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I just got my tube last thursday and i am already stir crazy and anxious to get back in the pool. The doctor said wait about 4 weeks. I am trying to figure out how best to protect myself from the pool water. I was thinking of taping the tube to me so that it won't dangle, covering with a six...

It's been some time since I've been able to make much of a post. I think of things I'd like to share, but then I just can't. What's that about? What is this part of the rollercoaster that leaves me not feeling. I think. I respond. I plan. But I don't seem to be able to feel. This past...

Hi, I'm a CNA doing homecare for a lady that has ALS. I've been working with her for just about two months now. I'm not experienced with ALS patients at all and could use some suggestions. I work the night shift with her so her husband can get some sleep at night. He was doing it on his own up...

Hello I wanted to post and put a little good news out there. I've finally found the perfect power chair and thanks to a living angel, was able to purchase it. It's a Merritt chair with the hand controls on the right (which I needed) and also comes with elevating leg rests (something else very...

Hi, I've been reading posts here for a week now. I've suspected syptoms as early as 6 years ago: my legs seem to be "dying", were flabby even though I bicycled every day. I had to buy a used C-PAP two years ago and am dependent on it to sleep. This winter I had a viral infection with lethargy...

My last post was in June. I inquired about persons on vents, but I became too ill to go on so I had to go in to the ER for emergency tracheostomy. It has been 2 months since it was installed and I am very confused about how the home vent has been portrayed as being a possibility that can be...