- Podcast. I am in Vancouver, Canada again for the MDS Congress 217, 2017 and I'm joining you from my good friend, Naomi's, house today. She is located in Vancouver.
She is a Parkinson's physical therapist, or physio, as they call them here. She is letting me stay with her just blocks from the convention center, and so I am here on her porch giving you a little live update. So I did one earlier about motor fluctuations in Parkinson's, so if you missed that, it's on the Facebook page. And if you saw it and you're coming back, welcome back. So, I wanted to use our time to talk about dyskinesia.
We had a lot of discussions today about movement fluctuations and motor fluctuations with Parkinson's, and I know this is a topic that I get questions on a lot. And so, I do have two questions I'm going to answer from you guys. Nora-- and Gail, I believe, had questions about dyskinesia, and if they're related to Parkinson's medication and if they can be prevented. And so, dyskinesia, if you're not aware, is just an abnormality or impairment of a voluntary movement. So often times you'll have, you can have a dyskinesia in your head, your neck, you kind of these involuntary movements of your head or your neck, your hands, maybe your foot. And throughout the Congress today, they were talking a lot about how, you know, they very commonly increase over time because of medication use over time and I'm going to talk about that here in a second. So, I want to blow through this real fast and I want to really emphasize, first and foremost, how important it is to have a movement disorder specialist on your team.
If you guys don't have one, it's a specialized neurologist who knows a lot about movement disorders specifically, and Parkinson's falls in that category of a movement disorder. So, you really want someone who is specially trained in your diagnosis so that they can look at the subtleties of your symptoms and really distinguish where they're coming from and how to best help you manage them. So I want to emphasize that first and foremost, cause I'm going to talk about some things that do have to do with medication dosages, and I am not a physician. I am a physio-therapist, or physical therapist in the States, and I can't tell you what to do with your medications or what not to do, but a lot of these indicators can help you recognize if you're being properly medicated and if your medications are optimized, and often times they aren't, and it can vary a lot over time, your dosages, and it can also-- Your medication dosage over time will change, and it's important to be in constant contact with your physician about new symptoms that come on.
So, I want to talk about-- First, I want to talk about the four fluctuations of dyskinesia in Parkinson's. So, if you're having dyskinesia and you're kind of just labeling it as plain dyskinesia, there may-- and you're having difficulty managing it, it may be beneficial to see if any of these descriptions fit you so that you can take that conversation back to your movement disorders specialist and talk to them about maybe how to optimize your medication dosages. So, the first kind of dyskinesia is, it sounds like the most common kind, which is Peak Dose Dyskinesia, which if you think about your Parkinson's medications throughout the day, you take your Parkinson's medications and you go back into this on-period and then you start to drop again into your off-period and then you have an on period and an off-period. And what you are trying to do with your Parkinson's medications is you're trying to stay in this kind of optimal zone in the middle. So, when you are optimally medicated, your symptoms are improved but you're not having dyskinesia. And, you know, once you get the Peak Dose Dyskinesia is when your medication starts to rise and you get outside of your optimal zone and you're potentially over-medicated so you're having too much l'dopa, too much levodopa in your system and you start to have dyskinesias. It may only happen for a certain amount of time before you go back into your optimal zone and then hit an off-period.
So there are different types of Peak Dose Dyskinesia, and it can obviously be in your limbs or in your trunk, you know, your head, your hands, your foot. But two that they talked about that I hadn't recognized that I wanted to make you all aware of is that you can have ocular dyskinesia, which is, ocular is your eyes, and if you have dyskinesia in your eyes, you'll have a constant kind of upwards gaze or like a, it called it a to-and-fro pattern. But essentially you have these involuntary movements that take your eyes upward in this dyskinesia pattern. And there's also respiratory dyskinesia. So, respiratory has to do with your lungs. If you find yourself after your medications, maybe you're-- after your on-state you kind of go into this peak period and you're noticing that you have really fast breathing, or with an irregular rate and kind of irregular depth to it. It's not just a normal fast breath, but you're breathing really quickly, it's really inconsistent, that can be a respiratory dyskinesia.
