Exploring Non-Motor Symptoms: Neuropathy, Fatigue, GI Issues

James Beck 0:01:36
Hi there, and welcome to the second installment of the Parkinson's Foundation Expert Briefing Series for spring 2021. I'm Dr. James Beck, the Chief Scientific Officer at the Parkinson's Foundation. The theme for this spring series of expert briefings is devoted to PD symptom management. Here we ask the question: Is it Parkinson's? Is it medication? Or is it aging? Each of the three webinars in the series has been diving deeper into this theme. We're at number two in our series. Last time, we spoke about managing PD motor symptoms, and you can find that expert briefing archived on our website if you want to go back and check it out.

Today, our expert briefing discussion focuses on non-motor symptoms. In particular, we're highlighting neuropathy, fatigue, and GI issues that people with Parkinson's may experience. I also have great news that our expert briefings are now being made available in Spanish. The one we did last month is almost ready to release in Spanish in the next couple of weeks, and we'll be making this one, as well as the next one in our series, also available in Spanish. Take a look for that; they'll appear on our YouTube channel.

Okay, let's take care of some housekeeping here. Let me just discuss briefly how to navigate around the Zoom window that we have. We've got a chat at the bottom where we'll be pushing information out to you. If you have questions to ask, there'll be a Q&A button in the lower right-hand side that you can click on and ask questions that we'll pose to the experts who are going to be presenting today.

In the chat, my colleague will also be pushing a link to the slides in case you want to download the slides to have later on after our webinar. We make those available right now, and you can find those on our website as well in case you miss them here.

Also in the chat, for those of you who are taking and watching this webinar as part of continuing education credits, you can receive free CEUs for watching this webinar. In the link, you'll see an opportunity for health professionals to claim that one free CEU from the American Society on Aging for viewing this webinar. Just click there, save it in another window, and there'll be a follow-up email following this webinar as well. One point of note is that you just have 30 days. That's until April 9, 2021, to collect your free CEU.

Again, this expert briefing has been recorded, and it will be available on demand later this week. For those who registered for today's webinar, you'll receive an email with this link, and we encourage you to watch it again and share it broadly with others.

Last, I want to take a moment to thank our sponsor, Theravance Biopharma. Without their support, we wouldn't be able to have our spring series for expert briefing that we're presenting right now.

So, on the screen, and if you're watching on Facebook, you can see a list of questions that we're going to be posing to our audience here. If you're on Facebook, go to the comments section. We want to know who is watching today's expert briefing. If you're on Zoom, a poll just appeared, and we'll just give you an option to fill in some multiple choices. Are you a person with Parkinson's? Are you a loved one of someone with Parkinson's disease? Are you a scientist, a clinician? Fill that out so we can get a good sense of who you are today, so we can share that with our audience, as well as with our presenters today, so they can get a good sense of who's listening here. Again, if you're on Facebook, feel free to add into the comment section where you're from.

James Beck 0:05:19
We'll pull these together and get a composite score. We'll let this go just another moment or two, and then we'll have this go live to share with the rest of us.

Okay. Not surprisingly, most of our audience are those living with Parkinson's disease and their loved ones. We've got a good number of health professionals on here, so hopefully you find this very useful. Share amongst your colleagues. There's always great information here, little pearls that can improve everyone's practice as part of the process.

What I'd like to do now is move on to introduce our presenters for today. We've got a number of expert presenters here. We've got Steven Swank, who graduated from Butler University with a doctorate in pharmacy and completed pharmacy residencies at Indiana University Health and University of Cincinnati and Five Rivers Health Centers. He joined the University of Kansas Health System's Parkinson's Disease Movement Center, one of the Centers of Excellence in our network, in 2019. As a member of this interdisciplinary team, he provides outpatient care to patients with Parkinson's disease.

Also joining us is Ellen Walter. She's an acute care nurse practitioner at the Cleveland Clinic in the Center for Neurologic Restoration and Movement Disorder Section. Her position at the Cleveland Clinic, in addition to caring for those who've had DBS, involves a comprehensive approach to caring for individuals with Parkinson's disease and other movement disorders, as well as dementia related to these issues. She has a special interest in community outreach, as well as among care partners of those with PD, and helping individuals accept and live well with their Parkinson's disease.

Last but not least is Kelly Weinschreider. She's a woman who lives with Parkinson's disease and was diagnosed at the age of 29 in 2002. She's a Parkinson's Foundation research advocate and currently a board member of the Greater Illinois Chapter for the Parkinson's Foundation. Welcome, presenters, and I will turn my camera off and turn it over to Steven.

Steven Swank 0:07:28
Thank you, James. First, I wanted to start with that Ellen and I have no conflicts of interest.

Ellen Walter 0:07:37
Good afternoon, everyone. Thank you so much for logging on. Before we get started, we're going to start with another poll because we're really curious. We want to know which of the symptoms that we're talking about today you are experiencing. You can check all that apply. You might have one, you might have all three, or maybe you're somebody who does not experience any of these.

Kelly, I'm curious, which of these three do you have?

Kelly Weinschreider 0:08:04
I do not have neuropathy as of yet, although my dad does, and we'll talk about that in a little bit. But mainly fatigue and GI issues I struggle with.

Ellen Walter 0:08:12
Okay. Yeah, I'm curious if that's going to end up being the case for a lot of people in regards to neuropathy. I think in general these are three interesting but really challenging topics, so I'm curious to see what you are all experiencing out there.

Okay, so I think this probably isn't completely surprising that fatigue is number one, followed by the GI issues and then the neuropathy. Again, I think these are interesting topics, very challenging, but that's probably why there's so many of you logged in today to watch this.

It's perfect that neuropathy is the one that is the least because that is the one we are going to start with. My thought is, is it really that fewer people are experiencing neuropathy, or is it that they're not sure what neuropathy is?

We're going to start off by defining what neuropathy is because I find a lot of times that people will use terms, thinking they're describing what they have, and then we later learn that's actually not what they're experiencing. Plain and simple, neuropathy is damage to the nerves. A lot of the neuropathy, not necessarily all, but most of what we're going to be referring to is peripheral neuropathy. That would be damage to the peripheral nerves, and those are the nerves that carry messages to and from the brain and the spinal cord.

So you're thinking, how do I know if I have neuropathy, if maybe I do have it and I don't know? There are different types of nerves, and they carry messages to and from different parts of the body. The symptoms are going to depend on what type of nerve and where those are going. But for the sake of time and to keep it simple, I'm just going to lump those all together.

Somebody might experience some pain. They might experience some numbness and tingling, and maybe that numbness might make them not be able to feel as well, or maybe the opposite. Maybe they'll be more sensitive to touch in a certain area. They might have muscle weakness depending on what nerve is affected, maybe some loss of coordination. Sometimes people can even feel like they're wearing gloves or socks when they don't have any on.

Ellen Walter 0:10:12
Then the question is, why do we care if somebody has neuropathy? I think there's a lot of reasons why we would want to get to the bottom of it if we thought somebody had neuropathy. One of the reasons that I really care is that studies have shown that if you have Parkinson's and you have peripheral neuropathy in your legs, then you are at greater risk for having falls and greater risk for having walking problems.

