Gail Garfield

Yes, I miss being able to take off running too. Interestingly, I use a rebounder to walk in place… once in a while I go a little faster (soggy jog!) and it “feels” like I’m running.

Yes, gulping down a glass of water. For a long time, I had yearnings to drink 7-up. Missed that tart fizzy taste 😉

I agree Maggie. It was hard for me to always ask others “please, can you help me do…?” But I’ve since found that others really want to help and feel good that they did.

I haven’t heard of the Hop on a Cure foundation (but now I know!) and I’m late to the game knowing anything about the Zak Brown Band (OK, so I don’t listen to country/western that much) but… I am sorry to learn that John has ALS. And yes, every little bit helps when it comes to raising awareness about ALS. Having a person in the public eye…[Read more]

CONGRATULATIONS – – to Lisa Cross! (Bonahoom) – – our very own forum member/actor/now in a film!…..Lisa was featured in the special article that was published today in ALS News Today! It’s all about the film she’s in, how she heard about the part, and how working with the ALS community left the director with a new-found understanding and respect…[Read more]

Richard, I believe you are mixing up facts and context in order to make your point.

Lou Gehrig didn’t say that phrase in relation to his illness, but in gratitude for the opportunities, people and experiences of his life. On July 4, 1939, Gehrig delivered his famed “Luckiest Man” speech in front of a sold-out crowd at Yankee Stadium.

A tra…[Read more]

Debbie, thank you for sharing your knowledge of these issues with us. Your past experiences working in these areas is so helpful to those of us who find health insurance and coverage so confusing.

Carolyn, you have hit the nail on the head as to what’s wrong with our Medicare-health insurance-other payors-etc. system. What you describe is the catch-22 many of us face when trying to obtain an ALS medication. grrr!

Vance, thank you for sharing your experiences and your FDA hearing testimony with us. I wonder if these questions were ever posed to you:

– You began taking Radicava and Riluzole shortly after being diagnosed in December 2017.
– A year later, in March 2018 you began AMX0035, along with continuing Riluzole and Radicava.
– You began noticing…[Read more]

Steve – – yup, I’m still using the bubble bottle. 🙂

Here is what I found on the AMX0035 website:
“Access to AMX0035 outside of clinical trials is available in the U.S. for certain adults with ALS who meet eligibility criteria for participation in the FDA-authorized Expanded Access Program (EAP) for AMX0035. To learn more about the currently…[Read more]

Hello Judy, I can find no trials for APN01 in the USA. This drug is being looked at as a treatment for COVID.

Here is a link to the company website: https://www.biospace.com/article/releases/apeiron-biologics-apn01-selected-for-large-scale-us-trial-in-covid-19/

You can check the status of ongoing and new clinical trials for ALS here:…[Read more]

I think research should be continued in the areas of physical therapy, therapeutic exercise, and movement training methods that have been successful in helping patients with MS, Parkinson’s, stroke, etc.

It seems that this topic of research has dropped off the map over the last few years. Surely much can be learned from the progress made in other…[Read more]

Pat, I’m glad to know they were of help.

Thank you for sharing your situation, George. It sounds like you are finding ways to take care of yourself while taking good care of your partner. 53 years together is certainly a milestone. Best wishes to you both.

Lisa – I am happy to read that you have found a regimen that works for you. But, I need to point out that “RCH4” is yet an unproven treatment for ALS. Also, generalizing the long-term effects of Riluzole and Radicava to only “3 months” is your opinion only…. for example, I have taken Riluzole for the past 12 years (way beyond the 3 months…[Read more]