Gastrointestinal Issues and Parkinson's: A Recording from a Victory Summit Event

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so we're gonna spend the next few minutes talking about the gastrointestinal symptoms of Parkinson's disease which you may be surprised to learn have been recognized as part of the disease process as far back as James Parkinson's original description of the disease in 1817 you can see that well I'm not sure how well I'm gonna be able to point but um oops he very clearly describes constipation and difficulty with defecation in a patient with Parkinson's disease and so what other symptoms are common in Parkinson's disease well the spectrum is quite diverse in spans the entire GI tract from top to bottom pun intended and the list thank you the one person out there who's laughing so the list includes drooling difficulty swallowing bloating feeling full too soon during meals or even loss of appetite nausea sometimes even vomiting constipation difficulty with defecation which is generally defined as excessive straining pain or a feeling of incomplete evacuation and last but not least weight loss and this is not a comprehensive list but these are just some of the more common GI symptoms that we see in Parkinson's disease so why are these symptoms important well for starters we all know from personal experience that if you're having GI problems it negatively impacts your quality of life on a day-to-day basis but they're also associated with some potentially very serious and even life-threatening complications like malnutrition aspiration pneumonia colon obstruction and even rarely perforation and in fact they're one of the top five causes of hospital admissions amongst the parkinson's disease population and last but not least they can affect other Parkinson's disease symptoms and the classic example that I like to use here is that slow stomach emptying which we're going to talk about in a few moments which is pretty much ubiquitous and Parkinson's disease causes erratic absorption of one's oral Parkinson's disease medications and can lead to what we refer to as motor fluctuations and additional medication side effects and we're going to talk more about that later so we're gonna now go through some of these more common GI symptoms one by one we're gonna talk about the symptoms and we're going to talk about what you can do about them if you're experiencing them so if we're gonna start with weight loss which is usually modest we're talking on the order of about 10 pounds and women for some reason seem to be more vulnerable than men and we don't really know why that's the case the cause of the weight loss is not entirely known but there are several theories about why it may happen and we're gonna talk about all of those in just a moment and if it's dramatic meaning if it's much more than about 10 pounds or if it's ongoing we start to worry a little bit that maybe it's not just Parkinson's disease that perhaps there's a medical problem that we run aware of that's contributing to the weight loss and so at that point we strongly urge you to talk with your primary care provider to make sure there's not something we're missing medically that might be going on and at that point it's also critical to get a registered dietitian involved who can look very critically at what you're eating and what your needs are so that you can come up with a dietary plan that will help you manage the situation and prevent further weight loss so some of the theories about why the weight loss occurs are number one impaired sense of smell and therefore taste which can make food less exciting than it used to be difficulty swallowing which is common in Parkinson's disease which makes eating more difficult and it makes you eat more slowly which then may in turn make you feel full sooner also if you have lots of tremor or dyskinesia or both and you're moving constantly you're burning a lot of calories and it can be difficult to keep up with your oral intake and then medication side effects are potentially a big factor for example nausea and loss of appetite common side effects of some of our medications that we use to treat the motor aspects of the disease so any or all of these factors may be contributing so we're gonna move on and talk about drooling so more than 70% of individuals with Parkinson's disease endorse this feeling of having too much saliva in the mouth and they may or may not have over drooling to accompany that and aside from the social embarrassment factor which many people complain of it can be dangerous because it's associated with aspiration pneumonia so if you have an excessive amount of saliva in your mouth it can go down the wrong way and end up in your lungs and you can then develop aspiration pneumonia which can be very serious so interestingly when they've studied individuals with Parkinson's disease it's been found that the saliva production is actually not increased as you would expect in fact it's decreased so the problem is not that you're making too much saliva it's that you're swallowing less frequently and less efficiently and so you're not managing that saliva as well as you perhaps once did and so you get excessive cooling in the mouth and at some point you'll even get overflow in the form of drooling so what can you do about it fortunately there's a lot that we can do about this problem so if it's very mild you might find that if you just chew gum or suck on a piece of hard candy in social situations that that can be enough