Ataxia

[retiree]

Does anyone have info about dr. Tom Clouse and his walking with ataxia program? He does tours in the US and maybe Europe? I think someone posted about dancing??? Can't remember who???

[Litty]

Oh yes! It is me. The original post was

healthunlocked.com/ataxia-u...

Dr Tom is lovely and we do email every few years to catch-up. I just found him by chance. Basically, you cannot do enough exercise. In theory great but I really have to make myself. I am definitely better when I do though. His website is walkingwithataxia.com

I am really lucky and go dancing (nearly every Saturday morning) for an hour. It is really good too for making me and my husband, spend some time together! His work is crazy. Debbie, our dance instructor, is really good and treats me just like everyone else, so we have only altered a few dance routines. I have always been slow, but once I get a dance, I can really do it. It is weird because I am better with the faster dances. I can tango, fox-trot, rumba, waltz and cha-cha-cha (my favourite). I have been going for about 5 years and we can just do them all in an hour. I am getting a bit slower and need to catch my breath in between dances more, but it is a real boost when I have been each week, that I can still do it. I am lucky being the girl because in theory Ian leads and so he does steer me if I loose it (not very often though).

Sorry it is a bit waffly and you will wish you had not started me! : )

[retiree in reply to Litty]

Thanks for info. No, you are not too waffly!!!

[David2015 in reply to Litty]

Tell me how you got starts in this dancing thing. I cannot accept that I cannot walk. I have always been a fast walker. I must walk and dance again, I do not want you to know my age! My husband and I loved to dance and we are really ready now yo go and dance and be together. Tell me what to do and who to see Please!

[silkwood]

Dr Clouse is very good for quite a while.Very inspirational certainly his Walking With Ataxia.

Jeannie on the Living With Ataxia site should be able to help. Think sadly my dancing days are over but I did enjoy a good frolic.

[retiree in reply to silkwood]

thank, i am in process of investigating his program.

[wobblybee]

Hi

Google - Dr Tom Clouse Walking with Ataxia.

He is held in high regard, particularly in the US.

I've read posts about him on Living with Ataxia.org

xB

[retiree in reply to wobblybee]

Thanks for your help.

[retiree]

I have seen Dr. Clouse and he has worked with me. His program works well. Read all of his website. Living with ataxia. Best wishes to you. I am a 72 year old female with mild SCA6 diagnosed almost 3 years ago after genetic testing.

Look at dr Clouse's schedule as he may be overseas next year although he has sessions in US.

[Litty]

Definitely try dancing. Until we started 5 years ago, I had never been. I can barely walk and use a rollator or wheelchair. My balance is dreadful but I can dance. We try to dance every week for an hour. You need to find a dance instructor who gives individual lesson but mine has no experience of neurological diseases.

My daughter filmed us for the doctors so if you want to see it here is the link

vimeo.com/146133270

It helps to have someone you trust to catch you if you fall : )