I have contacted the clinic in Denmark which appears to be the only European country which is supplying this American invention. I am very interested that it may help with my walking/balance problems due to SCA6. Has anyone tried this and can send comments please?
Woodesden
Hi ,I ordered one for my 13 year old son ,he has Friedrich 's ataxia,I ordered the OT VEST from the company who makes them in USA, Google OT VEST.
He does feel more steady when wearing it "not as wobbly" as he says
I would recommend it
Yes, I have a balancewear vest from the USA. I've had it for several years and although it's helpful for my balance, it's not a cure for my ataxia! But I'll take any help I can get...,ha! When wearing it, I find my dexterity is somewhat better, as well as I have some residual effect when I take it off. Everyone is different and I hope it's helpful for you! My best to you...,;o)
Because I could not travel and get one of the vests I bought an exercise weighted vest that I think helps. I get too warm wearing it though so need winter to try it properlyx
Thank you to everyone for their comments on the balance vest - much appreciated. Weighing everything up I have decided to "go for it" it may or may not work for me, but I want to at least try. Not a cure or a miracle aid, but it might just improve my quality of life even a little. I'll never know if I don't try.
Woodesden
Thanks for sharing the information about this balance vest. I have a 9 years old daughter with Friedreich Ataxia. I think it can help improving her quality of life.
Claudinei, from Brazil.
Dear Claudine,
I liked the clinic fitting very much; a lot of trouble was taken with placement of weights. I actually walked down a corridor just lightly holding my husband's hand. Since returning from the Danish clinic I have only been wearing it for one hour each morning and afternoon as recommended. I do not yet feel confident enough to let go of my rollator, but I hope that with practice this will improve. I feel very secure in the vest, but it does get rather hot wearing it.
I'm glad that I "went for it". I think it works differently probably for different people. I'll persevere, but no miracles yet, which I wasn't really expecting.
Hope that this helps.
Woodesden
What happened with the vest? Did you buy one? Which one and does it help?? Thanx N
Dear Neta,
I refer you to my reply to Claudine. I hope my comments are helpful.
Woodesden
Hi Neta,
Reason for delay in posting was because I had to wait for an appointment at the Danish end. I returned about two weeks ago. As posted to Claudine, I wear the jacket for about one hour a.m. and one hour p.m.
We had to fly to Copenhagen, collect a hire car and drive to the clinic some 20 mins north. With cost of flights, car hire, clinic fees plus cost of jacket this was not a cheap venture and we are very lucky to have enough savings to cover. I suggest that, if you are interested, you explore all channels for weighted vests. I am still accustom ing myself to it and still a bit nervous to let go of my rollator, but I am very glad I am trying. Woodesden
Thanx 4 your reply of a while ago. Anything new?? What is the phone number of the danish clinic?
walking and balance
Balance issues
Thinking to try balance wear
Severe balance problems