So, um. I've had quite a few clients say that they have tremors on the inside. They don't really know how to identify it. This may be one of those things where it's going on inside, but you don't really see it on the outside of you. So that could be a dyskinesia display. And I am going to talk very specifically about Peak Dose Dyskinesia, so if that's you, I want you to stay put and pay attention here in just a minute, because there are some management and prevention techniques that we can go through about the Peak Dose Dyskinesia.
But the second kind of fluctuation of dyskinesia is called Diphasic Dyskinesia, and they def-- So diphasic is two phases. At the beginning and the end of your dose, when your levodopa levels are changing. So it's like mid-dose. You kind of, if you have this, this up and down, you're diphasic. Dyskinesia happens at the beginning or the end of your dose, when your l'dopa levels are changing. So it's at that transition where it's like, it's just about to shift into on-period and you might have dyskinesias there. You may be just about to switch into an off-period and you have dyskinesias there. So that can be called diphasic dyskinesia.
And that can be, can-- You can identify, maybe, diphasic dyskinesia. One way is to, there's something called silly walks. So, if you are walking with a-- I've never seen this personally, but they showed us in a bunch of videos. If you're walking and you're stepping with kicks or stomps on one leg that's called a silly walk and that might be an identification of diphasic dyskinesia. Again, if you're having these symptoms, it's important to bring this back to your movement disorders specialist so that they can help you optimize and kind of redistribute your levodopa levels. The third type of fluctuation you can have with your dyskinesia is called a Low Dose Dyskinesia.
And this is most notably seen in the mornings, where you have, you're kind of in this off-period from your medication, and you have a lot of dystonia. So they labeled that as Low Dose Dyskinesia, and, again, that's just going back to your MDS, your movement disorder specialist, and saying, "I'm having this symptom. How can we optimize my distribution of l'dopa maybe overnight or in the morning so that this off-period dystonia doesn't happen." And then the fourth type of fluctuation with your dyskinesia is called Stimulation Induced Dyskinesia.
And this is typically seen, early stages, after you have deep brain stimulation, specifically DBS for the substantia nigra, or the STN deep brain stimulation. So, it's predominately in the lower body, so if you weren't having dyskinesia before you had deep brain stimulation, you had DBS, and then you're noticing that you have kind of some abnormal movements in your legs, this can be what's called Stimulation Induced Dyskinesia. So those are the four types of fluctuations of dyskinesia that may be going on with you. And, again, the answer there is to take the knowledge that you can from this, write it down, take it to your movement disorder specialist and tell them what's going on so that they can help you optimally dose your medications. Okay? Alrighty. So, let me just check in here. It looks like we have some joiners. Patty's here, joining in.
Power for Parkinson's. I was repping our Power for Parkinson's shirt earlier. Ruth. Welcome, guys, welcome. I'm so glad you guys are here. Welcome, welcome to Vancouver.
Okay. So. The next thing I want to talk about is this management of your Peak Dose Dyskinesia. So, we had a couple questions about this from the audience, and before we go into the questions, I'm going to go ahead and just talk about managing your symptoms and preventing dyskinesia. So, a lot of you have probably heard that taking medication, levodopa medications, over time can induce dyskinesias, and we want to talk about that specifically. Your risk factors for increasing-- Sorry, you have risk factors that increase your chance of developing dyskinesias over time with the use of l'dopa. I'm going to tell you about those here in a second.
