Dystonia Treatments and Therapies

Just a kind FYI: it’s spelled cerebral, and said, phonetically as “sur-ree-brawl”. Sar-a-brull” is not a word. I am in no way trying to be mean nor trying to insult you. I come from pure kindness and respect 🌹Also, I am grateful for your videos and the respect the time you spend educating others 🌹

Thank you for your video. I have had ST for 35 years, starting out with a variety of nasty meds, accupuncture, deep tissue therapy (WONDERFUL if you can find a therapist with very an aggressive therapeutic touch), and finally Botox every 3 months. The Botox is my go-to treatment.....I have learned to live with movements and some discomfort.....the ST does not define me and I have found that just living my life with everything that has been thrown my way is something I can indeed handle. I love life.

I am almost exactly like Tom. He's the best informed patient I've seen. Excellent work. He understands the disorder and dealing with it.

Tom, You have been a great resource for me since I was diagnosed with CD. Particularly your book. I found out I had been taking an over-the-counter sleep aid that could be responsible for starting my Dystonia. The Dystonia Foundation has a list of medications that can do this. I weaned myself off of the medication (I had been taking for years) and within six months, my Dystonia no longer needed treatment (Botox). My neurologist sadly, seemed unimpressed. While I still have a slight head tremor, I’ve been free of symptoms for years now. Not the answer for everyone, but worth exploring for everyone. I also have Ataxia from Celiac Disease. Thank you for continuing to be a great educator for Dystonia.

This information gives me renewed hope. Today in an email with my doctor she referred to my case as "only focal dystonia ". Then proceeded to tell me my hands not working together wasn't because of my dystonia . So nice to think I have to explain this one to. I have 3 Autoimmune disorders that are ONLY autoimmune . Fun in a post covid world

I've come from hoof trimming to pimple popping, now I'm here! I should've come here first. Thanks for the info.

I’m so glad I recently found your channel - I’ll be watching them all - thank you 🙏🏻

Thank you Tom for sharing all of the hard work and research you share with us. Gary

@Tom thank you for sharing your wisom and experiences with Cervical Dystonia! I have your book and so appreciate hoe thorough it is. I have been navigating cervical dystonia for 7 years and have learned so much over the years. So grateful for you and all those who have gone before us and all the research that is being done now to help those navigating dystonia! In gratitude 🙏🏽

Thank you, Tom.

Great job Tom I forwarded your video to my Physiotherapist she is a great heip, she appreciates your info. thanks Tom

Many thanks for your very helpful video, I have Parkinsons as well as cervical Dystonia and spinal stenosis so having a much better understanding of Dystonia is really useful. Thanks again

Thanks, Tom! I’ve been anxiously awaiting this video. My big takeaway is that it has inspired me to reread your book Diagnosis Dystonia Navigating the Journey. It seems like I need constant reminders of the things I can do to manage my Dystonia, especially taking time out of my day for me. Thank you for your hard work helping others. I for sure will contact you when I’m ready for more questions. Your video helped answer some of them!

Thanks Tom!

Excellent presentation. Thank you 😊

I've had laryngeal dystonia for many years, over the past year I've had signs of cervical dystonia but over the last few weeks it got much worse, now I'm nearly always postured identically to how you looked in your pictures, and the pain is unbelievable. Thanks for posting this video, it makes me feel less alone if anything.

Wish you all the best. Great idea to do a video to help others and to educate the public at large.

This is such a comprehensive, excellent information for this debilitating issue. One of my dear friends has this condition which has in his case affected his speech. You speak very fluently. At least you can express yourself. Thank you for your help.

Wow Tom! You've hit so many points spot on! Towards the end of the video when you stated you are not cured by any means and how you have instituted changes in your life, made me so sad for you, yet here you are, trying to help others with this awful condition. I look forward to watching many more of your videos, you are an amazing man giving us straight up answers and giving all of us hope, thank you so much!

Liked this very much!!!