What do you do when you can no longer work and need help living day to day? What resources are available? I don't want to go into a hospital. I don't really know anyone in my life that I can rely on.


Apply Soc security for disability SCA falls under their compassionate allowance rule. If you don’t have enough work credits to get that if your income resources under 2,000 month apply for SSI through soc sec
If you don’t qualify for these check at local hospital financial aid dept apply for their charity care or hospital district program so you can get medical care n also apply for Medicare. Through SS. It takes two years Medicare use hospital district til then. I am wondering what to do also so maybe someone will have more ideas.

I think it depends what type of ataxia you have, and which country you live in.

My sister is 77 and lives alone. She has SCA type 6, the same as me. She can cope at home, but has a friend who accompanies her if she needs to go out. I'm watching what happens with her, as it will probably happen with me, too.

Don't know where you live but I am in Texas and have a provider who comes 6.5 hrs a week to help with cleaning, cooking, personal hygiene, etc. Right now sweeping & mopping are the biggies for me but she has helped w/ cooking laundry and changing sheets on bed which is hard for me. She is paid through an agency called DADS-Dept of Aging and Disabilities. Dr had some input and we are very low income and over 65. If you are in US see if your state has similar and call to find out rules there. It helps you live at home.

I have nothing brilliant to offer beyond what was wisely advised above, except that maybe you can offer a local college/nursing student, free board in exchange for some help. I had a relative , who was bedridden as a result of a horrible car accident, who did that quite succesfully. Also try to post an index card with your needs on the wall/bulletin board of your local church, synagogue or mosque. Religious people are good when it comes to causes of this nature. You are not alone.. N

I agree with the advice, make an appointment with your local SS office. Hopefully you will get a nice representative. Ours helped us fill out and apply for the programs we qualified for. I think the key is if you qualify for SSI. Once they approved our son, you automatically qualify for food assistance and long term care. Colorado has a program called consumer directed assistance support that gives us a budget to hire housekeeping, home care nurses and other needed help. It has really helped us.


Thank you for all your input! I have been working full time since 2007 but worked part time for the same company from 2003-2007 so essentially over 10 years of working. I am still capable of working and will continue to do so. I am currently trying to find an apartment and it's difficult where I am. Really expensive--essentially half my salary. My hope is that my brother buys a bigger house with a bedroom/bathroom on first floor and I can live with him and his kids. I just need stability.


Is there a reason we cant tell what country or state the person were talking to is in. It might save a lot of typing for nothing if you are giving bad information or info they cannot use.

Oh I'm in Virginia...

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.


I told my employer, it was a very good work relationship. But then years went by and I started to walk very bad, and move a little slower than others. He noticed I could not carry heavy boxes and I fell at work 3 times. Finally, after over six years of “what I thought, was a great employer”. They “let me go”. I collect Social Security. It was no problem getting, with my medical past. I hate how this disease effects my life, but I really don’t have a choice. I just try to grin and bear it. It can be soooooooo hard though. I wish you the best.

Do you have a handicap placard, It helps others you work with to be aware you are ailing and not just drunk.LOL Your employer should know but start with your immediate supervisor and they may be of help or have suggestions..Some places have protections for the handicapped so study up or have someone check on the laws where you live...Jerry

I’m already in a wheelchair. I was referring to the ability to use my hands/arms to do work. I am not able to go as fast as I used to.

FYI, You can click on the picture icon who is doing the posting to tell what country or state the person were talking to is in.