But, as far as managing this Peak Dose Dyskinesia-- So, again, if your Parkinson's medications in a very simple way, you know, if you're trying to stay in this optimal zone of function and your Parkinson's medications bring you through opitimal zone and then you go up above your optimal zone, you're kind of over-medicated here, you start having dyskinesia and then you go back down and your dyskinesias go away and then they come back when you're back at your peak again. That's called Peak Dose Dyskinesia and as far as being able to manage that Peak Dose Dyskinesia, there were essentially three suggestions. You can, obviously, reduce the amount of levodopa that you are taking, because it would not take you so far out of your optimal zone. So you wouldn't have that peak outside, ideally, outside your optimal zone. So you can reduce the amount of l'dopa you're taking.
Of course, do that with your physician. The second option that you can use is a drug called amantadine, which is something that's very familiar to me. I feel like that's-- at least in the States, it's used quite a bit. But it's the only drug currently approved for it's antidyskinetic properties, which is anti-dyskinesia. And it does have some support for long-term efficacy, but the longest study that they talked about today was a 12 week study, so about three months. So the long-term effects over time are-- As far as I know. The literature, I haven't seen that.
But it does have some long-term efficacies as far as preventing dyskinesia. And there is apparently a new, extended release formulation of amantadine that increased your on-time without the troublesome dyskinesia and also reduced the off-time. So, there are some other newbies on the market that you guys might be interested in paying attention to. Seratona-- seratonin and glutamate were not found to be effective to treat dyskinesia as of right now, with the studies that they presented today. And then the chlorogenic drugs, that's a study that's ongoing. They did mention that a drug called eltoprazine reduced the dyskinesia in some patients but it's not widely trialed quite yet.
So those are some newbies to keep your ears perked for on the market. So, the third and final way to manage your dyskinesia is using what they called device aided therapies. Things like deep brain stimulation, especially in the substantia nigra or what's called the globus pallidus internus or the GPI, DBS in those two areas has been shown to be effective for helping with dyskinesia. Also the levodopa intestinal injections, or an infusion, where you have it surgically placed so that you have continuous l'dopa being pumped into your intestines. That has been shown to decrease your off-time and also subcutaneous, which is right under the skin, apomorphine, which is another drug. They just insert underneath your skin. Instead of taking it orally, these are just different places to take your medication, through your stomach or through your intramuscular agents. That also-- That drug, apomorphine, can also help increase your on-time.
So those last three: deep brain stimulation, intestinal infusions, and muscle infusions. Those three are typically not used until your motor fluctuations get more into the severe stage because, you know, they're pretty invasive. You're altering your body versus these other-- Symptom management by, you know, different medications. Those aren't as invasive as they would say.
So, those are ways to manage the symptoms. And then, for those of you who are trying to prevent dyskinesia, you've heard maybe that taking your levodopa medication can lead to dyskinesias, I have a lot of information for you. So, they talked a lot about prevention and one thing that they hit hard was the use of dopamine agonists. So if you are taking a true l'dopa medication, like sinemet, then that's an actual dopamine. That's actual, you know, going in. But a dopamine agonist-- An agonist just means that it's behaving the same way that a dopamine would, but it's not really dopamine. So, that's just some lingo in there.
So you may have heard about continuous release l'dopa. It doesn't look like-- According to these studies, there's not benefit in the long run over 60 months to help prevent dyskinesia with the continuous release l'dopa. There's nothing to link the prevention of dyskinesia to continuous release of l'dopa. Also, there has not been found to be any benefit from the use of COMT inhibitors. So if you guys are exploring COMT inhibitors, hoping that those will, taking those will leave you less likely to develop dyskinesia, there's actually not a lot of benefit from doing it that way. Different dopamine agonists have been used, and they're usually favored in younger patients. Reduces dyskinesia and motor fluctuations, but you're also at a higher risk to develop impulse control disorders; somnolence, which is kind of that sleepiness; and sleep attacks. So, I know a lot of my clients will say, "Yeah, I took my medication, my dopamine agonist, and I was just hit so hard with the desire to go to sleep and I don't know what it is and I hate it, but it does help to reduce, you know, my dyskinesia quite a bit." And so there's this impact on your quality of life that you do need to consider as far as, just, what's right for you, and I can't tell you what's right for you.
