Hello fellow Ataxians. I was diagnosed with Cerebellar Ataxia 20 years ago. Since my diagnosis, I lost my husband to cancer, sold our home and moved into a condo. One of my neighbors noticed my balance issues. She made it her mission to find an aid to help me. On the Internet, she came across the Balancewear Vest.
I live in Massachusetts and the closest person who could evaluate me was in Connecticut. We drove down and after I was evaluated, I had to return to pick up my vest. I have worn for 2 weeks. When I walk with my Rollator outside, neighbors regularly comment on my “looking good” gait. It is also helping with my slurring. I am so very happy with my results. Even a 10% difference is a miracle. My name is Sue, my email is ■■■■■■■■■■■■■■■■■■■. You can contact me directly for more information. Medicare will cover some of the $500 it costs.
I have seen good results from these vests
indeed Cindy from http://www.motiontherapeutics.com/ has been at the National Ataxia Foundation Conferences displaying and demonstrating the Balance Vest.
Alan
Wales
I got checked for the balance wear vest at the HMO I belong to and could not get any improvement. Jerry
I was fitted for one about a week ago. Sadly it didnt not really improve a heck of a whole lot however there was a belt .i have sca7 . That belt i use more as a training tool but seems to work for me in regards to my balance and walking. It reminds me to walk a certain way so i just practice that walk until it becomes easier. I think there is some muscle memory at play there. I am not sure the actual name of the belt but its black with black straps and it seems to be from the vest, but i could be mistaken. I am glad the vest works for you though.
It’s good to hear about improvement 
As with most things, what works for one makes no difference for another. A lot might depend on the type of ataxia, severity of symptoms etc to get the best result 
I’ve read lots of positive comments about this product 
xB
Echo what Beryl has said
Every Patient is different
Hi Sue,
I live in the wilds of north Idaho. Is it possible to get a vest in this part of the country?
Thank you
Mrs. C
Balancewear has its own website and its on utube. It shows people with balance issues before and after the vest. I think it’s a miracle for those of us that need it. Please call them, you will be glad that you did,
888-■■■■■■■■ is their phone number.
Best to you,
Sue Peavey
I had a fitting for the balancewear vest and it could not improve my problems. It does not work for everyone so don’t waste the money if it does not help when you first try one. It is too expensive to just take a chance. Good luck
Thank you. It seems to be helping me.
God Bless
Sue Peavey
Sorry! (got overly excited) OTvest, (affordable) denim weighted vest , will be at the National Ataxia conference in March, as another option of a weighted vest.
Whoa FIVE HUNDRED DOLLARS??? No way. Now granted the OTs around here make them custom for their patients for less than fifty so we are spoiled, BUT these are NOT an off the rack item - for ataxia patients in particular, but should only be a therapy embarked on with a qualified OT who properly sets them up. If not done properly they not only won’t work but can cause some problems. This has become big business for a few vendors preying on the parents of autistic kids almost but not quite promising a cure. Heck they are even holding rallies in some cities to sell the dang things. The new breed of Snake Oil sales I guess.
There is more to them than just weight. While weight on the shoulder girdle provides greater trunk stability and greater spinal support if not distributed correctly according to the patients needs they either don’t work or cause more problems than necessary. More critical is deep pressure around the chest and upper back if done properly provides a calming effect on the central nervous system resulting in more purposeful movements. We have had a few vendors creep in here and we have quickly given them the boot Its sad because it is a possible therapy for some and the discussion gets dominated by disciples and sellers. People sharing their personal experience is one thing and part of why we are here. Sharing someone else’s in a general way is entirely different. “Describe not Prescribe”
Here is a very excellent presentation about weigthed wear and placing of the weights etc. My neighbor (and OT since my stroke) tells me it takes her rehab facillity (and its a major one) anywhere from 2 - 6 sessions and observations with Cerebral Ataxia to get the vest properly balanced and frequently requires belts and/or ankle weights to get it all right.
TJ
Make Plans to Check Out This Year’s Exhibitors & Researchers
Angletech/CycleDifferent
BenFriends.org - LivingWithAtaxia.org
Biohaven Pharmaceuticals
Camino Care AB / Bestic AB
Cognition and Action Laboratory
CoRDS - Ataxia Patient Registry
Johns Hopkins Ataxia Center
Motion Therapeutics
OTvest, LLC
Rare Patient Voice, LLC
Reata Pharmaceuticals, Inc.
Social Security Administration
U.S. Research Opportunities
information about Balance vests fitted via professionals
http://www.motiontherapeutics.com/
At one time my ataxia made me feel as though I was bobbing along like a puppet, or as though held up by a helium balloon🙄 It seems likely I may have benefited from a weighted vest🤔
I recall someone being fitted satisfactorily in the US, then returning home (UK) and finding the weights needed to positioned differently because their condition had changed somewhat.
Some of us find ataxia symptoms can change at the drop of a hat🙄 So, maybe this should be borne in mind when making the decision to purchase. Maybe think how easy it will be afterwards to have someone assess redistribution of weights🤔xB
I was witness to that fitting in Las Vegas at the National Ataxia Foundation conference.
the positive results could be seen straight away.
the results will vary person to person
plus they will increase with the garment being worn over (a short time)
eventually the results happen without the vest being worn (for a short periods)
(ask the users)
I do think the small financial outlay, of this balance vest, is very much worth it, when you compare other very expensive products that give varying results
ie EXOSKELETON (and these are very cumbersome plus once you fall need extra help to get you back on your feet.