Well, I met the PT trained in the Balancewear Vests. His name was/is Dr. Kanter and he is based in NYC. He did test me extensively at my home here, and my skeptical brother was present. Dr. Kanter said I am not a candidate for the vests at this point. Why? He said basically I was suffering primarily from a balance problem, and advised me to fix that via exercise. I think these vests are for hardcore ataxics such as people who are holding on to walls etc. He spent alot of time w me and gave me three new home exercises.If you are really incapacitated, it might pay to at least speak to one of these PT's and think about seeing them. Dr. Kanter pointed out that no one knows why these items work, At this point, the vests are only available in the USA The vest (I tried a trial vest with 2 1/2 pound weights in the back trnkal area) was unhelpful to me but apparently do work for some. N
I have had a vest for over a year now. I am sorry to hear the pt did not think you would be helped. The vest has been incredibly helpful for me. Mainly with balance and gait, but I have also seen improvement in speech, handwriting, my ability to text, and nystagmus. I was fitted by Cindy Horn who invented the vest. I do know that not everyone is a candidate, but for me the results were immediate and significant.
Thanks for your response Rose. I frankly did not see much of a change whn I wore the trial vest. Maybe he was the wrong PT. He did mention that the "crew" in California might be more aggresive in general and in placing the weights. He, himself, seemed rather skeptical and said he worked mostly with MS patients. He did know his stuff and as I said, gave me 3 specific balance exercises. He said anyone who is not holding on to wall and can walk down stairs just holding someone's pinky (me) doesn't need a vest. Dunno. N RRose said:
I have had a vest for over a year now. I am sorry to hear the pt did not think you would be helped. The vest has been incredibly helpful for me. Mainly with balance and gait, but I have also seen improvement in speech, handwriting, my ability to text, and nystagmus. I was fitted by Cindy Horn who invented the vest. I do know that not everyone is a candidate, but for me the results were immediate and significant.
I got my vest a few months ago from Cindy Horn in SF and it has been very good for me, especially with my speech and writing. If I don’t wear it my walking is very bad ( have to hold onto walls etc). I have had the placement of the weights changed once ( we skyped Cindy and my husband moved the weights where she instructed). Everyone who knows me says my speech is so much better with it on and it even improves my singing according to my teacher. With it on I can speak without getting so tired. I am so glad I found it just looking around on the Internet and I found it by chance. Fate!
I am happy 4 u. My case was obviously different. In health, N
Wobblymum said:
I got my vest a few months ago from Cindy Horn in SF and it has been very good for me, especially with my speech and writing. If I don't wear it my walking is very bad ( have to hold onto walls etc). I have had the placement of the weights changed once ( we skyped Cindy and my husband moved the weights where she instructed). Everyone who knows me says my speech is so much better with it on and it even improves my singing according to my teacher. With it on I can speak without getting so tired. I am so glad I found it just looking around on the Internet and I found it by chance. Fate!
Well I don’t hold onto walls and it has been a blessing to me. I told Cindy that one of my goals was to be able to carry my own coffee without spilling it. Mission accomplished! I don’t know what the answer is it it sounds as if the you might benefit from a different pt. I am surprised to hear of his response. I’m sure Cindy would be too.
neta said:
Thanks for your response Rose. I frankly did not see much of a change whn I wore the trial vest. Maybe he was the wrong PT. He did mention that the “crew” in California might be more aggresive in general and in placing the weights. He, himself, seemed rather skeptical and said he worked mostly with MS patients. He did know his stuff and as I said, gave me 3 specific balance exercises. He said anyone who is not holding on to wall and can walk down stairs just holding someone’s pinky (me) doesn’t need a vest. Dunno. N RRose said:
I have had a vest for over a year now. I am sorry to hear the pt did not think you would be helped. The vest has been incredibly helpful for me. Mainly with balance and gait, but I have also seen improvement in speech, handwriting, my ability to text, and nystagmus. I was fitted by Cindy Horn who invented the vest. I do know that not everyone is a candidate, but for me the results were immediate and significant.
As you just said yourself, every case is different. What is good for one is not necessarily good for another.
I know that you are disappointed but at least you can function well on your own.
I think that my case is probably not bad enough (fortunately). I don’t believe my gait could be improved, but I am hoping for some relief from the relentless dizziness. I am hoping to get tested in the next few months.
Enjoy your stay in NYC and keep up with your exercises to stay strong.
Take care.
Yes I do think that Cindy herself might have been more aggressive in pushing her product. I think Dr. Kanter mentioned this.
But as I said, he found that it did nothing for me. Nor did I think it did anything special. Maybe he didn't try enough. Maybe he doesnt quite believe in it, Maybe he does. Who knows. He obviously thought it was thrown out money for me... N
hi, my son Miguel and I live in the Bay Area, he was diagnosed 4 years ago with cerebellum ataxia He is only 29, i'm sure this vest will benefit my son. do you have a # where i can contact Cindy? He also needs a PT in the bay area who works with people with balance/gait problems...can't find a good PT do you know anyone in this area ?thank you
Wobblymum said:
I got my vest a few months ago from Cindy Horn in SF and it has been very good for me, especially with my speech and writing. If I don't wear it my walking is very bad ( have to hold onto walls etc). I have had the placement of the weights changed once ( we skyped Cindy and my husband moved the weights where she instructed). Everyone who knows me says my speech is so much better with it on and it even improves my singing according to my teacher. With it on I can speak without getting so tired. I am so glad I found it just looking around on the Internet and I found it by chance. Fate!
