of conversations that were important to them.

This kind of phenomenon of, by the time I get ready to put together what I want to say, the conversation has moved on without me, and it leaves me feeling isolated. One of the phenomena that became apparent to us is that conversation problems, not just speech and voice issues, but conversation problems, are a big deal for people with Parkinson's disease and their family members.

The research that I do in my lab really is about taking a peek into these issues. We record people in their everyday environments in a variety of tasks, from telling stories to having conversations in their homes. We do this using traditional methods like video recorders and audio recorders. We also have developed some novel technologies that allow us to measure what people are saying and how they're saying it in their real-world environments in this minimally invasive way.

The sensor you see at the bottom is one that we've developed that basically is like a Band-Aid that people wear on their throat that allows us to record this information, so that we can really get an idea about how communication and, importantly, how conversations are breaking down in everyday lives.

Observations that we have made and observations that others have made, certainly over time in this literature, is that of course, low voice volume and difficulty with clear speech sounds can get in the way of conversations for people who have Parkinson's disease. But the other challenges that also come up that are a little less expected are increases in grammar errors. We find that early on in Parkinson's disease, people are making subtle grammar errors. Their language can tend to have fewer key ideas or less complete key ideas, and that can be frustrating sometimes to them as well as to the people they're communicating with.

Dr. Angela Roberts 00:13:04
We see more disruptions in speech. There's more word hesitations, pauses, the need to revise words and phrases, or the need to repeat sounds. Also, importantly with regard to conversations, we see that people have difficulty modulating this thing we call prosody, or voice modulation of the intensity, the loudness, and the pitch changes in your voice, and also facial expressions. Those are really important for conveying meaning. It's one thing for me to say, "I'm angry." It's another thing for my face to show that I'm angry and also my voice to show that I'm angry.

While we know that the difficulty expressing these is problematic in Parkinson's disease, we also know that within PD, it's harder for people with Parkinson's disease to read and interpret those facial expressions and prosody changes or voice pitch changes in their conversation partners. It's not only an issue of producing those changes, but also perceiving those changes. This can lead to what we call conversation breakdowns.

Here's a great example of one that actually happened in my house a few weeks ago. "Let's go to the art show on Saturday." "What did you mean? Are we going to the cat show?" When the message doesn't get through, when there's this dyssynchrony between the message that is sent and the message that's received, we call that a conversation breakdown.

Research that we've been doing in my lab has been looking at these behaviors, as I said, in everyday conversations of people with Parkinson's disease. We're one of the few labs that has looked this direction. I'm going to apologize. I don't have access necessarily to a pointer to be able to guide you through this slide, but I'm going to walk you through it.

When we look at these conversations, we break down what we call trouble sources. These are the reasons why those misunderstandings or conversation breakdowns occur. Here you see several categories of those breakdowns. We put them in a box and say that this conversation breakdown was caused largely by this issue.

Dr. Angela Roberts 00:15:00
Motoric breakdowns are those breakdowns that we think about as being around voice issues and also speech loudness and speech sound clarity. The language form and content errors in the next column really reflect on whether or not someone used the correct word or whether the grammar form of their utterance was off in some way. The third column are those things that we call discourse or turn-taking issues. This is when we see people not navigating whose turn it is to speak. Is it my turn? Is it your turn? Am I introducing a topic and holding on to that topic, or am I jumping across topics too quickly?

The last two categories are really environmental things, like are people talking with the sink on or the dishwasher running, and then this small class of variables, or behaviors, that we have trouble classifying into one group.

One of the things that you'll see in this slide is that, surprisingly, in Parkinson's disease conversations, you would expect that the majority of the conversation breakdowns that occur occur in this motor class, these kinds of issues with voice and speech sound clarity, but they don't. The majority of the trouble sources that we see, the majority of the reasons why conversations break down, and these were in conversations between people with Parkinson's disease fairly early in disease, without the presence of any dementia or significant cognitive impairment, occur because of those language or word choice issues, and also in this context of topic management or turn-taking.

Here's the same data, but this time what we've done is we've broken it down into the trouble sources that result from the person who is the care partner, the family care partner in this case, or from the person who has Parkinson's disease. Here in the slide that you're looking at, purple is the family care partner and the person with Parkinson's disease is in orange.

One of the things that you should observe here that we found rather interesting when we started looking at these data is that the sources of conversation breakdowns don't just reside with the person who has Parkinson's disease. Indeed, depending on the nature of the breakdown, the care partner can actually be more responsible than the person with Parkinson's disease. We certainly see that people with Parkinson's disease make more motor errors, they make more language form and content errors, but that third column, the discourse, the ones that involve navigating turns and really maintaining a topic and sharing a topic and introducing a topic correctly, the majority of those breakdowns are actually the result of the care partner.

A lot of these happen in the context of over-talking or talking over or interrupting the person with Parkinson's disease.

Dr. Angela Roberts 00:18:06
What that's led us to believe is that the nature of the conversation problems that we see in Parkinson's disease are not just about Parkinson's disease. They're not just about the person who's carrying that diagnostic label, but they're about the breakdown of the collaborative communication between two people. This causes us to start to really think about therapies and interventions in Parkinson's disease differently. It was important that we not just address the speech issues and that we address the problems that are centered with the person with PD, but that we think about this as one unit, and that in the context of conversations and living with Parkinson's disease, both partners develop strategic ways to improve communication, but they also develop some bad habits that require addressing in the context of therapy.

