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
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. 🎉
Hi Mark....Thank you for sharing your story and happy to hear you can walk again, got back into life and all the good stuff! I too take C/L every 1.5- 2 hours and just like you if I don't I turn into a immobile sack of potatoes 🥰
@@auroramatera7555 first I read Parkinson's and the B1 Therapy Book by Daphne Bryan Then I went with 100mg sublingual daily by superior source Reading the book is very valuable
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)?
No need to apologize for sharing your story....I have a feeling this is the short version of it 😉have you seen my 10 year evolution Levodopa video? I'd say around year 5 I started to get some slight wiggles, but around 7 they became more frequent. But I still have days without dyskinesia, though fewer. They are not a constant and for me they vary in frequency and intensity. I am still highly functional, in my mind, but have to wait sometimes for them to fade before driving ect. but again it's not always. It's hard to explain because we are so different and like I say in the video, they are subjective to some extent. I literally wouldn't be able to move without C/L and will take the wiggles over not being able to move any day. I admire anyone who can track their symptoms daily and with any consistency. I've tried, it sooo doesn't work for me.
In case you haven't seen it....here's a link. To help confirm my diagnosis I did what is called the Levodopa test and it gave me my life back! It was the first medication I took and never went on an agonist...I play poker and spending money so I thought it best not to go there 🙃th-cam.com/video/AL-86-dZDi4/w-d-xo.html
@@ParkinsonsWigglesProject thanks Jennifer! Not how long I will track, but I am keeping up so far. Eventually it may not matter so much and maybe I’ll quit logging.
I would do it if I could....I think it's a great thing to do because as time passes you forget somethings and having notes/symptom tracking is a great resource to have @@ParkinsonsPlaybook
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.
Thank you so much for your comment and sharing your story! One thing I know for sure is we can't know everything 🙃 and I so agree about not living in fear! Life is short and I am going to make the most of it!
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.
Very good Peter. I also take just enough carbodopa levodopa to get by, and often feel it wearing off a while before my next dose. But to me, that is preferable to taking too much too soon and increasing the chances of dyskinesia setting in and becoming a regular issue. It truly is a day by day process!
Thank you for sharing Peter! What matters is that we do what works for us....sometimes we may doubt ourselves and knowing the right thing isn't always easy, but sooner or later we get there 🥰
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.
Thank you for your comment! My dyskinesias are non-existent somedays, mild to medium others, and then bad some others. It's a bit all over the place but as long as I can move I deal with it the best I can ♥
I looked it up after reading your comment 🙃and thank you for your comment!! I am going to copy and paste something for you.....Here is Michael Okun's response to the trial: instagram.com/p/C5UNI_pxJrm/? Big news with positive result announced for a randomized study of a GLP-1 agonist for Parkinson's just released in New England Journal. A new era for Parkinson's or alternatively, more questions than answers raised by Meissner and colleagues. Key Points: - This multi-center French trial studied Lixisenatide which is a glucagon-like peptide-1 receptor agonist used for in diabetes. - The trial was a phase 2 double-blind randomized and placebo-controlled. My take: We have continued our multiple year love affair with various diabetes drugs and their potential links to Parkinson's disease, however the current study results are the most promising. Interpret with caution: there is a number called the 'clinically meaningful threshold' and those reading this study should appreciate that the results 'fell short' of this important metric. There will certainly be many arguments among experts as to whether this study met a minimum threshold for neuroprotection, and my personal opinion is that it did not. Here is an important message: In my view do not rush to prescribe this drug or try to creatively acquire it. We have been down this road many times including leukemia drugs, cough syrups and lithium. The data is not yet there to proceed to prescribing. More importantly, the weight loss associated with GLP-1’s is not desirable in the majority of cases of Parkinson’s disease and the nausea and vomiting will not be a welcome symptom. We must ask the important questions as to why the non-motor outcomes did not change, and why the other GLP-1 studies have been negative? Is there a blind spot here we are missing? Please appreciate this was trialed in only very early Parkinson's disease and thus there may be 'generalizablility' concerns. I do not want to diminish a great paper with a randomized design and encouraging data, however let's not rush to the drug store counter. Perhaps we should consider ad augusta per angusta - to glory through narrow spaces by continuing to follow the data with diabetes drugs and see where it leads and what it teaches us. nejm.org/doi/full/10.1056/NEJMoa2312323 #Parkinsons #fixelinstitute#ozempic #diabetes #michaelokun
@@ParkinsonsWigglesProject not a cure, but hopefully after the third trial will know more. At least it’s a little hope. Now we need the senate to pass the Parkinson’s bill.
