Hello everyone!
Does anyone with spinocerebellar ataxia 3 (or know of someone with this specific ataxia) that has tried out the Balancewear Vest? I am driving my mom down to the US next week and I'm hoping for a miracle here.
It will be hugely disappointing if she isn't even a candidate. So i was hoping someone could weigh in (hehe) on the matter.
Thanks!
The Balance wear vest was at the National Ataxia Foundation conference in Las Vegas and Detroit.
It got many trying it out
I saw alot of positive results
I am sure I have posted pics here too
Alan (Wales)
Never heard about Balancewear Vest , I am in Florida.
@ Alan can you post the link please
My husband has the cheap big 5 version (less than $50.00) and it really helps- he wears it a few hours a day. Its a bit bulky- the balancewear seems nicer but it was almost 800.00 not in our budget!
Dear Olive, Although I have cerebeller ataxia, it's not spinocerebellar. I do have a BalanceWear vest which for me, is helpful. It, by no means, has "cured" my ataxia, just helps me move and walk better. I also notice some "residual" effect when I take it off. Good luck to your mom...,hope it helps her! ;o)
I have SCA3 . . I live in London… I was in San Diego from last year Oct to March this year and went for assesment for a balance wear vest. … I think they should give you more time at your appointment for you to evaluate if it is any good… I wasn’t prepared to spend $800 dollars for a 45mins assessment.
I tried the vest while at physical therapy. It did see to help me feel "more grounded" and steady on my feet. However,it didn't make enough of a difference to make me want to get one.
here is the link http://www.motiontherapeutics.com/our-products/bw300-versatile-vest/
I have met Cindy at National Ataxia Foundation conferences
I do believe its better to spend $800 to find any difference
than to spend $30,000 on an Exoskeleton or surgical proceedures
only saying on aREALISTIC/PRACTICAL, level
I was mostly just wondering if it is used for her specific type. It's already a commitment to drive down to the US from Canada, and I was just hoping for some positive feedback about the product (which many people seem to have had).
It's worth the trip no matter what happens, as i would do anything to help her out and make progress. I guess i was just trying to count my chickens before the hatch.
Thanks everyone!
Your very welcome
> The patient is the Expert in their own Condition <
Alan
raredisease warrior Wales
I have a vest. I too opted for the cheap route spending less than $50.00. I find that when I can use it I too am more grounded. Its use is somewhat limited in that wearing the vest in the public arena such as a store, shopping mall I feel not a good idea. My imagination is that 'others' would freak out. The vest to me could be construed by others to be one the wearer may have a motivation to inflict harm.
I have SCA3, and just watched a video about the vest. It sounds promising, we never know what works until we try it. Good luck!
Also, when you have time please read my blog:
on my good response to Sinemet and other meds
I have sca3 and yes I wear the vest! It really works for me… I feel very comfortable wearing it about an hour a day two times per day! I brought my vest from Cindy Horn the designer and used it in physical therapy for about 8 sessions before purchasing one for myself. The change in my measurables were good enough for me to find value in owning it! …when Cindy fit me with mine I was excited and used it in a class that she was teaching so that other Phyical therapist could see my results. When I drove home my eyesight was improved and I noticed every road sign! I have mjd ataxia type 3 but I can walk and I don’t have really bad symptoms yet. I know it helped me but I would be cautious in calling it a miracle vest! Honestly it helped me feel stable and stopped the swaying of my torso! I wish your mom all the best and hope that it’s exactly the thing that helps her feel better. I think I mentioned that I was a volleyball coach and wearing the vest has given me the ability to continue coaching the sport I love. I am standing upright and so it’s a good thing for me.mwell worth the price tag! Kaiser insurance covers it but not many others. My insurance did not cover the balancewear vest! I hope this helps… Been using the best at home for 5 months and it works for me! Balancewear stabilizing garment is the one that I have.
Lynn
I was wondering if fitting the vest in Ontario Canada. I noticed someone in Victoria BC fitting the best.
We called the number on the website and were told there isn't anyone. so we're going to Fulton, NY which is just on the other side of lake ontario basically. it's a 4 hour drive for us, so it's not the worst option.
Thanks Lynn! I don't think insurance is going to cover this at all. we are from canada and going down to the US to get the vest, so I'm pretty sure we're on our own for cost. my mom was forced into retirement (was a nurse and became a "liability" to the hospital once she got her diagnosis), and she's been at home and not able to do much. she had a really bad tremor for a few years that led to her voluntarily giving in her drivers license. i know there is no miracle, i'm just hoping for a slight improvement in quality of life for her. she keeps as busy as she can, but it would be nice to have her be able to do more things she enjoys.
Lynn said:
I have sca3 and yes I wear the vest! It really works for me... I feel very comfortable wearing it about an hour a day two times per day! I brought my vest from Cindy Horn the designer and used it in physical therapy for about 8 sessions before purchasing one for myself. The change in my measurables were good enough for me to find value in owning it! ...when Cindy fit me with mine I was excited and used it in a class that she was teaching so that other Phyical therapist could see my results. When I drove home my eyesight was improved and I noticed every road sign! I have mjd ataxia type 3 but I can walk and I don't have really bad symptoms yet. I know it helped me but I would be cautious in calling it a miracle vest! Honestly it helped me feel stable and stopped the swaying of my torso! I wish your mom all the best and hope that it's exactly the thing that helps her feel better. I think I mentioned that I was a volleyball coach and wearing the vest has given me the ability to continue coaching the sport I love. I am standing upright and so it's a good thing for me.mwell worth the price tag! Kaiser insurance covers it but not many others. My insurance did not cover the balancewear vest! I hope this helps... Been using the best at home for 5 months and it works for me! Balancewear stabilizing garment is the one that I have.
Lynn
I have SCA3. I tried the vest and felt an amazing difference on that day. I purchased the BalanceWear vest and was fitted by someone different than the original woman and the weights were placed in different spots and she added more weight than originally. I tried it that way for a few days and initially saw a great difference (I was hanging curtains on a step stool with no assistance, when normally I wouldn't even dare or be trusted to do so!). Then I felt as if it was too "left heavy", so I need to schedule a new appointment with the therapist to fit me again. Please let me know how your mother makes out. It may only be a subtle difference, but if it helps her feel better with her balance then that's a great thing! I wish you lots of luck- keep me updated!
Thank you Netta!! Im so glad to hear about your positive experience! i will keep you updated!!
I am going to make an appt. with the therapist in Fulton NY for the balancewear vest as this is the closest to me as I live in Hamilton, ont Canada as well. What clinic are you going to olive
Hi Olive,
I have the Balance Wear Vest from Cindy she fitted me last March in Oakland California. Yes it was expensive I paid $1400 US for the vest and 2 sessions. I had to fly to Oakland from Canada has its not available here as of yet.
It seems to help people in different ways I don't know how to explain but it helps me for now the only draw back is that I will have to be have the weights re fitted which means that I will have to go to Oakland California to visit Cindy.
I love my Vest as it makes me more secure and confident in walking without aids and I wear mine every day for about 4 hours. It doesn't seem to work as well on me when I am tired.
Any improvement in taking care of SCA3 is a miracle and there are no side effects.
Hope this info helps!
Nana