Here's an example of one of those trouble sources. I'm not going to spend a lot of time going over this, but I just wanted you to see an example of what we see sometimes in the data that we extract from people's homes. PD is the person with Parkinson's disease, and CP is the family care partner.

What you can see here is that the person with Parkinson's disease first provides an explanation of something he's talking about on the television that isn't very clear, and the care partner has to send a signal that they didn't understand. The person with Parkinson's disease in the third line tries to correct that. The care partner comes back in the fourth line and says, "Gosh, I didn't get that quite yet." The person with Parkinson's disease goes back in to try to correct, and finally, after the back and forth of three turns, they actually get the information clarified. This is what we call a complex repair. Typically, we would see these repairs happen very quickly, but this is an example of exactly the types of behaviors that we see in these home recordings.

What we have concluded with this work now over a couple of studies is that almost two-thirds of the conversation breakdowns that occur in Parkinson's disease actually occur because of things that are unrelated, or at least somewhat unrelated, to the motor changes. These include longer pauses. They include not as clear signals for turn-taking, slowed processing of information, as well as this behavior that I talked about, this over-talk or this interrupting of the person with PD when they're trying to communicate. That over-talk then means that neither partner has fully understood the message.

Dr. Angela Roberts 00:20:47
There's this universal rule in the context of conversation. Remember I said conversation is rule-bound. We, as humans, are hardwired that when a conversation breaks down, we need to try to repair it. We don't leave these conversations unrepaired or these conversation breakdowns unrepaired.

I just wanted to show you this slide quickly to say that in the context of Parkinson's disease, and again, I don't have a full annotation here, so it's going to be a little bit hard to walk through this. In every conversation, when a breakdown occurs, there's the need for someone to signal that they did not understand, and either they will initiate the repair or their communication partner will initiate the repair.

These repairs are really important in Parkinson's disease conversations because the other interesting thing that we observed when we recorded people in their homes, because you have this option of these other-initiated repairs where the partner is the one who initiates, or self-initiated repairs where you make the error and you're also the one to try to correct it. But in Parkinson's disease conversations, almost 75% of the repairs are what we call these other-initiated repairs, meaning that the person with Parkinson's disease and the care partner both are dependent on their other partners for repairing their breakdowns.

While not uncommon in couples or family members who don't have Parkinson's disease, this inflated number of these other-initiated repairs seems to be a phenomenon in Parkinson's disease, such that people within these conversations, so the person with Parkinson's disease and their family care partners, are really dependent fully on each other for both preventing breakdowns and also for facilitating the repairs. Again, this kind of notion to us that this is fully dyadic.

When we first set about this research, we thought, gosh, it's going to be the family member who's always initiating the repairs. The person with Parkinson's disease may lose sensitivity to the fact that a breakdown has occurred and may not try to repair the conversation. That's actually not what we saw at all. We saw that they were equally invested. The person with Parkinson's disease was just as likely to repair their conversation partner's breakdown as the conversation partner who doesn't have PD was to try to repair the person with Parkinson's disease's error, so that this sensitivity seemed preserved in Parkinson's disease.

Dr. Angela Roberts 00:23:19
But we did see some issues. In a study that we just completed this summer, we actually compared these repair cycles in Parkinson's disease to people who have Alzheimer's dementia. We looked at dyads where the person had Alzheimer's disease and a healthy family communication partner, and then we looked at the same type of relationship in people with Parkinson's disease. What we saw in the context of Parkinson's disease is that these repairs, these signals of repairs, were much more likely to go undetected. They were actually much more likely to go undetected by the care partner than they were the person with Parkinson's disease.

In essence, what our research showed is not only are people with Parkinson's disease sensitive to when conversation breakdowns occur, they are much more likely to try to be the one to initiate the repair than their family care partner who does not have Parkinson's disease. People with PD, again, are not just sensitive. They're almost hypersensitive to trying to repair these breakdowns. We found that compared to people with Alzheimer's disease, PD care partners were more likely to abandon repair attempts.

The types of repairs that we saw, these sequences of conversation repairs, how we fix the message when it didn't get through clearly the first time, were actually much more complex and took much longer in the context of Parkinson's disease than they did in Alzheimer's dementia. In fact, one of the things we saw is that the attempt to repair or to try to fix the misunderstanding often led to another series of misunderstandings, similar to the example I showed you earlier.

Now let's talk about what we do to try to make this better. One of the things that we can do to make this better, and the first obvious low-hanging fruit that we have to go for, is trying to improve speech and voice. While I said it's not the primary issue that's causing these breakdowns, it certainly is a problematic issue in the context of Parkinson's disease. I'm going to spend just a couple of slides talking about that. I know some of you at your viewing parties have another speaker that follows me that's going to talk about these in more detail, and I'm happy to take questions also at the end about speech and voice exercises.

But to go over these briefly, one of the things that we know now that we didn't know even a decade ago is that early and targeted voice training actually may slow the decline in voice impairments. We have some lovely work that's been coming out of animal model research that shows that early targeted work, intensive voice training, may actually not just reduce the severity but slow the progression.

