Levodopa Induced Dyskinesia - Some Thoughts About The Fear Of

I don't recall seeing any ads about the actual medicine itself. I just recall learning about the medicine through researching the internet and learning that dyskinesia was a side effect. Once I learned that, I did fear it because of course I immediately envision MJF and see his intense physical movements as my future. I ended up getting dyskinetic movements a lot sooner than I thought I would. Luckily, they are still subtle enough that they don't interfere with my life. I guess for me, the fear subsided when I realized how much the medication improved my symptoms. At that point, I have to put things in perspective....this is my new life....make the best of it....and tackle whatever obstacles comes my way, with a positive attitude. Fingers crossed the doctor's and scientist come up with a better alternative!

Does your doctor want you to have DBS and insist that is the only thing that will stop the shaking and dyskensias? My doctor hasn't stopped insisting for eleven years. I will never go through with DBS but I think I want focused ultrasound.

I was hit hard and within a year went from totally active to a wheelchair for the next year and a half. I could barely shower couldn’t make a sandwich. Could barely get out of bed. L-dopa got me back on my feet and I got back into life, could walk again, travel. True, I need levodopa every two hours or I turn into a sac of potatoes, but it’s a good two hours. I then discovered vitamin B1 therapy out of Italy and got my fine motor skills back after 6 months. Life is still challenging but at least I have one. If I am a little dyskinetic from time to time, so what! It’s better than being housebound. 🎉

I think instinctively people are wary about taking drugs, especially if up until diagnosis you have been fit and healthy. PD is a marathon not a sprint, and I think it’s natural to go slowly with meds even if in the process you’re not maximizing the benefits that taking Levodopa could bring. It’s a bit like your money. People could spend everything they have in a few months and have a great time. But they don’t! People hold money back for the future assuming they will live a long life and that’s how I feel about levodopa. Yes I could definitely take more and increase my on time, but I take just enough to get by and so far have avoided dyskinesia, but that could be luck. It’s an important topic and we all wonder if we’re doing the right thing.

You are an inspiration! My compliments and gratitude! I was diagnosed with PK approximately one year ago and I’m going through the same mental struggles which you discussed about whether to start taking carbidopa/levodopa. I was holding off but after listening to your experience, I feel a lot more comfortable about starting the treatment combined with high dosage vitamin B1. Once again, I am grateful for your input.

Have you tried Amantadine?

To be honest I didn't know anything about dyskenesia when first diagnosed,Jan. 2019. I started taking sinemet at that time. I started developing dyskenesia about 6-9 months ago. I don't love it, but it doesn't control for life or prevent me from doing daily activities. I think if you live in fear of something bad happening that is worse than the actual issue. Just my opinion.

❤❤❤❤❤❤❤❤

I take 1 1/2 pills 5 times a day and another 1 1/2 pills in the middle of the night because I never sleep through a night. Many times the shaking is so severe I take an extra half a pill or more. I take a total of 9 pills a day at least. I get very bad diskensias but not every single day.

Watching this video, I thought “Yeah, sounds like a KQED pledge drive” and next words out your mouth were about pledge drives. That was the best laugh all day and something I’ve never considered.

I'm not on meds yet. Suppose will be put on it when I see dr end June. It's scarry but the positive thoughts from the videos that you and the other Parkies put out is really educational for me. Thank you so much.

As always great to hear from you , I’m on Madopar Levodopa Benserazide , when researching one of my fears in taking medication to early was that it could speed up the onset of Parkinson’s , 4yrs in and no regrets taking the medication. I have very slight dyskinesia but I’d rather that than the tremors. I think your amazing and I have grown in confidence by listening to your videos, ty for sharing xx

Good stuff. Everything‘s an agenda. One would think healthcare, science, social work would be exempt. One would be wrong!

After 7 years of taking Sinemet I started experiencing Dystonia in my legs. After DBS surgery I was able to reduce meds and their side effects by 80%

Great information and opinions, thanks David

Hi Jennifer thanks for the update and fantastic information 😃

Good point of view and good to get different voices out there.

Hi Jennifer! Thanks so much for doing this video. When I was doing my research around my diagnosis last September, I immediately read about all of the woes of taking levodopa for long periods of time. So I cycled off of it, really for 2 reasons. 1) I figured I would cycle off and stay off as long as I could as I thought I would somehow “preserve” my current state, and 2) I wanted to “prove out” the effectiveness of the Senimet and I guess also “prove” my PD diagnosis. Sooo, after I took levodopa/carbidopa for about 6 weeks, I went off for about 8 weeks, and started to log every single day in a spreadsheet how my symptoms changed, along with diet, and exercise. I color-coded it so I could easily see patterns. As it turns out, the non-motor symptoms got really bad….crazy bad apathy, depression, brain fog, memory, etc. I fought it as long as I could, then went back on Senimet after about 8 weeks. I had to bump up to 4 doses per day as 3 didn’t seem to cut it. 4 seems to be the magic number now. I am still worried about dyskinesia, but agree that the Senimet helps so much with the non-motor symptoms that I could not see stopping it again. Sorry for the super long post….i know everyone is different,but how long did it take to develop dyskinesia once you began to take Senimet (carbidopa/levodopa)?

Five years.

Oh to have a job that allows you to have a sneaky little beer!😜

Thanks Jennifer for breaking down the wall of misinformation. Quality of life is what we're all after. I'm surprised that Michael j. Fox Foundation produced this video but I'm curious to see it. Could you post the link?

Have you had hallucinations since you’ve had Parkinson ?

