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It’s been two weeks since my husband Toby's, battle with ALS ended on June 2, in the afternoon with a respiratory therapist, RN, Chaplin, Social Worker, various other team members from Hospice, his three grown sons, my sister, and our main caretaker Kay all in attendance in our home - where he...

I finally finished reading our Tillie's book, Overcoming Loss by 1000 Deaths. Wow. I started it several times, but wasn't able to read it until I left home for my week of respite. I had to be away from ALS to read her story, and it was incredible. So honest, so intimate, so much truth. I see...

Time to lighten it up a bit. This is an opportunity for PALS and CALS to boast a bit. Share your work, hobby, and or personal accomplishments and history. This is not about finding out what caused your flavor of ALS, it is just a "get to know you" and how you "tick" section. I sold and...

So I wanted to post this because I've been hearing about and reading about detoxing as a way to slow progression. On the site healingals.org there are a number of stories of PALS who claim to have reversed als. I don't know how many of those have a validated dx, although I do know that after...

I think most of us struggle with this. Some of us had a natural tendency to too many things anyway ( I certainly did / do). Add on top of that the new things we need/ accumulate- equipment, different clothes, lots of paperwork , the PALS lessening ability to do household tasks and the CALS...

So, here's my story. In the last couple of months, maybe a bit longer, I've had some strange symptoms. Some of them coincide with the start of a new medication in clinical trails for binge eating disorder, specifically a Norepinephrine-Dopamine Reuptake Inhibitor (NDRI). Some of them occurred...

Weakness and muscle atrophy & other. 19, male. A weakness developed in my arms and legs few years ago. It was mild and only at times first, now it seems to be semi-permament, varying from low, almost unnoticeable, to extreme. Other symptoms are various pulsing, tingling, burning, they aren't...

Hello all, My name is Margaret and I was diagnosed in November 2015-onset in right foot. After reading some posts, I feel blessed I received my diagnosis so quickly. (First Dr. Visit was July 2015.) I have read a number of posts and appreciate all of the information, suggestions and support I...

A low air loss mattress was delivered yesterday. Hubby is ok with the mattress, but dosen't want the hospital bed, so he wants me to put it on the adjustable sleep number base. The only real difference that I can see is there is no footboard to hang the pump on, but the instruction book says...

Personal Trials: How Terminally Ill ALS Patients Took Medical Treatment Into Their Own Hands an ebook I read it last night. It's beautifully written. It enlightens us about people, about science, about broken drug development processes, about ALS and families, ... I think it's an important...