Also one more thing... Sorry for being annoying! When/how should I tell my employers that I have spinocerebellar ataxia? I have medical records through the wazoo. Should I even tell them? I am not doing well in my job so they may let me go or fire me.
Laura
Now!!! you have financial help ?and go a head and file for s.s.disably it may take a while
HI, Well, things to think about, do you have vacation time or time off with pay? do you have a 401k (USA).
you will need a doctor's written statement. If you apply for SSDI you NEED to have ALL medical info. lots of paper work, even if you hire a lawyer (as I did) it can take over a year. Because I struggled thru work until my doctor told me I can not work anymore, I had seen about 7 doctors and a clear time line of when things started to go down hill. I was approved first time and in 4 months. I also had long term disabillity ins. which started after 90 days after being disabled.
ok.... well I was diagnosed with hsp in 1995 then with sca 2014 so not sure if that's enough. I have medical proof of diagnosis from 3-4 doctors. I should get approved... I don't have a 401K. Not sure if I make enough to invest. I am in deep trouble.
You may not be in trouble if you can find a room mate you like and share the bills
Hard to find a roommate. Town of Blacksburg does not have many disabled people. The one woman I know that has a disability refuses to room with anyone bc she wants her and her daughter to be alone.
It doesn’t have to be in the same town has to have good doctors and puclic trans. To get to doctor and store and were ever you can’t always depend on friends or family
Agree. But need a way to move to where I want to which is either Raleigh or Charlotte, NC. Any help you guys can give me?
Why north corrolina do you have friends there?
family mostly. my brother and his kids could possibly help me as it gets worse. or not. or just move to tucson arizona where its nice and hot. i don't know. ssi/ssdi won't pay enough.
I know for me It’s to expensive for me also to live by myself
Dear Izane,
Now! plan for the future
Your future that is !
It will not go away !
Regards Barney
Honestly, I don’t know if life is worth it. My mom doesn’t love me–she treats me as something to be dealt with. Dad and brother are kind of the same and they’re not helping. I just feel like it’s too late to change my life or try to get a job with more money etc. I’m too tired most of the time. I feel like I’m too dumb or slow to get a better job. I feel trapped and want out of this existence.
I know how you feel I don't have support eather but dont give up
Dear Izaine
Remember nobody understands ataxia but patients thereof ! And they are here !
Listening to each other !
Regards
Barney
Dear Izaine,
I don’t know what it’s like in the states, but here in the UK when you tell your employer and they’re ok with it they have to make allowances for you and you are protected by law via the disability rights act. I told my boss when I was first diagnosed in 2007 and they do accept things especially as I’m somewhat slower than a few years ago.
I wish you good luck in whatever path you take.
All the best
Martin
Dear Izaine, You sound somewhat depressed! Although hard, try to take all this one day at a time. Personally, I continued to work for three years after being diagnosed with ataxia (eleven years ago). I told my supervisor immediately about my ataxia, and then retired eight years ago, as my symptoms progressed and were effecting my ability to do my job to my standards. If you live in the US, as other's have said if you quit your job, apply for SSDI (Social Security Disability Income), as it takes a while. In terms of housing, you may want to contact your local Department of Human Services office (US again), and talk with an adult services worker, as they may be able to assist you. I know all this is unsettling, but you are not alone in your journey! ;o)