Next slide, please.

What do I mean by get to the bottom of this? If possible, we want to find out what the cause is, and so we're going to start by looking at the relationship to Parkinson's disease. We definitely know that there is a link to Parkinson's medication, and Steven's going to be discussing that shortly. But we also know that in general, even before somebody starts taking the medication, there is a higher incidence of neuropathy in people with Parkinson's as compared to people who don't have Parkinson's.

There have been some studies showing, again, that people who have not even started medication might have more neuropathy. There was a study published a couple months ago where they looked at 105 people relatively newly diagnosed who had not yet started medication. What they found is that 22% of these individuals had neuropathy, and they were all different types of neuropathy. This was higher than the amount that was found in other studies. But in all these individuals, they had higher levels of what's called homocysteine, higher levels of uric acid, and then lower levels of B12, which was not significant, though. Clearly, there is a link to Parkinson's disease and neuropathy.

Then there's a couple things that are related to Parkinson's that don't necessarily cause neuropathy, but sometimes people get them confused. The first is restless leg syndrome. Restless leg syndrome is when people have an uncomfortable sensation in their legs that they feel like they need to kick them around or get up and move around to make it go away. People describe this as feeling different. Same with neuropathy; people can describe that as feeling different. Sometimes people will say they have restless leg syndrome, but actually what they're describing is what somebody with neuropathy may feel, and vice versa.

Ellen Walter 0:12:30
I think to confuse the picture a little more, often the peripheral neuropathy and restless leg syndrome are both worse at night, and there are some medications that work for both of them.

Then you're probably wondering how deep brain stimulation is related to peripheral neuropathy. I want to stress again that DBS does not cause peripheral neuropathy, but what I've had happen a few times is that when we're programming in the office, we sometimes bring out some side effects of the stimulation, and one of these is tingling. Most of the time when we have a side effect in the office, we change the settings so that somebody does not go home feeling those side effects.

Every once in a while, those side effects will come out while they're at home. I've actually had a couple instances where people have developed a tingling at home, and they'll come in and they'll start talking about their neuropathy that they've never mentioned before. When I ask them about it, I'll actually start to realize in our conversation that it's actually not neuropathy. It is a side effect of the DBS. But because they had a family member that described their neuropathy in the same way, they just assumed that they had neuropathy. But it was actually the DBS.

Next slide, please.

Even though we saw that there is a link with Parkinson's disease, you'll hear me say this again: you do not want to blame everything on Parkinson's disease. There can be other causes. There can be what's called idiopathic, where we don't really know what the cause is. There are vitamin deficiencies, such as vitamin B12. There can be different diseases, so somebody with diabetes, thyroid disease, kidney disease, a lot of different diseases, and even cancer. Whether that be a tumor, a blood cancer, a bone cancer, or the treatments for cancer, sometimes neuropathy can occur as well. Then some other medications, which again, Steven will talk about shortly.

We always want to make sure that you're aware of what the red flags are in case it is one of the more serious diseases or cancer. Some of the red flags that go along if you're experiencing neuropathy, but you also have bone pain, weakness, frequent infections with no explanation of why, or other new symptoms that you don't know the cause of.

Regardless of the cause, you want an early diagnosis so that treatment can be started. Say, for example, it was a B12 deficiency and you needed B12. We want to start the treatment early to prevent further or permanent damage.

A neuromuscular specialist is a neurologist who can actually verify that what you are experiencing is truly neuropathy, the severity of it, and what the cause is, whether it be one of these or the medications, as Steven is going to discuss with you now.

Steven Swank 0:15:14
Thank you, Ellen. Medications can be a cause of neuropathy. They can directly damage the nervous system, or they can cause vitamin deficiencies, such as vitamin B12, which can lead to neuropathy.

This is some medication and medication classes here. One medication that I did not list is metformin. Metformin is a great medication for diabetes. However, it's been known that it can lower vitamin B12 levels, so patients who are on metformin may require checking the vitamin B12 level with regular use.

There's also a class of medications that we call PPIs, or proton pump inhibitors. These are medications such as omeprazole, pantoprazole, Nexium, and Prilosec. These block stomach acid, and that can decrease the body's absorption of vitamins and lead to vitamin deficiencies.

We also know that long-term use of levodopa can increase the risk of neuropathy, and this is independent of age. While it's not completely understood how this happens, it's thought to be related to the metabolism, or the body's breakdown, of levodopa. This can lead to things like vitamin B deficiency or low vitamin B12 levels and high levels of MMA, or methylmalonic acid, and homocysteine. MMA and homocysteine can damage the nerves.

We also know that the intestinal gel, the carbidopa-levodopa intestinal gel, is more likely to cause peripheral neuropathy than the oral tablets or capsules.

For interventions to treat neuropathy, first we want to know what that underlying cause is because we want to make sure that we can stop or prevent any further nerve damage.

Also, for patients who have peripheral neuropathy, it's good to do a fall risk assessment, as Ellen had mentioned. Patients are more likely to change the way they walk and may be more likely to have falls.

Steven Swank 0:17:20
Patients who have low vitamin B12 levels or that are at risk for low vitamin B12 may require supplementation.

Also, we talked a lot about peripheral neuropathy. There are other types of neuropathy or other types of nerve damage that control other parts of our body. For example, things like neurogenic orthostatic hypotension, where it affects the nerves that control our heart, and we can have a feeling of lightheadedness and a drop in our blood pressure when we go from a seated to standing position. There can also be effects on our nerves that control our stomach and our gut, which slow that down, called gastroparesis.

There's also damage to nerves that affect our bladder and can have urinary incontinence. Percutaneous electric nerve stimulation might be a non-medication therapy for patients with urinary incontinence.

Now, when we talk about medications for nerve pain, this is only for nerve pain. These medications do not reverse or slow down nerve damage. These are medications like gabapentin, pregabalin, duloxetine, venlafaxine, and TCA antidepressants such as nortriptyline. There are topical creams such as capsaicin or lidocaine creams or patches. Botox injections might be used, and there are other therapies as well.

Ellen Walter 0:18:48
So the big question then is, is it Parkinson's disease, is it aging, or is it medications? I think you can probably already see how complicated this can be, right? Because you can have an older person who has Parkinson's, and then they have diabetes, which is also a risk for neuropathy. For their diabetes, maybe they're taking metformin, which can reduce the B12, which then can cause neuropathy. It can be really complicated trying to work this out. I'm going to ask Kelly now to share a story about her dad, who also has Parkinson's disease.

Kelly Weinschreider 0:19:19
Yeah, thank you so much. My dad has Parkinson's, and for the last few years, he's had burning, tingling, and numbness in his legs and feet.

Our attempts to diagnose this issue took us to arthritis in his back. He had X-rays to see if he has severe to moderate arthritis in his back, which we thought was potentially causing his issues, but upon treatment, that didn't resolve the issue.

