No personal experience, yhbc, just what I've seen in the hospital. The literature you found online looks very appropriate. I wish I had some better news for you, but it sounds at this point like only time will tell how much function she is going to get back. Expect some time in rehabilitation after a period of hospitalization to determine the cause, if any. I've always thought that this is the most difficult time for everyone, when you don't yet know exactly what you're dealing with and don't know how to help.

The nursing care, as you're finding out, is going to be focused on support. Keeping her joints supple, keeping her skin in good shape, keeping an eye on her bladder and bowel functions, keeping her lungs clear and her nutrition good. Ask the nurses what you can do, if you're comfortable with that. Find out what kind of diet she's on and bring stuff she likes, if allowed, even her favorite beverage if she can't get it in the hospital. Ask if you should be reminding her to cough and take deep breaths. Don't be intimidated by the environment. Ask a lot of questions (what medicine is she on, and why? What physicians are seeing her, and why? What test are ordered tomorrow, and why?). Be pleasantly insistent until you get the answers you need. On the other hand, if seven people a day are all asking the same thing, eveyone is going to hear something different, so keep a journal at her bedside and note who was there, who talked to whom, what they said, and what went on that day. It will also help your sister keep track of the progress she's making.

Keeping her mood up is going to be a challenge, as it would be for anyone. Remember that the most important thing you can do is not to talk, but to listen. Her body has changed beyond her control, so help her control what she can. Ask HER questions about what she understands about her treatment before you go to the staff. Offer her choices about what you do to help. Bring something from home that is symbolic (but losable- it is a hospital, after all) - a picture, a poster, a silly toy, a religous symbol, for something tangible to look to for strength. When it's appropriate, help arrange for the nice little things that will help her self- esteem, but you'll know what your sister likes- a manicure or whatever. Be realistic and be there when you can, and you all remember to take care of yourself- having a burned out family is not going to help and as you know, it's possible that this is going to take a while.

Good luck, I'll be thinking of her. Keep us posted.

Thanks very much, puddinghead. Unfortunately, she's in the Baptist Medical Center in Oklahoma City and I'm in Massachusetts, so most of what you say is falling most heavily on my mother and her (my sister's) husband. I'm going to try to get out there to visit, because it does sound like there will be an extended stay in the rehab ward of the hospital. They haven't identified the cause, and it sounds like they may never - from what I've read and heard from those that are actually with her, many times the cause does remain unknown. However, I understand she is not currently getting any worse, and all the literature seems to confirm that once the progression stops it doesn't start up again or continue - the unknown is still whether it can be reversed with therapy and time, and to what extent.

I'll pass on your words to my mom and her husband. Thank you again very much, and I will give any updates that I can.

Damn, yhbc, this must be terible for you, to be so far away. It sounds like you've educated yourself well.

Best of luck to all.