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?
Hi Rick! Oh no, there's no misinformation in the video nor is MJFF doing anything wrong...it is me asking a question about how dyskinesia is framed in a "fundraising video."... which it being a fundraising video is also just my impression. But does that framing impact our thoughts and feelings about a topic. Because fundraising typically needs some kind of urgency hence the ominous vibe. I think as consumers of media we have to ask ourselves when we come across information what is it's intent or purposes. The link to the video is in the description. I try so hard in the video to make it clear MJFF hasn't done anything wrong, but I am curious if videos like this influence our perception or fears about Carbidopa/Levodopa. This is why I was hesitant to do this video ♥
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!
I love what you have said! "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." One thing I think is easy to forget is how long Michael J. Fox has had Parkinson's. 33 years ago!!! And I think especially in the beginning it can be really to scary to see intense dyskinesia as your future with this disease...which is why I try not to look too far ahead. Thank you Michelle!! ♥
@@ParkinsonsWigglesProject I know what you mean there is so much to do these days that it is hard to watch all of our peer videos because they're just isn't enough time
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.
Thank you for your comment Phil! I hope you have read the other comments to see what others experience and not just my experience and have had a conversation with your doctor. I hope all goes well ♥
Hello Phil, please share with me the treatment combine with the high dosage of vitamin B1. Where do you buy & which brand is it? Also, I would like to know which dosage is it? Thanks. Hope to hear from you soon.
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!
Thank you for sharing you current C/L matrix and story!! It shows that YES there are challenges, but we can find ways that work for us, that we have to get creative, and "ROLL WITH IT!" 🥰
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
Hi Miki! I hope you find a MDS who listens to you and understands your needs. You are not an addict. The medications we take we NEED to function as close to normal as we can. When I was diagnosed I owned a restaurant and when I needed a dose I took it....even if it was before I was "supposed" to....I had no choice because I needed to be able to run around like a restaurant owner runs around. You will find your sweet spots, even when there might be challenges....it's possible and you have a wonderful and healthy perspective about your diagnosis...finding your beautiful healing room, space, and place to live life ❤️
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.
Thank you so much for sharing your story and thoughts!! I've discussed agonists before and the reasons why I didn't feel they were the best place for me to start because of the side effects. I play poker and love to shop, both mean spending money so I didn't want to risk it. Plus when I was given C/L it worked so good that there was no way I felt there was no reason to stop taking and try something else 🥰 And yes there is soooo many thoughts about this subject so thanks again for adding yours ❤️
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. ❤❤❤❤🇨🇦
Hey there.....just seeing your reply, forgive my delay! Thank you for sharing your story and thoughts about living about best lives with PD. Even with dyskinesia, which I don't have all of the time and it's not the same when I have it....I consider myself highly functional. I am still driving, bartending, doing freelance work, and remain highly social, going to concerts and out to dinner etc. I am with you hoping that one day, someday, there will be a cure!!!
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.
Yes!!! My doctor mentions it every visit. In one sense it's so great to know that it is an option I can explore if I want to. On the other hand it feels like it is being pushed. I imagine it's a hard line to walk for even the best doctors. Lasers and DBS Leads and my brain make me very nervous. Thank you so much for your comment!! 🥰
Hello, is there a set number of pills you take which give you more dyskinesia than other days. I’m taking about 7 pills combined a day. I am concerned about getting dyskinesia if I have to up the dosage.
@@Anthony99355 Hi Anthony! I take 1 C/L every 1.5 - 2.0 hours. At night I can get a 4-5 hour chunk of sleep so that’s an exception. For me what seems to matter is stress, alcohol consumption, diet and where I’m at in my menstrual cycle. There are days I hardly get dyskinesia, everyday is different, and it’s not an all day everyday thing. If that helps or makes sense 🥰
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.
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. ?
If you have seen my diagnosis video you will know I am a believer in second opinions! It can slow down the process a bit, but if you feel it's time to see another MDS I say get the referral and see what they think. Thank you for sharing your story with us!
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.