Actually, because of this webinar, I became aware of the neuropathy in PD. I wasn't really aware of it. I wasn't aware of the symptoms. We worked with his movement disorder specialist to look at his symptoms and began a trial treatment of a drug that Stephen mentioned, and he's doing much better. He had a lot of pain at night, and he's able to sleep a little bit better. I think we were able to work that through.

Given that Parkinson's affects many elderly people with arthritis, how do you distinguish neuropathy from arthritis pain?

Ellen Walter 0:20:09
That's a really good question. First of all, I'm glad to hear that your dad is doing better as a result of what you learned through our conversations. I think it's a little bit challenging because everybody experiences pain in different ways. I want to throw that out there. There's never going to be an answer that's absolute for anyone or everyone.

But in general, neuropathy is often described as that burning pain that you were talking about: burning, prickly, sharp, and throbbing. Arthritis can also be described as throbbing pain, but a lot of times there's a tenderness and an aching and a stiffness, and it's in the joints. That's one way that you can separate out a little bit.

A lot of times when somebody has nerve pain related to neuropathy, there's some specific pattern. Again, we were talking about peripheral neuropathy, which is what it sounds like your dad has, but carpal tunnel syndrome can be neuropathy, and that's a very specific pattern. Maybe with your dad, if he had disease on both sides, they're thinking that maybe he has some pain on both sides of his legs because of the damage to the nerves from the back. It can be a little bit tricky, but I think that the nerve pain often follows some kind of known pattern and is more like that burning, whereas the arthritis pain typically is in your joints. Again, with the back, though, it can affect the nerves, so it can probably overlap there a little bit.

Kelly Weinschreider 0:21:31
I know you mentioned some of this, but how would you, as a patient, talk to your care provider and help to make that distinguishing characteristic? How would you speak to them and try to get them to guide you one way or the other?

Ellen Walter 0:21:47
Yeah, I think in general, speaking of most things, not even just neuropathy and pain, is to just describe exactly what you're feeling and then also if there's any other symptoms that seem to be related. I think the key is avoiding using specific terms. I've had this happen as a provider, where somebody will come in and they'll use a very specific term, whether it be restless leg syndrome or even bradykinesia or something like that. I listen to what they're saying, and I treat it as such. Then it's several months later when the treatments aren't working, I realize that they were using the wrong terminology and that I just accepted that.

It was definitely a lesson I learned, but I think the key points here are just describe what you feel and try not to use terminology that might send somebody down the wrong path.

Kelly Weinschreider 0:22:34
And stay away from Dr. Google.

Ellen Walter 0:22:37
I think we all go to Google sometimes, though.

All right. Next slide, please.

What is fatigue? I actually think this is a loaded question. If you go online and you look up the definition of fatigue, Dr. Google, as Kelly just said, I think that you're going to find a zillion different definitions of fatigue, and often they contradict one another. For the sake of today, we're going to use the definition of this feeling of extreme exhaustion, feeling worn down, whether it's related to a specific cause or not.

I want to point out that this is different than sleepiness. A lot of times people can feel sleepy but not fatigued, or they can feel fatigued and not sleepy. Somebody who has excessive daytime sleepiness can fall asleep at the drop of a hat. They can fall asleep in a conversation. Whereas somebody with fatigue often can be sitting in a room by themselves, stimulated, and they will not fall asleep, and often they have trouble falling asleep. There's definitely a difference there.

Next slide, please.

We know that about 50% of people with Parkinson's experience fatigue, and I think in our poll today, it was around 77%, if I'm not mistaken. We know that it can start early in the disease, it can persist throughout the disease, and about one-third of individuals with Parkinson's say that it is one of their most bothersome symptoms. We definitely know it's a problem in Parkinson's.

As it relates to Parkinson's, there's many reasons why somebody might feel this way. There are changes in the brain. Those same chemical changes that cause the movement problems and some of the other non-motor symptoms can cause fatigue. I came across a study from 2019 that showed that people with Parkinson's and high levels of fatigue actually had some differences in their brain as compared to people with Parkinson's who did not have fatigue. Also, people who did not have Parkinson's but had fatigue did not have those changes. It was very specific to the people who had Parkinson's and the high levels of fatigue.

Ellen Walter 0:24:51
People who have less movement, so more trouble moving due to either slowed movement, or maybe they're deconditioned because they haven't been getting a lot of exercise, can feel fatigued or exhausted. Then the opposite, maybe more movement. Those dance-like swaying movements, what we call dyskinesia, that some people with Parkinson's experience, burn a lot of energy. By the end of the day, if somebody has a lot of dyskinesia, they can be absolutely exhausted.

We know that depression is common in Parkinson's disease. Fatigue can be a symptom of depression. Medications, which Stephen's going to talk about shortly, and then sleep disorders. A lot of people with Parkinson's have sleep disorders, and as a result, if they're not well treated, not only do they possibly have the excessive daytime sleepiness, but they might also experience fatigue.

Next slide, please.

Again, as I said before, we don't want to blame everything on Parkinson's. There can be other causes. Sometimes the cause is unknown. We don't know why. We can do every test under the sun looking for causes of fatigue, and we don't come up with anything. Maybe that's the point where we say, oh, maybe it's because I'm getting older, or we say maybe that is related to the Parkinson's disease.

But there are some very specific known causes of fatigue. One is deficiencies. Does somebody have a vitamin B12 deficiency, vitamin D? Are their iron levels low? Do they have poor lifestyle habits? A poor diet, the old saying: we are what we eat. Are we eating a bunch of junk, and then we're feeling like junk and feeling fatigued? Somebody drinking? Are they not getting enough activity, or are they getting too much activity?

Then there's different diseases and disorders. The list is super long, as you might imagine. Diabetes is one of them, thyroid disease again, but there are many others. As I mentioned earlier, it can be a sign of depression, whether you have Parkinson's or not, and then it can always be a sign of cancer. We want to make you aware of those red flags again in case it is cancer or one of the other diseases.

If somebody has a sudden onset of fatigue, they have normal energy and then all of a sudden they're feeling fatigued all the time, that's a red flag. If they have fatigue and it's accompanied by shortness of breath, if it's accompanied by weight loss, some signs of abnormal bleeding, fever, enlarged lymph nodes, or an irregular heart rhythm. These are the red flags that you would want to be aware of.

Then we're going to move on to the next slide with Steven, and he's going to talk about some medications.

Steven Swank 00:27:04
Thank you, Ellen. Medications can be a potential cause of fatigue, and that can be mental fatigue — mental exhaustion or tiredness — or it could be physical fatigue, such as someone getting more tired than they normally would during certain activities or exercise.

There are medications that we use for Parkinson's disease. Some may cause fatigue, more of a mental fatigue, and this is usually more common with higher doses of these medications.

We also know that there are medications for mood and sleep that may be more likely to cause fatigue. A common medication class here is benzos, or benzodiazepines. These are medications such as clonazepam, Ativan or Xanax — lorazepam — and these medications can cause that mental fatigue.

