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Ataxia Support Network

Balancewear Vests and Spinocerebellar Ataxia 3


#21

Thanks Nana for info


#22

I don't think the person that fits the vest in Victoria BC is able to do it according to Cindy Horn.

jman said:

I was wondering if fitting the vest in Ontario Canada. I noticed someone in Victoria BC fitting the best.

#23

Olive,

This is what someone I know with SCA3 wrote to me:

:" I have been working out with a weighted vest and ankle weights and it is amazing! I can WALK with them on!!!! My neurologist and physical therapist said not to wear them more than an hour 4 days a week because it is tricking the brain by changing the sensory message that's being sent. Too much of this and the SCA3 could try to change the message, essentially making it even worse.
But it is 4 hours of freedom to move!!!! I love it and don't feel the physical weight on me and can walk exercise with them BUT I am very very very tired after because it's 45 extra pounds that I'm doing this with! 35 in the vest and 5 on each ankle.."
I hope that helps

#24

Hi Olive!

I was wondering how your mother made out with the BalanceWear vest? I have been using mine again! My physical therapist and I actually skyped with Cindy to show her the affects on me. Of course the day she saw me with it, was a “good day” for me, so my symptoms were not as pronounced as on a “bad day.” We are looking into possibly getting the vest incorporated into my wedding dress somehow… obviously I don’t want to use a black bulky vest over my elegant, lace wedding dress, but we are looking into ways to incorporate the weights to help me get down the aisle with little problems!! I am hoping for a real miracle on September 26th!


#25



Oldbride said:

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!

Is this the Big 5 sporting weight lifters vest or does balancewear make a cheaper vest. Jerry


#26

Hey everyone, sorry for the lack of response.

My mother and I went down to Fulton, NY (sorry jman, i'm not sure of the name, i will have to find that info for you) and she was fitted for the vest. the physiotherapist was super nice and not pushy at all. he had only ever fitted the vest for MS patients, and wasn't familiar with this disorder, so he didn't want to pressure her or make any false promises.

Anyways, typical tests: walk around (assisted), stand up and get shoved in every direction, put your feet together. everything that makes my mom fall over.

then we tried the vest and ran the same tests. the physiotherapist played around with the weights until it was just right. he mentioned cindy and how he trained with her. once the weights were adjusted, we noticed an improvement in my mom's balance while standing. she could now put her feet right beside each other (touching) and rotate her trunk (does that make sense? almost the motion a skier would make?) and when she walked, she was able to turn better (she was still assisted and held onto the therapists' arm). now, this was just once the vest was on. so there still may be improved long-term affects.

she had tried the more expensive one (with the back brace type attachment) but she didn't need it. her trunk strength was good enough that it wasn't necessary, and she just found it uncomfortable anyways. the cheaper version is still running us $1000 canadian, but in our opinion, it's worth it.

we are headed back down on the 21st to pick it up and we'll see how we do from there!

Thank you so much everyone for your opinions, suggestions and comments. i truly appreciate all of them!


#27

Does any one know how long this balancewear will last ( I mean its effect) we have history for SCA3 in our family & it gets seviour as as years pass by. My uncle could not walk, could not speak, could not even blink his eyes. So does this belt's effect can last 5,7, or 10 years !!

Appreciate your time & replies.


#28

the problem is that the vest only works to slow down deterioration. according the the physiotherapist, what ever was already lost, is lost. we inquired about that because my uncle is in a wheel chair from the disease, and the physiotherapist said that it would not help in that situation because the ability to walk has already been lost. it very much appears to be a "use it or lose it" disease.


#29

thats bad news for us but appreciate your reply.