LOL! I am a sustaining member 🥰 I had never considered these videos having an influence on our perceptions about medications, but in this particular video there were no success stories or people who had make C/L work for them. Something to ponder for sure, and I am leaning toward a yes. Thank you for your comment and making me smile! ♥
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 .
Hi Jordana! I absolutely know what you are talking about....the magnet feeling pulling to one side!! For me my left side is the side that is impacted by PD most. The pull is to the opposite, it's my right and when I notice it most is when I do dishes.... My head hangs to the right and my torso curls in too. For me it happens when I am off, and am waiting for my C/L to kick in. It doesn't happen daily. I have never talked with my MDS about it....it hasn't caused much trouble but you are the only person I have heard describe it. It's like a curling down to the right. Based on my symptoms I would say it seems more like a kind of dystonia which I get in my feet sometimes in the morning but really really hurts. The pull to my right doesn't hurt nearly as much but is uncomfortable. My C/L dosage took some time to get right. I kept adding more and more pills until I got to the place I have been in for the last 5 or so years.This is my sweet spot, but I do get dyskinesia, not 24/7 from mild to intense. The mild is more common than the intense. But it is vital that you find your sweet spot!! Have you experimented with timing ect?? Thank you so much for sharing and your comment! You can email me at jennnifer@thewigglesproject.com ♥
@@ParkinsonsWigglesProject Thanks for your reply. Sorry for the delay in responding but my laptop was throwing a mini tantrum because my start up disk was full, so I had to do some housekeeping. Yeah, this pulling thing is odd but I guess just about every day I'm thinking "what now?" It's hard to nail it down when it's different day to day, moment to moment, but I will keep trying to find the right cocktail. Thanks so much for sharing your email address. I might share some of my other thoughts and issues.
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!
Amantadine got me walking again after 6+ years of taking Sinemet and having it stop working. The Amantadine causes me screaming nightmares often. My wife is scarred to death!
@@ParkinsonsWigglesProject Does it make any difference? I've been prescribed it for meds induced dyskinesia, starting sometime next week. To be honest, I'm tired of taking drugs that either do absolutely nothing, or only make me feel worse through their side effects. I want to try dopamine agonists instead of crappy levodopa, but the neurologist says agonists have a high risk of causing impulse control problems like compulsive gambling. I asked him what the actual risk is and he said '20%', which to me, as a betting man, seems like a bet worth taking! In other words, he knows nothing about risk v reward yet still thinks he can lecture me on it and deny a whole class of drugs that may help me, while insisting I keep taking his shitty Co-benladopa despite I've been saying for two years that the ONLY thing I get from it is dyskinesia!
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.
Thank you so much for your comment! Exercise, diet, a good night sleep, and reducing stress are the most complementary to C/L! I was almost a music major and learning to play an instrument I believe is so great for the brain….so is music! 🥰
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
Hi Teresa! Thank you so much for your kind words and I am sooo happy to hear your confidence is growing ♥♥♥
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. 🎉
Hi Mark....Thank you for sharing your story and happy to hear you can walk again, got back into life and all the good stuff! I too take C/L every 1.5- 2 hours and just like you if I don't I turn into a immobile sack of potatoes 🥰
Appreciate your story, very glad it helped you to get back to some sort of normalcy!
Hi Mark, Thank you for sharing your story. I would like to start B1 therapy. What’s the brand and the dose to start. Hope to hear from you soon.❤
@@auroramatera7555 first I read
Parkinson's and the B1 Therapy
Book by Daphne Bryan
Then I went with 100mg sublingual daily by superior source
Reading the book is very valuable
@@auroramatera7555 I sent a reply and within a few minutes it disappeared. Did you get it?
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)?
No need to apologize for sharing your story....I have a feeling this is the short version of it 😉have you seen my 10 year evolution Levodopa video? I'd say around year 5 I started to get some slight wiggles, but around 7 they became more frequent. But I still have days without dyskinesia, though fewer. They are not a constant and for me they vary in frequency and intensity. I am still highly functional, in my mind, but have to wait sometimes for them to fade before driving ect. but again it's not always. It's hard to explain because we are so different and like I say in the video, they are subjective to some extent. I literally wouldn't be able to move without C/L and will take the wiggles over not being able to move any day. I admire anyone who can track their symptoms daily and with any consistency. I've tried, it sooo doesn't work for me.
