Well my hat’s off to both you and Amanda for the job you do! I always enjoy perusing the posts and replies here in this forum, and the excellent moderation you both provide is a big part of it.
Thank you!

I completely lost the ability to speak several years ago. My arms and hands still work well enough to write and type (hunt & peck only). I primarily use a boogie board to communicate. I don’t bother to use the stylus that comes with it, I just use my fingernail to write on the screen and with the push of a button, it erases. Much better than a… Read more

Paul, I’m 5 1/2 years since my diagnosis so, like you I’m not eligible for drug trials. But like you I’ve found observational studies to participate in. Makes me happy to think that I’m contributing in some way. My list is a little shorter than yours, but includes a couple of particularly interesting studies designed to investigate disease… Read more

Hi, I’ve been on riluzole since my diagnosis over 5 years ago. I started on radicava almost 4 years ago. I’m blessed that my progression is so slow – lost my voice completely after about 1 year, got a feeding tube 2 years ago due to progressive swallowing problems but up until 1 1/2 year ago I was able to walk unaided, now I need a… Read more

I also take it in a liquid form. It comes in a liquid suspension with Tudca, which is supplied to me by a compounding pharmacy, WellPack Pharmacy in Tallahassee, Florida, for $550. per month.
Funny thing about this. I was warned that it would be very, very bad tasting. But I had no idea that something could taste so bad! I gagged on it… Read more

Hi, I spoke to my neurologist about Amylyx AMX0035. She explained that it’s not FDA approved so it’s not available. But if I was really interested, there is a compounding pharmacy that would mix up the drug constituents to make something very similar to AMX0035. However, the downside is that since this is considered an experimental drug,… Read more

I have sporadic ALS and also did frequent, intense, competitive exercise prior to my diagnosis. My disease has progressed slowly and I partly credit my condition starting out, and my continuing exercise since then. I was able to continue regular bike rides with a serious group for 3+ years. Now, 4 1/2 years from diagnosis, I’ve switched to a… Read more