Vests Still Waiting to Hear

If you have any info on the weighted vests, please inform. Thanks N

I picked up my vest on Friday I haven't taken it off since. I'm going to wear it the rest of the week and not wear it next week and compare the differences. I know the vest has already approved my balance and stability. Some things I noticed, I feel much more comfortable walking in stores and malls, and the walking drunk sensation is not as bad as usual, I also noticed while standing in church I am much more solid while standing I don't sway is much and I have notice that I do not lose balance as much as I did. And in what is more important that my wife has seen these changes, and she is a physical therapist also. I can't believe 5/8 of a pound can make such a difference. Everyone is different and they might see changes and might not.


Thanks for getting back to me. It seems like it helps somewhat from what you say. I am happy that your wife noticed. She should know. I am looking for improvement in balance and stability. Thanks again for getting back to me. N
Jack said:

I picked up my vest on Friday I haven't taken it off since. I'm going to wear it the rest of the week and not wear it next week and compare the differences. I know the vest has already approved my balance and stability. Some things I noticed, I feel much more comfortable walking in stores and malls, and the walking drunk sensation is not as bad as usual, I also noticed while standing in church I am much more solid while standing I don't sway is much and I have notice that I do not lose balance as much as I did. And in what is more important that my wife has seen these changes, and she is a physical therapist also. I can't believe 5/8 of a pound can make such a difference. Everyone is different and they might see changes and might not.

Can you please give me info on the vest…I would like to order it and try it out

I to was diagnosed with SCA-2…being hereditary …was obtained from my mom

Neta,

You have to be evaluated by a certified PT first. If he/she feels you would benefit you, they place an order for the vest. It takes a week or to come in. Then you go back to the PT for a follow up fitting. That’s it.
Jack has found it helpful, and I have as well. I’ve talked to a woman in FL who was only getting around by scooter who is now walking 4 miles a day with a walking stick. My experience with it is not that dramatic, but I still notice some improvement in stability and at times my speech.

Hope that helps!

Kathy

Thanks Kathy,

Yes, I have an appointment in NYC, with a special PT for the vest. His name was given to me by the vest folks. I am glad you have found it helpful. Just curious... how much weight was put on yours??

Kathy G said:

Neta,

You have to be evaluated by a certified PT first. If he/she feels you would benefit you, they place an order for the vest. It takes a week or to come in. Then you go back to the PT for a follow up fitting. That's it.
Jack has found it helpful, and I have as well. I've talked to a woman in FL who was only getting around by scooter who is now walking 4 miles a day with a walking stick. My experience with it is not that dramatic, but I still notice some improvement in stability and at times my speech.

Hope that helps!

Kathy

Hi there,

Check out Balancewear on Google for more info. N

Tremeca Lee said:

Can you please give me info on the vest....I would like to order it and try it out

My vest has 1 lb. of weight added to it. Everyone’s amount is different.

I see. Thanks for answering. My assigned therapist is Dr. Kanter.

Kathy G said:

My vest has 1 lb. of weight added to it. Everyone's amount is different.

I don't have one. But I hear that the vest can help those that don't work on their core strength. I think it has it's place to do exercises with to build up the core but not to depend on it doing the work for you. I haven't heard anything long term though. I wounder if one could achieve the same thing with Velcro weights cheaper? Not sure but anything that is presented as a miracle and heals us by buying something for lot's of money, makes me skeptical. I guess I'm more into learning how to use the body to compensate.

Check out Dr. Tom Clouse's site for tips to work on your core without spending money to do it. www.walkingwithatataxia.com/

I think that it is very possible that this vest can help some of us, because I have noticed that when I carry something a little heavy, even just a couple of pounds, I feel more anchored and stable.

Jeannie, I also believe that it would be possible to make such a vest , but the trick is to know where exactly the weights should be put in. I think that it is the “secret” . I do not think it would work as well if the weights were put in at random. They must be strategically placed and depending on each patient case, this place would be different. This is why they train therapists especially to fit those vests.