In case you haven't seen it....here's a link. To help confirm my diagnosis I did what is called the Levodopa test and it gave me my life back! It was the first medication I took and never went on an agonist...I play poker and spending money so I thought it best not to go there 🙃th-cam.com/video/AL-86-dZDi4/w-d-xo.html
@@ParkinsonsWigglesProject thanks Jennifer! Not how long I will track, but I am keeping up so far. Eventually it may not matter so much and maybe I’ll quit logging.
@@ParkinsonsWigglesProject thanks so much, I’m going to watch it now!
I would do it if I could....I think it's a great thing to do because as time passes you forget somethings and having notes/symptom tracking is a great resource to have @@ParkinsonsPlaybook
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.
Thank you so much for your comment and sharing your story! One thing I know for sure is we can't know everything 🙃 and I so agree about not living in fear! Life is short and I am going to make the most of it!
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%
I love hearing the good stories about DBS!! Thank you for sharing 🥰
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.
Very good Peter. I also take just enough carbodopa levodopa to get by, and often feel it wearing off a while before my next dose. But to me, that is preferable to taking too much too soon and increasing the chances of dyskinesia setting in and becoming a regular issue. It truly is a day by day process!
Thank you for sharing Peter! What matters is that we do what works for us....sometimes we may doubt ourselves and knowing the right thing isn't always easy, but sooner or later we get there 🥰
Thanks Peter! Curious, how long have you been taking it? Did you start as soon as you were diagnosed?
@@ParkinsonsPlaybook Diagnosed 2016 and started LD in 2017. Tried to carry on without but gave in
Have you had hallucinations since you’ve had Parkinson ?
Not yet thankfully!
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.
Thank you for your comment! My dyskinesias are non-existent somedays, mild to medium others, and then bad some others. It's a bit all over the place but as long as I can move I deal with it the best I can ♥
How long did it take to develop dyskinesia once you began the meds? Thanks for sharing!
@@ParkinsonsPlaybook Five Years.
Just curious if you seen the news this week. In regards to the diabetes drug possibly stopping the progression of Parkinson’s?
I looked it up after reading your comment 🙃and thank you for your comment!! I am going to copy and paste something for you.....Here is Michael Okun's response to the trial: instagram.com/p/C5UNI_pxJrm/?
Big news with positive result announced for a randomized study of a GLP-1 agonist for Parkinson's just released in New England Journal. A new era for Parkinson's or alternatively, more questions than answers raised by Meissner and colleagues.
Key Points:
- This multi-center French trial studied Lixisenatide which is a glucagon-like peptide-1 receptor agonist used for in diabetes.
- The trial was a phase 2 double-blind randomized and placebo-controlled.
My take: We have continued our multiple year love affair with various diabetes drugs and their potential links to Parkinson's disease, however the current study results are the most promising. Interpret with caution: there is a number called the 'clinically meaningful threshold' and those reading this study should appreciate that the results 'fell short' of this important metric. There will certainly be many arguments among experts as to whether this study met a minimum threshold for neuroprotection, and my personal opinion is that it did not. Here is an important message: In my view do not rush to prescribe this drug or try to creatively acquire it. We have been down this road many times including leukemia drugs, cough syrups and lithium. The data is not yet there to proceed to prescribing. More importantly, the weight loss associated with GLP-1’s is not desirable in the majority of cases of Parkinson’s disease and the nausea and vomiting will not be a welcome symptom. We must ask the important questions as to why the non-motor outcomes did not change, and why the other GLP-1 studies have been negative? Is there a blind spot here we are missing? Please appreciate this was trialed in only very early Parkinson's disease and thus there may be 'generalizablility' concerns. I do not want to diminish a great paper with a randomized design and encouraging data, however let's not rush to the drug store counter. Perhaps we should consider ad augusta per angusta - to glory through narrow spaces by continuing to follow the data with diabetes drugs and see where it leads and what it teaches us.
nejm.org/doi/full/10.1056/NEJMoa2312323 #Parkinsons #fixelinstitute#ozempic #diabetes #michaelokun
@@ParkinsonsWigglesProject not a cure, but hopefully after the third trial will know more. At least it’s a little hope. Now we need the senate to pass the Parkinson’s bill.
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?