We have some preliminary evidence from studies that actually shows that intensive loudness training or speech training can also change how the brain processes and how the muscles process information about speech and voice production. We think this isn't just about changing the endpoint behavior, but actually changing some of the progression of the disease and how the brain is processing or using information for producing a loud enough voice and a clear enough voice.

Dr. Angela Roberts 00:26:34
To this end, there are really two interventions I'm going to touch on very briefly today, because it's hard to do a talk on communication in Parkinson's disease and not address these. There are two interventions that have garnered probably the largest degree of evidence in the context of addressing speech and voice problems in Parkinson's disease. The first is one that many of you will be familiar with, the Lee Silverman Voice Treatment. It has more research aggregated in terms of its efficacy than really any other therapy program that's been published specifically in Parkinson's disease. It follows the rules of a high-intensity voice exercise program that should actually change or help people recalibrate the loudness of their voice such that it's sufficient for engaging with others both in and outside their homes.

It's high intensity in that it's four days a week over the course of 16 sessions. There are some modifications to this intervention now that allow it to also be delivered at lower intensity over longer durations. But the notion here is that it's not only strengthening the muscles, but it's also retraining people to think and to be loud. It has had great effectiveness over the years for many individuals with Parkinson's disease.

One of the newer treatments out, though, is called SpeechVive, and SpeechVive is a treatment that is partially facilitated by a device. SpeechVive, like LSVT, addresses speech loudness and speech clarity. It can also address some of the rate issues, so people can slow down a little bit more when they're wearing the device. But different from LSVT, SpeechVive is a treatment that's largely delivered with less one-on-one contact with the speech-language pathologist and more practice within the home environment.

It's a device that looks a little bit like a hearing aid, and it operates on this principle that we call the Lombard effect, which basically means that when you go into a loud environment, we as humans try to talk above the loudness of that environment. If you're in a subway station or a restaurant, you're always going to try to be louder than the background noise around you. That's called the Lombard effect. While people with Parkinson's disease maybe cannot make their voice as loud as they could before they developed Parkinson's disease, the Lombard effect itself, the need to try to be louder than the environment, is still preserved.

This device takes advantage of that. Every time the voice gets to too quiet of a level, it plays this cocktail party or what we call multi-talker babble background noise that actually forces the person to raise their voice louder. Not force because they're having to work to make their voice louder, but force in this automatic reflex that the brain tells them to be louder. They're able to get a louder voice without thinking as much about it or without focusing on being loud.

For some people who really have difficulty thinking about being loud or forcing their voice to a certain level, this device can be very helpful for them. For the first time in kind of a decade, we really have two interventions that have made it into this land of pragmatic clinical trials for people with Parkinson's disease.

Voice amplifiers are another option for people. These devices that people wear have basically a microphone and a speaker system that allow them to be louder, especially in smaller conversation environments.

Dr. Angela Roberts 00:30:20
But sometimes, and hopefully I've made this point sufficiently to you, turning up the volume is not enough. When turning up the volume isn't enough, then we have to actually focus on conversation strategies that change not only the voice, not only voice loudness, not only articulation, but the environment and the nature of the interaction between two people in a conversation. To that end, work in my lab has been really, over the last five or six years, looking at developing this treatment called Restructuring Conversations. Restructuring Conversations has two goals. The first is to reduce conversation breakdowns, and the second is to increase the effectiveness and efficiency of those repairs.

Again, what we do in this intervention is not so much about reinventing the wheel. There are a couple of things that we do. We do personalized strategies for people with Parkinson's disease and their family members, and we help select strategies that are really specific to the types of problems that they're having.

The strategies that I'm teaching here and the strategies we'll go over today are really those strategies that we know about and are common to improving communication in anyone who has communication problems, including those with hearing loss. What's different is how we teach these to people. We teach people how to do these strategies through this personalized, dyad-focused intervention, meaning the person with Parkinson's disease comes to the treatment with their family member. We don't separate the two. We work with both individuals together to really master the use of strategies and to learn how to be flexible with strategies in their home environment.

While we're not going to be able to walk all the way through the program today, I did want to walk you through some of the strategies that we do teach in the program.

One of the first things that we teach folks to do is simply to minimize environmental distractions. Now, if you go back to that data I showed you a little bit ago, we didn't see a lot of conversation breakdowns necessarily occurring just because people have the sink running in the background. But this certainly complicates when other communication problems are present. It's just that good reminder, and we have to teach people from the beginning: don't try to have conversations when one of you is in one room and the other one is in the other room. Make sure to turn off the sink, turn off the dishwasher, turn down radios and televisions. Most importantly, get face to face.

We know that conversation breakdowns reduce when people are looking at each other so that they can see each other and they can hear each other while they're talking.

Dr. Angela Roberts 00:33:03
This is probably the biggest one. It is the simplest of the strategies that we teach. It is the hardest one to get people to use in their everyday lives, which is this notion of just taking more time. Remember I said that the majority of these conversation breakdowns occur because of people talking over one another or because topic shifts are not as clear. We see all of this result from this desynchrony in time between it taking the person with Parkinson's disease longer to process information, longer to formulate what they want to say, and the care partner who doesn't have Parkinson's disease trying to still follow the same old rules that he or she has learned over their entire lifetime around how to have conversations, which is conversations move quickly.