There's also a medication that many people may be familiar with called Benadryl, or diphenhydramine, and this is in a lot of over-the-counter sleep medications. We don't like to use this medication because it can cause a lot of side effects. It can also make us feel groggy or kind of hungover the next morning. It can last a long time, particularly in people who are 65 and older. We don't like to use this medication for sleep, and it's also been associated with dementia.

An example of a medication class that can be causing physical fatigue — a classic example of this — are beta blockers. These are medications such as metoprolol or carvedilol. When these medications are started, and within two weeks of a dose increase, that usually causes physical exhaustion or fatigue, but that typically resolves after two weeks of that change.

There are also medications that lower our blood pressure, and that can make us feel fatigued or tired until our body readjusts to that new low blood pressure.

There are medications that we use for neuropathy that can cause fatigue as well. When we look at interventions to treat fatigue, again, first we want to rule out all those potential causes that Ellen mentioned. That's going to dictate that treatment or that approach. Something that can be very helpful is if patients or caregivers fill out a log or a diary to help track that fatigue: when did it start, and are there any patterns? That can really help your doctors figure out what's going on. Is it related to a medical condition or a medication? For Parkinson's patients, that time really can matter because you might just be having off time of your Parkinson's or wearing off of your Parkinson's medication. That can be really helpful for us to know as well.

If, after ruling out all the other causes, it's determined that the fatigue may be related to Parkinson's, a medication called rasagiline may be used to help with physical fatigue. You might also see medications such as methylphenidate or modafinil used, but at this time, there's not enough evidence to know if these are beneficial for Parkinson's disease fatigue.

I did want to ask Kelly what your experience with fatigue has been. If you could share your story, please.

Kelly Weinschreider 00:30:26
Sure. I've struggled with fatigue actually for quite some time. But I do have a question. Many people who take, as you mentioned, the dopamine agonists to help control their PD symptoms — those drugs can cause sleep attacks. Can you explain that particular side effect?

Steven Swank 00:30:41
Definitely. As Ellen mentioned, sleepiness is actually a slightly different symptom. It's a different non-motor symptom, but medications can definitely play a role here. For example, levodopa might, but we definitely associate the dopamine agonists, like you mentioned. That's like ropinirole, pramipexole or apomorphine, and these medications can cause sleepiness and these sleep attacks. This is really important that we educate people about these potential sleep attacks, particularly when they're driving, as motor vehicle accidents have been associated with this.

This has been reported when patients have started the medication, up to a year even after their Parkinson's medications without changes. It's been reported that people might feel tired for no good reason. They're just driving, they start to feel tired, and then they can have a sleep attack.

What we recommend is, if you are driving and you start to feel tired, do not fight through it. You're on medications that make it hard for you to fight through it. If you feel tired, pull over and either have somebody else drive or rest so that nobody gets hurt.

Kelly Weinschreider 00:31:53
Okay, thank you. What about amantadine? Has that been shown to help fatigue?

Steven Swank 00:31:58
Great question. Amantadine, in the setting of Parkinson's, has not been shown to help with fatigue. You might see it used in MS, or multiple sclerosis, but not in the setting of Parkinson's disease.

Kelly Weinschreider 00:32:11
Okay. Thank you.

Ellen Walter 00:32:15
We're moving on to our last topic: what are GI issues? These are problems or concerns that can occur anywhere in the GI tract. Starting at the mouth, maybe with chewing, some drooling, working down to the esophagus with swallowing problems, and then all the way down to the anus.

Possibly some of it might be a little bit more defined than fatigue, but it still can really be hard to pinpoint the cause. We were talking earlier before we came on, and I was talking about how you start reading about something and it takes you somewhere else, and it's a wonder that we figure out any of this because, even though it seems like it should be simple, it's actually so much more complicated than it seems. For the sake of time, we are just going to focus on two of the GI issues in Parkinson's. Next slide, please.

What we know is about 80% of people with Parkinson's disease do experience GI issues, and again, that can be anywhere throughout the GI tract. Focusing on constipation and slow gastric emptying today, though, the constipation is probably the most common symptom I hear about from my patients in clinic. Many of you might know that it is one of the symptoms that a lot of people experience before they're ever diagnosed.

Why do people with Parkinson's experience constipation? There are a lot of different reasons. Stephen mentioned earlier, when we were talking about neuropathy, that the nerves to the GI system can be affected, so that can be part of it. Maybe somebody doesn't want to drink a lot of fluids because it's hard for them to get up and go to the bathroom, so they're maybe a little on the dehydrated side. Maybe they're not getting enough activity because there needs to be a lot of exercise to help prevent the constipation. Medications, as Stephen will talk about shortly.

Constipation can mean different things for different people. There are a couple accepted definitions, one of them being that somebody has a bowel movement less than three times in a week. But people do have different habits throughout their life, so it's not going to be the same for everybody.

Somebody might just have difficulty. Maybe they go more than three times in a week, but maybe they have a lot of difficulty passing stool. They finally go and it is hard and small. I want to point out, too, that sometimes somebody will have watery stool and they'll think that, because they're passing stool, they're not constipated. But this can actually be a sign of severe constipation because what can happen is a lot of the stool can build up and be all hard, and then the watery stool is just kind of going around it. It's leaking around it. That person can have an impaction, which can be dangerous and even life-threatening if it causes a bowel obstruction and causes a tear in the colon.

Ellen Walter 00:35:00
That actually is a sign of severe constipation. It's really important that we identify if somebody has constipation and that we try to prevent situations like that, or hemorrhoids or other potential problems.

Besides the obvious of what we were just talking about, some symptoms that people might experience with constipation are nausea, cramping, and a feeling of being full or bloated. These are also signs of the slowed gastric emptying that somebody with Parkinson's might experience as well. The other name for it, Stephen mentioned earlier, is gastroparesis. Basically, this is just that the stomach is not emptying in the time period that it should after somebody has eaten.

He mentioned those nerves again with the digestive system, and so maybe this is compromised, and the contraction of the stomach muscles is slow and weak or maybe barely working at all. The food just kind of sits there. This can happen early in the disease. It can happen later in the disease.

Some other symptoms that go along with the ones I was talking about with constipation: somebody might have acid reflux. If you think about it, that food's just kind of sitting there, and so some of it might come back up. There might be the reflux. Because of that feeling of fullness, they might have loss of appetite, which might result in some unintentional weight loss. If they have enough, some of it can just kind of build up and harden and stay in there, or it can cause some vomiting for some people.

Not only does this cause great discomfort for people with Parkinson's, but it also can cause a decreased absorption of the medications, which Stephen will talk about. Next slide.

Again, I've said it before, and I'll say it again: you don't want to blame everything on Parkinson's disease. As we get older, maybe either naturally this happens or maybe we're not taking care of our bodies as well. As we get older, we are more likely to have some GI issues. There might be some malnutrition. Maybe somebody's not getting the proper nutrition, so they're not eating a lot of fruits and vegetables or doing what's most convenient for them, especially if they're cooking for themselves or one other person. Maybe they're dehydrated for the reason we talked about earlier with Parkinson's. Other people might do the same.

