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I don't always get it but it's a treat for me when i do because i no longer can take anything by mouth. Makes it seem like i just finished a glass of water. It's a great feeling, brings back some happy memories.

Like your sister I'm in the locked in phase and everything is very difficult for everyone. We still have the family gatherings most holidays. What I enjoy the most about going is that we still do things the same. They have their feast, I just watch and get my feast from a can. I can follow the...

I was convinced when I started having trouble walking any distance over a hundred yards. I actually started in a manual chair from Craigslist that was very cheap but served it's purpose very well. It was always on hand when I needed it, it was compact making it easy to travel with, plus it was a...

I can’t speak for others but I definitely have some anxiety issues from time to time. Like you mine started in the bed, once I lost all function in my arms and legs I felt like a fly stuck on fly paper. Just knowing that I was helpless and alone in that bed made me very anxious. Now I’m in the...

I feel very normal except for when I go to move or speak and nothing works. Some mornings when I awake from a particularly vivid dream I fully expect to jump out of bed like I always did, it’s not until I go to move that the reality hits. Sometimes if the dream involves running or walking I’ll...

Go ahead and rent a wheelchair and have it delivered to your cabin. If you never use it then just keep it folded in the corner out of the way. If you ever do need it you’ll be so glad that you have it. I know from experience that it’s a long way from one end of the ship to the other. I wore my...

I use the cough assist machine when I think I'm going to die (hate that thing). The nebulizer to ward off early repertory virus. Hopefully you won't need either.

still here and pushing on but it's getting harder every day. be well my friends

when first diagnosed I continued on at the gym like normal attempting to do my regular workout. Didn't take to long before I had burned my legs out. Then I went to the gym in my chair and just did the upper body workout. Pretty soon after that I realized The exercise wasn't helping and from...

I am also on the bipap 24/7 I also share some of those problems. I have my wife put a little Vaseline in my nostrils with a q tip. This is helping with the soreness. Being almost bald it's not too much trouble to wash my hair with the mask on in the shower. I usually have a second person...