Hi Rick! Oh no, there's no misinformation in the video nor is MJFF doing anything wrong...it is me asking a question about how dyskinesia is framed in a "fundraising video."... which it being a fundraising video is also just my impression. But does that framing impact our thoughts and feelings about a topic. Because fundraising typically needs some kind of urgency hence the ominous vibe. I think as consumers of media we have to ask ourselves when we come across information what is it's intent or purposes. The link to the video is in the description. I try so hard in the video to make it clear MJFF hasn't done anything wrong, but I am curious if videos like this influence our perception or fears about Carbidopa/Levodopa. This is why I was hesitant to do this video ♥
Oh to have a job that allows you to have a sneaky little beer!😜
Sneaky little beers are hard to resist
on the job 🙃
Good stuff. Everything‘s an agenda. One would think healthcare, science, social work would be exempt. One would be wrong!
Thank you Gavin! ♥
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!
I love what you have said! "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." One thing I think is easy to forget is how long Michael J. Fox has had Parkinson's. 33 years ago!!! And I think especially in the beginning it can be really to scary to see intense dyskinesia as your future with this disease...which is why I try not to look too far ahead. Thank you Michelle!! ♥
@@ParkinsonsWigglesProject Thanks girl! I agree....I choose to live in the present as well.
You have the best attitude, love it!
@@ParkinsonsPlaybook Thank you! I have a great therapist 🙃❤️🥰
I just subscribed to@@ParkinsonsPlaybook Nice chat with J Mac!
Hi Jennifer thanks for the update and fantastic information 😃
Hi David! Thank you for watching! I've been so busy lately I can keep up watching all the videos I want, including yours ♥
@@ParkinsonsWigglesProject I know what you mean there is so much to do these days that it is hard to watch all of our peer videos because they're just isn't enough time
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.
Thank you for your comment Phil! I hope you have read the other comments to see what others experience and not just my experience and have had a conversation with your doctor. I hope all goes well ♥
Hello Phil, please share with me the treatment combine with the high dosage of vitamin B1. Where do you buy & which brand is it? Also, I would like to know which dosage is it? Thanks. Hope to hear from you soon.
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!
Thank you for sharing you current C/L matrix and story!! It shows that YES there are challenges, but we can find ways that work for us, that we have to get creative, and "ROLL WITH IT!" 🥰
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
Hi Miki! I hope you find a MDS who listens to you and understands your needs. You are not an addict. The medications we take we NEED to function as close to normal as we can. When I was diagnosed I owned a restaurant and when I needed a dose I took it....even if it was before I was "supposed" to....I had no choice because I needed to be able to run around like a restaurant owner runs around. You will find your sweet spots, even when there might be challenges....it's possible and you have a wonderful and healthy perspective about your diagnosis...finding your beautiful healing room, space, and place to live life ❤️
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.
Thank you so much for sharing your story and thoughts!! I've discussed agonists before and the reasons why I didn't feel they were the best place for me to start because of the side effects. I play poker and love to shop, both mean spending money so I didn't want to risk it. Plus when I was given C/L it worked so good that there was no way I felt there was no reason to stop taking and try something else 🥰 And yes there is soooo many thoughts about this subject so thanks again for adding yours ❤️
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. ❤❤❤❤🇨🇦
Hey there.....just seeing your reply, forgive my delay! Thank you for sharing your story and thoughts about living about best lives with PD. Even with dyskinesia, which I don't have all of the time and it's not the same when I have it....I consider myself highly functional. I am still driving, bartending, doing freelance work, and remain highly social, going to concerts and out to dinner etc. I am with you hoping that one day, someday, there will be a cure!!!
@@ParkinsonsWigglesProject keep active girlfriend!! ❤️🇨🇦
@@GoProGoalieUzi you too mister!! ♥
Good point of view and good to get different voices out there.
Thank you! ❤️
bonjour dear
thank you for sharing
Thank you Mike! 🥰
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.
Yes!!! My doctor mentions it every visit. In one sense it's so great to know that it is an option I can explore if I want to. On the other hand it feels like it is being pushed. I imagine it's a hard line to walk for even the best doctors. Lasers and DBS Leads and my brain make me very nervous. Thank you so much for your comment!! 🥰
Hello, is there a set number of pills you take which give you more dyskinesia than other days. I’m taking about 7 pills combined a day. I am concerned about getting dyskinesia if I have to up the dosage.