Then there are the different diseases. You will not be surprised to hear that diabetes is one of the leading causes, or gastroparesis happens most commonly in diabetes. Then there's thyroid disease and other diseases, cancers. Stephen mentioned the nerve that we talked about, the vagus nerve. If that gets injured in a surgery, then that can cause the gastroparesis as well.

As always, we're going to talk about those red flags that you want to be aware of in case you're experiencing any of them. The first is pain. We all experience some pain at some time. Maybe we ate too much or there's another reason. But if you're having frequent abdominal pain or persistent abdominal pain, then that might be a sign that there's something more serious going on. For sure, if you have blood in your stool, that needs to be checked out right away. I talked about the watery stools. Unintentional weight loss can be a sign that there's something such as a cancer going on, and then unexplained fevers where there's no other reason.

I'm going to let Steven take over and tell you some about the medications.

Steven Swank 00:38:16
Thank you.

Medications can cause a lot of GI side effects: constipation, nausea and vomiting. These are some common side effects from even Parkinson's medications that we use. There are also medications that are dehydrating and pulling water out of our body, causing some issues with constipation. We call this class of medication diuretics, or you might hear them called water pills. An example is furosemide, or Lasix, where it pulls the water out of our body. There's also a medication called HCTZ, or hydrochlorothiazide. That's often used for blood pressure, and it's not as likely to cause dehydration, but it can happen. It's also been associated with a drug interaction with a Parkinson's medication, amantadine.

Since a lot of older patients with Parkinson's disease are already at increased risk of being dehydrated, we like to avoid these diuretic or dehydrating medications when possible.

There are also medications that can contribute to that gut slowing, that gastroparesis. We call these anticholinergic medications, or they might have side effects called anticholinergic, where it slows the gut down, contributes to constipation, and also really dries us out. These can be medications such as Benadryl, diphenhydramine, and oxybutynin. These are a couple examples.

Gastroparesis itself, which can be common in Parkinson's disease, can also affect the way that medications are absorbed. Most medications that we take by mouth are absorbed in the stomach or the small intestine, which is after the stomach. Levodopa, for example, that we use in Parkinson's, goes to the stomach and then gets absorbed in the small intestine. If the gut is moving slower, that takes more time for the levodopa to get to where it needs to be. That can result in more breakdown of the levodopa until it can get absorbed. That can result in less effect of the medication or a delayed effect, so it happens later than we think it would.

There are also medications called proton pump inhibitors, which I mentioned earlier. These medications block stomach acid pretty significantly, and that can increase the risk of a condition called SIBO, or S-I-B-O. That's called small intestinal bacterial overgrowth.

There are some gut bacteria, such as Enterococcus faecalis, which can actually break down levodopa itself.

There's another type of infection. It's a stomach infection called H. pylori. This stomach infection has been known to decrease the absorption or the uptake of levodopa, decreasing the effects. While it's not completely known why this happens, there have been some new studies that came out that show that it may actually be the H. pylori consuming or eating the levodopa medication that actually helps the H. pylori infection grow.

When we look at interventions for gastrointestinal issues, there are so many different types of these GI issues. Again, it's really important to rule out and treat the underlying causes first. You may be referred to a specialist, such as a gastroenterologist, so that they can look at non-medication and medication interventions.

Ellen Walter 00:41:46
Again, I think you're starting to see a pattern here when we ask, is it Parkinson's disease, is it aging, or is it medication? A lot of overlap.

It's so interesting to hear, Stephen, what you were saying about the infections. The SIBO in particular is interesting because when we first met Kelly, Kelly shared her story about having SIBO. Kelly, can you share your story with everybody here today?

Kelly Weinschreider 00:42:12
Sure. As my Parkinson's progressed — I've had it about 20 years — I developed gastroparesis over time, as Steven mentioned, which slows the digestive system. One thing that happened to me is that I did get SIBO, which is small intestinal bacterial overgrowth, and it causes bloating, gas, nausea, vomiting. It really upsets your digestive system. I lost a lot of weight. I ended up in the ER a couple times for dehydration. It really had a very large impact, but I had a lot of trouble getting it diagnosed.

Actually, my movement disorder specialist called in a favor to a gastroenterologist who treats and researches Parkinson's, and he knew right away. But it took a long time to get to that point where I found a specialist that knew SIBO and could diagnose it very quickly.

At least in my experience, I found that little is known about SIBO in the broader medical community, and my friend had the same experience. I guess, Stephen or Ellen, how common is this in Parkinson's?

Ellen Walter 00:43:14
It's interesting that you say that because, I'll be absolutely honest, I had never heard of SIBO until I had a patient diagnosed with it. Then I started looking into it. It was interesting because when I read about it, I saw that in the studies they talked about not only did the GI issues get better, but that people's motor fluctuations, that on-off time, got better because, as Steven mentioned, with the SIBO, it delays the absorption. Of course that makes sense, right? Then people are going to have more off time.

When you do a literature search, though, only 12 articles actually came up on SIBO and Parkinson's. So, to answer your question about how common it is, when I learned about it from my patient, I had asked some of my colleagues if they had heard of it, and they hadn't. In the articles that I read when I started to look into it, it looked like about 25 to 50% of people with Parkinson's are thought to experience it at some time. Again, very, very little out there in the literature. There's more about SIBO in general, but with Parkinson's, very little.

I know that based on some of the literature, there was a study that was being done a couple years ago, and it didn't go well. The recruitment was poor. They ran into all kinds of problems. I think that it definitely sounds like it's interesting, especially when we think about the on-off times, but it sounds like there's still some investigation and work that just needs to be done before we can learn more about it.

Kelly Weinschreider 00:44:44
Would you see that in an aging community versus just Parkinson's? Is that a disease you get as you're aging, possibly?

Ellen Walter 00:44:51
When I read about it, I didn't see it specifically list age as a risk factor, but being older puts us at risk for things that put you at risk for the SIBO. For example, the older we get, the more likely we are to have surgeries, right? So a surgery that might damage the nerve, because anything that is going to slow down or cause the gastroparesis and have things just kind of sit there — first in the stomach, but then the small intestine — it's just kind of sitting there, that's going to put you at risk. I think that, even though they don't list age specifically, as we get older, we're going to potentially experience more conditions that are going to put us at risk.

Kelly Weinschreider 00:45:32
At least in my case, SIBO is recurring. Since I've been diagnosed, probably four or five years ago, I've had maybe four or five, maybe once a year, sometimes twice a year, infections. At least in my case, it's recurring. My doctor told me to expect that — that some people have it once and then it's gone, and other times, for some people, it comes back and recurs.

Ellen Walter 00:45:54
Actually, that's what I had read. They said that was one of the main concerns with it, is that about a 44% recurrence rate. They said that created its own problems because the types of bacteria are so different that it requires some very broad medications, and they were worried about how it's going to end up damaging the good flora over time. I think that was part of the concern with identifying it and then treating it.

Next slide, please.