to encourage you to swallow more frequently and therefore avoid drooling that's probably not going to work if you have more moderate to severe drooling and so at that point you probably want to have a conversation with your neurologist about the treatment options fortunately there are several I've listed some of them here not with the intention of actually talking about all of them but just to let you know that there's an array of treatment options available and these come in different types there are topical medications that you apply directly inside your mouth there are pills that you take that help to dry up secretions as well and then for people who have not responded well to the topical or the oral medications you can even consider botulinum toxin injections into the salivary glands which can be very effective in drying up oral secretions for up to three months at a time so there's a whole arsenal of medications that can be very helpful in managing this problem so moving on to difficulty swallowing again 75% of individuals with Parkinson's disease who are studied are found to have some problem with their swallowing and they may or may not be complaining of difficulty swallowing so you can have this problem ooh sorry and not know it so again this can be potentially very serious because it can be a setup for aspiration pneumonia if you're not swallowing normally things can go down the wrong way and you can end up with aspiration pneumonia so certainly if you're noticing any difficulty that is coughing or choking during meals or coughing or choking while you're drinking liquids it's a conversation that you want to have sooner rather than later with your neurologist so that it can be evaluated so the evaluation generally involves a visit to speech therapist as well as some specialized radiology tests that look at your swallow function so if a problem is identified what can you do about it well for starters maximizing your Parkinson's disease medications should really be the first step and the logic for this is that swallowing is a complex process it involves the coordination of multiple different muscle groups and just like the muscles of your arms and your legs respond to Parkinson's disease medications some of those muscle groups do too so really making sure that you're on an optimal Parkinson's disease medication regimen can go a long way toward improving your swallowing swallowing training by a speech therapist can help to prevent aspiration unfortunately it's only in the very rarest of circumstances that individuals with Parkinson's disease require feeding tube placement due to recurrent aspiration pneumonia so we'll move on and talk about nausea this is probably other than constipation the GI symptom that I spend most of my time talking with people about because it's just so prevalent so it's a common side effect of multiple Parkinson's disease medications particularly what we call the dopaminergic medications so those are medicines like levodopa and the dopamine agonist like pramipexole and rope in a role but it also occurs in people who don't take any medication at all and so it's really part of the underlying disease process and the reason for that is because individuals with Parkinson's disease develop slow stomach emptying and that leads to nausea very commonly slow stomach emptying also causes a variety of other upper GI symptoms that we're not going to talk about in detail but that can cause bloating after meals abdominal pain feeling full too soon during a meal or not being able to finish a normal sized meal and weight loss so I touched upon this briefly earlier but we're gonna talk about it again now slow and erratic stomach emptying can also impact your response to the medications that you take to control your motor symptoms levodopa which is one of the more common medications that we use has to make it all the way through the stomach into the small intestine to be absorbed and as you can imagine if your stomach does not empty normally that's a real problem and so it's been found in in more than one study that individuals who have particularly slow stomach emptying are more likely to have motor fluctuations where their response to levodopa is erratic from dose to dose so what can we do about nausea well for starters you want to have your neurologist really scrutinize your medication list and make some adjustments as needed we have a lot of tricks up our sleeve things we can try if we need to to try to help with medication related nausea if you're one of those individuals who's having nausea and it's believed to be related to slow stomach emptying as opposed to just a medication side effect then you may want to think about dietary modifications there are special diets for people with very slow stomach emptying that don't so much involve eating special food so much as eating a certain way so some examples of the basic principle of a diet for someone with slow stomach emptying our eat several small meals a day instead of three very large ones don't lie down right after you've had of me I will try to stay upright for an hour - after you've eaten drink lots of fluids during every meal to help move things along so some lifestyle changes that can go a long way toward helping manage these symptoms it's important to know that there is a medication out there for slow stomach emptying called metoclopramide this is an effective medicine for slow stomach emptying in certain populations but it is not a good choice for people with Parkinson's