@@Anthony99355 Hi Anthony! I take 1 C/L every 1.5 - 2.0 hours. At night I can get a 4-5 hour chunk of sleep so that’s an exception. For me what seems to matter is stress, alcohol consumption, diet and where I’m at in my menstrual cycle. There are days I hardly get dyskinesia, everyday is different, and it’s not an all day everyday thing. If that helps or makes sense 🥰
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.
Thank you for sharing your thoughts and I hope your June appointment goes good and gives some more reassurance! ♥
Best of luck with your June appt!
Dyskinesia is better than dystonia
Dystonia is soooooo painful!!
Thank you for sharing
Thank you for watching! 🥰
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. ?
If you have seen my diagnosis video you will know I am a believer in second opinions! It can slow down the process a bit, but if you feel it's time to see another MDS I say get the referral and see what they think. Thank you for sharing your story with us!
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.
LOL! I am a sustaining member 🥰 I had never considered these videos having an influence on our perceptions about medications, but in this particular video there were no success stories or people who had make C/L work for them. Something to ponder for sure, and I am leaning toward a yes. Thank you for your comment and making me smile! ♥
I'm always looking for a small victory in a never ending battle. Thanks for sharing.
Thank you Roger!!
Five years.
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 .
Hi Jordana! I absolutely know what you are talking about....the magnet feeling pulling to one side!! For me my left side is the side that is impacted by PD most. The pull is to the opposite, it's my right and when I notice it most is when I do dishes.... My head hangs to the right and my torso curls in too. For me it happens when I am off, and am waiting for my C/L to kick in. It doesn't happen daily. I have never talked with my MDS about it....it hasn't caused much trouble but you are the only person I have heard describe it. It's like a curling down to the right. Based on my symptoms I would say it seems more like a kind of dystonia which I get in my feet sometimes in the morning but really really hurts. The pull to my right doesn't hurt nearly as much but is uncomfortable. My C/L dosage took some time to get right. I kept adding more and more pills until I got to the place I have been in for the last 5 or so years.This is my sweet spot, but I do get dyskinesia, not 24/7 from mild to intense. The mild is more common than the intense. But it is vital that you find your sweet spot!! Have you experimented with timing ect?? Thank you so much for sharing and your comment! You can email me at jennnifer@thewigglesproject.com ♥
@@ParkinsonsWigglesProject Thanks for your reply. Sorry for the delay in responding but my laptop was throwing a mini tantrum because my start up disk was full, so I had to do some housekeeping. Yeah, this pulling thing is odd but I guess just about every day I'm thinking "what now?" It's hard to nail it down when it's different day to day, moment to moment, but I will keep trying to find the right cocktail. Thanks so much for sharing your email address. I might share some of my other thoughts and issues.
Thank you for the work you do and info you provide.
Thank you Geoffrey! 🥰
Great information and opinions, thanks David
Thank you so much David!! 🥰
Always great to listen to you. Big hug
Big hugs to you Doris! Thank you ♥
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!
Thank you Jeremy! Love all the smiles and laughs you bring with your videos 💕
Yes, terror.
If you don't mind me asking....where does your terror about Dyskinesia come from?
Have you tried Amantadine?
Amantadine got me walking again after 6+ years of taking Sinemet and having it stop working. The Amantadine causes me screaming nightmares often. My wife is scarred to death!
I have...take it twice per day 🥰
@@ParkinsonsWigglesProject Does it make any difference? I've been prescribed it for meds induced dyskinesia, starting sometime next week. To be honest, I'm tired of taking drugs that either do absolutely nothing, or only make me feel worse through their side effects. I want to try dopamine agonists instead of crappy levodopa, but the neurologist says agonists have a high risk of causing impulse control problems like compulsive gambling. I asked him what the actual risk is and he said '20%', which to me, as a betting man, seems like a bet worth taking! In other words, he knows nothing about risk v reward yet still thinks he can lecture me on it and deny a whole class of drugs that may help me, while insisting I keep taking his shitty Co-benladopa despite I've been saying for two years that the ONLY thing I get from it is dyskinesia!
❤❤❤❤❤❤❤❤
💕♥💕
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.
Thank you so much for your comment! Exercise, diet, a good night sleep, and reducing stress are the most complementary to C/L! I was almost a music major and learning to play an instrument I believe is so great for the brain….so is music! 🥰