Ataxians and everyone with any illness needs hope ,and this trial give us a bit of hope. As we all know we need to keep strong and positive, not easy I know. I’ve got more than 1 tee shirt!!! Peter Ashbourne England
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Sir,
I am told by doctors SCA-1.
I have signed with ‘Living with Ataxia’. And was provided with user name: sumanyu. But I am not able to login this site. Please help me how to open. They have sent me new passwords so many times. Still not opening the account. Pl. help me and tell me the procedure how to open it.
I can see your message here. Be assured you have followed instructions, and are logged onto the site.
You’re doing something right.
Dear man
My name is Ingrid. I am from the Northern Germany SGroup. Tell me more about your hope,Sounds interesting. I have the best neurologist and she has never mentioned it.
Ingrid
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Something that is helping!
For the last 8 years we have been dealing with my husband’s ataxia watching things get progressively worse. Getting more devices–motorized chair, lift chair, rollator, etc. Tried more things than you can imagine. Recently learned about Tui Na massage that Chinese acupuncturists use. Found out that two experts in neurodegenerative diseases (one with Parkinson’s, one with MS) used Tui Na with success in helping movement. We have gone three times and see more and more improvement --in balance, movement, voice, overall energy. Look for a good Chinese acupuncturist who does Tui Na near you.
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Hi Jman I was wondering about biohaven and what is it and what does it involve.I have spinal cerebellum ataxia Thank you Perry
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My 14 daughter years old daughter has ataxia because her tumor removal 4 years ago. Is this trial you are talking about on adult only ? Or kids can participate too ?
also try magnet therapy. it works with your magnet field in your body. but buy the nikken brand
Hello I’ve been going to aqua fit three days a week and find it helps . It’s low impact and seems to help. It’s good in the pool and a good workout . I use a walking sticks and have a walker but really it’s my speech that bugs me the most because you how to talk and when to talk just the words come out slow and broken up. I couldn’t speak for about 2 to 3 months but slowly come back at least to the point where I can be understood. I still have slow speech but I’m coping.
Thanks Perry
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Hi,
Ataxia runs in our family. I’m 72. My older brother had it and 3 of my nieces have it. Fortunately I am participating in a Clinical Drug Study at UMass Boston and 2 of my nieces are in the same study at the University of Chicago. Go to biohavenpharma.com and click on news for all the details. Let’s pray that this drug works and offers some relief.
The Biohaven trial is already taking place - they aren’t taking on new participants. I think the drug they are testing is for some types of hereditary ataxia. Check out the Biohaven site. Google Biohaven ataxia test. All the best for your daughter.
Polly
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Best to you, Perry. Hang in there.
Hi Noah,
Sorry to say that the trial uses 18-75 years old but like Polly says “The Biohaven trial is already taking place - they aren’t taking on new participants”. Fortunately, I’m am one of the lucky ones accepted and started taking the drug (phase 3) today! Will check in about a month on any changes.
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Where is this taking place? I’m in Philadelphia,Az
J H M Ramos
No dear, I tried to log in my account at http://forum.livingwithataxia.org/groups with user name and PW. But it did not open. Message appears Wrong PW/Username. What instructions I have to follow. Pl. guide me.
Your user name is your email adress, not your screen name.
But how did you post this if you couldn’t sign in?
Seenie
Belonged to this site for a while but my first time commenting. I was diagnosed with cerebral ataxia, atrophy, a few years back, after I was having balance issues and speech problems. People around me would comment to other family members asking if i had a stroke. My doctor about five years back saw the scan of my brain and said their was nothing unusual, well my symptoms got worse over the next couple years then went then went to neurologist where I was then diagnosed. I walk with a cane and I have a walker readily available when I need it. My speech it really bad, talking too low and fast and I often need to repeat myself, which to me can be quite frustrating, but I need to understand its something only I can fix, I did take physical and speech therapy but it is still hard to concentrate when trying to say something. I moved from PA to OH to be near the Wexner Clinic and have an appointment next month to see the specialist, fingers crossed, not sure much more then can do then prescribe more physical and speech therapy. Anyone else have any suggestions? I now live near a relative with a pool so if I can get transportation maybe I will try the aqua thing.
Hi. I also have ataxia and msa
I now need a walker or scooter all the time ,
Cannot get into or out of a pool w/o
much assistance. Can no longer drive.
BUT every day is a great day! It is always better to be seen than viewed!
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I have the same issues (diagnosed in 2012). Had a stroke at 49 so there were MRI imagines to compare.
New MRI showed what looked like a small crater in my cerrabellum, which I was told, controls the level of dopamine in your brain.
My Neurologist specializes in Parkinson’s (there are no Ataxia specialists for hundreds of miles).
I still walk without the use of a cane, push a lawnmower (which makes me feel useful & provides exercise). My walking is unbalanced and awkward, so I usually walk at home, to avoid stares and insensitive comments.
My speech is impaired & the Speech Therapist told me my IPhone is the best way to practice my speech. My phone (iPhone 6), turns talk to text so I can see what words and letters I need to concentrate on.
Most people have never heard of Ataxia and don’t understand what we go through. My thoughts and prayers go out to everyone diagnosed Ataxia.
Debra (can’t remember user name)