Then the question is, what do we do with all this information? When do you seek care and who do you see? I would definitely say, if you have any of the red flags, that you need to seek care and not postpone that. If you have neuropathy, I think you need to have that looked into, or if you suspect you have neuropathy, it should be looked into. If it is identified that you do, then they can look at the potential causes and start treating it, like say it's a deficiency or getting sugar under better control with diabetes, so that hopefully permanent damage is prevented.

For fatigue and GI issues, you can see there can be quite a lot that can cause it, and some of it can be serious. If it's bothering you, if it's affecting your quality of life, then I would definitely get it checked out. Who you talk to about it: you can never go wrong with your general practitioner, so primary care provider, internal medicine. Sometimes people say they feel more comfortable talking to their Parkinson's specialist because they tend to see them more often. There's nothing wrong with that. You can always start, and then depending on how they practice, they may start a basic workup and then they may refer you either back to your primary care provider or to some specialists if needed. Next slide, please.

Steven Swank 00:47:46
As a pharmacist, I want to share some medication tips and resources. It's really important to take medications on time, particularly in Parkinson's disease, and avoid missing doses. Filling up a weekly pill box — I use a pill box even though I have one pill a day — using that and filling it up about the same time every week, so you know if you took a medication or not.

Using medication alarms and reminders can help keep you on track. You can have that as a watch, like a vibrating watch if you don't want it to make any noises. You can use smartphones. There are many smartphone apps for that.

Also, let doctors know about potential side effects, and if you're unsure, let them know. We want to avoid what's called a prescription cascade or a snowball effect, where somebody gets a new medication, they have an issue or a side effect, and then they're given another medication to treat that side effect. Then that medication causes an interaction or a side effect, and so they get another medication — hence the snowball.

Please keep your doctors in the loop early. It's really important to choose one pharmacy for all your medications so that you have a pharmacy team that knows those potential drug interactions.

Please bring a complete and current medication list to all your doctor visits. This includes prescription, non-prescription medications like over-the-counter medications, supplements and vitamins. Make sure to maintain that list as it changes and always keep one with you. You want the name of the medicine, the milligrams or the strength — how many mgs — and then how often you take it.

I would also encourage everybody, if you don't already have one, check out the Aware in Care kit from the Parkinson's Foundation. It is a great resource, a kit that also comes with a medication card and a lot of other resources that you and/or your caregiver will bring to a hospitalization to help share what's going on with your Parkinson's to your hospital care team.

Some takeaway points from our presentation today: again, I want to emphasize bringing a complete and current medication list to your visits. That would include prescription, non-prescription, over-the-counter supplements and vitamins, because they all have the potential to interact.

Ellen Walter 00:49:52
I'm going to say what I've said before: do not blame Parkinson's disease until it is time. I've definitely had some situations where a person has had one of those red flags and we've talked about it. I've insisted that it is not their Parkinson's disease, but every time they went to get checked out, it came back, “It's just your Parkinson's.” In two of those instances, it did end up being cancer.

Know and report your red flags. As you saw with all of these topics, Parkinson's can be related to them, but it is not always your Parkinson's disease. Kelly?

Kelly Weinschreider 00:50:24
For me, share your symptoms with your healthcare providers. I think, as we've demonstrated, it's important that they understand each specific symptom and how it relates to whether it be Parkinson's or not Parkinson's to get you the best quality of life.

Ellen Walter 00:50:37
Definitely.

Steven Swank 00:50:39
We have some references listed here. We definitely want to thank everybody for their time and attention today.

Ellen Walter 00:50:45
Thank you.

Kelly Weinschreider 00:50:46
Thank you.

James Beck 00:50:47
Absolutely. Thank you, Ellen Walter, Steven Swank and Kelly Weinschreider. What an excellent presentation.

We've had over 1,200 people online join us through Expert Briefing through Zoom, and another 135 to 150 through Facebook. The questions have been coming in. Unfortunately, we won't be able to get to them all. Just to flag for our viewers, questions we don't get to, we have lots of resources online. I'll talk about those in a second. We also have a helpline, 1-800-4PD-INFO, and we have specialists standing by who can answer questions as we go.

With that, I also want to take time out real quick to thank our sponsor, Theravance Biopharma. Their support is really critical for making events like this possible.

Let's get into the questions. A lot have come in, and let's start with some very simple stuff. I'll try to do my best to follow our outline, going from neuropathy and fatigue and then GI issues, but forgive me if I bounce around a little bit.

Let's just start off with Ellen. A quick thing to keep in mind, perhaps, is to ask: is neuropathy unilateral or bilateral usually in its presentation? To help people differentiate from maybe a sciatic nerve problem versus something true neuropathy.

Ellen Walter 00:52:12
Right. If we're talking peripheral neuropathy, it typically is on both sides. But there can be other types of neuropathies. They consider, again, carpal tunnel, and that might be one side. Or there's something called meralgia paresthetica, which sometimes people will feel like a numbness in one thigh due to a compression on that side. So again, the peripheral tends to be more on both sides, but then there can be some specific neuropathies that are going to be on one side.

James Beck 00:52:39
Got it.

When we talk about neuropathies and some of the feelings that people experience as part of this, and Kelly and maybe Ellen, you can speak to this, one of the questions that's come through is: a person has a tingling feeling in their feet, but they feel cold. We've talked about burning sensations or numbness. How does someone distinguish between, is it neuropathy or is it not? What's the advice for this? Kelly, what have you experienced?

Does that sound familiar?

Kelly Weinschreider 00:53:08
Well, it does. My dad, as I said, I don't have neuropathy, but my dad has that sensation of burning kind of behind his knees, and that travels down towards his feet, but his feet are very cold. He has tingling, numbing, so he has exactly what you said. He has the burning sensation, but then it turns to cold. And I'm not sure, Ellen, if that's typical, but he exhibits that type of characteristic as well.

Ellen Walter 00:53:35
Yeah, and I think sometimes people do say they have the coldness, and sometimes they don't. And then there are people who don't have neuropathy who say they have cold, and I'll send them to their primary care provider, and they'll say, I don't know why you're experiencing that. But I think in diagnosing neuropathy, again, seeing a neuromuscular specialist, they can do some tests. So an EMG, a nerve conduction study, where they measure the strength and the speed of the messages traveling through the nerves, and then the EMG looks at the muscles both at rest and contraction. That's a way to get a true diagnosis of neuropathy.

James Beck 00:54:10
That's right. And I think the emphasis here is that your nerves are not functioning properly, and so that impacts how you feel about it. Just to clarify, because this has come through and we brought it up a little bit on our last discussion, some people with Parkinson's experience cramping in their feet. They get the pain because of that. Would you mind talking a little bit about how that's different than what we're talking about here?

Ellen Walter 00:54:35
Sure. So the cramping in the feet is often called dystonia. Sometimes people will have their foot turn to the side, or maybe their toes will curl under. And this can be an off symptom, so when the medications aren't working, and then when they take it, the cramping goes away. Maybe their medications just need to be adjusted to kind of smooth out those fluctuations.

