Gail Garfield

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]

Pat, over the past years of my ALS I’ve had to visit the dentist several times – – replacing a filling that fell out and having caps put on several teeth. Initially, I was so worried about choking… having to tilt back in the chair and having water sprayed in my mouth (visions of the awfulness of waterboarding!).

But I found out that modern…[Read more]

Well said, Mary. Well said. I agree that since we don’t have exact twins of ourselves, to serve as the “control,” we have no way of knowing exactly what combination of treatments and therapies work for our body. Trial and error, doing your research, and listening to your body seem to be the only guides for us.

Lynn, I have been taking Riluzole for 12 years now – – no side effects at all – -and, I’m still here 😉 …which to me, says it’s doing something positive.

How do you know that your husband’s fall was due to the Riluzole? Having ALS is a life lesson in the adage: “association does not necessarily mean causation.” What else is he taking or doing…[Read more]

From reading everyone’s responses, I think we “former fitness devotees” have discovered that we now need to make adjustments – – in duration, frequency, and type of exercise. It’s also an ego adjustment too; to not get caught up in comparing what we used to be able to do. Our bodies need daily movement… it doesn’t have to be traditional…[Read more]

Andrew, that is good news about your recent EMG and that your neurologist explained and reassured you. I’m glad our forum members could offer you insight and support. Best wishes on your road to finding a diagnosis.

Bravo Bill! You certainly are maintaining your physical activity – – along with a well-thought-out transition plan.

London Marathon in October! And hand-cycling in the 2023 Boston Marathon! Those are some fantastic goals! Go for it 😉

John, the one thing I’ve learned from reading our forum member’s comments – – is that we all have slightly different variations of similar symptoms. That said, my own experience was to have achy pain in my shin and thigh of the leg that had foot drop. This was during my first year. But the combination of medication, regular range-of-motion…[Read more]

I agree with you Trevor.
Mike – – it does take a long time for many patients to finally have a definitive diagnosis. Some see the same neurologist, but the symptoms are so slow that an early determination can’t be made. Others (like what seems to have happened to you) see numerous physicians but due to their lack of familiarity with ALS, are…[Read more]

Congrats Lisa! What a unique and wonderful experience. it’s great to hear the feedback about the director and crew. I had emailed back and forth with the director early on – – when he asked me if I knew anyone with ALS who might want to be in his movie (HA!) and he was kind and considerate then too. ………..and to be in your sister’s wheelchair…[Read more]

Bravo Pauline! I like your attitude! …and am happy to read that you were able to find the resources that helped you early on.