I was diagnosed about 18 months ago but was having issues before that. Original diagnosis was ALS. I stay as active as possible without getting fatigued, do not over do it. I'm trying to maintain skeletal muscle with keeping up my protein while trying to limit my fats to 30%.
I started a 501c3 nonprofit to try and help in a small way to bring awareness to IBM and perhaps help fund the next study.

Sad fact is that there is not a cure and no effective treatments. Take care of yourself and do all you can to NOT FALL. Get a cane, walker, modify the house, do whatever you need to avoid a fall.

If you'd like to help with some cutting edge research the following is one option: http://www.gettingup.org

My contact information is on that site if you'd like to reach out.