frankb

I have been approved for social security disability. I will start getting paid in December. The VA has not yet approved my claim, but I should hear something soon. My right arm is getting really weak as of today. I go see Dr Donofrio on July 19 at Vanderbilt Medical Center in Nashville. He is an expert on ALS and there is an ALS clinic at Vandy which I intend to become a member and take advantage of their services. What do you know about power chairs. Everyone seems to need one eventually. I was certainly not looking for my right arm to get this weak yet......has me a little worried about progression....I was hoping to experience a rather slow progression pace, but now I am not so sure. .......Keep in Touch.....cheers....fp

Hi frankb. Well, my progression was fairly slow for the first year. Things have speeded up in the last few months. I use a wheelchair full time and have little use of my arms. I'm still able to eat soft foods and use lots of high calorie supplements like Carnation THC. Ive resisted a feeding tube but should probably just do it Speech is slow and thick but I manage. I get bouts of "poor me" every now and then. I blame my progression on the dex trial, even though I know it's nuts. How about you?

Frank, the best thing you can do right now in terms of VA benefits:
1. get your PCP to order a PT and OT consult. You need to start discussing what equipment you will need. You want equipment to be at your house BEFORE you need it.
2. Go ahead and get your ID card for base priviledges. Don't forget that purchases are tax free! I'm not sure where the nearest base is, but once you are in the system, you can go to the online Exchange.
3. See if you can start the process for the SAH (Special Adaptive Housing) Grant. This takes a very long time - in most cases, over a year.
4. The minute you start to feel any decline, put in a request for another C&P.