Aloha Frank

Hi Anne. I too experienced uncontrolled drooling and total loss of speech just a few months after I was diagnosed with bulbar ALS in March 2020. Like you, I was embarrassed whenever I drooled and often didn’t realize it until it dripped down my chin. Now I wear a bib, even at night. But the good news is my doctor prescribed HYOSCYAMINE SULFATE…[Read more]

You are absolutely correct Kathy. I am a bulbar pALS and continue to experience a very rapid progression of the disease. I have not experienced signs of depression because I accepted my fate from the beginning and know that feeling depressed will only make things worse, not better. It is what it is, no point whining about it. I prefer to focus my…[Read more]

Good Lord, setting a goal like that is merely a weak attempt to fool people into believing that making ALS ‘livable’ nine years from now is attainable when we all know it’s nothing but pie in the sky nonsense. Nothing has been done in the last 100 years to come up with anything close to reaching that imaginary goal, so what makes them think that…[Read more]

Right on Richard. A Lack of Support says it all. Don’t count on any improvement during our limited lifetime.

Hi Russell. You may be jumping the gun on the possible diagnosis. While there is definitely something going on, it may or not be early symptoms of ALS. When I first experienced symptoms a year ago I noticed a weakening of my left side, plus a very slight problem speaking. I also began to feel tiny little twitches on my left arm and leg, which…[Read more]

Hi Cindy. Sorry to hear about the terrible pain you are now experiencing. I am a year into my diagnosis and am progressing very quickly, having already lost use of both legs and all of my left side. I cannot speak and have a difficult time eating and swallowing. My right arm/hand barely function so I can type using the ‘hunt ‘n peck’ method, but…[Read more]

Hi Richard. I agree with you 100%. I too am more concerned with quality of life than life expectancy. I understand that others may have a different opinion and that’s okay. But for me, if there is zero quality of life then there is no point suffering with this horrible condition any longer than I have to. I’ll be 76 next month and had a great…[Read more]

I agree Astrid. Surely there must be some form of assistance to enable at least some limited use of a limb lost to ALS. I’m surprised there isn’t anything available, at least nothing that I’m aware of. Lost total use of my left arm and leg months ago. Would be great to have at least some use of both. I know I’m losing use of my right side too. Not…[Read more]

Hi Richard. I’m hangin’ in there day by day, but I see nothing but quickly fading stars out there and know they will all eventually fade away into total darkness while I sit here and continue to suffer with this dreadful disease. I see no logical reason to prolong the inevitable. The sooner I leave the building, the better.

Thanks Victor. I agree. Without any ‘quality of life’ what is there? Nothing but suffering in misery for months or years until you die? Makes no sense to me. I’m ready to go right now.

Hi Kathy. Yes, all we can do is try to get through every day as comfortably as possible and be thankful for loved ones and caregivers who do their best to help us day in and day out. God bless them. I don’t see any reason to hang on to false hope when we all know that our future will only bring more pain, suffering and misery. That’s no ‘life’ for me.

I agree that the quest to live longer with ALS is pointless if the quality of life is zero. Not only does one with advanced ALS have to suffer with the disease as it continues to worsen day by day, but the burden others have to endure caring for your every need 24/7 is cruel. There is a huge difference between ‘life’ and living. I am well into my…[Read more]