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.
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!