Pain Management for Dystonia with Dr. David Grimes
Disclaimer: DMRF Canada is not recommending any specific course of treatment. Any new or experimental treatment mentioned in the video may still be relatively new or exploratory at this time. A reminder to please speak with your Movement Disorder Specialist about any course of treatment to ensure it is right for you.
The mission of the Dystonia Medical Research Foundation Canada (DMRFC) is to advance research for more treatments and ultimately a cure for dystonia, a neurological movement disorder. We also work to promote awareness and education and to support the needs and well-being of affected individuals and families. DMRFC is a registered non-profit Canadian charity governed by a volunteer Board of Directors. Visit www.dystoniacanada.org for additional details on the various forms of dystonia, and how you can get support.
In this webinar, we will be exploring the topic of pain management for dystonia, including information on tools for self-management, and an update on treatments for motor and non-motor symptoms. A special thank you to Allergan, an Abbvie Company, for supporting this webinar.
To contact us, email: info@dystoniacanada.org
Music: Bread (prod. by Lukrembo)
I have found that nidra yoga has helped me immensely not only with pain management but also with my well being including sleep and mental health. I feel that once I find the right meditative state of mind, my body begins to instinctively correct the dysfunctional parts affected by dystonia with deep stretches. I generally hold a pose until I feel my muscles release. I still get botox and an epidural but I limit muscle relaxers when I can due to their long term use effect on memory and dementia. Sure there are days where nothing touches my pain, but so far those are limited to a 3 day maximum and not frequent. I have cervical dystonia so while I do enjoy a sun salutation, I cannot close my eyes while standing, so my postures are all mostly done sitting, supine, and prone. I am a firm believer in the body's ability to bring itself back to center and nidra yoga is what works best for me and my pain management.
Very beautiful 😊Thank you for sharing my friend👏
Thanks, very informative.
I have very severe generalized dystonia that came out after a bad car accident. This disease is so mysterious. It crippled my whole body, leaving me with little feeling and function after enough time. Eventually I was just consciousness floating across a room, no sense of connection to my body. Ive been using neuroplastic principals to learn new ways to contract my muscles and am find as I do, I forget the damaged pathways! Over time I’ve learned that I can do the things my brain says are impossible and I started weightlifting again. Movements were pretty sloppy at first but very quickly more and more of my body is learning to work together in an organized way. Strengthening the pathway to contract the muscle actually helps me find the circuit to get it to release. After about 6 months of intense self rehab my disease has changed. Im stronger than the dystonia. Voluntary movement now causes dysfunctional muscles to release so the more I use my body the better it works now! Im not sure how far this will go but I have so much control over this disease now I’d be very shocked if I don’t make a full recovery! The biggest thing making recovery possible is definitely marijuana. I used it to treat the symptoms daily for years but noticed the more I used the better the dystonia was. I went up to very high doses around the clock and over several months my pain levels got lower and lower until I could attemp to contract my muscles, from there recovery got real easy. Its like the THC makes it harder to remember the way I used to do things which is great cuz all those nerves are fried. I want to add that I saw over 12 doctors and two hospital teams with no improvement. Many of these doctors acted like marijuana use was a problem. If I would have listened to them I’d be using a wheelchair. None of these doctors will ever know the truth because they make it to hard to be their patient. These doctors aren’t seeing the miraculous recovery Im making and will continue to tell patients they just have to hurt. Hopefully more studies and will give us some wisdom on how to give dystonia patients a better life.
Did you try CBD ? (I m french, sorry for my english)
@@juliettelecam3213 had very good success with CBD before I got a grip on the condition. Topical CBD works better than any meds I ever took. Ps I’ve been able to put most of my symptoms into remission used psychedelic therapy, meditation, exercise, yoga, and playing music. There is apparently a much better life to be had with dystonia than doctors seem to know about. I’m not special I just ran out of mon get to go to appointments lol. Wishing you the very best in 2024 😊
@@macintoshimann9892 is it possible to write an another plateforme , that would allow me to translate more easey ? 🤓
@@juliettelecam3213 yes definitely 😃 do you use either Reddit or discord by chance?
Why all neurologs love tell what is dystonia but no provide or no research solutions for that ? Some people talks about thiamine, others about TMP problems...