If it counts, I want to say Aya Kito. The reason is because she's one of my heroes. She was diagnosed with something called Spinocerebellar disease. It affected her cerebellum, leaving her paralyzed from head to toe. Basically, she was trapped in a body that wouldn't work anymore, and it progressed slowly, eventually killing her. :/
Why is she my hero? Because despite this horrible disease, Aya kept writing. It didn't matter if she was no longer capable. She continued forcing herself to write in her journal almost everyday as the disease worsened. She never gave up, especially when she knew she wouldn't be able to do things others could do.
She died long before I was born, and I consider her to be someone historical and inspiring. If you are interested in her, just look up Aya Kito, and you will find tons of information. However, there isn't much I can offer about the disease itself. There's a drama and a movie based on her story. Both are in japanese, but you can watched them subbed. It's sad, yet it's very touching.
This video is from the Japanese drama, and it explains what Aya Kito went through before she passed.