Dystonia and Parkinson's Disease - Who is really in control?
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- เผยแพร่เมื่อ 29 มิ.ย. 2024
- Dystonia affects all people with Parkinson's Disease a little differently, but it likely will be painful for everyone at one point in time. That pain can cause people to lose hope and become frustrated with their chronic illness. In this video I explore that frustration while explaining the facts surrounding dystonia.
Link to Rough Care Canada - rougecare.ca/?ref=LifewithPar...
Resources:
www.psychologytoday.com/us/bl...
www.parkinson.org/understandi...
www.apdaparkinson.org/article...
practicalneurology.com/articl...
Check out our website! - lifewithparkinsons.ca/
Connect with us on Facebook - / davidslifewithparkinsons
I've included some helpful links in the video description.
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The real thing again - the truth of the pain of PD with dystonia - it's a losing effort if you think you can control dystonia.- thanks for bringing this symptom to the surface.
Thanks Alec. I like to talk about what it's really like😊😀😃
Hi, David. Thanks for sharing your research and your own struggles. And You keeping it real, means the world to me. No sugar coating. And You explaining things in layman terms is very helpful, too.
Hi T Kerby. Thank you for your kind words and encouragement. I am glad you find this video helpful. I love making them. 😊😁😀
Thanks so much. Great and informative video. I realize now that even 2-3 years before diagnosis, I had severe cramping in my toes, as well as in my thigh. (And it was very painful.) However, my doctor just said… “oh, you probably have a nerve problem, but if you don’t have surgery, we’ll just leave it alone for now.
I sometimes have cramps of the toes on my L foot, but sometimes it is in both feet, overnight, or in early morning, but didn’t even know about Dystonia until I started listening to videos after my diagnosis. I haven’t felt thigh cramps in some time, so I am so glad cuz those were the worst. But if it does return, I w/ also contact my Neurologist.
I will be seeing my PT this week to address some newer issues, but w/ mention this to her.
My husband (my best friend & care partner) is very supportive. I mistakenly took my evening Controlled Release C/L along with my morning C/L 25/100 at 8 a.m. I was very tired that day (only 3hrs of sleep, and obstructive sleep apnea) I called my HMO, Nurse, and Nurologist and they told me not to take my noon dose, and not to take my usual night-time CR higher dose. Felt better by the next day.
More and more, my short term memory and my ability to multi- task is non existent, but I am still exercising, going to my Parkinson’s exercise classes, starting at the gym, walking with my Guide Dog, Dashi for 2 mi a day, weather permitting, and I may be able to start the boxing class soon.
Still trying to keep a positive attitude, and hearing your videos assists me to keep doing whatever I can to be an active participant in this journey.
Take care. Best wishes to you and your family.
Debby Leung 😎and Guide, Dashi🦮 from San Leandro, CA
Hi Debby!, thanks for your update. Glad to hear you are getting around and going out for walks when you can. The boxing for me has been a great help for me. I couldn't recommend it more. Multi-tasking is very difficult for me as well. So glad you enjoy the videos, I love making them.😀😁😊
Dave - thanks for the entertaining video - the singing especially! Dystonia in my left leg (now my PD side) was my first symptom as well. Kept getting spasms and eventually had to go from a standard clutch to an automatic transmission in my car. Complained to my GP for years and she kept attributing it to spine stenosis and referring me to neurosurgeons. They kept saying the stenosis wasn't bad enough for surgery. Took 10 years and going around my GP to finally see a neurologist who immediately suggested Parkinson's. That was 3 years ago. My dystonia is worst when my levodopa is wearing off (taken every 3 hours). I find myofascial release in the form of rolling on a foam or PVC roller helps greatly. If done on a regular basis it helps break down the residual muscle tightness that results from so much continual cramping. Try tennis ball on the wall for shoulders or back. Learned I can't control the cramp/spasm, just how I feel afterwards. Seriously considering red light therapy, just waiting for more info.
Hello, so glad you enjoyed the singing, that was a fun episode to create. Thank goodness none of those neurosurgeons did any operations on you! I have had some write it who have had endured useless surgeries, especially on their legs because of PD symptoms. Gives me bad dreams. Red light therapy helps with my dystonia, but it also provides a host of others. Let me know if you have any questions about it or Rouge. You can email me at info@lifewithparkinsons.ca 😀😁😊
Thanks so much! I developed dystonia 12 years ago and now it's looking like I'm getting Parkinson's disease also. It's been hard getting diagnosed, so I appreciate that you are tying those 2 diseases together. I look forward to learn more from you.
