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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...

Hi guys, I am an infrequent poster but avid reader. Expression does not come easily as I've always been very private. I finally decided I'd better express some junk that's in my head and heart or I'll implode, explode or melt into a witch's pile of goo, as in Oz. After reading all the...

Hello to all. Have any of you tackled the long journey of ALS without a lift? We are surely at the point where a lift would normally be considered and/or necessary, but we are reluctant. I am still able to move my pALS around with transfer boards and a scooter. He has no lower body strength...

During physical therapy this week, both therapists were surprised by DH’s BP and pulse. These have been perfectly controlled since a heart attack in 1993 with no ‘events’ since then. This week both PTs registered pulse in low 30’s … using an oximeter. ALS doc and GP both suggested checking with...

:shock: (Please forgive the length of this...):oops: Hi friends. Need to blow some steam… and know that I can do that with you — and you will still like me! : ) Today, Toby took his first BAD so-called "ALS fall". His ankle just roller over and he crashed into the dresser and fell hard onto...

Dear Cals and Pals: My Pals and I currently sleep on the second floor in a queen-sized regular bed which he has no trouble handling. When he can no longer navigate the stairs (which is the biggest challenge now), we will obviously have to add a bed on the first floor. We already have a...

I've tried so hard to keep it together these past 8 months or so ... but yesterday I started to cry in front of him and he held me quietly and said, "It's ok - it's normal ... there would be something wrong if you didn't cry. You've been doing such a good job..." OMG - him comforting me. I'm...

Hello to all who happen to read this. We went to our second ALS Clinic in Pittsburgh PA today. Once again there was no respiratory therapist present. argh. I had called several times to ensure that one would be present to check T's breathing levels since we are going to Cleveland a week from...

Hello all. Pals continues to be unable to eat much due to full feeling and no appetite/hunger. (not sure of difference) Weight is dropping. We are getting a bipap with cough assist within a few days - hopefully - and this will help to relieve many/some of his symptoms. Question: If he...

Dear Fellow CALS and PALS This is going to be difficult to write - to sort through my thoughts and fears. And too wordy. My PAL had a neurological F/U (my shorthand for .... no, not that .... follow-up) appt a few days ago. He was not due until August but something new developed and I wanted to...