ALS Support Community

HI .. I'm doing ok, but, it's hard not to be frustrated. I'll be 64 at the end of the month. Have been pretty active and I still walk and hike a lot, but the loss of your arm, shoulder, and hand strength certainly limits the life I was used to living.
I hear you on your Dads case as being an outlier, I feel the same way ... Happy to chat more ... best to you and your Dad, Hal

Dad used the word frustrating to describe it as well. I can definately understand that. Ive witnessed this from the start and ive seem the losses. He was a every day 18hole golfer in summer months and no longer can swing..He also lost the ability to drive a year ago. We live in Toronto Ontario. How about you, where are you from.?

Yeah...I was a low single-digit golfer and have had to give it up. I'm from just north of Boston but will be moving in the Fall. Heading south as cold weather makes my symptoms worse. Heading out West in a few days to hike in the Tetons. Just gotta keep moving as best I can.

Have a good trip. I agree, keep moving..its good for you. Toronto has cold winters and i know Boston is similar, maybe even more snow. Dad does find the cold makes symptoms worse as well, ive heard a few people mention that. Have you tried any if the meds? Radicava or the other Edavarone? We have not

I tried the Rilozule and it didn't like me. It works by blocking glutamate, which only helps if you have too much in your system. I didn't go with the Radicava as it required 10 days a month of infusions, but I am now trying to qualify for the new pill version. I did start taking over-the-counter TUDCA and Acetyl L-Carnitine with my Drs blessing. Being in Canada, have you discussed Amylyz's new drug?

We have not heard much about the new drug or its availability. I dont think my dad is overly interested in these drugs since they dont promise a whole lot. After the experience with ivig which was tried to rule out MMN he is skeptical. Like you radicava infusions 10days a month didnt appeal to him. Can you drive?

Just responding as I’m on a road trip with my wife…I can likely still drive, but my family has asked me not to so I have been respecting their wishes .. did a 3 hour hike yesterday going from 5500 ft elevation to 10000 ft. So far all symptoms are hand, arms and shoulders… especially difficult to do anything above chest height… I lie down to put on my shirt. You’re a good son!

Sorry… should have said son / daughter…