Expert Briefing: More Than PD - Managing Multiple Chronic Conditions
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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.
October 9, 2024
Parkinson’s is a complex disease with many symptoms that can lead to complications, such as falls and pneumonia. At the same time, people with Parkinson’s disease are at risk for other medical conditions that occur in the general population, including heart disease, arthritis, and diabetes. Learn about coordination of care, medication management and what to know to achieve the best long-term outcomes.
Presenter
Christina Swan, MD, PhD
Assistant Professor of Neurological Sciences & Fellowship Director
Division of Movement Disorders
Rush University Medical Center, a Parkinson's Foundation Center of Excellence