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
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woodesden
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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)
Thank you for replying. I have SCA6 and realise that the vest is not a cure, but if it improves my quality of balance even a little, I'll give it a go. Thanks again - what you wrote is encouraging. All best wishes to you.
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.
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.
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
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