#30

Dear Olive, So happy for your mom! I have a BalanceWear vest also and really like it. It's not a cure for ataxia, just helps me do better! And, Sunny8088, I've had mine about four years (I was diagnosed with my ataxia eleven years ago, although had minor symptoms starting about 8 years before diagnosis. My ataxia is of unknown cause) and I wear it several hours each day. I find I have some residual effects when I take it off, that last for several more hours. I write/print better when wearing it and have no idea why. I'm going to start going to physical therapy tomorrow, as my insurance helps pay for 15 visits per year. Therefore, I try to go yearly. I mentioned this, as I will wear my vest to my appointment and have my pt check my weights, as occasionally they have to be moved. If you have any other questions, please don't hesitate to ask and I'll try to answer. My best to all..., ;o)


#31

i'm certainly no expert. that may just apply to the type my family seems to have, which is genetic.

sunny8088 said:

thats bad news for us but appreciate your reply.


#32

Yes Olive ours is genetic too.


#33


Rose , Does Physical therapy work !!


rose said:

Dear Olive, So happy for your mom! I have a BalanceWear vest also and really like it. It's not a cure for ataxia, just helps me do better! And, Sunny8088, I've had mine about four years (I was diagnosed with my ataxia eleven years ago, although had minor symptoms starting about 8 years before diagnosis. My ataxia is of unknown cause) and I wear it several hours each day. I find I have some residual effects when I take it off, that last for several more hours. I write/print better when wearing it and have no idea why. I'm going to start going to physical therapy tomorrow, as my insurance helps pay for 15 visits per year. Therefore, I try to go yearly. I mentioned this, as I will wear my vest to my appointment and have my pt check my weights, as occasionally they have to be moved. If you have any other questions, please don't hesitate to ask and I'll try to answer. My best to all..., ;o)


#34

I've done of physical or aquatic (water) therapy yearly ever since I was diagnosed and find it very helpful for me. I go by the saying, use it or lose it...,ha! I have extreme stiff/tight/spastic muscles (especially in my legs and neck) and if I move, this helps me! Therefore, I do exercises for strength and balance at home as well, and stretch each day. It's not easy, as I'm slow/uncoordinated and get fatigued easily, but I keep doing it! My neurologist says there have been successful studies on mice where new neuron pathways are formed with repititious exercise. He says the trick to this is to keep doing things over and over, and try to increase the time to make new pathways. For instance, I stand at the ledge between my kitchen and family room so I have something to grab onto in case I start to fall. I stand on one foot for as many seconds as I can and keep trying to increase the seconds (without holding on). Then I do the other foot, and so on. I also stand in back of a sturdy chaIr and do things for balance. Safety first, as I ALWAYS have something to grab onto! My favorite exercises are ones I do lying on the carpeted floor, as no chance of falling...,ha! Getting down and back up is a bit of a struggle, but somehow I manage..., ;o)


#35

rose really helpful reply. Thanks.


#36

I went for a doctors appt. this morning and asked him about getting a prescription for a vest tryout and he laughed in my face. He says they dont write script for other facilities and acted like I was stupid for even asking. I just cant get happy with friggin kaiser.


#37

A good doctor shouldn't make you feel like that. Is there a way to find a different one? They deserve respect, but so do you!


#38

I just changed doctors because I was not happy and got another doc that is getting orders from an office worker I guess. Told him I read where doctor Gupta on TV news liked it and he jumped on dr Oz being a ding dong. Then he told me he was not liking my cannabis and I told him I prefer it to lyrica ambien and klonipin. I think I read on here someone said Kaiser covered vests for someone so why not me.


#39

That's great that you don't have to see him anymore. you should be able to make decisions for your own treatment He sounds like a jerk

.Good luck :-)


#40

Hello everyone! WE GOT THE VEST!

My mom has been using it for about two weeks now. her weights were placed as follows: one half pound on her right shoulder blade, and one half pound on her left one. One half pound on her right lower back and one half pound on her left side. a total of two pounds. she has been super happy with the result so far. she feels a lot more grounded and an overall general feeling of being more secure. it does tire her out, so she can't wear it all day long yet. she still has bad days, but she is generally very happy with the purchase.

Gelu65, we didn't get a prescription for it. We had to travel from canada to the us and had to pay everything out of pocket. but with the results she's been having, we'd do it again.