Sometimes, though, people can have that dystonia, that cramping, even when their medications are working. And so when that is the case, often people will get botulinum toxin injections to help treat that and relax those. Kelly, I don't know if you've experienced that before.

Kelly Weinschreider 00:55:13
I am just now starting to get some of that. Can that be a side effect of DBS or a result of DBS?

Ellen Walter 00:55:20
Yes. So there's two things. One is that sometimes people can have what we call capsule effects, so we're hitting a part of the brain, and that can cause some muscle contraction. And then the other is in regards to kind of like I was talking about, like the on dystonia with the medications. DBS kind of puts you into that on state more. And so sometimes it can be related to being in that on state more.

Again, I've had that situation in programming where everything else will look beautiful, but then their foot starts to turn. And so in those situations, once we've figured out that it for sure is not like a capsule side effect, then we'll have that person get some Botox injections to kind of straighten it out, and then things are much better.

James Beck 00:56:03
One of the things we've talked about, Stephen, you brought up that low B12 levels can contribute to this. It can be through some of the medications, supplements for B12, maybe through shots. I don't know if there's an oral medication as well. Do people often have to take those supplements forever once they've determined that, or is there a period where they can stop? As you can appreciate, many people with Parkinson's have a lot of pills they take, and anytime you can reduce that burden, it's to an advantage.

Steven Swank 00:56:33
Great question. I think it's going to be very patient-specific. Generally, if they do have a deficiency, so let's say a level less than 200, or they could be borderline, they will generally get medications, maybe injections or oral or under-the-tongue medications for a few weeks, and then they might be able to back off to weekly or monthly.

And then, what's the cause? If that cause is identified and it's removed, then you wouldn't necessarily need to supplement it. So it would be good to maybe check in on those B12 levels and just monitor them over time. You wouldn't have to always necessarily supplement them.

James Beck 00:57:12
Got it. That's good to know that there could be a light at the end of that tunnel, so to speak. A question came in through Facebook, and this is a practical one. Are there ways to deal with neuropathy that are perhaps not necessarily through medication? Physical therapy, other types of approaches to deal with neuropathy, or is it always some type of medication adjustment to think about this?

Ellen Walter 00:57:37
That's a good question. I know one thing is exercise, and we're always going to tell you to exercise with Parkinson's anyways. Best thing you can do. But even with neuropathy, because it increases the blood flow to the nerve area, so the oxygen and the nutrients and stuff. So exercise is definitely one.

Sometimes people will use, I know, Steven, you mentioned like the percutaneous with a different type. I was thinking a TENS unit, but sometimes people use a TENS unit kind of thing. There can be some different things. Kelly, has your dad tried any different things?

Kelly Weinschreider 00:58:15
He's used some lidocaine patches on his sacroiliac joint. Not to a great extent. They didn't have much effect, but that was looking at also when we thought it was joint pain. But he's in physical therapy, and I do believe that that's helping.

Ellen Walter 00:58:32
Good. Especially, as I was talking about earlier, this isn't necessarily like the pain, but just the increased risk of falls and walking problems with the neuropathy, that the physical therapy I would at least hope would help with that aspect of it.

James Beck 00:58:48
Yeah, absolutely. Some more questions are coming in regarding fatigue. Stephen, one for you. I think this came probably from a healthcare professional who mentioned that you mentioned rasagiline as a potential treatment for fatigue. This person mentioned selegiline, and metabolite breaks down into amphetamine; it's one of the components.

So what are your thoughts on rasagiline versus selegiline, selegiline being generic, often at lower costs, although not a lot of the evidence there to support it, probably because it's off-patent and there is not the pharma support to push those studies.

Steven Swank 00:59:24
Great question. So, yeah, like you said, selegiline will actually break down to amphetamine metabolites. When we look at the data for that, there was a large Cochrane review that was done, a meta-analysis, that examined different types of medications for fatigue. Again, rasagiline still has the better data for that. And so we generally recommend starting with rasagiline if the patient can afford it, just because we do have the data on that.

I really can't speak to as much anecdotal with that. I don't know if you or Ellen can, but we would typically still try to go with rasagiline first if the patient can afford it.

Ellen Walter 01:00:03
Yeah, we tend not to use selegiline very, very much.

James Beck 01:00:07
Okay, it's good to know. Here's a question for you. As people experience fatigue, and we've talked about how fatigue can be different, but thinking about the multiple ways it can cause problems, should someone just plow through the fatigue that they're feeling, or should they actually stop and lie down and take a nap, recognizing that as you take naps during the day, that can then interfere with sleep later at night, and then you may never escape this cycle of fatigue? What are your thoughts and approaches for that?

Ellen Walter 01:00:44
So, I have a couple of thoughts, and then, Kelly, on what you're thinking. I think if people are so exhausted that they are also, because again, separating out the fatigue and the sleepiness, if they're so exhausted and they just feel that they need to rest, it's okay to take a nap. But I would limit it: 30, 45 minutes, which I know, nap sleeping is sometimes the best sleeping, so it's hard to get up after 30, 45 minutes. But if you can limit it to 30, 45 minutes, about the same time every day, so that it doesn't interfere with your night's sleep.

I've also had some patients tell me that if they've identified that time of day, and it tends to be between 2 and 4 p.m. for whatever reason, if they've identified that time of day that they feel really, really fatigued, they purposely schedule themselves something during that time so that they can't succumb to it. Maybe it will be a work meeting they'll schedule, maybe they'll schedule a walk with somebody during that time. But if they schedule something during that time of high fatigue, they tell me that they actually usually can get through it and feel okay. Kelly, what have you done? Because I know you said earlier that fatigue is a big issue for you.

Kelly Weinschreider 01:01:48
Yeah, and I think I fall into the category of I'm fatigued but not sleepy. So for me, a nap, while a nap is great, it doesn't really resolve the problem. It really doesn't resolve the fatigue. I typically don't nap, but I think for me, I have more of the REM behavior disorder, where I talk in my sleep, I act out my dreams. So for that, I'm doing a sleep study in the next couple weeks. I've had some, but it's gotten worse lately.

I have a sleep study coming up to relook at that, but that's more my issue, I think, is not sleeping well at night, causing more fatigue during the day, but not being sleepy, just really more mental and physical exhaustion versus tired, if that makes sense.

Ellen Walter 01:02:33
Yeah, for sure.

James Beck 01:02:35
It totally does. I know we had organized, based upon feedback from our community, a symposium on fatigue, and one woman who had Parkinson's and was battling fatigue commented that the difference between being tired and fatigued is that it's like having a baby who keeps you up at night. You're tired, but you still get up the next day. But being fatigued is knowing you still have to get up, but just not being able to because you're just so drained.

As you pointed out, Kelly, it's not just being sleepy. It's these other issues, and in my understanding, even here, it's not something easily resolved. It's a difficult one to treat.

We're at the top of the hour, but I've got a few more questions, and certainly GI issues are such a pressing issue for people with Parkinson's. We talked about small bowel overgrowth. That's SIBO, correct? So initials, just to confirm, are S-B-O because there's a lot of questions coming in about how people want to look about it and understand more about it.