In this case, they can't move quickly. Pausing even just a little bit, providing even just a little bit more time, gives the person with Parkinson's disease time to process and time to formulate. When we put this strategy in place, we can almost instantly reduce the number of conversation difficulties down by about 20 or 30% just by putting this time strategy in place. Getting people to use it every day takes us a little bit more work, but it is one of the most effective strategies that we have.

Along with that is this notion of topic management. When people change topics quickly, and I am one of the world's worst about this in terms of my conversation habits, people have to literally start and stop their thinking processes on different topics. It becomes really important to start a topic and finish a topic before moving off to another idea. What this allows is for both partners, whether you're the person with Parkinson's disease talking or you're the family member talking, to make sure that they have fully understood the message before they move forward.

Otherwise, you're left still thinking about what someone said a minute ago and then having to move yourself forward in the conversation. That creates competition and noise and is equivalent to trying to do two or three different mental tasks at the same time. One of the things that we know is affected in Parkinson's disease is this ability to multitask. It affects all of us as we get older, and it's more affected in Parkinson's. This notion of really thinking about staying on one topic, one idea at a time, and moving through them systematically is important. If you do need to change topics, simply giving your partner an alert that says, "I'm going to change topics here, but we'll come back and finish this one in a minute," can be really effective.

Dr. Angela Roberts 00:35:44
Repairing conversations, in terms of what to do: you want to monitor for signals of conversation breakdowns. This is probably the greatest gain that we did when we first started this treatment program, Restructuring Conversations. We actually didn't teach this, and we found that all the strategies in the world did our clients no good whatsoever until we actually started teaching them how to repair conversations. Once we did that, once we taught them how to monitor for signals of breakdowns, how to look at their partner to know that that message didn't get through as cleanly as it should have, this was just groundbreaking for us in terms of being able to make gains with this program.

It's also important that you verify that you understood the message correctly. Did I understand you? Did you say we're going to the cat show, or did you say we're going to the art show? Checking in to make sure that you understood correctly. Lastly, if you didn't understand, don't ever be afraid to just say, "I don't think I got that. I don't think I understood you correctly. Could you repeat that again?" This is a place where people will often say to us, "But won't my partner be offended if I ask them to repeat themselves?" It takes patience.

It takes people knowing why you're doing it, but no, for the most part, people won't get offended. It's much better to make sure that you've understood everything correctly the first time than to try to move forward in the conversation leaving information unresolved. One trick to doing this is not to say, "You didn't say that loud enough. Can you repeat that?" It's to say, "I don't think I understood you. Could you try that again?" The framing of this as the person who didn't understand being the one who assumes responsibility is really important toward ensuring that these repairs go smoothly.

When repairing conversations, here's our rule: repeat, rephrase, show, and stay calm. Repeat information if you need to. If you think that someone didn't understand you, go ahead and try to repeat it or rephrase it differently. Give them the chance to say, "Oh yeah, I got that the first time," or, "I didn't get that. Could you try it again?" Show or gesture if the message really isn't getting across, but above all things stay calm and avoid being critical with one another. It is really tough when conversations are breaking down, everyone's busy and you're in a rush to get out the door to try to stay calm. But it's an incredibly important part of making this work.

What not to do? Don't raise your voice. Be really careful with providing these non-specific, what we call non-specific clarifying prompts. Things like "what," "huh," and "eh" are really, really bad repair strategies. Why? Because if you say something to me and I say, "Huh?" I don't actually know what you didn't understand. If you say to me, "I didn't understand. Did you say cat show?" then I know, "Oh gosh, no, not cat show. I said let's go to the art show." But if you just say "huh" to me, if you just say "what" to me, if you just say "eh" to me for my dear Canadian colleagues, it doesn't work nearly as well.

Really trying to break this habit, because this is a habit that we as conversation partners do all the time. The other thing that happens is when people say "what," "huh," or "eh," someone's immediate reaction is simply to repeat exactly what they said but to do so in a loud voice. The problem with that loud voice is it can actually distort the signal, making it harder to understand, even for people who have hearing loss. It actually distorts your facial expressions as well. People think you're angry with them because it tenses up your face. Avoid saying "what," "huh," and "eh," and instead really think about, "What did I not understand about that sentence?" and let me ask specifically for that information or that clarification.

Dr. Angela Roberts 00:39:49
Try to be careful about excessively reducing speech rate. It doesn't help with getting information in. It can actually, if it's too slow, reduce someone's ability to process effectively. Then always be careful to try to follow through with repairs. Try to avoid just giving up or abandoning. We have this great image that comes from one of our data sets where the wife is frustrated because the conversation isn't going well and she's having trouble repairing it. She puts her hands up in the air, she looks at the camera, and she walks away.