Hi Neta, Looks like there's another Rose on this site, RRose, as I'm just Rose (only one "R"), and this is the first time I'm responding to you. Anyway, I have a BalanceWear vest (as you probably already know), and it has been very helpful! Actually, it's a blessing that you're not a candidate, as that only means your ataxia (balance/gait) is milder than mine, and others that have vests, which is wonderful news! When Cindy Gibson-Horn did my assessment, she did mention that it doesn't work for everyone, depending on the severity of their ataxia. Everyone is different. So, if I were you, I'd run (not literally...,ha!) with this information and relish it! I'm happy for you! Keep doing your balance exercises and take care!!! Hugs, Rose ;o)
Maybe it’s just that the vest isn’t a good fit for your needs, and/or you aren’t a good candidate for the product; but you never know…and it seems too important not to know.
I dont even know to whom to turn for a second opinion. I agree with what you say but also feel encouraged/thankful sort of that he didn't think I was such a bad case to begin with. Still, I was dreaming that it would be my magic bullit especially given my relatively (not to me!) mild case. (I dont think its so mild!!!!!!).As confused as ever...... N
Glitter on Butterflies said:
Have you considered a second opinion?
Maybe it's just that the vest isn't a good fit for your needs, and/or you aren't a good candidate for the product; but you never know...and it seems too important not to know.
That is pretty much what the PT said. I respected him for not wanting to sell me something that will not work for me. But, like my drs. he seems to think I am in better shape than I feel. I am a good actress. Maybe I am better than his other cases.For example, he was encouraged that I didnt grab the walls at any point and that I merely held his pinky upon descent from the staircase (which was torture for me). He even questioned whether I have ataxia! Of course I do. I feel it in my speech; when I walk; use my muscles; step on curbs; move past people (who are waiting to pay for example;) and feel very unstable when I am in a theatre or at the movies etc. N I tried to stress that this new "condition" prevented me from working and affected my speech (not eyes) to a degree. N
rose said:
Hi Neta, Looks like there's another Rose on this site, RRose, as I'm just Rose (only one "R"), and this is the first time I'm responding to you. Anyway, I have a BalanceWear vest (as you probably already know), and it has been very helpful! Actually, it's a blessing that you're not a candidate, as that only means your ataxia (balance/gait) is milder than mine, and others that have vests, which is wonderful news! When Cindy Gibson-Horn did my assessment, she did mention that it doesn't work for everyone, depending on the severity of their ataxia. Everyone is different. So, if I were you, I'd run (not literally...,ha!) with this information and relish it! I'm happy for you! Keep doing your balance exercises and take care!!! Hugs, Rose ;o)
Neta, for a second opinionconcerning your diagnosis try to find a " Movement disorder clinic" in New York, since you are there for now. If you research google for instance, just plug in Movement Disorder Clinic in NYC. There are a few of them. The neurologists working in those clinics are specialists in diseases like Parkinson’s, MS, Ataxia etc…
Hope this helps.
neta said:
I dont even know to whom to turn for a second opinion. I agree with what you say but also feel encouraged/thankful sort of that he didn’t think I was such a bad case to begin with. Still, I was dreaming that it would be my magic bullit especially given my relatively (not to me!) mild case. (I dont think its so mild!!!).As confused as ever… N
Glitter on Butterflies said:
Have you considered a second opinion?
Maybe it’s just that the vest isn’t a good fit for your needs, and/or you aren’t a good candidate for the product; but you never know…and it seems too important not to know.
Neta, for a second opinionconcerning your diagnosis try to find a " Movement disorder clinic" in New York, since you are there for now. If you research google for instance, just plug in Movement Disorder Clinic in NYC. There are a few of them. The neurologists working in those clinics are specialists in diseases like Parkinson's, MS, Ataxia etc... Hope this helps. neta said:
I dont even know to whom to turn for a second opinion. I agree with what you say but also feel encouraged/thankful sort of that he didn't think I was such a bad case to begin with. Still, I was dreaming that it would be my magic bullit especially given my relatively (not to me!) mild case. (I dont think its so mild!!!!!!).As confused as ever...... N
Glitter on Butterflies said:
Have you considered a second opinion?
Maybe it's just that the vest isn't a good fit for your needs, and/or you aren't a good candidate for the product; but you never know...and it seems too important not to know.
Hi Neta, we are all good actors, I mean how many times have we walked into a doctors and when asked how we feel we reply fine. The doctor may think your case is mild because your not as bad as other patients that he sees but that doesn't make it less troublesome for you. every ones ataxia is relevant to them.