Severe progressive MS -- need help please

[MaynardMM]

Hi, everyone. My mother, age 56, has severe progressive MS. She used to come to these message boards but has almost completely lost the use of her hands and hasn't been able to type for several years. I don't want to scare any of you but things have gotten worse than I could possibly have imagined.

She was diagnosed in 1996 by a neurologist who said "I don't think you'll get much worse." She was walking then with some difficulty. She is now bedridden and has no use of her legs, and as I said, has almost no use of her hands. What scared me today is that she told me she is afraid she soon won't even be able to eat or use the phone with her right hand (the left is now useless.)

I have given up my life for her care. I am 28 and I have no life beyond this hell. I am so frustrated because I have searched the internet over and over and I can't even find information about someone whose condition is as bad as hers. For years it was too hard for her to get to the doctor but she finally had to go to the hospital last year for a colostomy because her bowel troubles had become completely unmanageable. She saw an MS specialist there who was no help at all, beyond saying "I don't think the colostomy will improv equality of life," which to me showed a complete lack of awareness of just how badly disabled she is.

NO ONE understands how bad this is, and I have no idea what to expect. I am honestly afraid that she will live for many years, completely paralyzed. Her progression has been steady and in some ways fast, but in other ways slow. I am terrified that she will live a miserable life, completely paralyzed and unable to even use her phone to call for help so she can be left alone for brief periods. As it is, I am home almost all the time. We qualify for no financial aid whatsoever, as she was a stay at home mom and can't get disability, and my dad earns too much to qualify her for social security.

I have been absolutely miserable for years, and even though I don't think anyone will have anything helpful, I just had to write this. Again, I am sure this is a worst case scenario, so I hope this didn't scare anyone.