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DMRF Canada
Canada
Registrace 27. 04. 2017
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 movment 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.
To contact us email: info@dystoniacanada.org
Facebook: DMRFC
Twitter: dystonia_canada
Linkedin: www.linkedin.com/company/dystonia-medical-research-foundation-canada
Visit www.dystoniacanada.org for additional details on the various forms of dystonia, and how you can get support.
To contact us email: info@dystoniacanada.org
Facebook: DMRFC
Twitter: dystonia_canada
Linkedin: www.linkedin.com/company/dystonia-medical-research-foundation-canada
Freedom To Move: Run, Walk and Wheel for Dystonia 2024 Race Highlights
This year, Freedom to Move included an in-person event in Toronto and a month-long virtual event, with over 110 participants from 31 cities across Canada coming together to support individuals with dystonia.
Thanks to the generosity of our participants and supporters, we have raised $50,000, reaching our fundraising goal! The funds raised will support vital dystonia research and programs benefiting the 50,000 Canadians living with dystonia and their families.
To contact us email: info@dystoniacanada.org
Thanks to the generosity of our participants and supporters, we have raised $50,000, reaching our fundraising goal! The funds raised will support vital dystonia research and programs benefiting the 50,000 Canadians living with dystonia and their families.
To contact us email: info@dystoniacanada.org
zhlédnutí: 23
Video
Freedom To Move: Run, Walk and Wheel for Dystonia 2023 Race Highlights
zhlédnutí 129Před rokem
Thanks to the incredible support from our participants, donors, and sponsors, we are breaking barriers and changing lives! This year’s Freedom to Move: Run, Walk, and Wheel for Dystonia raised over $50,000! Together, we are empowering 50,000 Canadians to live better with dystonia. YOUR support will help fuel research for better treatments and a cure for dystonia. P.S. Help us improve future eve...
Swimming with Dystonia Webinar
zhlédnutí 245Před rokem
On May 6, 2023, DMRF Canada hosted a virtual informational session with Swimming Canada on the benefits of swimming for people with dystonia. This virtual session provides information to anyone with an interest in swimming at any level, be it leisure or competitive, or learning about the experiences of elite athletes. A reminder to please speak with your Movement Disorder Specialist about any a...
Sarah Anderson - 2022 NHCC Changemaker Award
zhlédnutí 137Před rokem
Congratulations to Sarah Anderson of Winnipeg, MB on her incredible achievement of being named the 2022 NHCC Changemaker Award! Sarah's advocacy has shed light on the challenges faced by individuals living with dystonia and disabilities. Her courage and commitment are an inspiration to us all! Checkout Sarah’s story on www.dystoniacanada.org/sarahanderson
Beyond Dystonia: Are We Detecting and Managing Non-Motor Symptoms Properly?
zhlédnutí 577Před 2 lety
Dr. Davide Martino presents findings on non motor symptom in patients with dystonia with a focus on understanding the clinical spectrum, how to detect them and how best to manage them. Dr. Martino is the Movement Disorder Technologist and Program Director of the Movement Disorder Clinical Program at the University of Calgary. The mission of the Dystonia Medical Research Foundation Canada (DMRFC...
Freedom to Move: Run, Walk & Wheel for Dystonia 2022 Race Highlights
zhlédnutí 149Před 2 lety
Close to 170 participants across 33 cities participated in the 2022 Freedom to Move, raising almost $70,000 for research and support programs that will benefit the 50,000 Canadians living with dystonia. Thank you for your outstanding support of Freedom to Move and your commitment to improving the lives of those living with dystonia. We look forward to “moving” with you again next year! Backgrou...
From Awareness to Empowerment: Navigating Mental Health with a Neurological Condition
zhlédnutí 166Před 2 lety
Registered psychotherapist Kristen Drozda, presents on navigating mental health with a neurological disorder, sharing how to better navigate your diagnosis and mental health in terms of understanding it as a group of symptoms rather than a one meaning label, how stress influences pain and the tools to manage the stress, pain, and mental health dystonia patients may be living with. Disclaimer: D...
