Anything I can do?

Well, I finally got my official DNA test back. Positive for SCA1 ( which I already knew, I just needed confirmation on paper ).

I know I can apply for disability now, under the Compassionate Allowance, but it take 2 years to get any sort of medical help.

I don't believe I can go 2 years with no PT or OT. I have a severely bad back, so doing normal strengthening exercises for my legs and such, can throw out my back in a second. I need water therapy.

Is there anything I can do to speed up the process of getting medical help paid for?

I won't be able to walk in 2 years by the time Medicare or Medicaid kicks in so it's kind of like " what's the point then " ?

There is a study running for riluzole as a treatment for hereditary cerebellar ataxia. On the FDA webside it is indicated that the study is actually looking for participants. With your diagnosis you are surely under the group of patiehts they look for. When you participate in a study often the tested medicament is free for you...

It might be that this study does not recruit participants any more. But in this case it might be that there will be a next study with more patients - a phase III study. Maybe they would tell you how to do a next step for getting the medicament in the frame of a next study; need not be in Italy...

This is a report of the earlier study they did some years ago. Some SCA1 patients involved - with success! They have won more than 5 ICARS points within 8 weeks in the first study; symptoms became better.

This is the webside with the announcement of the actual study:

This study tests the riluzole medication for a longer time period. Will the results of the first study become even better? (Or not).

If you would try to contact them, i think this forum would be interested to learn about the informations you could get there.

Kind regards,


Hi Kat,

Do you live in the US? If you do. I don't understand why it would take so long. My disability took 6 months to kick in. But in the mean time. I did PT and OT. I did lose my apartment because I had to wait 6 months. I guess I just understand the 2 years. Good luck. Sorry I have nothing to give.

I don’t know about geting medical. But I do know u can do what’re therapy yourself if the city u live in has an indoor pool you can go and do workouts in the water your self. I love to swim I stand in the water that’s up to my neck and try to run bc every time u take a step you build your legs.

Thanks everyone. I do live in the US, and it's not the disability MONEY I'm worried about getting. That will be a given. It's the MEDICAL help in the form of Medicare or Medicaid that I am wondering why they won't give us before 2 years if we're on the Compassionate Allowance track..

Or the one year if I can get them to do it retro active.

Kat. Can you get anything like State aid? See I can because I have a child. And I make no money. I think it might depends what State you live in. I hope you can get something. Life is hard enough.

I was told by my local Musc Dyst Assn there's a way to have your situation reviewed and possibly receive help. Here in Missouri, my doctor writes a letter or a script. This is provided to MDA along with a release to review your medical records. Hope and pray this helps.

Lori, no, I don't qualify under our State. My kids are grown.

SPCNEC... I will look into that.

Thanks again to everyone. It's going to be an uphill battle but I can do going uphill ok.. it's DOWNhill I fall and bust my tail!

People that really need help from the State. Cant get it. Because they allow so many low life's on it. Im sorry.

Sorry for asking. I am missing a checklist for infos about which details regarding my biography, symptoms etc. should be included in an application for disability allowance. Has this been deleted? I wanted to copy it for another reason: For my first neurological consultation in a new hospital ambulance. My past experiences have been disappointing because there was not enough time for the doctors to collect all the important fact, and afterwards, there was so much nonsense included in the report -paper, like i would not have finished my school studies and the doctor doubts if i would have studied law (he even did not ask me,only doubted in silence, and then written this on the paper..) So i am planning to write a sort self presentation and present it to them this time. This - supposedly deleted paper would have been very good for that as a check list. Thanks in advance!

Also i do not know who had posted this very precious list. Could you please be so nice and send it to me by email? ■■■■■■■■■■■■■■■ ,when this is not wished to be read in the forum..?? Thanks very much.

i would try to join a pool, wear rubberized water shoes so you don''t slip and do water therapy. i am also looking for a disabled accessible pool if there are any?? i have sca2 and i applied for disability back in 2003. good luck. i've never heard of disability making exceptions.


You have ataxia. Why would disability have to make exceptions?

I received my disability in 6 months, and 6 months later I received my Medicare. It just dependson who is helping you with your ssdi. If you are seeing a neurolist now, maybe he\she might still treat you while you are waiting. Mine did, which was a blessing. I too live in the U.S. Good luck to you.

Hi Kat - Like Lori mentioned, I’m not sure if medical benefits depend on which state you reside in. At the time of my cerebellum issues, I didn’t have insurance and went on Medicaid (in the area where I lived, had a very backed-up system) - and was approved for Straight Medicaid which covered most of my PT, OT, Speech Therapy, Surgeries, Hospital Stays, etc. as I understand it.

A friend of the family was working with someone from the government at the time and was able to speed up some things, and I had an army of people helping with the insurance-end of things, so I really “lucked out” (that terminology kind of gets under my skin); I know first-hand how annoying the insurance part of it can be. Hang in there. In the meantime, are you able to do some resistant training (to build or keep your muscle mass) and cardio. work before your insurance kicks in?

I currently owe 10s of $1,000s just for some additional PT, OT, and Speech - so the medical payment plan could pay for a lot of cute shoes - but I try not to focus on that.