No video

Dystonia in Young Onset Parkinson's Disease

  Рет қаралды 5,767

Parkinson's Wiggles Project

Parkinson's Wiggles Project

Күн бұрын

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.

Пікірлер: 70
@jerrym1070
@jerrym1070 Жыл бұрын
Beautiful weeping cherry tree . Would a tennis ball or racket ball with foot rolling over ball help ? PT showed me that exercise
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
I love that tree and we have two of them!! Thank you :) & YES!! I totally forgot to mention I have two foot rollers that I used to use more often, but they were for plantar fasciitis and I do still use them on occasion. Great suggestion and thank you for the reminder 🥰
@debbieheim3694
@debbieheim3694 Жыл бұрын
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😌
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Thank you Debbie! 🥰
@davidhughes5998
@davidhughes5998 Жыл бұрын
The blossom is beautiful this time of the year. Another wonderful educational video so helpful.
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Thank you! The flowers are so lovely this year 🥰
@JeremyMcdonald
@JeremyMcdonald Жыл бұрын
Great info, Jennifer! I too struggle with dystonia and you’ve given us some great advice on how to combat it.🤠
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Thank you Jeremy! 🥰
@jks3943
@jks3943 9 ай бұрын
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. Just another adventure. Quote from pirates of the Caribbean. (Death is the Ultimate Adventure ).
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject 9 ай бұрын
Thank you for sharing your story! Not sure I read/interpreted your Pirates quote right but a PD diagnosis isn't a death sentence. I am very literal I've been told🥰
@daniellelittle6981
@daniellelittle6981 Жыл бұрын
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!!!!
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Thank you Danielle!! May I ask how long since you've been diagnosed? I've read about it spreading and knowing how it feels in my feet I can't imagine feeling it other places. It sounds like you are managing it very well....As soon as mine goes away, I do everything to not think about it and get on with my morning 🥰
@daniellelittle6981
@daniellelittle6981 Жыл бұрын
@@ParkinsonsWigglesProject Sure! I have actually not had Parkinson's all that long. I got it at 33 years old. I have had it for four full years now and am at that start of my fifth year having it. I think my dystonia is worse for me than others since I've had it since onset. Sinemet helps a lot. Unless I'm off. Love your videos!
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
@@daniellelittle6981 Thank you for the compliment and sharing your story!! It would make sense that it might be worse for you since you had at onset. It is crazy how similar all of our PD experiences are and how different, yet we understand each other despite. I've learned so much from people with Parkinson's, and why I believe in sharing our stories 🥰
@brianemmons8960
@brianemmons8960 Жыл бұрын
Nice background, good info, and a guest appearance behind you!
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Isn’t it beautiful! Love the sneaking into view making sure mama is ok 🥰
@bonnieschwartz8087
@bonnieschwartz8087 Жыл бұрын
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. ❤
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Thank you Bonnie!! Totally annoying and very painful indeed....Chewing CL or an orange or carbonated beverage helps big time... I have no doubt you will get the adjustment right 🥰
@bonnieschwartz8087
@bonnieschwartz8087 Жыл бұрын
@@ParkinsonsWigglesProject and when I say I love the videos, I mean that your videos are helpful and educational - especially when I am trying to describe something like dystonia. Obviously, I don't love that you have dystonia ! DOH !
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
@@bonnieschwartz8087 you are so sweet! I didn't think that at all 🙃
@kendrapatterson4629
@kendrapatterson4629 Жыл бұрын
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 😊
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Thank you Kendra!! It took me some time to get it dialed in but it finally happened :) Hopefully your appt with MDS will help 🥰
@carolbixby-mcdonald5660
@carolbixby-mcdonald5660 11 ай бұрын
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 ❤
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject 11 ай бұрын