Living with Dystonia: Blepharospasm/Meige's Syndrome Webinar with Dr. Chouinard
zhlédnutí 1,3KPřed 2 lety
Thank you to Benign Essential Blepharospasm Canadian Research Foundation (BEBCRF). 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 movment disorder. We also work to promote awareness and education; and to support the needs and well being of affected individuals and families. DMRF...
More Than Twisting: An In-Depth Look at the Non-Motor Symptoms of Dystonia with Dr. Davide Martino
zhlédnutí 886Před 2 lety
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. DMRF Canada is pleased to present another webinar in our Living Well Webinar S...
Cervical Dystonia Dr Gordon Ko
zhlédnutí 1,2KPřed 2 lety
DMRF Canada thanks Dr. Gordon Ko and AbbVie Canada for sharing this video for the benefit of the dystonia community. Please note: Always 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 ne...
Freedom to Move: Run, Walk and Wheel for Dystonia 2021
zhlédnutí 224Před 2 lety
Thanks to your support of Freedom to Move: Run, Walk and Wheel for Dystonia 2021, DMRF Canada was able to raise close to $70,000 and the event drew in close to 200 participants. Our thanks to everyone for your incredible support of this virtual event. The mission of the Dystonia Medical Research Foundation Canada (DMRFC) is to advance research for more treatments and ultimately a cure for dysto...
Navigating your Mental Health and Well-Being Webinar Session with Mike Stroh
zhlédnutí 117Před 3 lety
Disclaimer: DMRF Canada is not recommending any specific course of treatment. A reminder to please speak with your general practitioner about your mental health and any course of treatment to ensure it is right for you In this session, we are joined by Mike Stroh, Founder & Director, of Starts with Me. Mike is a mental health advocate, speaker, and educator who is passionate about mental healt...
Pain Management for Dystonia with Dr. David Grimes
zhlédnutí 2,4KPřed 3 lety
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 a...
Making the Most of Your Visit with your Movement Disorder Specialist with Dr. Dung Nguyen
zhlédnutí 697Před 3 lety
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. With limited time and a pandemic - every second with your specialist is valuab...
Explorer les nouveautés concernant les traitements de la dystonie avec Dr Sylvain Chouinard
zhlédnutí 2,2KPřed 3 lety
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. Avis de non-responsabilité: DMRF Canada ne recommande aucun traitement spécifi...
Understanding Cervical Dystonia with Dr. Rizek
zhlédnutí 5KPřed 3 lety
Understanding Cervical Dystonia with Dr. Rizek
Treating Dystonia: What I've Learned So Far with Dr. Fasano
zhlédnutí 3,7KPřed 3 lety
Treating Dystonia: What I've Learned So Far with Dr. Fasano
DMRF Canada Presents: Understanding and Treating Focal Dystonias with Dr. Kanungo
zhlédnutí 2,6KPřed 3 lety
DMRF Canada Presents: Understanding and Treating Focal Dystonias with Dr. Kanungo
Dystonia: What's New - webinar with Dr. Janis Miyasaki
zhlédnutí 4,1KPřed 3 lety
Dystonia: What's New - webinar with Dr. Janis Miyasaki
Yogatonia (Modified Yoga for People with Dystonia) - August 8, 2020
zhlédnutí 1KPřed 4 lety
Yogatonia (Modified Yoga for People with Dystonia) - August 8, 2020
Yogatonia (Modified Yoga for People with Dystonia) - July 25, 2020
zhlédnutí 1,5KPřed 4 lety
Yogatonia (Modified Yoga for People with Dystonia) - July 25, 2020
Dystonia and Pain Webinar - July 21, 2020
zhlédnutí 2,8KPřed 4 lety
Dystonia and Pain Webinar - July 21, 2020
Yogatonia (Modified Yoga for People with Dystonia) - July 11, 2020
zhlédnutí 982Před 4 lety
Yogatonia (Modified Yoga for People with Dystonia) - July 11, 2020
Highlights of Chuck’s Virtual 5KM Run, Walk and Wheel for Dystonia 2020
zhlédnutí 174Před 4 lety
Highlights of Chuck’s Virtual 5KM Run, Walk and Wheel for Dystonia 2020
Yogatonia (Modified Yoga for People with Dystonia) - June 27, 2020
zhlédnutí 6KPřed 4 lety
Yogatonia (Modified Yoga for People with Dystonia) - June 27, 2020
Thank you message on behalf of the Saundercook family
zhlédnutí 32Před 4 lety
Thank you message on behalf of the Saundercook family
Dystonia and Sleep Webinar - June, 2020
zhlédnutí 2,8KPřed 4 lety
Dystonia and Sleep Webinar - June, 2020
Thank you! Dystopia is a symptom resulting from my MS. Thank you for helping describe why I'm so clumsy. I'm NOT. I can't help it. I wish you well❤
This is amazing! Thank you for sharing your stories! May I ask what the woman's name is? The one who participated in ironman?