I have been waiting for the company to have therapists trained in my area and I am hoping that by the middle of next year, they will have someone.
I know those vests are expensive, but there is no competition so far… And the idea is still in its infancy stage…

Another idea to make a vest yourself, would be to use a fisherman’s vest which has all sorts of pockets everywhere and put weights in those, maybe custom made bean bags? :slight_smile:

My vest did help my balance a little, but I don’t wear it anymore. Here is why…I am too terribly afraid to move without my rolators ( I have 2 different kinds) . At the makers suggestion I got into a special PT program where I trained with and without the vest, and didn’t see much difference in my balance. I ended up dropping out of the program for 2 reasos. It is a far distance from my home, and it was so stressful mentally. I feel if I had
had the vest 6 years ago before I started using the walker, it would have worked for me. I encourage everyone to check it out. There are many success stories about it. Good luck. Sharon


That is the same sensation I get when wearing the vest, my feet feel more anchored and I do not sway as much.

I have noticed this standing in church, doing my volunteer work, doing things around the house and at the gym. I definitely feel the better shape a person is in they will see more results. I like the idea of a fishing vest you would need to figure out how to secure the weight.
Cicina said:

I think that it is very possible that this vest can help some of us, because I have noticed that when I carry something a little heavy, even just a couple of pounds, I feel more anchored and stable.

Jeannie, I also believe that it would be possible to make such a vest , but the trick is to know where exactly the weights should be put in. I think that it is the "secret" . I do not think it would work as well if the weights were put in at random. They must be strategically placed and depending on each patient case, this place would be different. This is why they train therapists especially to fit those vests.

I have been waiting for the company to have therapists trained in my area and I am hoping that by the middle of next year, they will have someone.
I know those vests are expensive, but there is no competition so far... And the idea is still in its infancy stage...

Another idea to make a vest yourself, would be to use a fisherman's vest which has all sorts of pockets everywhere and put weights in those, maybe custom made bean bags? :-)

I have a BalenceWear vest. I won a vest at the National Ataxia Foundation (NAF) Conference's silent auction, this past March. Cindy Gibson-Horn, the Physical Therapist inventor, spoke at the conference. I ended up bidding half the price the vest usually costs, and won. Included was a free assessment by Cindy. I have 1 & 1/4 LBS of weight velcroed inside my vest, where I need it. Cindy determined placement, mailed the vest to me and I went to a local pt, trained in BalanceWear, for my final fitting. I LOVE my vest, as it really helps my gait/balance. My husband says I walk more normally when wearing it. I'm also able to turn my head from side to side to look, without losing my balance. I even write/print better when wearing it...,what's up with that? There's also some residual effect when I take it off. Amazing! ;o)

I think these vests are terribly exciting. I had a young Occupational Therapist suggest I put excercise weights on my ankles a few years back to help me walk better when I was stressed. Stress really made it hard for me to walk but otherwise it wasn’t such a problem. To my amazement it really worked. I no longer need them ( not much stress in my life anymore). But it did show me that this is an idea that can make a difference for me. i’m doing much better through changing diet and doing core strengthening exercise. Swimming and walking on sand (in Hawaii) has been my therapy and landscaping my yard when home --and swimming. It seems like the more I move the more I improve.

Dear All,

Thanks for your responses.I have taken your comments to heart. I have also tried to invent a vest using hand weights. But I am not sure of the heaviness. Though I find them helpful (weights) and always carry a heavy purse, I am also unsure where to put them. I will see what he (the PT) says and keep an open mind. I will report back. My appt. is Dec 9 in NYC at 630 pm. N

BEST OF LUCK WITH YOUR APPOINTMENT, NETA! PLEASE KEEP US POSTED AND OW IT GOES! ;o)

Hi all,

I am in NYC waiting for my vest/PT appt tomorrow. I hope something works/helps. I had a nightmarish time at the airport in Spain, missed my flight to NYC and the next flight, Delta, exploded on the ground & 4 people were hospitalized. Had to buy a whole new ticket via Iberia. Spain, though is glorious, But be wary of cobbled streets on old cities!

In health, N in NYC

Glad you came out of this nightmare without being hurt!
Good luck for your appointment, Neta. I hope you are a good candidate for the vest!
Stay safe.