Only you know what's right for you, but work with your team to discuss it. Another way to prevent dyskinesia which they talked about were some non-dopaminergic approaches and emphasizing neural protection, so this really where exercise comes in. So important, and we're going to hit that home here in a second, but if you can exercise on the regular-- You know, I always preach two and a half hours a week at least of vigorous exercise is what the research says. If you can do that and more, then you're having to take less medication over time and, because you're taking less levodopa over time, your likelihood for developing these dyskinesias and these side effects of the medications are far less. So I know exercise is hard. I know that it's uncomfortable, but if you know that, by embracing that and doing that everyday, you're actually preventing-- Not even you're preventing, you're ensuring that your life is better tomorrow than it would be otherwise.
So I know those of you who are tuning in, if you follow me pretty religiously, you're probably exercising, but tell a friend Share this with somebody who may not understand really why you exercise with Parkinson's. Maybe they really haven't internalized it. Help them understand-- Actually, that's not fair. But give them the opportunity to learn about why exercise is so important, and it's not just, you know, us physio-therapists getting, you know, all excited about exercise for no reason. Um, it really has one of the best ways to prevent worsening of symptoms in the long run.
So, that's my, that's my little bit of a soap box on there. So, I want to hop into questions. So we had two really great questions about dyskinesia that you guys submitted. And again, if you have questions about anything Parkinson's related, just put them in the comment section below.
Or if you're watching this on Replay, you know, send us an email. Get ahold of us somehow and let us know your question so that I can see how much I can answer here from Canada and in the future. So, the first question is from Nora Parham. She says, "I experience dyskinesia only on my left side, and only after I take my sinemet. Why is this? When I awake in the morning, apart from my low back pain, I would not know I had Parkinson's until after I take my meds. It's very troubling, and I just want to trash them, but I don't know if I should.
What is going on?" So, Nora, thank you so much for submitting your question, and I would say that, from what I have learned, it sounds like you are going into Peak Dose Dyskinesia where you're taking your medications. Maybe you are going through, like, a Diphasic Dyskinesia, but again, this is why it's really important to see a movement disorders specialist, cause they're going to know a lot more about the medication specifically, but it sounds like the dyskinesia you're having it's because you're getting too much l'dopa in your system at that peak and so you're having the symptoms and then it kind of, um, wears off. So, I could be wrong, but dyskinesia typically-- This fluctuating dyskinesia typically says that your optimal-- That your medications aren't optimized in the way that they should be. So seek that out. I know Nora's not the only person who has this issue.
So if it's you, take note of it and let your physician know, your movement disorder specialist know, "Hey, this is when exactly I have my dyskinesia." Pay attention to how long it lasts. See if it, you know, if it fluctuates during your off-periods. You know, keep track of your symptoms compared to your on- and off-periods as much as you can because that gives really great information to your, to your physician. Okay, so the next question here Gail: Is there a correl-- Gail Smith asks, "Is there a correlation between long-time use of carbidopa, levodopa and the onset of dyskinesia? I know it does not appear in all cases, but I recently saw a webinar that included this was a myth and that dyskinesia was a symptom of Parkinson's progression not related to meds." So, according to, you know, what I know and what I've seen at this Congress, dyskinesia is definitely highly correlated to long-term use of levodopa and there's a term called levodopa induced dyskinesia, or LID. And, honestly, there was a great speaker from-- I'm not sure actually, Seoul, I think? And he talked about this concept of levodopa induced dyskinesia, and he explained it in depth, and it was a lot of-- Honestly, it was a lot of medical jargon and a lot of research jargon and a lot of stuff that really doesn't hit home for most of you. So, in a summary, over time, when you're, let's say you're not exercising and you're levodopa levels are starting to decline, like this, they start to go down. I hope that's a down angle for all of you involved. You know, Parkinson's-- Exercise protects your brain, so your decline-- You're either here.
