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Ataxia Support Network

I am thinking about buying a Balance vest


#21

thanks you, that is so helpful! I really appreciate it!


#22

I went this morning for my balance Wear evaluation. Well, the hoped for miracle that my symptoms would all disappear did not happen. There was a little improvement, though. Our plan is to have a PT session next week using it and see what we think. Then we can make a decision. That probably is not too surprising, though I had hoped for something between reality and the miracle.


#23

Dear one, it does take time for our brain to rewire itself…many repetitions will be needed…but take heart, improvement over time will come as a surprise…a moment you’re able to move normally, or let’s say, move in your ‘new normal’…all in all so worth the effort. An excellent exercise to help is: stand as straight as you are able; hold your arms out to each side; focus first on the left wrist bone and air-write A-L; looking than at the wrist bone on your right hand, air-write M-Z. If they are videotaping you to make adjustments, do this exercise after they tape you once, see if on the second taping there’s improvement. In Aqua Therapy I was ‘scissoring’ my legs as I walked on the treadmill (underwater)…I stopped, did the exercise and when I began walking again I stopped ‘scissoring’ my legs…pretty cool! It helps tell our brain where our extremities are, which we definitely need for balance. Please let us know how you’re doing…jd


#24

Thanks so much for your encouragement. I was thinking a lot more about it and realized that since it has been seven years since I have walked by myself, I may have esssentially forgotten how and that with training, maybe I will do better. I should probably be more optimistic. Also, any improvement is fantastic and I should celebrate it.

I’ll try the exercise that you suggested. It can only help.


#25

One of the encouraging comments made by Heinrich Frenkel is that when a patient of his was devoted to doing the exercises there was improvement…the key is devotion. He wrote that practice of a particular movement might need as many as a thousand repetitions…sounds like a lot, but each repetition is built upon the prior movement and thereby each reinforces new pathways in our brain. Be encouraged! At times he saw patients begin improving within six weeks. I’m thinking of beginning an “Encouragement Corner” topic…let’s cheer each other on! JD


#26

You betcha! It’s a good way to heal. We ant let this disease get us down.


#27

My appointment today went a lot better. I figured out that the reason I didn’t see an improvement last time was that I was still feeling a residual effect of the weight I carried around (to replace the sugar canister). Anyway, I hadn’t used the weight yesterday or this morning and I could tell a big difference. I still did not get the miracle I was looking for, but I did see improvement. I’m happy to take that. We are going to order a vest.


#28

Great! Happy to hear you will benefit from a vest…in Chinese there’s a cheer…“Jiaoyo! Jiaoyo!” That’s “You can do it!” JD


#29

Motion Theraputics are exhibiting at the NAF Convention in San Antonio 10-11March :slightly_smiling_face:xB


#32

Don’t just buy a balance vest, and they should not cost a lot either. 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. Most frequently, they should be fit using an instrumented gait mat.

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. Weight Vests are part of a combined OT/PT program not just an isolated treatment. Sorry if this seems repetitive (because it is) but I am a believer in the therapy if done right.
TJ


#33

So glad you’re on top of issues. I had looked at the OT vest and thought the same…it’s not fitted to me. Good to know you are looking out for all of us as we share our experiences. Thanks much! JD


#34

I’m glad also. I looked at the other web site and had the same thought about the custom fitting. Now that I have more experience with being fitted, I realize how important that is and how much expertise is required. My PT even requested that two of her peers, who had also been trained, check everything to ensure I was getting the maximum benefit. And that was even after I had told her how I inadvertently messed up what she did in the previous session. Ireally appreciate that.