*Photograph taken 11/23/2016.
I have MS. During my second stay in rehab the staff thought I was in denial because I believed that they could help me to walk again. (They thought my case was hopeless.) Every day was three hours of therapy and another argument. Would I stay in rehab or would I get thrown out and sent to live in a nursing home forever? Would I stay in Israel or go back to the U.S.? Could I really walk again? My friends kept telling me I should write a book.
So the first reason for this blog is to tell some good stories. The second reason is to share some tricks I have learned along the way:
I did walk; after rehab I spent a few months in a nursing home in Israel learning to walk better and then I got on a plane to travel to the U.S.. After only one night, I was back in the Emergency Room. I was hospitalized for a UTI, then sent to rehab and to another nursing home.
Every few days I would get another infection; they kept giving me stronger and stronger antibiotics. The infections kept getting worse and the list of antibiotics that could treat me kept getting shorter. My germs became ESBL positive, which means they were able to cut antibiotics like penicillin in half; they were considered so dangerous that I had a private room in the nursing home. I didn’t talk about it at the time, but deep down I believed I was well on the way to dying.
All this happened in 2013. I’m still alive and for the most part free of infection. In the summer of 2017 I had a serious UTI for the first time in years; the germs were not ESBL positive and responded to ordinary antibiotics. This happened because back in 2013 I was sent to an infectious disease specialist in Boston who realized that the conventional wisdom wasn’t working and suggested unconventional strategies that did work.
I want to share strategies I have learned from doctors, nurses, staff and other patients, plus a few things I figured out myself. My hope is that people reading this blog will write comments about what does or does not work for them and why.
Some of these strategies involve details of personal care which some people might rather not know; I am going to use the category TMI for such posts. For example, avoid any post labeled ‘TMI’ and ‘Number 2’ if you don’t want to see details about what might help someone who has nerve damage go to the bathroom.
The third reason for this blog is that the story isn’t over.
Just as we were figuring out how to handle the infections, I fell. After several months of being lifted in and out of bed with a crane, my muscles were too weak for me to stand. Four years later, I am living in a nursing home in Israel and still using a crane.
So I still have the same questions: Can I walk again? Will I ever get out of this nursing home? I’ve lost 30 lb.; how long will it take to lose another 100? And what about the MS? I hope the unfolding answers will make for interesting reading.
Escape From the Nursing Home 