Thank you so much for your comment! Dystonia is so painful and whatever adjustments we can make to relieve it I am all for. I had to listen to my body to figure it out and I too wake up in the middle of the night several times and take a C/L. I also have two different sized rollers that were for plantar fasciitis that also help stretch out my foot. Cheers :)
@mgw5377
@mgw5377 4 ай бұрын
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
@ASHEEHAN
@ASHEEHAN Жыл бұрын
Thanks..................
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Thank you!! 🥰
@Daissweetest
@Daissweetest Жыл бұрын
Botox will help, magnesium supplements/cream,I sit with legs crossed. I don’t get them often , ER levodopa helps so we don’t run empty on dopamine. I do 1 and half 25/100 levodopa and then wait hour and take Rytary 145mg. (time spread out so I don’t get Dyskinesia ), The Rytary is new, since levodopa is only lasting 2hrs
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Thank you! I keep my C/L bottle right next to my bed and wake up usually every 2-4 hours and take one. But have thought about ER Levodopa for the nighttime : )
@Daissweetest
@Daissweetest Жыл бұрын
@@ParkinsonsWigglesProject I used to do that, now I take my regular pill and then an hour later Around midnight I’ll take ER 50/200 not Rytary, and that will last me 4 hours, I get a better nights sleep.
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
@@Daissweetest I love those nights with a four hour chunk of sleep time :) During my next visit with my MDS I will as her about adding ER for night time. Thank you!!
@LifewithParkinsons
@LifewithParkinsons Жыл бұрын
Hi Jennifer, I get the same symptom in the morning till the meds kick in, thanks😀😀
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Hi David! Have you tried the shoes trick?
@LifewithParkinsons
@LifewithParkinsons Жыл бұрын
@@ParkinsonsWigglesProject Yes, putting on a pair of shoes does help. I basically stretch and exercise till it goes away.
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
@@LifewithParkinsons yes on stretching! Would be rock star to throw in some sit ups when this is going on but would be too much for me 🤗
@camillecali22
@camillecali22 Жыл бұрын
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.
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
So painful! I have a hot tub which helps relax me big time...but I am always it seems on the hot or warm side...though in the winter my hands and feet will get cold. That's incredible that even when 110 your feet can still get cold?! My mom is often cold and she had PD as well. Thank you for your comment! 🥰
@lanidevibar6151
@lanidevibar6151 7 ай бұрын
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.😢
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject 7 ай бұрын
Dystonia is SO painful and I am sorry to hear your brother has it! There's different kinds of dystonia and in order to try and alleviate his pain you need to know what is causing it. Mine is Levadopa induced.
@alittlebitshaky
@alittlebitshaky Жыл бұрын
Luckily dystonia isn’t a big part of my PD. In my feet mostly and mostly when I walk up my hill in the mornings unmedicated (I know…crazy!). It’s a slow trip down the hill with my toes curled up in my boots, annoying but not painful.
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
That's amazing you can walk unmedicated! I know one other like you...I couldn't walk at all with my meds. I would take annoying over painful any day 🥰
@alittlebitshaky
@alittlebitshaky Жыл бұрын
@@ParkinsonsWigglesProject I try to make exercise my priority in the morning…if possible unmedicated….and sometimes it works and sometimes it doesn’t.
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
@@alittlebitshaky Impressive, truly!! 🙌
@SDWP
@SDWP Жыл бұрын
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!
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
The shoe trick totally helps! But I will knock on wood with you, that it won't be coming back 🥰
@toryberch
@toryberch Жыл бұрын
Hi Jennifer 😊, I have mostly stiffness and slowness in my Parkinson's But in the last few months my toes all of them are a bit fidgety wiggly and as soon as I clench my toes to relax them I get lots of restless leg feelings afterwards. Any thoughts?
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Hi Tory! I don't have any thoughts, sorry. But check this out and see if the information helps 🥰davisphinneyfoundation.org/8-ankle-foot-stretches-parkinsons/
@toryberch
@toryberch Жыл бұрын
@@ParkinsonsWigglesProject Thanks Jennifer 😊🤗 I just didn't know if I was in the beginning of going down the dystonia road or not but I will check that out 👍