Kelly Weinschreider 01:03:40
It's S-I-B-O, small intestinal.

James Beck 01:03:42
Small intestinal. Thank you.

Ellen Walter 01:03:44
Yeah, and actually I'm glad you brought that up because, Kelly, I was going to ask you, and then we moved on, in regards to how you ended up getting yours diagnosed. What did they end up doing to find it for you?

Kelly Weinschreider 01:03:56
Well, like I said, I got to a GI specialist that had seen SIBO, and his sister actually had Parkinson's, so he did a lot of research in GI issues with Parkinson's. So I really, really lucked out. Truly, I did. I had a lot of bloating, I had a lot of gas, it didn't hit my system, I had some vomiting. He took one look at my stomach and said, "Oh yeah, this isn't good. You definitely have SIBO."

He prescribed Xifaxan, which can be used for, I don't know if it's off-label or not, but that targets the small intestine, and it really works quite well. But yeah, it took finding the right doctor. I spent probably six months to a year losing probably 30 to 40 pounds, just not eating, just vomiting, being very dehydrated, in and out of the ER, and no one could figure it out. But this one doctor just, in a heartbeat, was like, I know exactly what you have.

Ellen Walter 01:04:59
Did he do one of the breath tests? I saw there were a couple different types of breath tests that they do to diagnose SIBO. Did he end up doing one with you, or did he just go based on your symptoms?

Kelly Weinschreider 01:05:09
He went based on my symptoms. He was of the mindset that some of those tests can be false positives, false negatives. I don't quite recall.

Ellen Walter 01:05:18
I think both, from everything I read.

Kelly Weinschreider 01:05:19
Yeah. So he went more, I think, based on his experience. But he knew right away. To this day, I get the same routine symptoms every time, and so he knows just about every time. It doesn't vary. So just about every time, it's the same thing.

James Beck 01:05:37
A couple of questions came in about flatulence, gas, for Parkinson's constipation. Is SIBO often caused then for this? Is that a good indication, or are there other reasons why people may feel this bloating from it? Any thoughts on that?

Kelly Weinschreider 01:05:56
I have to say, and this has come up in my support group many, many times, SIBO produces the worst gas you'll ever encounter. It really is quite horrible, and the bloating it causes is rather extreme. But if you have very, very bad gas that's unusual, that is one symptom of SIBO that can indicate you have an issue.

James Beck 01:06:22
Okay, that's helpful to know. Constipation is a problem. Lots of questions came in, people using different treatments for it. It seems just what people with Parkinson's have to deal with day in and day out. Is there any type of standard regimen that people could consider to take as an over-the-counter type approach to deal with this that you could recommend?

Steven Swank 01:06:50
Yeah, I can start, and if you want to fill in. Again, I would just make sure with any sort of issue that you have, that you let your doctor know. You don't want to mask if there's something more serious going on. One thing also from non-medication, you want to make sure patients are hydrated. Many people are dehydrated.

Getting about 64 to 80 ounces, or eight to 10 glasses of water, is kind of a rule of thumb to make sure they're hydrated, avoiding things like caffeine, alcohol use. And then for medications, depending upon the patient, MiraLAX or polyethylene glycol is commonly used. It's powder that you put in a glass of water, and you drink every day.

Again, patients that might have kidney disease or heart failure, you might want to watch their blood work a little bit closer. That would be something that would be commonly used. Sometimes senna or sennosides can be used. MiraLAX is generally used more commonly just because there's a long safety record for that.

James Beck 01:07:49
Yeah, and my understanding is, the less people can deal with stimulant laxatives, the better off in the long run. Would you all support that assertion? So people should probably not rely on Ex-Lax, but more on hydration, a good diet full of vegetables and fruits to provide bulk-forming aspects, as well as some of these other, MiraLAX and things like that.

Steven Swank 01:08:18
Yeah, I could just say one thing to that. I would agree, a diet rich in vegetables is going to be really helpful, and avoiding things like Ex-Lax or just unnecessary enemas. But when it comes to stimulant laxatives, there's been a lot of controversy over senna as far as being a stimulant laxative and concerns about that. There's been more data to show that actually senna long-term use in older patients, in a geriatric population, is a good option for some patients. But again, maximizing those non-drug interventions first.

James Beck 01:08:50
Yeah, absolutely.

Ellen Walter 01:08:52
The only one thing that I would add to that is, the Parkinson's Foundation's handout on constipation is fantastic. So if you go to their website, you go to PD Library and search constipation, it's basically eight pages of everything you would want to know about the different options for treating constipation and all the little pearls. I hand that out left and right because, as we established today, a lot of people with Parkinson's have constipation. So it's a great handout. If you haven't read it yet, I would go check it out.

James Beck 01:09:21
Yeah, I organized a meeting around that, and that led to that publication. So I'm really pleased to see that it gets widely used and referenced. It is a fantastic resource.

I want to thank again our presenters, Ellen Walter, Steven Swank and Kelly Weinschreider. We are going to, if I can pull up some slides, provide an opportunity to again thank our sponsors. I think I have control here. There we go. Theravance Biopharma sponsoring us.

Again, for those of you who are here to capture CEUs, there's that one free CEU available until April 9. There should be a post in the chat. If we can just put that again, I saw that someone came late and didn't get the link there. It will also come by email as well. This recording will be made available on demand later this week, and we're also going to translate it into Spanish. So if you are more comfortable in Spanish as your language or have friends who are more comfortable in Spanish as their language, this will be made available as well.

The slides, I know some people had asked some specific questions about it, are available for download. For certain, it's back into the chat to see there. It will also be on our website where you can get this information as well.

We've completed our first two of our spring series, and we've got one more to come in April. That'll answer some of the questions that people had around mental health, depression and anxiety. We'll have Dr. Pontone joining us as part of that. It'll be great to have him.

Resources. Ellen mentioned a lot of resources available. There are a tremendous amount on our website, the fact sheets we talked about for constipation. We have podcasts, medication guides as well. And then there's the general resources, as Stephen mentioned, our Aware in Care kit, which is really helpful for people who are going to the hospital, has some extra information, but just a way to keep your information organized so as you go to a clinician, you have that list of medications handy.

We always have our PD Health at Home series during the week, Monday, Wednesdays and Fridays, providing lots of useful information; our Helpline for those who had questions that didn't get answered. And again, I encourage everyone who has Parkinson's to consider PD GENEration, our study to provide genetic testing at no cost to understand whether people have a genetic link to their Parkinson's disease and may be able to use that information to participate in upcoming clinical trials.

So we're at the end, but don't go anywhere. When we close this Zoom meeting, you should see pop up on your web browser an opportunity to provide feedback. That feedback is really critical for us to help improve our webinars constantly, provide that feedback to our presenters. We're always looking to improve and always happy to hear compliments as well. So feel free to do that. And with that, I want to thank you for your time and wish everyone a happy Tuesday. Until we talk again in the spring, in April. Take care. Bye-bye.