I am new here, and to SCA (2), so I am wondering if anyone knows of any research or trials that have shown any hope for a future treatment for SCA and/or ataxia?
I know the immediate answer is there is no cure... stay healthy... live in the moment :)
But, in terms of ataxia research, I'd love to hear about trials/studies that you might be aware of in this field and what the "real" possibility of a future treatment to even slow cerebellar atrophy might be? I have read reports form ataxia conferences predicting breakthroughs in 5, 10 or more years. Do you think any of this is realistic?
Anyway, there is so much knowledge here, and so many years of experience... I would love to hear any thoughts about this if you have them?
I am participating in a study at the University of Minnesota. I have been there twice in several years. They especially are looking for people with sca2. They need people who are able to sit in a mri machine for an hour at a time. They will also help with traveling expenses. When the study is completed they will compile the information into a research article that will help develop treatment and hopefully a cure someday! Let me know if you need contact info about this study.
Thank you but we are in Canada... I suspect that eliminates my husband. He did make it through an hour in an MRI, though, only moving once :) Does your study involve any drug trials, also? or are they studying the disease progression in participants?
I have SCA 2 too.... I will start in March something i think it would help more, but i don't know yet.
Days of the week Monday: I will start with the academy to improve only my strenght Tuesday: I currently do Pilates, to improve my balance, and yoga to improve my general coordination. Wednesday: I will start with the academy to improve only my strenght Thursday:I currently do Pilates, to improve my balance, and yoga to improve my general coordination. Friday: I will start with the academy to improve only my strenght Saturday: I currently do Pilates Sunday: Try to find another ways to improve my physiotherapy, i already read about doing puzzles like this, with little peaces ( http://mlb-s1-p.mlstatic.com/puzzle-quebra-cabeca-0500-pecas-londres-grow-mini-8637-18345-MLB20153635409_082014-O.jpg )
Since almost everyone here speaks english, i'll try to translate just te title os this pdf.
TITLE: Balance in Elderly evaluation through the use of Vibrating platform
In Christmas, my mother gave us this platform, with the objective of decrease the bone crackers in her body. Nowadays I am doing this exercises in the afternoon, even not recommended by the doctor. Because of the article i posted here. I just believe i can't just do what the doctor said, because the illness is mine, not him.
I already hear about "ecoterapia", with horses, but i didn't try yet.
They need peaple who are able to sit in what? (it would help if you find a picture)
Jodie said:
I am participating in a study at the University of Minnesota. I have been there twice in several years. They especially are looking for people with sca2. They need people who are able to sit in a mri machine for an hour at a time. They will also help with traveling expenses. When the study is completed they will compile the information into a research article that will help develop treatment and hopefully a cure someday! Let me know if you need contact info about this study.
i'm lorraine. I also have SCA2. i am going to be in a clinical trial at USF. Dr. Zesiewicz is running the trial in Tampa, Florida. http://www.healthgrades.com/physician/dr-theresa-zesiewicz-39npw. i haven't started yet. i have to go home (Brooklyn, NY) and get a letter from my primary care physician then back to Tampa for the trial. I'm on americanataxianing.com where I'll display my results. I stopped exercising which was not good. i also broke my ankle in 2010 and i still can't walk. so i would recommend besides clinical trials to keep exercising if you can. i'm constantly dizzy. makes exercising hard.
You are doing really well with English :) Thank you for taking the time to translate this for me.
It looks like it's all about exercise, and then we have to consider how to make time for this. My husband has tried the vibration platform. I just asked him about this the other day. Is there any way this can hurt your brain, with all that vibrating? I was thinking it might be good for balance, though. And, maybe a Bosu balance ball?
My husband tried yoga, before he knew he had a problem, and quit because he couldn't balance well enough to do the moves. It was one of the first signs that he noticed, actually. That, and he couldn't skate anymore. We have just started skating again but he uses a pusher. It's really hard work for him but safe with the pusher and I think he really has to work on his balance to do it so it might be a really good exercise for people with ataxia, with proper safety measures (helmet, pusher, etc.)
Ludmilla Souza Viana said:
I have SCA 2 too.... I will start in March something i think it would help more, but i don't know yet.