Sometimes that's going to happen. Our general rule about this is three strikes. Try a strategy. If that doesn't work, try to rephrase. If that doesn't work, try again to express your idea in a different way or to get the information that you felt like you missed in your partner's turn. If that still doesn't work, it's okay to walk away, as long as you come back to it and as long as you say, "Let's try this again later." Messages and communication are too important. Connecting through conversation is too important for us to walk away from the attempts to try to make sure our partners feel fully understood and that our ideas feel fully conveyed.

A few of the things that we teach in our program, and then I'll be wrapping up here quickly. One of the other things that we try to really help dyads be able to do, or people with Parkinson's disease and their family members do, and this builds upon research that was done years ago in stroke-based aphasia by Aura Kagan and others at the Toronto Aphasia Institute, is really teaching people how to work together as a team. We apply it uniquely here in Parkinson's disease, but helping partners to see that they're working with one another to both acknowledge difficulties and successes, to validate the challenges of communicating when you have Parkinson's disease, but also to respect their expertise. To say, "What you have to say is so important to me that I'm willing to work to try to make it easier for both of us." This notion of being a partner and revealing someone's competence, the knowledge that they have, and also validating their feelings.

The other thing that we work on is helping people to negotiate preferences and facilitate participation. What do we mean by that? We mean that sometimes you're going to need to talk for your partner or sometimes you're going to need to fill in information for them, and this happens often at doctor's offices, but it should always be done after you've negotiated that preference. Do you want me to speak for you? Do you want me to help you when you're struggling? How can I help you when you're struggling? Communication is a sense of what gives us our very nature and personhood.

Dr. Angela Roberts 00:42:45
When it is taken away from us without us being able to negotiate that we yielded it to someone, it can cause depression and it can cause people to lose the sense of who they are. This happens all the time in disorders where people have communication impairments, and we have some early evidence to show that this happens in Parkinson's disease also. This need for the person with Parkinson's disease and their family members to work together to say, "How can we help each other? What can I do? When do you want me to help?" This notion of facilitating participation means actually opening up the conversation for the person with Parkinson's disease, finding out fillers and tricks that you can use if you sense your partner's getting left out to say, "Hold on. Yesterday we were talking about this, and Joe had some great thoughts on the candidates running for president this year. I'd love for you guys to hear that. Joe, would you share with Bill and Susan your thoughts?"

That little bit of time buys your partner time to be able to formulate his or her thoughts and to be able to come into the conversation. Think about setting up smaller socialization groups. Don't put each other underneath the pressure of having to try to navigate these more challenging communication moments in really busy or large crowds.

The last thing that we teach is this notion of being in tune with yourself, your partner, and the environment. Choose carefully the times of day that you're having conversations. Don't try to have a really important conversation about finances if someone's in the off stage of their medication and it's going to be harder for them. Keep track of your own emotions and the emotions of your partner in the context of the conversation. Lastly, always remember that conversation is for communicating and connecting. It's not for testing.

Conversations with your partner are not about seeing how he or she could raise their voice louder, or whether or not their cognition is intact for the day. Do they remember the names of your kids or what day of the week it is? Conversations are about connecting. As you go into a conversation, make sure that motivation is not about testing yourself or testing your partner, but actually trying to connect with them. Setting that intent can go a long way toward improving conversations.

Last slide here is a reminder that conversations are the responsibility of both partners. Good conversation skills can be developed with practice, but you can't do that just by taking even this list of strategies I've given you that we found really helpful with our clients and that really address those problems that we see in our in-home data that we collect on conversation difficulties. That's not enough.

Dr. Angela Roberts 00:45:27
This takes practice. You can't just take the list and go home tomorrow and say, "Gosh, this is going to work right away." Hopefully, you'll take some nuggets of wisdom back today that you can begin to use, but this takes practice. Be patient with yourselves. Be patient with one another. Conversations are meaningful, but they require flexibility, empathy and the ability to adjust over time. The investment is worth it. The investment in preserving emotional connections, relationships, reducing burden, maintaining personhood, both of each of you individually and your relationship, is very, very important.

Lastly, this kind of gratuitous push: we always need your help in research. My lab does, as does every researcher out there. If you're ever interested, we'd love to hear from you and connect with you about how we can help you and how you might be able to support some of the projects we have going on in our lab, both here and in some of the work that we do in Canada as well. Thank you very much for your time today, and I really, really appreciate the opportunity to share some of our work with you and hope that you have found it helpful. I'll be happy to take your questions.

Dr. James Beck 00:46:37
Angela, that was fantastic. Thanks very much for a really wonderful talk. You covered a tremendous range of things, which I think are really very helpful for people. My takeaway from this, and I'm sure our audience's, was that this is helpful for everyone. I mean, whether you have Parkinson's or not, these are ways to really improve communication, especially in a couple. I know one of the questions that came through is: what is a dyad? Is a dyad just simply saying a couple or two? Is that a good definition?

Dr. Angela Roberts 00:47:07
Yeah, let me clarify that. That's shop talk, and I'm really sorry. I think we were speeding up the

Dr. James Beck 00:47:14
A communication professor.

Dr. Angela Roberts 00:47:15
Exactly. I am full on, and will own the fact that I sometimes am a bit better teaching it than I am at doing it. A dyad is simply a term that we use for, and not just us, but others use for when we're studying conversation or studying communication. It's the notion that it's not just centered on one person. The most classic form of speech therapy, especially in Parkinson's disease, would see the person with Parkinson's disease going to be treated. We like to frame this in this kind of dyad space where it's not just the person with Parkinson's disease, it's they and someone else. That could be a spouse, that could be a child, that could be a friend.