You know, you're not getting any worse. Or you are slowly, you're slowing down the progression of that decline. But essentially when you have Parkinson's and your levodopa levels are dropping, then you have to take more and more medication to get back up to this kind of functioning level. So at first you might only take a little bit of a levodopa, and then as that slope goes down, you have to take a little more to get back up to your normal levels, and then a little more, and then you can see how this is a bigger dose of levodopa. I hope this is making sense to you guys.
A bigger dose of levodopa over time to get back up to your optimal level. And as that levodopa dosage increases, your risk for dyskinesias increase because of the impact that that medication has on the synapses in your brain. So that's the short version of that, and if you want a more in-depth explanation, I'm happy to give it, but the answer is yes, Gail. That over time, the more l'dopa you have in your system, the more likely you are to have dyskinesia. So they went through different risk factors for developing dyskinesia over time, and this is really interesting to me. You know, mainly, your risk for dyskinesia increases with dopaminergic treatment, so higher dosages for longer increases your risk. And I am not saying any of this to you guys to freak you out or to make you sad. Honestly, it's to emphasize how important it is to be exercising so that you don't have to take as much levodopa over time.
But the first risk factor that increases your risk of developing dyskinesia is being a younger age at onset. So, that's pretty simple. If you're younger when you have the diagnosis, you're going to be taking Parkinson's medications for longer compared to someone who is diagnosed five, six years after you; seven, eight years after you. Another risk factor is being lower in weight.
So they explained this as potentially when you have less body mass and you're taking the Parkinson's medications, it just has more potent of an impact on your system and, you know, that leaves you at higher risk for becoming dyskinetic over time. And finally, females, women, have a higher chance of developing dyskinesia over time than men do and they correlate this with hormonal differences between genders and your-- You may actually consider doing some hormonal treatment, hormonal therapy to reduce your risk of dyskinesia. They didn't talk about that in depth, but if you need some more resources for that, I've got some people I can send to you. So the main message there as far as-- The main message overall that I want you guys to take home is two-fold. The first thing is: If you're having dyskinesia, listen and see which type of dyskinesia you are, you think you may be having, or, better yet, record your symptoms based off of when you take your medication, if you feel like you're in an on-period or an off-period, so that you can take that information to your physician and have them adjust your medications. The second, and most important, thing that I want to emphasize is: If dyskinesias are associated with long-term use and more use of levodopa medications, then-- And exercise can exponentially increase the amount levodopa you utilize and you can take advantage of in your day to day, then if you're exercising consistently and in the right ways, then you can reduce how much levodopa you have to take over time, therefore prevent the decline in Parkinson's and prevent all of these side effects from taking, just taking medication, so, I implore you, if you are not exercising, that this video help you get up and go for a walk. Get up and move. I'm about to work out with Naomi here in a second.
But just get up and move, get your heart rate up and know that it is making a difference. Every time it's hard, every time you're struggling to move and to stay mobile, know that it does make an incredible difference for you now and in the future. So if you ever need a pep talk, you know where to find me. Invigoratept.com, but in the mean time, I just want to tell you guys that I really appreciate you and if-- I saw some questions come in in the comment section below. I will definitely read those over and get back to you, but if you need references for exercise and Parkinson's, obviously I'm happy to be your go-to girl. You are more than welcome to check out our online Parkinson's booster program. It's www.invigoratept.com/booster.
It's a five week Parkinson's specific exercise program. I lead it myself. I check in with you every week, actually multiple times a week, to make sure that you're exercising and motivated and I would love to have you as part of our booster tribe, but in the meantime, I am going to go work out with Naomi, and I will be back very soon, probably tomorrow, to talk with you guys more about what I'm learning in Canada. So, I appreciate you, I'm grateful for you, and, of course, keep moving and until next time, I'm sending you all lots of big hugs.
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