I am being coerced into buying one of those balance vests. I do see all the good reviews and stories behind it so I am not really fighting it. I guess I just feel that my hyper reflexes and the leg shakes are the most exhausting and trying of my symptoms. I am using muscle relaxers to treat this though. Well does anyone with SCA7 have anything to say about this? Or to anyone with similar problems or just in the know is it worth getting the balance vest?
I think a weight vest can be very helpful. If you’re not wanting to spend a lot for a specialized vest by a movement company you might buy a Hyper Vest Pro weight vest. It has lots of little pockets and the weights are .07 lb. each. So,you can put in several on one side or on the back or front and experiment with what helps you. I notice when I wear mine that I’m less of a ‘marionette puppet’ goes down our stairs. Hope this encourages you. J
Thanks for your response. Knowing me I need a doctor to push me around to find where i need weights to be put. I have a scheduled visit on the 24th. I will post what i find out.
May your appointment go well. J
I would like to know how it goes bc I am looking into buying a vest also. I have sca 5 and am looking into this. But where do I go or where to schedule appointment?
I just went to get the balance vest fitted on Saturday. It wasnt much help as I mostly have tremors causing my unsteady gait. Instead i got a better neuro physical therapist and she is great. Seems to be really helping me control my tremors and helping walk smoother. What did help me though was the belt that came with the vest. I use that instead and it seems to be working for me, or at least giving me the proper tools I need. Idk if youve already bought a vest but everyone os different. It didnt work for me but maybe it could work for you.
Don’t know anything about the balance vest.But would appreciate if you got one if you would let me know how it works.Also if you can tell me anything about your ataxia type 7.I also was diagnosed with it.Thanks Earlene
I just got my referral.prescription today, but they are scheduling three or four weeks out, I told them that I could also come on short notice if there is a cancellation. I am anxious to see if it would help because I would sure like to walk on my own.
How are doing these days? Have you been fitted with a balance vest? JD
No no vest. I have pretty much abandoned that idea and only use the balance belt for therapy. I have been using protandim(for 2 weeks now) to hopefully help with some symptoms (hopefully after 4 weeks) and waiting for a particular treatment in 2018. I am more or less doing okay. What about you?
Does your therapist use Frenkel’s exercises with you? I’ve seen improvement in my fine motor skills and gross…less walking like a drunken sailor when carrying something. I have a mild compression fracture that’s healing up. Some meds simply thrash out our bones…who knew when we took meds when a teen…I find encouragement though, having read Anatomy of an Illness by Norman Cousins. Gotta keep humor in our lives! Helps fight just about any downward spiral…let me know if sym are relived. Yarping for you! In Chinese the kids say, “Jiaoyo! Jiaoyo!” A cheer like our “You can do it!”
I am also thinking of getting a balance vest. The only way I can walk or stand up is with assistance. I use a walker to move around the house. I feel OK sitting or lying still, but as soon as I start moving to walk or stand, the room moves with me. It’s very overwhelming and tires me out easily. My house has many stairs which is keeping me from going out. I am housebound most of the time. With spring coming soon, I’d love to get downstairs and go outside to enjoy the nice weather. If I decide to get a vest, I’ll be happy to share my experience here with you all.
Have you thought of trying a balance program. Mike Ross of The Balance Academy has a great online support program…and now videos. I had broken my ankle and had dismal balance. His program was better than my PT sessions. A Hyper Pro Vest has helped…less costly than seeing a specialist…depends on your ingenuity on helping yourself and having a friend support network. JD
I finally got my appointment to be evaluated for BalanceWear. It is for next week. I’ve been thinking about all the stuff I could do if my balance were better and getting excited, I should probably not do that since I don’t want to end up quite disappointed.
I do think the BalanceWear can help some because I noticed that carrying a canister of sugar by my abdomen helps me feel more balanced in the kitchen. Since I observed that, I carry a one pound weight around with me when I go out. That alone, while it does not come near solving my problems, makes it worth purchasing a vest.
What I really want to do is to use the PoNS device because I think that may offer me a longer term solution, but until it is approved by the FDA, I can’t get it.
Wooohooo! Keep us posted on how your appointment goes for getting a Balance vest. What I’ve been experiencing is more in the upper body and fine motor skills…it can be a comedic event brushing my teeth manually or watching me measure out recipe ingredients. Ah well…we find, sometimes on a daily basis, ‘new normals’, and forward we go. Be courageous! JD
You are very encouraging thank you for being so positive. I have been doing a lot of solo rehab i believe we did some excercises together that she referred to as frenkels excercises. Will inquire more when the next time we meet. I will try and stay positive in the mean time.
where is everyone getting balance vests from? How do you go about getting one? I think it would help me. Thank you.
Lin-da, when I’ve just viewed a video clip on motion therapeutic site…and heard the price…it’s a lot…$800-$950…but, if you have a physical therapist who’s willing to experiment with you, you could buy a Hyper Vest Pro at www.hyperwear.com l purchased one several years ago to help with my bone density…there’s like, over fifty little pockets in the vest. Teach weight bar is .7 lb. real light… Well, when I was real jerky in walking down my stairs a couple of years ago I noticed I was jerking way less when I had my vest on. And it cost $200. A big savings over motion wear. So, if you have a PT or even a good friend, you could experiment with loading top/bottom or side/back/front with the Hyper Vest.