Allen Lewis

Hi Dagmar

I read through your post a few times and am not 100% sure whether it’s you or your husband who’s doing the driving. If, after living with als for 10-something years (am I correct there?) you’re still able to drive, well, that’s very encouraging. At 79 years driving has become very meaningful for me since it’s really the only physical…[Read more]

At one-year plus from als diagnosis I still have virtually full use of my limbs, can walk, drive etc. without problem. But I get cold sweats behind the wheel just imagining an accident or a traffic stop, because I CAN’T FRIGGING TALK! My mouth has ceased to function. (I believe it’s called bulbar onset). When I open my mouth to speak what comes…[Read more]

The reason no cure or treatment for ALS is in sight, and won’t be for a long time, if ever, is that it’s rare and non-contagious. The disease is yours and yours alone and you couldn’t give it away to your worst enemy if you wanted to. Malaria? Yellow fever? Smallpox? Typhoid? All now curable or controlled by vaccines. Even Covid 19. A vaccine…[Read more]

Been taking Riluzole about four months and have noticed a bone-crushing fatigue that sets in later in the day. I try to get in a 30-minute walk around dawn when my energy level is highest, followed by some light weight trainiing and if there’s any energy left some time on a stationary bike. But fatigue and sleepiness later in the day is really…[Read more]

I have ALS-related speech issues. Don’t know what “banking my voice” means.

Dagmar — I’m just getting the hang of swallowing, and throat clearing, before attempting to speak. I’ll give lozenges a try. Thanks. – Allen

I’m in the early stages of ALS, having been “diagnosed” a month ago through systematic elimination of all other possible causes of symptoms that began about four months ago with slurred speech and constantly wet and drippy lips. I just started my second month on Riluzole yesterday. Funny thing: since beginning Riluzole the saliva problem has…[Read more]

Well, yes, I have some feedback.  I’m having trouble navigating your site and forums, undoubtedly to my lack of dexterity and technical knowhow.  I just today read a very interesting article by Rick Jobus which touched in part on the progression of his symptoms.  And I am keenly interested in the time line he experienced, eg-occasional slurring of…[Read more]

Dagmar

Thanks so much for sharing that.   My ALS seems to have started at the opposite end of the body from yours, in the mouth – slurred speech and drippy saliva.  I think it’s what they call bulbar onset. Not a huge problem yet.  My wife says she understands me fine, and that’s all that matters.  I’m watching closely for any involvement of extr…[Read more]

Hi Dagmar

Thank you so much for your comments on Riluzole and your history taking it.  And please don’t apologize for any “long-winded” reply. You’ve been more informative and more encouraging than any of the doctors I’ve seen.  The last one concluded by saying something like there was clinically a two-to-three year life expectancy with ALS and I…[Read more]

Hi Rick

Thanks for your post.  I’m new here and sorry to say I can’t offer any info on Riluzole since that, in fact, is what I’m seeking myself.  You said your neurologist suggested the drug but I don’t think you said whether or not you are taking it.  I was only diagnosed with ALS two weeks ago and am still in kind of shock, but in retrospect I…[Read more]