I am 54 and have SCA7 since I was 48. Balance is my main problem in SCA7. I was impressed with BBTW.. Does anybody knows anything about that? Please see
http://www.motiontherapeutics.com/medical-professionals/what-is-bbtw/
https://www.youtube.com/watch?v=qSVlEtGSlak
Thanks,
Ana
thanks for the information! it sounds potentially very helpful and I would pursue if I were you. I have used a weighted vest for years for the calming effect. I had to stop because it threw me slightly off balance. there were no rear pockets in the fishing vest ... but I could add one I guess. IMHO this would be a great help to some and not to others so get evaluated if you can.
No hadnt seen that before but looks good… I use wii fit and passive peddler for exercising at home.
I am 71 and like you, my ataxia was ‘triggered’ midlife [in my 50’s]
I dont find neurophysios are interested in people my age … they prefer to work with rehab… my neurologist has written a couple of letters to neur physio asking her to contact me but it doesnt happen.
I cant be bothered to chase it up as I am happy to manage my condition myself at home.
Patsy
I do tai chi and use a treadmill and exercise bike regularly. I also attend hydrotherapy. Since I have been doing these things balance has improved a little, and walking outside the house isn't such an exercises in concentration. We all have to find what works for us, don't we.
I am 66 and was diagnosed at 64 with progressive ataxia. I purchased the Balance Wear Vest in Dec. 2013 for $750 out of pocket. It was okay at first but does not work at all now. Guess I should go back to get the weights readjusted. To tell you the truth it never did the trick without using a walker. How did you find out you had SCA7? My. Dr told me it was not necessary to find out and would cost a lot of money. I have Medicare and Blue Cross, will they cover it? Sorry if I am I take so long to respond but my motor skills are weak so it makes it hard to type. I am in speech therapy and can't write at all. Fun..fun...fun! I hate this disease! Gizzie
Greetings Ana! I am 59 and have hereditary cerebellar degeneration and live in Virginia. Yesterday evening I returned from Kentucky with my custom made Balance Wear vest. I should inform you that not everyone benefits from this device, but my vest is going to change my life positively. Today, my 1st day wearing my vest, I am walking throughout my house without the usual holding of furniture. I am walking over slightly raised thresholds while making 90 degree turns! Motion therapeutics has been wonderful to work with and I couldn’t be happier. Research this company on-line and decide for yourself if you should pursue this. I will always be thankful for having found BBTW. Joyce
Hola, tengo 67 años y hace 2 años tengo ataxia cerebelosa de origen desconocido y estoy en tratamiento con mi neuróloga desde ese momento de diagnostico
Muchas gracias por la información. Voy a consultar en mi país, Argentina, donde recurrir por este chaleco.
Cariños a todos,
Dear Anna, I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) eleven years ago, although thinking back, I had small symptoms starting about 8 years before diagnosis. I've had a BalanceWear Vest for about two years now. It improves my gait/balance (my husband says I walk more normally while wearing it) and dexterity (writing/printing/fine motor skills). I only have 2 1/4 LBS of weight velcroed at certain places most helpful to me, inside. It's black, made out of a lightweight material and zips up the front My only complaint is it tends to be a bit warm in the Summer months. Other than that, I LOVE it! ;o)
Hi My name is Donna I have SCA type unknown I do have a balance wear vest and find it very beneficial. I would defenately get one I don't know where you're from but you can call the people on the website and they will direct you to the nearest certified therapist. I traveled three hours to get mine but it was worth it. It doesn't make you prima balerina but it sure helps you to walk better. as your body changes or the ataxia progresses you do have to be reevaluated. Call your neurologist after you have found the physical therapist and they should get you the paperwork needed. It is covered by medicare.
Thanks for the answer! I live in Brazil and sent an e-mail to that site (BBTW). They are not in Brazil. Each vest should be fitted for each person.
Ana
KarmenElectriK said:
thanks for the information! it sounds potentially very helpful and I would pursue if I were you. I have used a weighted vest for years for the calming effect. I had to stop because it threw me slightly off balance. there were no rear pockets in the fishing vest ... but I could add one I guess. IMHO this would be a great help to some and not to others so get evaluated if you can.
I know my post won't be so popular but I have to be honest here. I have seen and heard allot about the vest. Although it might help physiologically and therefore some physically we still need to move more, exercise weather we want to or not and that's the bottom line here. It's a tool, or something to physic us into exercising or just moving much more. I've also heard the effects it don't last that long as though it's a good idea to have a magic pill. My thought is people can do the same with Velcro weights and learning to exercise even slightly on their own by pushing themselves. That's the key no matter what gets us there right?! This is expensive tool I think!
Holla Juanna,
Yo vivo en Brasil y envié un email a David, de California (BBTW site), acerca de BBTW. Pero ellos no están em Brasil. La vestimenta es especifica para cada uno. No llegó en Brasil. Pero creo que es uma vestimenta que ayudará bastante.
Ana
Juanma said:
Hola, tengo 67 años y hace 2 años tengo ataxia cerebelosa de origen desconocido y estoy en tratamiento con mi neuróloga desde ese momento de diagnostico
Muchas gracias por la información. Voy a consultar en mi país, Argentina, donde recurrir por este chaleco.
Cariños a todos,
gizzzie said:
I am 66 and was diagnosed at 64 with progressive ataxia. I purchased the Balance Wear Vest in Dec. 2013 for $750 out of pocket. It was okay at first but does not work at all now. Guess I should go back to get the weights readjusted. To tell you the truth it never did the trick without using a walker. How did you find out you had SCA7? My. Dr told me it was not necessary to find out and would cost a lot of money. I have Medicare and Blue Cross, will they cover it? Sorry if I am I take so long to respond but my motor skills are weak so it makes it hard to type. I am in speech therapy and can't write at all. Fun..fun...fun! I hate this disease! Gizzie
Hi,
Thanks for the answer. About sca7, I took part in a research from Imperial College in London. I am part of a big family in Brazil who has this disease. In 1998 I had the positive result for sca7 in a DNA test. I live in Brazil and can not buy the vest, because the company has no representation here! Ana
Hi everyone!ve
Thanks for the answers. I think the vest will be helpfull. However, they don't sell it in Brazil, where I live... Ana
Dear Jeannie, I agree with you! Although I have a vest, I do exercises for strength and balance, as well as stretching and pleasure walking with my Access Active Rollator. My neurologist has always told me to be as active, safely, as possible (easy for him to say...,ha! No, it's not "easy" but nothing worthwhile is! I've also lost 25 LBS and still have 25 more to go, as the lighter I am, the better I can move! The vest helps me with balance. but exercise is the end to it all! ;o)
Yo vivo en Argentina, no en Brasil.
Yo lo sabia. Tu dijiste en tu primero e-mail. No hay BBTW in Brasil. Es esso que me gustaria decir,, solamente eso..
Juanma said:
Yo vivo en Argentina, no en Brasil.