- Hey guys, welcome to Canada. I just wanted to check in here real fast. It's day one in Vancouver, and we're in between sessions, and I just have to show you this view real fast.
The International Parkinson and Movement Disorder Congress is in Vancouver starting today, and it will be going for the next four days. We just finished our first two workshops-- sorry, the very first workshop, but three speakers at the conference. I have a little bit of motor fluctuation tidbits to share with you all. But before I do that, I want to show you the view here that I'm looking at. It is a beautiful, beautiful scene from Vancouver. Look at that plane on the lake.
So cute and majestic. I love Canada and Vancouver, so to all you Canadians... What a wonderful place to be. Okay, so I wanted to check in here real fast. I took some notes, and our first workshop had three speakers like I mentioned. We talked a lot about motor fluctuations in Parkinson's. Things like dyskinesia, dystonia, which I am going to be talking about more in-depth as we go along this week. The first speaker I wanted to talk with you guys about was-- his name's Jean-Christophe Corvol.
He talked about the prevention, treatment, and management of motor fluctuations and dyskinesia. He was talking about how 90% of Parkinson's patients have motor complications after 10 years. Over time, most patients are very likely to have more time spent in the off-stage. Your off-stage is when your Parkinson's symptoms worsen, because your Parkinson's medications are wearing off. There are a lot of different presentations of wearing off. The goal of taking your Parkinson's medications is to keep you in this optimal zone, where you get enough to overcome some of your symptoms so you can function but not overmedicate you to the point where you have some dyskinesia. Dyskinesia just means abnormal movements that can come in a variety of ways, which I'm going to talk about more at a little bit later time they types of dyskinesia and where they may be coming from. What I wanted to hit right now is a lot of you have been talking about Parkinson's medications and how do you prevent some of the side effects.
A lot of you are scared to take Parkinson's medications and you're not taking them, or you're just not increasing your medications for fear that you'll get some of these movement fluctuations. And that's a fair fear. What we talked about was how to manage the early motor fluctuations in Parkinson's, how to manage them once they become more severe, and how to decide between these different therapies. A lot of you have asked that question, 'How do I decide what to take or what to do, should it be Parkinson's medication? Should it be deep brain stimulation? Should I be taking these supplements?' So I wanted to kind of walk you through what was suggested today by the speaker. I'm sorry if it's a little bit wobbly, I'm trying to hold my camera still.
There are four management options that they touched on today for early motor fluctuations. Motor fluctuations just being this fluctuation of your movements and your symptoms. There is taking the approach of the levodopa, just adjusting your medications so you're spending more time in your optimal state. Which again, you know you're not in your optimal state if you're having a lot of time in your off periods, or you're having a lot of dyskinesia, you're probably not optimally medicated, so that's something to talk with your physician about, your Movement Disorder Specialist.
Taking dopamine agonists, which we'll talk about a little bit longer, but that can be something that can be helpful for early motor fluctuations. And then there are MAO-B inhibitors and COMT inhibitors. We talked about those a little bit.
As far as dopamine agonists are concerned, they're favored in younger patients to reduce to reduce things like dyskinesia and motor fluctuations, but you have a higher risk to develop somnolence and sleep attacks. Those things can degrade your quality of life. The MAO-B inhibitors and the COMT medications, those are big words and abbreviations in the medical community, but those are types of medications that you can take. Sorry, I lost my place in my notes here. Those are some of the things that are being researched but they haven't had a big impact as far as the studies are concerned, for long-term effects for motor fluctuations. The takeaway that I got from that was there is a study out there that I'm going to post in the comment section below, that you can maybe walk though with your physician, that helps you understand, based off of what your symptoms are, if these different approaches will work for you.
It's like if you're having dyskinesia, you can look at this chart and it will give you a plus or minus to tell you, 'Okay, if you have this symptom and you're considering this specific intervention, like a MAO-B inhibitor or a COMT inhibitor, then it has been shown to be effective or it hasn't been.' And so I am going to post that in the comment section below, just a link to that PDF and the table six is on page nine. So you guys can look at it and you can see, okay, if these are my main symptoms, will this be beneficial for-- will these different approaches be beneficial for me? You can take that to your physician and talk with them about it one on one. Because again, I'm just the messenger, and I can't help you make those decisions if I'm not on your healthcare team. Again, so those four management options of early motor fluctuations are: adjusting your levodopa, taking a dopamine agonist, potentially taking a MAO-B inhibitor, and taking a COMT inhibitor. Those are for early motor fluctuations.
Then he touched on, once you go through that phase and maybe those effects or improvements are starting to wear off for you, depending on where you are in your journey, you may consider things like deep brain stimulation, apomorphine, the intestinal infusions of levodopa. Those are three options that are kind of considered later in the stage, later along down the line because the risks are a little bit higher and the impact is a little bit more great. So if you're getting DBS, that's a brain surgery. Typically people don't consider brain surgery right out the bat. Apomorphine is an injection, so that's a little more intrusive than just taking an oral medication often.
And then the intestinal gel a lot of you have asked asked me about, is something that you can get implanted in your intestines to deliver levodopa right into your gut because only about 10% of your Parkinson's medications, when taken orally, are actually delivered to your brain. That's something we learned today. As far as severe motor fluctuations are concerned, when you take the DBS approach, oftentimes with the right placement of your DBS, you can improve things like dyskinesia significantly and improve your on time by around three hours is what some of the studies are showing. So if you have severe motor fluctuations and are considering DBS, that might be effective for you. The other option is the apomorphine.
It is a medication that I've heard a few times. I don't have a lot of patients who are taking the apomorphine injections, but essentially it's an injection or a subcutaneous pump that you can explore. And again, I'm just giving you the options. You can talk to your physician about them, see if they're correct for you.
The third one was that intestinal gel. The medical term is intrajejunal, which just means inside your jejunum, which is in your intestine. There's a pump that can put levodopa medication directly into your stomach and hopefully increase the absorption. That has been shown to reduce off time by around two hours, but that's mostly for advanced Parkinson's disease. So again, there are a lot of options here and what I'm going to do once I hop off here is put this decision-making matrix in to the comment section below. It's a study that was done by Odin. I don't know his first name, it starts with a P. It's just a collective of different studies to help you and your physician decide on what approach is right for you.
So the decision-making matrix is on page nine of the PDF that I'll post below. Hopefully that can give you guys some guidance to go back to your healthcare team. Be informed, but also know that it's important to talk to everyone on your team and then go with what feels best for you.
I'm about to hop into another session here. I'll be back a little bit later with more information on dyskinesia and some other fun things. I see some people checking in. Danny from Minnesota, what's up Danny? Russ, of course always stopping by.
'Thanks Sarah, enjoy the conference', I will. I'm just going to close with another view of this-- Hi Sally, I saw you in there. I'm going to close with another view of the ocean, I learned. This is the ocean. Kathleen Smith, look for Emily.
Yeah, I'm going to look for her. We're supposed to meet up, I think on Tuesday. She was at the Power Conference. I hope you guys had fun Kathleen and Wyman. All right, that's Vancouver.
You guys, I'll see you very soon. Okay, bye. Oh and if you have questions, post them in the comment section below. I'll try to do my best to answer them.
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