Days of the week Monday: I will start with the academy to improve only my strenght Tuesday: I currently do Pilates, to improve my balance, and yoga to improve my general coordination. Wednesday: I will start with the academy to improve only my strenght Thursday:I currently do Pilates, to improve my balance, and yoga to improve my general coordination. Friday: I will start with the academy to improve only my strenght Saturday: I currently do Pilates Sunday: Try to find another ways to improve my physiotherapy, i already read about doing puzzles like this, with little peaces ( http://mlb-s1-p.mlstatic.com/puzzle-quebra-cabeca-0500-pecas-londre... )
Since almost everyone here speaks english, i'll try to translate just te title os this pdf.
TITLE: Balance in Elderly evaluation through the use of Vibrating platform
In Christmas, my mother gave us this platform, with the objective of decrease the bone crackers in her body. Nowadays I am doing this exercises in the afternoon, even not recommended by the doctor. Because of the article i posted here. I just believe i can't just do what the doctor said, because the illness is mine, not him.
I already hear about "ecoterapia", with horses, but i didn't try yet.
I would like more information about I have sca type 2
Jodie said:
I am participating in a study at the University of Minnesota. I have been there twice in several years. They especially are looking for people with sca2. They need people who are able to sit in a mri machine for an hour at a time. They will also help with traveling expenses. When the study is completed they will compile the information into a research article that will help develop treatment and hopefully a cure someday! Let me know if you need contact info about this study.
They need peaple who are able to sit in what? (it would help if you find a picture)
Jodie said:
I am participating in a study at the University of Minnesota. I have been there twice in several years. They especially are looking for people with sca2. They need people who are able to sit in a mri machine for an hour at a time. They will also help with traveling expenses. When the study is completed they will compile the information into a research article that will help develop treatment and hopefully a cure someday! Let me know if you need contact info about this study.
Thank you. It sounds like there are some trials going on, which is hopeful. I will check for results. Thanks!
Lorraine Lerner said:
hi dancermom,
i'm lorraine. I also have SCA2. i am going to be in a clinical trial at USF. Dr. Zesiewicz is running the trial in Tampa, Florida. http://www.healthgrades.com/physician/dr-theresa-zesiewicz-39npw. i haven't started yet. i have to go home (Brooklyn, NY) and get a letter from my primary care physician then back to Tampa for the trial. I'm on americanataxianing.com where I'll display my results. I stopped exercising which was not good. i also broke my ankle in 2010 and i still can't walk. so i would recommend besides clinical trials to keep exercising if you can. i'm constantly dizzy. makes exercising hard.
They need peaple who are able to sit in what? (it would help if you find a picture)
Jodie said:
I am participating in a study at the University of Minnesota. I have been there twice in several years. They especially are looking for people with sca2. They need people who are able to sit in a mri machine for an hour at a time. They will also help with traveling expenses. When the study is completed they will compile the information into a research article that will help develop treatment and hopefully a cure someday! Let me know if you need contact info about this study.
it's interesting that there are various trials in the US - does anyone know of any trials in the UK, especially in London re SCA2? My husband would love to find something to take part in.
Thank you. It sounds like there are some trials going on, which is hopeful. I will check for results. Thanks!
Lorraine Lerner said:
hi dancermom,
i'm lorraine. I also have SCA2. i am going to be in a clinical trial at USF. Dr. Zesiewicz is running the trial in Tampa, Florida. http://www.healthgrades.com/physician/dr-theresa-zesiewicz-39npw. i haven't started yet. i have to go home (Brooklyn, NY) and get a letter from my primary care physician then back to Tampa for the trial. I'm on americanataxianing.com where I'll display my results. I stopped exercising which was not good. i also broke my ankle in 2010 and i still can't walk. so i would recommend besides clinical trials to keep exercising if you can. i'm constantly dizzy. makes exercising hard.
If interested in this study at the University of Minnesota (they need people with all types of ataxia), contact Diane Hutter at (612)■■■■■■■■ or email ■■■■■■■■■■■■■■■■.
I watched the NAF presentation streamed last weekend from Denver and Dr. Perlman (UCLA) mentioned CoRD (Stanford). If you haven't heard of it, it's a registry for people with rare diseases. If you are interested in being contacted for research studies you might want to register there? You begin by completing a general application and select ataxia as the disease. They will send you a more specific questionnaire about ataxia afterwards.
