Tuesday, September 23, 2008

Courage Ride

Saturday September 20, 2008 I got on my Day Six Bicycle in Hills, Iowa to participate in the Courage Ride, which is a cancer fund raising bicycle tour. The ride lengths range from 18 miles up to 100 miles. While in the 1980s and 1990 I ran and skied marathons, I had not ridden my bike after 2001 because of progressive MS.

I had spent four years dependent upon a scooter or electric wheelchair. Last summer I needed one cane in the morning, and two in the afternoon. I had spent years studying night after night, trying to to understand why people became disabled in MS, in spite of minimal change on their MRIs. Eventually, I developed my own theories, which I tested upon myself.
Now, eleven months after starting the interventions which I had designed for myself my scooter has been parked in the corner for months. I ride my bicycle to and from work. And on September 20th, I rode 18 miles with my family. I walked up one hill; all others I climbed, slowly and steadily to the top.

When I was finished, I was tired but I did not need a nap. The following day I did my usual activities. None of this would have been possible a year ago.

I used to believe that progressive MS had only one direction - down hill. Now, I no longer believe that is the case. The traditional model for progressive MS does not explain what happened, why I am recovering more and more strength each day. So I am creating a new model, which I will test in others with progressive MS once we have our approval from the IRB, which is the committee that oversees research involving human subjects. It will take longer than I want it to for me to get all the necessary approvals, and find the money to do this pilot study. I have found a team of clinicians who are anxious to work with me to study this issue. We are meeting weekly to devise our plans, and shepherd them through the various approval processes.

For now, I walk around the medical school and the VA hospital. I delight in seeing colleagues who had not seen me for more than a year. They are stunned. I smile and tell them my story and invite them to my lecture to the internal medicine department October 6th, 2008. That is where I will present my case, and review the basic science literature to develop what I beleive is the likely mechanism for why I have experienced such a remarkable recovery. It will be an interesting conversastion.

Sunday, September 14, 2008

Progressive Multiple Sclerosis Can Be Defeated

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.