A dyad simply means that there are two people involved in the conversation. Therefore, there are two people that are the result of the successes and the failures, and thus two people who need to be part of the therapy process.

Dr. James Beck 00:48:07
Absolutely.

That brings up a really good question. When you think about, for people who want to move beyond the tips that you've provided on how to improve communication, they would seek out a speech therapist, a communication specialist. Would both partners go? Typically, I've often thought about just one. Maybe the individual with Parkinson's who is living with that would go. But here you're suggesting, based upon your research, which I found really interesting, that it's both partners who need to go and really benefit from it.

Dr. Angela Roberts 00:48:42
Yeah, thanks for that question. I didn't mean to interrupt. I didn't mean to overtalk. See? Again, my own bad habits.

We do think that way. Sometimes people with Parkinson's disease will say to me as well, "I'm not married," or, "I live on my own. Does that mean these therapies aren't for me?" And we'll also say no to that. You are interacting with someone meaningful in your life almost all the time. It doesn't have to be the spouse who's coming in, and certainly we can teach strategies that you can then teach others, so it doesn't have to be always as a dyad. But the growing evidence that we have in communication disorders and other areas, not just Parkinson's disease, says that these dyad approaches may actually be effective ways to go, because of the nature that you're not just changing the person who has the condition and changing what they know, but you're changing also the environment in which they communicate, and doing so may give us greater gains overall.

Yeah, we actually are suggesting that for some interventions with a speech-language pathologist, it would be helpful to have both partners engaged and active within the therapy session for sure. We've tried this both ways. We've tried doing it just with the conversation partner, so just the unaffected person who doesn't have Parkinson's disease. We've tried just with the person who has Parkinson's disease. Our gains every time are greater when we have them together.

Dr. James Beck 00:50:06
I guess a follow-up to that question then is when you see this communication breakdown that you have with these dyads, do they persist? If the care partner is overtalking and doing this, is it only with the person with Parkinson's disease, or is it also when they engage with other people in conversation as well, separate from when the dyad is, for whatever reason, temporarily separated?

Dr. Angela Roberts 00:50:35
Ah, that's a stellar question, and I thank you for asking it. That's the next research study that needs to be done, right? There are two things we currently don't know that I think are really interesting. We have some soft observations that kind of inform why we think this is so interesting. There are two questions there, so I'm going to break down. You asked one, but I'm going to say there are two. The first one is: do these problems, if you think about these as maladaptive responses in conversation, they are behaviors that everyone does in conversation, but they certainly increase in frequency and severity in Parkinson's, and also in Alzheimer's disease and other conditions.

For Parkinson's disease specifically, do we see these maladaptive behaviors develop over time as the disease progresses, or as people are learning to communicate within Parkinson's disease, do we see them get better over time? Do they worsen over time? The other factor is one that you just raised, which is: do these behaviors begin to extend to other people who don't have Parkinson's, or are these nuclear to their home? I don't think we know either one. There's a little bit of research in the autism literature that would say they might extend to other conversation partners when these conversation difficulties begin. We have some science that should say, and might say, that it does extend beyond this kind of nuclear dyad, but we don't actually know that. I think those are great research questions to begin to pursue in Parkinson's disease. I hope I get the chance to ask and answer them.

Dr. James Beck 00:52:03
Excellent. Thank you for addressing that.

What I want to do is just take a quick moment. On your screen is about, for our allied health professionals, we have Team Training. Alumni are added to our national Helpline referral list. That means people who are speech pathologists who have come through our Allied Team Training are on this list, because I know that's a question that has come through about how do I find a speech pathologist. We have our own 800 number, which we provide to people to answer questions and encourage people to do so. Angela, how would someone generally, who doesn't know our number for whatever reason because they've forgotten our thing — and I'm hearing huffing and puffing from my colleagues in the background — how would one normally find a speech pathologist?

Dr. Angela Roberts 00:52:51
I think there are a couple of ways to do this. I'm a big fan of always trying to go with people who have been trained within the Parkinson's Foundation programs. It's interesting, not necessarily data I covered in this talk, but we've just finished some research looking at the frequency of referrals to speech-language pathology, and it's abysmally low. One of the reasons why we think it's abysmally low — and not just us, but some of the other Parkinson's Foundation Centers have looked at this over the years — is sometimes just lack of knowledge. The lack of knowledge that some of these conversation strategies, not just speech and voice strategies, can be addressed, that things beyond swallowing can be targeted in speech-language pathology programs for people with Parkinson's disease.

I think going through some of the providers that the Parkinson's Foundation has trained is a great way of getting someone who's knowledgeable about the disease. Other ways to find speech-language pathologists are to go through national accrediting bodies, so things like ASHA if you're in the United States. There's a similar organization on the Canadian side that actually has lists of speech-language pathologists. Depending on the database, some of them will say populations that they commonly see, so you can get some information that way.

