How do you earn money without loosing critical disability benefits and Medicare ? So, in many ways, I am very lucky. When I started needing attendant care, I did the math and there was no way I could earn enough money, keep working, and pay for attendant care. The programs in my state that cover attendant care very strictly require an individual have less than $2,000 in assets total (including such things as gold teeth, burial plots, etc) and not be employed. If not for my father's support… read more

One day last week I asked my attendant as usual to clean my eye glasses before putting them on me. They were still really foggy...as an artist , I really rely on my vision, so he cleaned them again . Still foggy, tried glass cleaner, lens cleaner etc. After an argument in which I insisted that I was not in fact going blind, I went to the eye glass store and discovered that I need new glasses...the scratch guard wore off my glasses...now everything is foggy. I thought scratch guard was… read more

I have been suffering from a lack of oxygen in the blood for two months, and I started using supplementary oxygen and I did not feel better. For those who went through this experience, what did you do during the lack of oxygen?

Growing up, at what age did you understand or had been told you have not something wrong with you but that you have special muscles unlike the other kids? (Thats what we call connors condition, to help his older 8 yr old brother understand) connor is type 1 and is currently 7 months old. Recvd zolgemsa on halloween. Didnt finish our last loading dose of spinraza. If you currently do maintaince dosing of spinraza has it been successful for you? Pro? Cons? Effectiveness still? At what age did you… read more

Hi guys , I am 22 years old.I live in the countryside of Malaysia.I'm here today to ask a small question. but my english level quite bad, hope you all who read this post can take some patient to understand my voice.

Since I didn't have a university, I only finished my second year of high school.I have graduated for almost four years，but I never know how my future will happen .To be honest, I always thought I was an ordinary person, because I went to an ordinary high school, and I only realized… read more

Hiii! You see, I have sma 2 and my neck is a little weak, I have been looking for a comfortable headrest for a long time but I have not been able to find one. They are all too big or do not reach the back of my neck, especially because my backrest is too high and I have been told that it can not be lowered. At home I have no problems but to go out in the street or to travel by car I have to take one of those neck pillows that are used to sleep on airplanes. I would like to replace it with… read more