Recent content by Alex123

I agree with you. With respect to the peg, as I told Pat, I do have it.

Pat, I am still struggling. My arms and hands are getting weaker. I had a peg tube installed about one year ago and there was no change in secretions. Are you more decided about the tracheostomy?

I have a regular bed and use a wedge pillow with three pillows on top of it positioned so that my shoulder fits in the gap between two pillows and the head does not bend sideways too much. I sleep on my side to prevent aspiration of secretions. I just got palliative care and there may be an OT...

What is a baby aspirator?

Thanks Tillie and Laurie, I will pay more attention to the position of my head while sleeping. The reason I asked about medicines is the fact that even the position seems to contribute, being asleep seems to be the main trigger.

I have a totally paralyzed neck and drop head syndrome. During the day I have to hold my head and I use several things to do that but I don't feel stiffness, numbness or pain. But after falling asleep, shortly after I wake up with that sensation. Some times it is very bad. I don't know What to...

Tillie: Neck braces didn't work for me, I built my own device from stuff in my garage. Posted it here: https://www.alsforums.com/forum/tips-tricks-gadgets/32224-probably-better-solution-weak-neck.html Alex

Hi Bob, thanks for keeping us posted about your condition and the effect of Botox. I am in a tough situation now. My lung function has been reduced a lot, my secretions make it harder to breath and now I have a "dropped head syndrome" and I my arms are semi-paralyzed. I have been told that I...

No, I didn't. Thanks Greg, I'll try. Alex

When everything else fails doctors recommend Botox injections to reduce saliva. My understanding is that Botox does not reduce other secretions coming from the sinuses, or from the lungs. I wonder what your experiences are with it as a PALS or CALS.

Pat, are you on a trach or considering one? I am sorry if you already explained that. Alex

Thanks again tc for all the time you have taken in answering my questions. Your information is very useful. With respect to the suction device, I do have one but when I tried it didn't seem to work. It may have something to do with the tip, because the one that I used at the hospital when I...

Is it possible that the elbow got dislocated? That is what happened to me during the night on my knee, and 8 hour later I accidentally pushed it back in place. But I don't know if that can ever happen at the elbow. Alex

Thanks Gil for your advice and sorry you and your family has been going through this ordeal. As in California they have approved the law that allows for assisted suicide, I am contemplating that option too.

Thanks TC for your response to my questions and sorry for having taken this long to respond to your post. But I am not feeling good these days. 1. The glycopyrrolate I tried some months ago but while it reduced secretions, it made them thicker and harder to remove. At that time it did not work...