ms-weekIt’s MS Awareness Week, time for my annual MS psa. As many of you know, my Bookman was diagnosed with MS a little over three years ago. Aside from his initial exacerbation that took us to the doctor in the first place (double vision in one eye), he has had no relapses. For this we are blessed.

However, no relapse does not mean that he feels as though there is nothing wrong. He has clonus in his right ankle which sometimes causes him to stumble because he can’t pick up his foot. This past year he has also been coping with some major fatigue issues. He is very often tired and needs extra rest to recover his energy. Sometimes an hour or two is not enough. Sometimes he needs a whole day or two of not doing much of anything to recover from a regular work week or sustained exertion. Even then, he does not feel completely rested.

Nonetheless, he walks five + miles a day five days a week compliments of his job at the airport where his bookstores are spread out seemingly at the ends of the earth. And we continue to take ballroom dance lessons twice a month.

MS research has given us hope this year that maybe someday there will be, if not a cure, a way to stop the disease from progressing. Stem cell research has produced some possibilities and there has also been success in the lab with a “vaccination” that actually reverses the damage MS does to myelin (the protective layer around nerve cells that MS destroys).

Currently in the United States, there are about 400,000 people with multiple sclerosis and about 200 more are diagnosed each week. Worldwide, MS affects about 2.5 million people. One of the most difficult things about MS, along with its unpredictability, is that very often people with MS don’t look sick. If you met my Bookman you would never know he had a potentially debilitating chronic disease. And because the nature of the disease is a cycle of relapse and remission, someone who is walking with a cane today might be able to walk unaided with only a slight limp next week and vice versa. Both the unpredictability and “invisibility” of the disease make it difficult for employers, family, friends, and government policy makers to understand.

I always thought it was curious that the MS Society chose walks and bike rides as ways to raise awareness and contributions. But over the past few months one of their new tag lines, “Move It,” has begun to make sense. MS affects a person’s mobility. When a person loses mobility her ability to do the things she used to do is affected. By encouraging us to “move it” in walks and bike rides we are being asked to use our mobility to help find a cure for an immobilizing disease.

My Bookman started volunteering a few weeks ago for our local MS Society chapter; a couple hours in the morning on Fridays when they have work for him to do. He loves it. He says their office is so calming and it is nice to be around people who understand how he feels and what he is going through. He feels like he is making a difference for himself and for others.

We are working to make a mark against MS. If you feel so inclined, please “move it” and make mark of your own. To learn more about MS, click on the graphic at the beginning of this post.