Dystonia in Young Onset Parkinson's Disease

Dystonia is a painful reality for some of us with Young Onset Parkinson's and for me, I used to get it randomly during the daytime. Thankfully the random bouts of dystonia no longer happens....but when I do get dystonia it now only happens in the morning. Here is what it looks like for me.

[@jerrym1070]

Beautiful weeping cherry tree . Would a tennis ball or racket ball with foot rolling over ball help ? PT showed me that exercise

[@davidhughes5998]

The blossom is beautiful this time of the year. Another wonderful educational video so helpful.

[@debbieheim3694]

Thank you so much! It answered a lot of my questions about my feet! I think the shoe solution is good too,especially when you said “if I can get them on before the ramping gets bad”. I know about that! God bless you and good luck😌

[@JeremyMcdonald]

Great info, Jennifer! I too struggle with dystonia and you’ve given us some great advice on how to combat it.🤠

[@jks3943]

Im glad you posted this. For several years i had this on occasion. Got worse as time went by. Now I know what and why. Got diagnosed with PD in May 2023. About to start Cd/Ld in December after my Base line study.

[@brianemmons8960]

Nice background, good info, and a guest appearance behind you!

[@bonnieschwartz8087]

This is happening to me as well... just in the past year or so. Very painful & very annoying. Mine is in the latter half of the day if I get low on CL. Working on adjusting timing and dose to avoid. Good tip on chewing the CL to speed up absorption. Always love your videos. ❤

[@kendrapatterson4629]

I get that symptom about an hr after I take Rytary and sometimes 1/2hr before my next dose. I’m supposed to talk to my MDS may 2nd about it, so thank you for the timely post 😊

[@daniellelittle6981]

Dystonia was one of my first presenting symptoms. It started in my foot on my left side and has spread now to my hand, arm, shoulder and face. As long as I’m not having a terrible off time my Sinemet generally controls the worst of it but frequently throughout the day I have toe curling. Many times I have found myself having to sit where I’m at, which as you know, is always the least practical place that could happen at. Great video!!!!

[@ASHEEHAN]

Thanks..................

[@mgw5377]

Im taking levodopa. I take 2 in the morning , 2 at lunch and 2 at night. Only time i notice any improvement is when i wake up in the morning because that was typically when its at its worst. I honestly think i could get by just taking them at night because i only see any benefits in the morning

[@carolbixby-mcdonald5660]

Uggg! Dystonia! Those look just like my feet during this incredibly uncomfortable PD symptom. My story really parallels yours with this issue. Dystonia began just out of the blue 6 months after I started C/L meds. My neurologist upped my dosage from 1&1/2 pills 3x a day to 1&1/2 pills 4x a day. It didn’t help. I would get this every morning upon rising. He didn’t talk to me about how to space out the meds, so I just spaced them 4&1/2 hours apart during the day. Then I had the idea to start micro-dosing, at around 1 to 1:30 am (of course I always wake up several times at night!) I take 1/2 a pill. The dystonia had greatly reduced, I still have occasional bouts but not every morning like before. One thing I do that helps a bit is to sit with my legs out in front and grab my toes and pull them towards me…..stretching them and this is a good hamstring stretch as well. Thanks again for your lovely channel, I am going “back in time” and binge watching. Blessings ❤

[@camillecali22]

I only have cervical dystonia but I get those foot cramps too. My foot cramps look just like yours So painful. I find that my feet get really cold even if its summer and 110 degrees Fahrenheit. I have found that putting my feet in warm water can stop the cramps.

[@SDWP]

I've gotten it a few times in my left foot....toes spreading apart. Man....does it hurt. Knock on wood...it hasn't happened in a while. I'll have to try the shoe tip next time!

[@toryberch]

Hi Jennifer 😊, I have mostly stiffness and slowness in my Parkinson's

[@auroramatera7555]

Hello my lovely friend, I was wondering if it’s normal that my levocarb carbidopa kicks in after 1 1/2 on a empty stomach. I take carbidopa levocarb 1 1/2 4XDAY.

[@LifewithParkinsons]

Hi Jennifer, I get the same symptom in the morning till the meds kick in, thanks😀😀

[@elizamaroney]

Have you tried Botox shots? I get the every 3-4 months in my shin. It freezes the muscle so my foot doesn’t cramp.

[@lanidevibar6151]

Hi.. my brother has dystonia . And we don't know how to make him feel comfortable.. the doctor gave medicine for hi brain and muscles . But still sometimes we felt that he is in alot of pain.😢

[@jimmcconnell7328]

Geez that looks painful. Why does the meds do this?