Then also just connecting with your local Parkinson's Foundation expert care center, even if you're not one of their patients. If you reach out and ask them who they know and who they've networked with, that's another great way to find speech-language pathologists who are more familiar with Parkinson's disease. I do think it takes some expertise here, and we know that in Parkinson's disease, in an allied health sense, having people who are familiar with and experts in Parkinson's disease does result in better care. I think trying to get through some of those avenues is more effective.

Dr. James Beck 00:54:42
Absolutely, we totally agree. Experts really make a difference. Again, if you're listening in, 1-800-4PD-INFO is our 800 number, and you can call and speak to our colleagues there to do that. I just want to take a moment and give a shout-out to my colleagues here with me in New York. Brace yourselves, ladies. Just say hi. They're helping us run our Expert Briefings program, so thanks to them for doing so and getting this up and going.

Angela, some questions from our audience have come in here. As we talked about, this really involves a couple here in improving strategies. I think it was really important you mentioned about staying calm and really trying to take your time and interact. You can imagine it's a sensitive topic. This is a question that's come in from someone whose wife has Parkinson's. He says that she'll talk to him with her back turned to him, and she's speaking in a low voice, and she's sensitive about this. How do you broach it so that your loved one will be willing to go in? Because this is like therapy. I mean, imagine, when you're bringing people in, it's not only trying to repair communication, but you're almost trying to repair a relationship in some respects because communication is such a key aspect of that.

Dr. Angela Roberts 00:56:05
Oh, it absolutely is.

You are so right. There are times when we do bring people in that we actually will involve a social worker or someone else to help support us, especially if the communication problems have led to some relationship dysfunction. We do see that. We see that in PD, we see that in Alzheimer's dementia, we see that across the board in these conditions. I appreciate the question, and there are a couple pieces of advice I would have.

The first is actually to think about engaging a clinician. Putting a third person in place can actually help tremendously. When we get some of these individuals within our programs, one partner sometimes is much more reticent or resistant than the other. Having a third person there to help broker those conversations or help negotiate, as we said, thinking about negotiating preferences and strategies that work, having a third person can be really useful in that. There's a reason why counseling and other approaches are done with a clinician playing that role, whether it's a speech-language pathologist, a social worker, a psychologist. It's because that third person could be really helpful in brokering the conversation.

That's one thing that I think, if you're having some difficulty and there's some increased sensitivity there, bringing someone else in might be helpful. Then it kind of neutralizes. It's not you telling her she's not doing well. It's someone else who has an outside perspective. The second thing I would say is, even sometimes when we put these programs in place, it can take time to chip away those old defenses and those old senses that this person's just accusing me, or that I'm not trying, or that I'm doing the best I can and I can't do any more, so why do they want more from me? All of those feelings can come up.

This is where it takes patience, and unfortunately, this is the place where the care partner is going to bear a tremendous amount of the burden because they have to be willing to go back to that well over and over again and try to take off little bits of this. Maybe the first issue is if she's always sitting with her back to you, don't tell her to turn around, but actually move yourself to sit in front of her and slowly start to introduce that as the new position that you want to have conversations from, not expecting her to meet you all the way or even half the way until she can actually see that this might be effective and helpful. Once someone can see that it's helpful, it makes it a little bit easier to get them to change their behavior. But these are not easy processes.

Dr. Angela Roberts 00:58:35
It's why, for us, when we first started this, we were really frustrated because people were just handing out communication lists and conversation strategy lists to family members and saying, "You should be able to go home and do this tomorrow." We were looking at this process going, "No, that can't work." Even the lists that appear on websites, family members develop this perception that I've got to be able to go home and do this right now. We actually have an eight-week treatment program to get people there, and we find it takes every bit of those eight weeks. In my mind, just handing over strategies or just spending two sessions on this isn't enough. I think that's the place we have to get past as a profession.

It's a place we need to advance the research so that we're really proving without a doubt that this longer process is better to support people just like the gentleman who wrote in there with that question, because we can't expect them to bear the burden of it and to do it in an unsupported way or not to put sufficient time and resources to it.

Dr. James Beck 00:59:31
Absolutely. I think that's a really good point, that these are things that have occurred over a period of years, if not decades, so it's not going to just be able to be erased with a swipe of a hand, as much as we'd like.

On screen, our colleagues who are watching, are resources for the Parkinson's Foundation. Just keep in mind that we have, in addition to fact sheets and great publications on communications that individuals like Angela have worked on, other things available too for people who have questions about Parkinson's disease.

If you've enjoyed this Expert Briefing, one of the nice things about our new technology is that we can do a very quick turnaround. Tomorrow, look for an archived version of the webinar for you to be able to replay. The slides are there as well, so if you want to download them individually and review them on your own, you can do that as well. Some more questions are coming in from Zoom, and I know we're getting close to the top of the hour, so if I can just have a few more minutes of your time, Dr. Roberts, I would really appreciate it. Of course.

Our Omaha watch party has a question, and it's just a specific thing about how to repair conversation. You may have addressed this a little bit, but if you wouldn't mind, again, providing some more detail. Would enunciating help with helping repair conversations? Is that usually one of the key breakdowns? Is it the person with Parkinson's needing to enunciate more clearly, or is it the care partner or the other person of the dyad? What are your thoughts on that?

