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Last night in San Francisco I had the privilege of seeing a screening of a new documentary of Steve Gleason's life with ALS and his success in fighting for access to speech technology for all. The man's determination and commitment to making a difference for PALs is truly inspiring. I also...

Hello everyone. I don't post much but I do check out the site often and I find everyone to be very helpful

Thank you all for all of your insights, perspectives and experiences. It is enormously helpful

Steve I have started the PWC search process-- I fear a little late-- and the process is daunting. Your post is very helpful and I THANK YOU for your kindness

Marty I am in the same...in other words, I share your pain. I am on 80 mg of Baclofen, 600 mg of Mexilitine, and quinine once a day-- it helps a lot, but does not entirely eliminate the cramps. The meds-- probably the Baclofen-- are difficult to tolerate. Even light stretched no causes a big...

Tillie---Thank you for your kind words. No bpap (yet). Seeing pulmomologist next week for follow up. He did full work up about 6 months ago and all looked good except oxygen delivery was on the low side... But that was before the shortness of breath problems I am having now. Then back to als...

Thank you for your kind words. No bpap (yet). Seeing pulmomologist next week for follow up. He did full work up about 6 months ago and all looked good except oxygen delivery was on the low side... But that was before the shortness of breath problems I am having now. Then back to als...

I have been diagnosed with lower limb onset MND--PMA or Als (18 months or so). . Profound muscle weakness and atrophy-- headed for a wheelchair soon. Huge problem with big intense fasciculations and debilitating cramps and spasms all over my body. Taking Baclofen 10mg 8x/day, Mexilitine 150...

This is my first time on one of these PALS forums and I am VERY impressed on how helpful everyone is. thank you :)