I have a shocking morning ritual. It is a painful process. First, I wrap elastic straps around my legs, chest and waist. Next, I moisten electrodes. Then one by one, I put them over the muscles in my left leg, belly and back. As I turn the dials, electricity flows into my body. Bugs start racing across my skin. Next, the electricity causes the muscles to contract. Then I squeeze every muscle in my body. It hurts less that way.
The above is an excerpt from my audi0 book, Up from the Chair, which is a series of essays about my experiences and observations from having a chronic disease. I am an author, artist, mother and an associate professor of Medicine at the University of Iowa. I am also a patient who has had secondary progressive multiple sclerosis since 2003.
I received the best care available. But progressive MS is an ugly disease, leading to severe disability.As I became more severely disabled, I studied the basic science MS literature. I devised my own theories about what caused the progressive loss of function in MS and tested them upon myself. A year ago, I was wheelchair dependent. Today I walk throughout the hospital, and again ride my bicycle. I am like Paul on the way to Damascus. I am not the same person, nor am I the same physician, nor am I the same parent.
I have written the case report, describing what happened to me. I am working with colleagues to follow up my experience with a small research study. We need to know if my experience can be replicated in others. Science is slow, methodical, and must go step by step. It will take us a year or more to confirm this will work in others.
Here I will write about my experiences, observations and theories about medicine, mitochondria, family, and about life. There is much to share.