Hi SCA6 Network members,
I hope you all are well. I just received the below message from Dr. Tom Clouse who some of you may know. He has uploaded his exercise videos onto YouTube and is offering them for free. I live in FL with him and had the opportunity to discuss his book (Reclaiming Natural Movement) with him over lunch and later bought his book. He has an incredible and, to me, impressive, personal story of endurance, hope and activism. My knowledge about what exercises, physicla therapy work best are limited and I think Dr. Gomez has recommended things like yoga, tai chi or whatever keeps you going. The neat thing is that what Dr. Clouse has figured out seems to have worked for himself and he has also helped others, but it does require effort and I'm not going to go as far as saying that i know whether it works better than other things you might be doing. I am passing it along so you can try for yourself and see if it it helps you in any way. Even if it inspires you to keep doing what you are doing. I think there is something to say for learning to compensate for the cerebellar loss with training of other parts of the brain. Dr. Clouse does not really make any claims about why his exercises work though, he more says that he retaught himself to do things better, like walking without support, with concious effort. Anyway, he must be smart to have gone from a humble upbringing to getting into and through medical school and surgical residency (one of the hardest and most grueling) to practice as surgeon before getting diagnosed with SCA. Helping people with neurodegenerative disease is his "2nd career" or "new calling" and I appreciate him, his grit, and his free sharing of his You Tube videos. His book is comprehensive and long, for better or worse, and these videos might really help bring the exercises and what he has learned over the years form himself and people he has coached to life.
Best wishes,
Terry
Message from Dr. Clouse:
"Hello everyone,
I just completed uploading all the instructional videos (42) that I currently have to my new YouTube channel. I made these videos specifically for people with a neurodegenerative disorder/movement impairment - which is what I have as well. The access to them is completely free.
There is a wealth of information in these videos, and all of it is on a practical and user friendly level. All of it is what I learned in helping myself, and what I taught to the people I worked with in the United States and Internationally. So, to the people with these issues, please review these videos and learn how you DO have the ability to improve your movements - as I have improved mine.
I would sincerely appreciate everyone's support by simply going onto the channel, watching some of the videos, and clicking the like and subscribe buttons. I recently learned that this is the way YouTube ranks the "value" of the content, and limits the activity if there are not enough people interested/following it.
Also, please forward this link and information to everyone and anyone, so more of the people around the world who really need it have a better opportunity to find access to it.
https://www.youtube.com/channel/UCoNYUy6e8IYEBETasevaFdg
Thank you so much.
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