disease because it leads to worsening of your parkinsonism and unfortunately this medicine is really the only FDA approved agent on the market right now in America for slow stomach emptying so often times I run into people with PD in my clinic who have been put on this medicine by the primary care doctor or by their gastroenterologist and it can be a real problem so it's important to be aware of that and just be careful there is another medication that's not available currently on the US market it's called domperidone it is safe and effective for this problem in the parkinson's population and unfortunately it's not available in the u.s. at present but you can order it from canada your physician can write a prescription for it and you can get it from canada and we do do that when we need to and I'll just mention that there's a few other medications that are still currently investigational drugs but they're on the fast track for approval from the FDA and I believe they will be available soon and they will probably be very safe and effective alternatives for this problem in the Parkinson's disease populations so although our options are somewhat limited now in the very near future they should be more plentiful so constipation along with nausea I spend a lot of time talking with people about because it's just such a common problem in Parkinson's disease more than half of individuals with PD are experiencing this problem at any given time and it occurs very early in the disease course and in fact in some individuals it even starts months or years before the motor symptoms the disease and it's just due to slow transit through the colon so approach to constipation management should always start with lifestyle as opposed to medications so lifestyle modifications like drinking more fluids eating more fiber getting more daily physical activity should always be your first line of defense against constipation it's also important to have your doctor scrutinize your medication list to make sure that you're not taking something maybe for another medical problem that's making constipation worse and if there's something on the list that's potentially involved trying to switch to something else or get off that medication can be very helpful so if you're doing all of those things and it's still not enough you may need medication to help manage your constipation and fortunately we have very good data in the Parkinson's disease population to tell us which medications for constipation are safe and effective for long term use and what those studies suggest is that it's best to start with psyllium which is available over-the-counter without a prescription it's often sold under the brand name Metamucil but you certainly don't have to buy the brand name and it can be used up to three times a day as needed to manage constipation it's fine to take this with or without a stool softener stool softeners don't help move things along that just helps soften the stool and make it more comfortable to go but if you need that it's fine to use in combination with psyllium and the one that's recommended in the Parkinson's population is called docusate sodium this is also available over-the-counter without a prescription and it's often sold under the brand name colas and again I'll just reiterate you don't have to use the brand name so if that's ineffective you can move sort of up the chain to a slightly more potent medication for constipation called polyethylene glycol again this has been studied in the Parkinson's population and found to be safe and effective and it's also available over-the-counter without a prescription usually sold under the brand name relax what you want to avoid is just going out and buying a random over-the-counter laxative because some of the medications that are available without a prescription or what we call stimulant laxatives and these are safe to use every now and then for occasional constipation but you really don't want to be using these every single day because they can be habit-forming and are therefore really not safe for long-term use so you wanna I guess the take home story is just be careful with over-the-counter medications just because you don't need a prescription doesn't mean it's safe to use every day for the rest of your life so always ask your doctor before you buy something and begin to take it on a regular basis okay so the last symptom that we're going to talk about is difficulty with defecation so this is excessive straining pain or a feeling of incomplete evacuation while you're trying to have a bowel movement and this occurs in more than half of Parkinson's disease patients and interestingly when surveyed over half of stage 1 Parkinson's patients are endorsing this problem so it can occur very early in the disease unfortunately use of routine laxatives and stool softeners doesn't help and in fact they may even make the problem worse what has been found to be helpful in a couple of small studies is treatment with a medication called a p.m. morphine which some of you may know because you may take it for your motor symptoms this is an injectable dopamine agonist and the way that you use it for this particular problem is when you first feel that sense that you may have to go you inject yourself with the medication and the idea is that it helps make it a little easier to go as you can imagine people don't particularly like this option because who wants to give themselves a shot every time they have to go to the restroom the other option is