Jeanne, Barbie and Donna, thank you for the kind words. If I can give someone strength and /or information to keep helping their PALS, I know in my heart that my PALS (also a Diane) will be smiling at all of us.
She had told me that if she could survive this, she would dedicate herself to helping others learn about ALS and how to care for a PALS. So, maybe I'll just jump in and help her help others.
Jeanne, Diane's pain was from all the bony prominences she had. She was litterally skin and bones, no other way to say it. Her main source of pain was her tailbone. We used duo-derm patches and lidocaine patches, and alot of Calmoseptine. We would keep her on her sides mainly, going left to right.
With her being on her sides, her hips were very sore and painful; also her shoulders. An absolute must part of putting her on her side was to insure that the pillow behing her for re-positioning was from the waist up, so her tailbone had nothing behind it. And I always ensured that I "pulled" her shoulder forward a bit, so she was not lying directly on it; it's kinda hard to put in writing. But you all probably know what I mean....
Her neck was a constant source of pain. Unfortunately, most of it was from caregivers being too rough; forgetting that she could give herself no support and her neck must be cradled at all times. That's where the Bed Buddy (
http://www.walgreens.com/store/product.jsp?CATID=100111&id=prod16156# was invaulable. Moshi pillows were really good too.
We used alot of fleece material too. We covered the pillow with it. Another big issue was her ear getting red and sore. Too many times, she was placed on her side with her ear "flopped over" and it became very sore. The fleece helped. We also had her lying on fleece. She also had the memory foam on top of the mattress.
We used the fleece on her chair too, to elevate one hip, or both, as she requsted. Also to just pad her everywhere we could. Those bony prominences were such a problem.
A special time for her and her sister, who came one week every month from Florida, was when she painted her toenails and fingernails. She would soak her feet, rub them, cream them, paint her nails, always with cute little stickers..... Anyhow, her fingernails would dig into her legs when you placed her arms crossed in her lap while in the chair. Again, a piece of fleece would solve that problem.
I also wanted to add here a link that Al provided on another forum here.
http://www.living-with-als.org/Diane/ I visited this just quicky and am sooo impressed with the information provided on it. I intend to review all that information in the next day or two. Jeanne, this site has a bit on ALS and the mis-nomer that their is no pain.
Talk again soon! xo Karen