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I thank everyone past and present for all the information and support provided on this forum. This forum was my lifeline and best source of information. My love passed a year ago this October and it tears my heart out every time I come back now. I think I was numb for so long but it keeps...

I cried a little the day he was DX'd and last week at Arlington National Cemetery as he was so beautifully interned. That's it but I'm surprised at the anger I feel over little and big things. I'd been mostly numb, doing paperwork only enough to deal with "must dos" but mostly just trying to...

Friends had been planning a get together in Palm Desert for the 3rd week in January. I had committed to go but as it got closer I was getting cold feet. I have learned going somewhere, anywhere is good for me so I made myself go although I was preferring to stay home isolating in my pajamas...

Because of the intense care of my Jesse for his last year, our nurse said when he passed it might take three months for reality to hit. It's hitting me hard at 2. At first I was relieved and so busy and catching up on rest. Now I have trouble focusing, going out, attending to paperwork. I have...

Am I the only past caregiver wishing I could meet a bunch of you in person? Thinking about a get away somewhere (I'll travel) where we could just get together and share experiences, tears and laughter. Sherry

I wish I had a checklist of what/how to take care of now. If anyone has one please post it. Sherry

I got my deepest wish, it was peaceful! Jesse passed last night. Sherry

This is so hard right now. Not sure if it's from medications or the disease but Jesse has become paranoid and delusional. He wouldn't let me give him a suppository yesterday because I "didn't do it right" and insisted I call Hospice nurse to do it although I had done it many times. When she was...

As my pals is progressing so rapidly I am beyond frustrated at the treatment he has received at the Prescott VA. His less than a year old hospital bed and his less than two months old air mattress were not working correctly. It got to the point that his bed would raise and lower only and I...

Thought I posted this last night but I can't find it. Wondering if anyone has seen any data on pALS that were older when DX'd have faster progression? I seem to see that in my pALS and some of his older friends. Don't think he'll make two years. Sherry