Ich habe das auch seit 5 jahre...bei mir ist auch nicht schlim aber keine normales leben... Ich habe gehort das es kiefer schiff sein kann ...ich mache eine kontrolle ... 2 jahre botox will ich nicnt mehr
Thank you for this information. Very informative!
My sister in inda has this issue, how can she join this group
Thank you so much ✨🙏
thank you I hope this gets somewhere, I have Fibromyalgia diagnosed back in '93 and was diagnosed in 2019, which came about after an injury (slip and almost fell windmilled my arms and caught myself) in May of that year and was in "full blown" cervicall dystonia as well as generalized. My question is whether there is a correlation between the 2?
Is there a correlation between Fibromyalgia and Dystonia?
Thanks a lot ❤
Bonjour Docteur, Je vous remercie de votre présentation. En raison de réactions médicamenteuses atypiques, la toxine botulique ne peut être utilisée. Le praticien qui me suit a eu l’idée d’utiliser la PRP sans effets secondaires. Les résultats sont bons. Petit retour de Suisse.
You got anymore of these ? There really helpful
I just wanna say thank you.
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I don't want to watch..the title to me is click bait.. I'm sure you'd say along this over hour talk consult a dr or whatever but i am at the point wfere I'm not even allowed or capable of ot/st/pt..with various meds abd cannabis... I'm broken beyond repair.
I have cervical dystonia and Cerebral Palsy...should I do this video everyday or how often?
I think having Dystonia is definately affecting my sleep now on sleep machine but I'm still jumping
57:10 in relation to Congenital Hydrocephalus what do you think...?
I'm bed ridden and mute can't eat the oxygen generator too because of so much Spasticity... it's believed I have mitochondrial disease that ties Dystonia with my other conditions...
Iam frm the Philippines, i was diagnoses with dystonia at the age of 66, i had a twisted neck and had 2 sessions of botox injections but unforrunately it does'nt work...i do mild exercise to lessen the pain in the neck and shoulder
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.
This video has inspired me. I started swimming again because I read it was helpful for Cervical Dystonia. But the fact that all of these ppl compete and knowing they have Dystonia is really keeping my spirits up. Thank you!
Merci beaucoup pour ces informations ✨
i'm lrning that some dystonia is dopa responsive
I appreciate this. After a bad storm last year the doctor that I followed up with decided my dystonia was actually anxiety and recommended spiritual practices and talk therapy for it. The place I got therapy at had a yoga group start and I joined, was pretty excited cuz I’d had great success getting weightlifting and running back and lots of better function. Yoga sadly seems to deliver an hour of pain and frustration followed by worse motor control for hours or days after. I walk in fine and walk out like a crippled old man. That yoga doesn’t offer me any benefits actually surprised me. I know when I’m weightlifting my brain is using the weights as a reference for which way gravity is going. Running, I think I just have so many awesome memories of my body goes right into feeling awesome and there’s plenty dopamine to run the process. Not yoga tho. I also benefit greatly from daily meditation but sometimes this can be a double edged sword depending on my mood. Sometimes a mindfulness walk does me a lot more good, bringing my mind to the physical world instead of just amplifying insane feelings into even scarier monsters in my mind. I think dystonia is one of those things that’s just very specific depending on who you are. No matter how open minded I try to be, trying to do yoga just makes me feel truly awful, like trying to fix it with rehab or chiropractic care. Just more pain.