Love your YT handle. I can understand the frustrating diagnosis, but hopefully you get the help you need. Thanks for watching, lots of older videos to check out😀😁😊
Good information and your humorous way of presenting ut made me smile. I have only had it in one foot so far. Cant imagine dealing with it in the arm as you talked about.
Thanks Sharon, I love to make people smile. It was freaky when the arm went up driving, I was like, what just happened. lol I can laugh now.😀😁😊
😂thank you! You’re educational and leave me with a smile.
Hi Don. Thank you so much 😃😊😀
Good one my friend ❤I just now, 7 years into my battle have dystonia. It occurs when I am off to my right foot. Very uncomfortable and has pain to it. Pd progression I guess. I will do a video on it tomorrow. ❤❤👊🏽
Thanks GoPro, I will watch out for your video. Thanks! 😊😁😀
My husband had that problem with his toes. I got him these silicone toe spacers and the pain and problem stopped. But he makes sure to never forget to put them between his big toe and second toe EVERYDAY!
I will have to look for those. Is there brand name?😊😁😀
@@LifewithParkinsons No brand name. They are on Amazon as just ‘silicone toe spacers’.
NatraCure Gel Separators & Bunion Spacers for Toe Alignment - Straighteners
Copy and paste this (for Canada it’s probably the same thing.
@@loriswitala6281 thanks
My wife is the one with PD and I feel so helpless trying to be her helping partner, I have viewed a podcast with Dr Shawn Baker and Mimi K Morgan, it fascinated me how carnivore diet helped Mimi reverse her multiple issues.
Hi Rob, I understand that feeling of helplessness because my wife Hayley has suffered from Endometriosis for 30+ years. I get where you are coming from. Be careful when looking for a solution for the PD, there is no silver bullet, there is no cure. I have gotten too many questions about the carnivore diet that I am going to put out a response video for that. There are many ways to get partial remedies to help mange the symptoms, please check out our sponsors www.lifewithparkinsons.ca/sponsors
Thanks for your comment😀😁😊
Rolling Stones cover band! Love it!
I was counting on you to notice!😀😁😊
Good job, good video. Take care sir.
Thank you so much, glad you enjoyed it.😀😁😊
I got the red light therapy for my husband…but I can’t get him to stick with it.
Hi Lori, sorry to hear that. I love my red light panel more than chocolate ice cream.😊😁😀
I have a question, has anyone ever tried “Earthing/Grounding“ and had a positive experience, that has Parkinson’s ?
Hi Kathy, been thinking about trying it.😀😁😊
I live in Mississauga on wherre are you from
I live in West Kelowna BC😀😁😊
Did you ever try carnivore diet with your Parkinson's issue?
Yes, does the Keto diet help ?
And how many years was it from your first tremor until you had to stop driving ?
Can you pass along how much exercise can help... See video at time 38:45 about exercise
th-cam.com/video/F4gTJyqy_J4/w-d-xo.htmlsi=NHwmQhyHM5SEpmML
THANK YOU for your videos, you rock!!!!
Hi Bruce, I stopped driving 6 years after my diagnosis. I exercise an hour per day at the moment, sometimes more. Exercise helps a lot, difficult to put a measurement on it, too scared to stop to see what happens. Videos will keep coming. Making a video soon about why I do not personally like the carnivore diet.😀😁😊
Hello, making a video soon about why I do not personally like the carnivore diet.😀😁😊
My hon dips into psychological weakness badly when he eats beef. He's the one with parkinsons. I, on the other hand, am an average protein eater and periodically really need that sirlloinburger to give me that sense that that workerman in my body is on the job, repairing stuff. I feel palpablly supported and helped. My hubs has some chicken and hotdogs and other stuff, but wants to lean into fish, i.e. salmon etc. Above all else, the scare engendered by the lows/weakness/brain affecting negativity he goes thru causes him to prefer smaller meals spread out throughout the day. It's a work in progress. No perfection here. We just like to join together and stay in the fight.
Hi Rose, so glad to hear that you and your hubs get along so well. He is very fortunate to have someone so supportive!😊😁😀
Have not experienced it yet, Thanks for info My Friend
No problem!😀😁😊