"Who Moved My Cheese?" by Spencer Johnson

How do you handle change? I recently read the book "Who Moved My Cheese?" by Spencer Johnson. The most important things I learned were to anticipate change and find a way to enjoy what happens.

There were four characters. They all found a great store of cheese which eventually disappeared. Sniff went ahead, sniffing out possibilities, until he found more cheese. Scurry went ahead without looking until he found more cheese. Hem kept hoping the cheese would reappear, but he eventually realized he needed to go out and find something new. Haw refused to leave the empty site of his beloved cheese, insisting that things would get back to normal.

Having MS has "moved my cheese" more times than I can count. I have had no choice but to move forward and find new ways to do things, new ways to pursue my goals. When my mom was here, she was great at sniffing out what needed to come next. I'm not great at predicting but I'm excellent at adapting.

And it was Hem who discovered that picturing a positive outcome helped him face the changes ahead. I'm trying to do that now. There are changes that my disease may cause that I greatly fear: losing all movement, losing the ability to communicate, and needing so much physical care that a nursing home facility would be my best situation.

If I can't move or communicate, I hope I will find a way to live happily in my thoughts. If I need a nursing home, I hope I can create a space within it where I could be happy (photos of family and friends, great art, comfortable computer set up). I hope these things won't come, but if I can picture them with happiness I think I'll be okay.

Face the changes ahead with a strong heart and spirit. You will be okay, too.

learn to listen

Listen to your #body. If something doesn't feel quite right, it's worth taking the time, even postponing plans, to be sure you are #healthy.

prevent

RE: preventing osteoporosis, non-ambulatory women

Dear doctors,                                                 

I have a concern that I wanted to bring to your attention. There's no way to change the situation for me, but maybe it could be better taken care of with future patients.

Within the last year, I was diagnosed with osteoporosis. Dr. K had been concerned for years about my lack of weight-bearing, but I did not know how to help that.

I wish that someone had told me about standing frames while I was in rehab in 2007. I think that might have helped prevent my osteoporosis. I also wish that we had done a bone scan several years ago. I have been non-ambulatory for 15 years. If we had screened earlier, we might have prevented the problem.

I wanted you all to have this information. Maybe the use of a standing frame could be suggested to women who cannot bear weight. And perhaps bone scans could be done for women after five or 10 years of non-ambulation.