A long hiatus

Hello…I’m not a new member I joined in 2016; but I’ve neither visited nor posted in about a year. So I thought it would be good for me to give a brief re-cap and update. I’ve been trying to update my profile but when I click on my avatar I don’t have the gear icon.

So in brief- - I live in the USA in Queens, New York- more specifically Rockaway Park which is a beach community.
I was diagnosed via genetic testingwith SCA3(aka Machado-Joseph) in 2015. It was completely unexpected and hit me like a 100 ton bag of bricks; but it did offer an explanation as to why I wasn’t recovering the way I should have after having spine surgery.

So now I must use a walker at all times to walk. I’ve been told that this is a slow progressive disease akin to Parkinson’s that won’t kill me but has no cure.

Well I don’t know about the “slow” part but I can certainly attest to the progressive aspects of this disease. I was so depressed (clinically diagnosed by a Psychiatrist) when I stumbled (no pun intended😁) onto this site. It was truly a blessing! Not only did I get a lot of practical information, but most importantly I got support and confirmation from people just like me!

Since my diagnosis I have experienced all kinds of symptoms and problems. My latest one is dyskinesia and slurring in my speech. So now I appear and sound drunk most of the time. I had to smile when I saw that Ataxia folks in the UK will be able to get ID cards indicating that they are not drunk. I suppose it’s a good thing I can no longer drive. :crazy_face:

I was looking into applying for disability benefits, but I don’t qualify; and won’t qualify for disability retirement for three more years. Even then, I have a lot of financial concerns.

Anyway I’m glad to be back–with my community, my people!:blush:


That all Sounds very familiar to me and good to see you back on here.

I’m glad you’re back. You say you live in the USA and want to apply for disability. You will qualify. SCA is a neurological problem and is automatically covered by the government. You just need to have the medical documentation showing you have SCA.

i live in NJ, work in NY and go to Breezy Point frequently. Ataxia is a huge surprise- I could be graphic or use cuss words but not on this site. I understand your pain & concerns. I was diagnosed almost 15 years ago & I’m still stunned. I exercise 5X a week and practice sound nutrition. It sounds boring but it’s the only way. Contact me with any questions - I’m sure you have many. BTW I wrote this note multiple times & it had multiple mistakes…

1 Like

Hello, “sound nutrition”? I thought I did everything! :grimacing: How is that method working out for you? BTW, I am a couple of towns next to you, Madison.

1 Like