If you would STOP with the stupid music we could understand what the fuck these people are saying.
When I get together with my dystonia support group, I don’t feel alone anymore. We look at ourselves as special . I feel God knew we could face any challenges life throws at us. People who suffer from any chronic illness, embrace it with courage and pride knowing we appreciate every moment of our lives.
I have Cervical Dystonia. 23 years now. first diagnosed 23 years ago, age 29... No one/Docs really knew what it was. I suffered for years. And I still suffer... I get Botox now. Doesn't work...maybe for the first 15 minutes.
I could relate to always being asked are you cold? I just answer yes
I feel them. It took me like two years of me pushing doctors to diagnose me. It was so dark and emotional and painful. In my case was oromandibular, but affecting also my face and head. I couldn’t eat or speak. In my case Botox and Xanax saved my life. And a very understanding doctor at Stanford.
i started having bad tremors after a bad car wreck. Its been hell for me.I cried constantly. I always get people asking if im cold if i need help the stares. Doctors confused as too whats wrong with me. it freaking sucks and i hate it.I cant do any kind of activities like i use too.i cant dance anymore or take a walk in the park and more. I need prayer and strength to learn how to deal with this.
I developed generalized Dystonia from an antidepressant after I had a cardiac arrest and stroke. I was never informed about the side effects. They just called it the happy pill. I would have never taken that particular medication 😢 due to the issues I still can’t walk without a walker and assistance. I guess covid19 restrictions halted my therapy as well 😞
Hi what anti depressant were you on?
Marvelous 👑👑👑 I NEEDED THIS 🌷🌷🌷 I HAVE GENERAL DYSTONIA...
Dystonia is a side effect of using antipsychotic
But now in my mouth. What to do
Now my movement is control
I have cervical distonia
1:20,000 Damm that is unlucky
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.
I've just started your yoga techniques. Really good; also, relieves my cervical dystonia condition slot. I was diagnosed with cervical dystonia 22 years' ago at Ross hall hospital in Glasgow. Since then I've noticed a slow deterioration of the condition as the years progressed. Your yoga certainly helps! Thank you William cannon
Im so glad my Grandma got to see me doing this stuff like a healthy person again! It really is possible!
I didn't have to go out to find humiliation, just a visit to the dystonia AGM. It was way back in the days when it was held at the LSE in London. I had a slot to speak. The man with the microphone wanted to hold it whilst I spoke, but i needed to hold it myself in order to control things, and after a while I got my way. Sadly I had become stressed and my speech was all wrong, confusion set in giving rise to a silly mixed question to the board of experts. This caused huge laughter from all present. I was humiliated, embarrassed and ashamed, the same feelings that had caused me to resign from work and shy away from society. I was so self aware and shaky, I left the room, never to return, and that's from people who should know better. I don't think anyone there had a clue of the hurt they had caused me, things I get most days of the week at work and elsewhere. I got my train home thoroughly depressed.
Yet so many people needLESSly pop meds that can cause this. They don't think this will happen to them and their docs are not very forthcoming. They just want to push pills. Should be criminal. A very small percentage need meds. The rest is for greed and profit.
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...
Hi , I am so happy to find you here!!! I have cervical destonya🙌✨my neck is tilted left, rotates right... So you do private sessions? please, let me know you are so good❤️🙏❤️
Thank sir i have also XDP
I wish there was more help...
😀 p̾r̾o̾m̾o̾s̾m̾
sou Brasileiro, tenho distonia também, é muito ruim, obrigado pelo conteúdo
So no dopamine drops signals and that is only. Related to low mood. I got tardive dyskinesia after treated for bipolar Never ever insomnia.goofy dog doc! Us is passing help out and lost to my opinion spirit orientation.usa may have 50/50 rich women drugged up to get over getting old. HIPPA a safe info container means NO tracking. 62 and tongue and neck jerks and swaying. Took Zyrexxa and suspect like Parkinson,