botulinum toxin injections into some of the muscles that are involved in defecation and as you may imagine that's even less popular because who wants to get a shot where the Sun doesn't shine so you know these are helpful but they're not particularly pleasant and so for this problem we really need better treatments this is an area where we're a little deficient but there's work being done and there may be better treatments available soon I mentioned biofeedback not because it's been studied specifically in the Parkinson's disease population but it has been studied in people with this problem due to other causes and it's been found to be effective so I think it's worth a try if you're struggling with this problem and the other two options either haven't worked for you or just are very unappealing so biofeedback is a technique that's usually taught by a specialized physical therapist so you may have to do a little bit of digging to find someone in your area who can work with you on these techniques but they're out there if you look in the right places so I just wanted to take a moment and talk about the interplay between Parkinson's disease motor medications and gastrointestinal symptoms because there is a complex interplay and it's sometimes positive and sometimes negative so as I said before nausea and vomiting can be common side effects of multiple Parkinson's disease medications especially the dopaminergic medications like levodopa pramipexole or a pin roll levodopa and other Parkinson's disease medications further slow upper GI motility so they make that slow stomach emptying that's happening anyway even slower and at the same time they actually can improve other GI symptoms so while the nausea and upper GI symptoms make it a bit worse the drooling and the swallowing and the problems with defecation might get a little better so there really is a complex interplay and so depending on what problems you're having you know you really may need to think about adjusting Parkinson's disease medications so I just want to mention briefly that excessive weight gain due to compulsive eating has been reported rarely in people taking dopamine agonist like rope knurl and pramipexole and lastly deep brain stimulation has been reported to improve weight loss constipation and swallowing so the conclusions are fairly straightforward number one GI symptoms are extremely common in Parkinson's disease or if you're suffering from any or all of these problems you certainly aren't alone and they can be the result of the underlying disease itself affecting the GI tract but they can also be worsened by certain Parkinson's disease medications and the real take-home message that I hope I've conveyed is that most of these symptoms can be managed effectively but you have to initiate the conversation with your physician because they may not necessarily ask about these symptoms so if you're struggling with these you have to speak up so that you can get the help that's available so that's really all I have at this point I'm happy to take questions of any kind I have had guests for paresis for approximately 12 years I'm currently and have been using for the past seven to eight years perdone good how is it working most of the time it's effective do you equate slow stomach emptying with gastroparesis it's the same thing gastroparesis is the medical term for slow stomach emptying I just say slow stomach emptying because most people don't don't know the term gastroparesis you mentioned to avoid stimulant laxatives it's possible his neural access stimulant laxative no no me relax is in a separate class called an osmotic laxative and it's safe for long-term use right thank you but the the labels won't tell you what kind they are so you really have to be careful it's tricky so it's always worth just a phone call to the doctor to ask if it's a good choice or not if you've tried the ones we talked about and they're not working and you're looking for you know Plan B Plan C just run it by your doctor right thank you does diet play part in emptying the gut for example like proteins and not proteins dairy products and things like that the short answer is yes but I think that it's difficult to advise people to alter their diet considerably for this particular problem because then it becomes a little bit overwhelming especially when you're altering your diet for other reasons and if you have both slow stomach emptying and constipation and you're trying to juggle the diet for both it becomes quite challenging so if your problem is really just related to slow stomach emptying for example if you're someone with a lot of nausea but you don't have constipation and you don't have a lot of other GI symptoms then it might be worth altering your diet and looking into a gastroparesis diet if you've also got constipation and say you take other medications for other medical problems that limit what you can eat it very quickly becomes overwhelming and if you need to turn to diet then I think getting a good registered dietician to help you with planning is essential because it can get overwhelming quickly for example I see a lot of patients who take coumadin and they have to watch certain foods because they're on coumadin which is a blood thinner that they may take for their heart or other reasons and then they're trying to eat lots of fiber for their constipation but if you're eating lots of fiber that's bad for gastroparesis and then they're just like I can't eat anything what am I you know what am I supposed