Just recently found this channel and have been binge watching your posts.  Agree with everyone, the way you share your thoughts and experiences is amazing and you encourage others to share as well.  I could comment on just about every post.  There is so much that I want to say, but to keep it "brief," I'd like to ask you and your followers if any of you have ever experienced a pulling sensation to one side as if there is a high powered magnet just pulling you down to the floor? 24/7 I have this feeling and sometimes it is so powerful that my arms and legs are engaged in an epic battle with my head and torso to remain upright.  I've dropped my phone, laptop, bowls of food and I've fallen off the couch from a seated position or had to prop myself up to brush my teeth or wash dishes.  My MDS has said it's an extreme case of dyskinesia but it doesn't follow typical patterns for that or dystonia. I've asked a few docs and forums about it but no one has heard of it and they don't know how to treat it.  FYI -I started C/L in 2019, although I had the same fears that you raised here and have yet to find the right amount and timing of doses for effective treatment but that is another whole topic.  Anyway, any thoughts?

PS -Topic of other videos but try Mirtazapine before bed to help you sleep.  Now that has worked wonders for me!
Thx so much .

Thx for bringing clarity to this extremely complex topic. Your research is always spot on and you have a way breaking things so on level that makes so much sense!

I stopped taking the carb / levo but I do take a low dose of B1. Had tremors in my right foot and was in a wheelchair because of broken bones from too many falls .. I think I have a Parkinsonism. But am talking to my MDS again this week. I hate the rigidity. It’s so painful and that’s when I take the carb Levo for a day or so. I’m so tired of trying to figure this out. I did have NPH surgery since Dr thought that was more of a problem . It did get me walking again but still have so many other symptoms going on . The incontinence is worse than ever and the stiffness is so painful. Thinking I should see another MDS. I live near the PD center in Gainsville Florida … suggestions anyone. ?

Great video! Totally agree!! Without Levadopa (23plus per day) few months past year 7 with PD. Without levadopa I am paralyzed, poor quality of life and it goes down from there. Dyskinesia has entered my life with pd about 6 months ago, and is getting worse. BUT I will deal with it because it gives me some of my life back which is all I need and my wife. Eventually in my opinion anyone who is delaying taking it, is just going to make it worse..there is no cure at this point…maybe one day. ❤❤❤❤🇨🇦

I'm always looking for a small victory in a never ending battle. Thanks for sharing.

Thank you for sharing

Just curious if you seen the news this week. In regards to the diabetes drug possibly stopping the progression of Parkinson’s?

Thank you for the work you do and info you provide.

Always great to listen to you. Big hug

Yes, terror.

On my experience of dyskinesia. I have had PD for 31 years and have been taking levodopa for 30 years. Over that period I have tried various levodopa alternatives but side effects outweighed benefits. Mostly I have been undermedicated by normal standards of levodopa therapy but have not experienced any significant dyskinesia, except where levodopa dosage was increased to accommodate with increased pressure due to work requirements. I tend to be slow and stiff but have little problem with tremor. I have found that challenging exercise is useful to fill the gap between low and full medication. Several years ago I took up traditional archery and successfully competed at state level with two first places. Lately I have been learning to play various musical instruments. An athlete improved by training. Similarly training helps with PD. The important thing is to train in a mostly non stressful environment and in something which you enjoy.
Don't fear levodopa but don't don't rely on it to fix all problems.

Dyskinesia is better than dystonia

As someone who delayed treatment, I have many thoughts on this… I was diagnosed really young (27) and at that time my doctor didn’t want to start me on c/l because of these side effects and also because she said that it becomes less effective over the duration of use.

But I also saw the MJFF video so I didn’t question it.

I’ve been on c/l for a while now and I wish I hadn’t delayed it as long as I had.

Alternative to c/l are a class of drugs called dopamine agnonists and those have way worse side effects that are far lesser discussed.

Too many thoughts on this to leave in the comments sections, tbh.

Hi! I just came across your page.. I really appreciate your open minded perspectives. I am newly diagnosed and on a very high dose of Carbo/Levo (Rytary). Switching my Movement Specialist for the 2nd time. It has been intense learning how to advocate for myself, deal with all the physical changes and live life as a full time student with big dreams and goals at 57.. my current doc is not super good at just being supportive and has left me hanging when I was really struggling and kinda left to figure out the meds on my own. He insisted I not increase my dose with out contacting him, but when I did he didn't respond!! I couldn't function! So, I did what was needed and took the med! I am studying as much as I can about the options, reaching out with questions, and he just says he believes I have Dopamine Dysregulation Syndrome. Like I am an addict. Sheesh, I just want to function.. Make other recommendations then! So, here we are on this journey to live.. I am also pursuing healing by prayer and meditation, declaration.. I have seen many get healed in our beautiful healing rooms and definately believe that healing is mine.. so.. Thanks again!!
Miki

I’m in my 4th year of CDopa/LDopa. How do I know it works?? When the drug wears off, muscle stiffness and moving in slow motion markedly increases. When I take my dose, the “slo-mo” effect goes away and I become reasonably functional. Do I experience a little dyskinesia? Yes, I do. I love what you said about your bartending- that you realize you are “ dyskinetic”, but you choose to ROLL WITH IT! I feel the same way, I still do public speaking with my job and I still occasionally gig with my band. In each case, I have to time my dose and watch what I eat prior. - For me,if I am fasting ( 6 hours or more from my last meal), I might get 5 hours benefit from my dose. If I am one hour or more since my last meal, I might get 3 hours benefit from my dose. If I try to take the dose with a meal- it’s a waste of time.
That’s my current matrix with L-dopa .
I’ll deal with the dyskinesia until we find something better.
Thanks again for your voice!