Dr. Angela Roberts 01:01:02
Yeah, it can be both. A slide that's hidden in all of this is that roughly 60% of all people over the age of 55 have some form of hearing loss. That's not lost upon us because people with Parkinson's disease also fall in this age group, as do their care partners. One tiny interesting story: we used to screen hearing when we went out for some of the workshops that we did, largely because my husband's an audiologist. One of the things that we found is that overwhelmingly it was the care partners who had more hearing issues than the people with Parkinson's disease. The people with Parkinson's were saying, "It's not just my voice. See, hearing also."

There is something to be said about that. While enunciating can make things more clear, you have to be careful. It's not a primary that we go to. Certainly from the speech perspective, if this is speech clarity or someone is speaking too quickly, absolutely enunciating can be helpful. But the message we want to send is that enunciating or trying to over-exaggerate articulation, which can be helpful from a speech perspective alone, may not take care of the issue, especially if there are more things going on, like additional hearing issues or other types of conversation problems, like topic management or not giving enough time, that are also problematic. I think it's one strategy among many that can be helpful. The notion here is there's not one strategy that works, but people learning how to use a combination of strategies in a flexible way in different circumstances as the nature of the issue requires.

Dr. James Beck 01:02:43
Got it.

Just to take a quick pause to remind our viewers that our next Expert Briefing is going to be November 5, again at 1:00 p.m., presented by Dr. Joseph Quinn at OHSU, Oregon Health & Science University. He's going to be talking about coping with dementia for care partners. That will be a very engaging topic for everyone.

Two quick questions and then we'll finish up, Dr. Roberts. One that I think is just interesting has come in, and I wondered about why is it when people sing, they are able to really project their voice better? What is it about singing to help people with PD be able to be heard, to be loud?

Dr. Angela Roberts 01:03:25
Yeah.

Again, I'm going to chalk this up to one that needs to be researched more, right? Because the phenomenon we see absolutely, and we don't see it just in Parkinson's disease. People who are familiar with stuttering know that sometimes people can sing when they have more difficulty with their speech. Even in the context of aphasia, which is a language problem that can occur as a consequence of a stroke, we can find a similar phenomenon.

The component here is that we think the rhythm of speech might be important. Without getting overly scientific, putting speech to music may embed that rhythm a little bit more, making it easier for people to amplify their voice and to use speech in a different way, to engage other regions of the brain that aren't used when we're just talking but that are required when we're talking or talking and singing. The notion is that it might be engaging other brain areas. It might be activating different aspects of timing in speech that are important. But we observe this in enough groups, not just Parkinson's disease, that the scientific explanation for it we’re not perfectly clear on. 

It's a great question. It's a solid observation, but the science of it we don't fully understand yet.

Dr. James Beck 01:04:41
Okay, that's interesting. Final question, and maybe a long one, but I'll give it to you. Maybe it's short, we'll see. We've talked about this engagement of people, the care partner of a person with Parkinson's, engaging a speech therapist, trying to improve these repair conversations.

What if you're the loved one who lives far away, the son or daughter, and you learn about this and you hear the conversations your parents are having or your friends are having? How do you, as a third party, help them do this, whether you're doing it from long distance or even close? How does someone who's outside and observing this problem be able to make an impact?

Dr. Angela Roberts 01:05:24
Yeah, great audience and great question. I think we're getting closer and closer to being able to deal with these issues through using telehealth and other models of intervention. In another study in another area, we actually have a telemodel or telehealth model intervention. As a family member, if you're in a state that allows for that, or we get an active protocol going more so in Parkinson's disease with those types of approaches, that way you could actually call into the conversation or, using a computer-based intervention, your mom and dad and you could actually work not just as a dyad but as a three-way component of this.

The other thing that we have done in the past when we've had people in our interventions is actually enrolled their family members who live far away. We do that through teaching them how to almost be a train-the-trainer model. We do this a couple of ways. For us, it's no good if only the dyad or the couple we're working with has the strategies. We try to make sure that they can train others in how to use them. Sometimes that's them taking on the role of training other people in their lives, and sometimes it's them bringing their family members into the sessions, and we work with them as well.

I think in our world, it takes more than just a dyad. It takes more than just a village. It takes this giant family of people helping to support and live with Parkinson's disease. I think the way to get involved is to find a speech-language pathologist that your mom and dad might be willing to work with, but who's also willing to connect with you and draw you into the process. The science behind that is we call it a family systems-based theory of doing intervention. We actually know it works. It's a completely viable way to think about getting involved, but finding the right clinician is a first step in that.

Dr. James Beck 01:07:16
Exactly. All right, well, Dr. Angela Roberts, thank you very much for speaking with us today. It's been a very engaging Expert Briefing and helping us to kick off our new presentation software.

Dr. Angela Roberts 01:07:28
Thanks for everyone's time. This is spectacular. Thanks to Parkinson's Foundation and thanks to Dr. Beck for hosting. This has been really great. I've enjoyed it very much.

Dr. James Beck 01:07:37
All right.

For our audience, when you leave, there will be a survey. Please complete the survey. We depend upon your feedback to make improvements. Until then, I wish you all a good week, and we'll speak again in November. Until then, take care. Bye-bye.