Grrrrrrrrr..

that you can "toilet",Kicker, IS something to feel good about. It's often the difference between independence and a nursing home. We went through that with my husband in his last years. He could still use the toilet, although in the wheelchair full time, and could still get into bed unaided by pulling himself up. I found we could not afford an assisted living place which would help one onto the toilet...so he would have to go to a nursing home if he couldn't do it, and both the assisted living place which would help you onto the toilet and the nursing homes were too expensive for us...a shock, since we thought our income was sufficient in retirement. I was really scared...what to do?

But then he died after being unable to get into bed for four nights, and developing bed sores from sitting in the chair all night. He didn't tell me about the bed sores. I couldn't get a home-care nurse to come because it was Christmas and they actually accused me of selfishly wanting to ruin their Christmases. I didn't know he was within 12 days of death. But he fell out of the chair and the handyman called 9/11 while I was out. Needless to say, I still can't afford a decent nursing home, and they won't take you unless you are rehabilable. I cannot afford even the bad nursing home in this town which has food which would make me very sick. As of now I'm mobile, but knowing the future is bad....unless God intervenes.

I think we should look at RR (Relapsing-Remitting), SPMS (Secondary Progressive) and PP (Primary Progressive) as terms that define a disease's presentation, not a likely progression or symptom presentation.

So well said!
Thank you for this


After all there are RRMS'ers who get flares once every X weeks and others once every X years.

And there are PP/SP MS'ers who progress rapidly and others slowly.

Thank you to all for your replies! I understand it a little better!
But what is cognitive testing?? Never heard of it?

My sister was diagnosed with PPMS 4 years ago, ans she also progressed very quickly
She used to be a very bright person but now is like a child of 10,
She was married for 4 months but after she became ill and bound to a wheelchair her 'husband' left her! A week ago she watched a program called 'doctor Oz' and after the program she told me the doctor said she must go on a diet, after an hour of trying to figure out what doctor told her that, I realised she was talking about doctor Oz, how do we handle these situations? And yesterday she asked me to kill her... Seems like we have to ask the neuro to give her stronger anti depressants.

Once again thank you all for your replies, and my heart goes out to you all! Your stories have touched my heart deeply!

Here's a good article that explains it well:

http://www.nlm.nih.gov/medlineplus/e...cle/003326.htm

Sadsister, I'm so glad you came to this forum to ask your question. See, you got some answers! I hope your sister gets some help soon!

LOL kicker not much chance of making me mad with a post, crazy certainly isn`t the worst thing I have been called! Thanks for recognizing the talent!

After years of teaching Emotionally Disturbed teens, I always say it takes a lot to offend me. Seen some things..... I forget where I am sometimes and say things I've learned.