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
It gets tricky knowing but if you do some digging you might read something where your like that’s it, that’s what I’m feeling! Not sure how long you’ve had PD but it took me a bit of time to work things out 💕
@elizamaroney
@elizamaroney 3 ай бұрын
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.
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject 3 ай бұрын
I haven't yet. It's not a daily thing and usually short...but if this changes I would absolutely talk with my MDS about it. Thank you for mentioning it because I have read it really helps 🥰
@iCanHearUSign
@iCanHearUSign Ай бұрын
Will be trying Botox injections next month. Fingers crossed it works so I can walk more comfortably without straining my good right foot.
@auroramatera7555
@auroramatera7555 Жыл бұрын
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.
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Hi Aurora! Hmmm, I can only speak for myself and from what I have heard from others, but that seems like a long time to kick in on an empty stomach, but your doctor or MDS would be the one to ask....Do you have a MDS (Movement Disorder Specialist) or Neurologist that you could talk with about it? Are you taking the extended release form of C/L? Maybe some people have delayed response, it could be totally normal. ♥
@jimmcconnell7328
@jimmcconnell7328 Жыл бұрын
Geez that looks painful. Why does the meds do this?
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
It is painful! There are a few different reasons it happens but for me it happens when I need a dose of C/L... so when my dopamine levels are low. Thank you for your comment and question! 🥰
@Mike-mo6jm
@Mike-mo6jm Жыл бұрын
You don't mind me asking you take something different for your dystonia?
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
Like botox? I don't because it usually last 5-10 minutes at the most and only happens in the morning. And it's not a daily occurrence. Like today there was no dystonia : )
@Mike-mo6jm
@Mike-mo6jm Жыл бұрын
@@ParkinsonsWigglesProject yeah just got back here , I know everyone is different. And it really is a experimental game with the doctor,s help, I never asked my doc about the Botox yet,. I been taking Trihexyphenidyl. Seems to been working ok most of the time with the C.L. Thanks for your program ,. I like to read everyone's comments.
@ParkinsonsWigglesProject
@ParkinsonsWigglesProject Жыл бұрын
@@Mike-mo6jm I am so happy that you like reading the comments, I do too! And was hoping to create a forum of sorts with these comments so that we can share and learn from each other : )
@Mike-mo6jm
@Mike-mo6jm Жыл бұрын
@@ParkinsonsWigglesProject That would be great. Have a wonderful day , after your med.o'. Kick-in.,, 🌤️☀️
@misssabaitip
@misssabaitip Жыл бұрын
I have it every time after like two hours of Sinemet and it lasts for like two hours it’s so painful.
Parkinson's Disease Progression. YOPD Eight Years After My Diagnosis.
19:02
Parkinson's Wiggles Project
Рет қаралды 21 М.
My Carbidopa/Levodopa Evolution...10 Years w/Parkinson's!
21:02
Parkinson's Wiggles Project
Рет қаралды 66 М.
Meet the one boy from the Ronaldo edit in India
00:30
Younes Zarou
Рет қаралды 13 МЛН
CHOCKY MILK.. 🤣 #shorts
00:20
Savage Vlogs
Рет қаралды 28 МЛН
Fortunately, Ultraman protects me  #shorts #ultraman #ultramantiga #liveaction
00:10
Ouch.. 🤕
00:30
Celine & Michiel
Рет қаралды 43 МЛН
For Those Recently Diagnosed With Parkinson's ❤️
15:47
Parkinson's Wiggles Project
Рет қаралды 4,8 М.
YOPD. A Young Onset Parkinson's diagnosis
11:00
Parkinson's Wiggles Project
Рет қаралды 10 М.
Unlocking Parkinson's | 60 Minutes Archive
12:53
60 Minutes
Рет қаралды 126 М.
Jim Wu - Life with Young Onset Parkinson's Disease
5:06
ParkinsonSocietyBC
Рет қаралды 1,4 М.
Asking Someone If They Have Parkinson's Disease?
6:16
Parkinson's Wiggles Project
Рет қаралды 1,1 М.
“Newly Diagnosed with Parkinson’s: Now What?” with Dr. Aaron Haug
43:17
Davis Phinney Foundation for Parkinson's
Рет қаралды 23 М.
Parkinson's Off Time & Fighting Depression
11:22
Parkinson's Wiggles Project
Рет қаралды 8 М.
Parkinson’s Dystonia Symptoms, Manifestations, & Treatments
53:53
Parkinson's Community Los Angeles
Рет қаралды 5 М.
Parkinson's Disease & Medications - If Your Doctor Isn't Listening
11:11
Parkinson's Wiggles Project
Рет қаралды 7 М.
"I was just diagnosed with young-onset Parkinson's."
9:35
The Secret Life of Parkinson's
Рет қаралды 7 М.
Meet the one boy from the Ronaldo edit in India
00:30
Younes Zarou
Рет қаралды 13 МЛН