I have looked into this study and had a fairly extensive discussion with the study coordinator at the San Francisco site. I am posting information about this study here in case anyone is interested.
Enrollment is still open for this phase 3 study. The study is sponsored by Brainstorm Cell...
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stem cell
stem cells
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So we are being told that since my sister is on a bipap machine that medicare will not pay for hospice. Some say that they will take her but eventually she will have to come off of it since its "prolonging her life".
My question is for the CALS that have gotten hospice. What all do they do for...
Dear PALS, I've had an earlier thread regarding my mother, who's diagnosis is still uncertain. Both Laurie and Karen were very helpful. A short intro:
My mother is a very complex case and has shortness of breath, orthopnea, loss of strength in upper arms and some atrophy of the deltoid...
I just wanted to post what we went through yesterday in case anyone has this issue so you know what we did and hope that it might help someone else.
This is not something I ever thought would be a problem with ALS.
Last night my sister was in distress and we couldn't figure out was wrong, now...
Hey all,
Have only posted once or twice before. I'm the caregiver for my partner, Mike, who has been diagnosed since August 2011. He uses a power chair and a feeding tube (although he's fortunately still able to enjoy a beer every night), a sip and puff respirator as he needs, and we use a...
I use a AVAP machine at night and during naps. It works extremely wellwell and is quite comfortable. But lately I have been waking up at night and it feels like suddenly my lungs can't handle the volume of air. This is quite uncomfortable and results in the extra air forcing my mouth open to...
Hi - My name is Michelle and my sister was diagnosed with ALS April 2015. She seems to have got it pretty bad and drawn out. At first it was just her tripping a lot, then she would just fall and couldn't get up, couldn't get off the toilet or out of bed without help. As it got worst and worst...
My husband was diagnosed with ALS Jan 2018, onset symptoms started Feb 2017. He first had cramping in right calf muscle then foot drop. His right leg started wasting away shortly after and he lost 40-50lbs within months. He began to have trouble breathing in Aug 2017 just 7 months after onset...