to do here so the short answer is yes but you know I wouldn't advise anybody to feel that they must you know just because you have Parkinson's disease put yourself on a gastroparesis diet it's good for the right person but it's not necessarily good for everyone add to that the question of the timing of your medication the sentiment how what can you advise us about that so I want to sort of before I answer the question I want to just say that if you ask other people who treat Parkinson's disease you may get different answers my personal opinion is that it doesn't matter for most people so when I prescribe these medications I tell everybody take it with food because if you take it on an empty stomach there's a high probability that you're gonna feel sick to your stomach especially if you're just starting these medications and if you follow the instructions that the pharmacists give you you're gonna plan your whole life around eating food and taking pills and that's no way to live I have met a total of maybe five or six people ever who really noticed a significant difference in the effectiveness of their medications based upon whether they're taking it with protein or not with protein or with food or not with food so I just say you know what I'm gonna liberate you take your medicine with food it's easier to remember you're not planning your whole day around medicine and it's gonna work just as well for 99% of people and if you're one of those rare people who is sensitive to the food interaction we'll find that out and we can deal with that when the time comes but I just feel it becomes too overwhelming to on a day-to-day basis take it on an empty stomach wait two hours each of food weigh - I I I'm not sure I heard all of the question could we get it on microphone sir for people that do experience a drastic difference in your medication have you any idea what is that some separate problem no no so there is an underlying biological mechanism for that that's well understood it has to do with the protein in the food competing with the levodopa for the same receptor in your stomach but it turns out that the vast majority of people do just fine even if they take their levodopa with a meal so if you're one of those people for you it may be important to try to pace yourself throughout the day and plan your meals and your medicines separately but fortunately you're sort of in the minority not everybody struggles with that do you ever find that burping is a side you know related to Parkinson's and related to yeah actually that's that's been well described it can be related to off time and it can also just be related to slow stomach emptying so if someone has severe gastroparesis they can get a lot of reflux and burping but if it's clearly linked if you've noticed a pattern and every time you're wearing off you're getting it then it probably is what we call a non motor off which is very well described belching is is a well-known on motor off so the solution to that is don't wear off easier said than done right but yeah so you know long-acting long-acting levodopa can be helpful in that situation but it's it's a it's a problem it's a problem but you're not alone it happens it's so well described yes it absolutely could be so abdominal pain and bloating and fullness or common symptoms of slow stomach emptying or gastroparesis so if you're having a lot of that it's worth a visit to a gastroenterologist or you know a neurologist sometimes would be comfortable doing this but you might want to actually look at your stomach emptying time and if it's significantly slowed you may need to consider some sort of intervention either a gastroparesis diet or a medication to help accelerate gastric emptying if it's enough of a problem I had a question about swallowing I'm over here the swallowing mechanism seems like it's made of different there's several different parts to it like I don't have problems actually getting the food out of my mouth into my throat but then it seems like I can feel every piece of food or lower down yeah yeah so swallowing is a complex process and it can go awry in different areas it can go awry in the mouth it can go awry in the throat or it can go awry lower down in the esophagus and in Parkinson's disease we know that things can go wrong in all three places or all of them and in someone who has mostly esophageal problems it can be frustrating because you can go out and get a modified barium swallow and it can be stone-cold normal and yet you're saying hey there's a problem here so there's a sort of follow-up test for people who are having symptomatic problems who have had a normal modified barium swallow to look a little better at the esophageal component of the swallowing and it does happen in PD and there are there are options for you as well but the the key is to get the right diagnosis so I would start probably with your neurologist and if you've already had the modified barium swallow you may need some additional testing they may want to refer you out you
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Channel: Davis Phinney Foundation for Parkinson's
Views: 73,715
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Keywords: Davis Phinney Foundation, Parkinson's Disease, Living Well with Parkinson's, Dr. Leslie Cloud, GI issues, Parkinson's digestion, Parkinson's gut
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Length: 30min 40sec (1840 seconds)
Published: Tue Jun 18 2013
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