My morning ritual is unusual. First I wrap elastic straps around my body. Then I slide twenty electrodes, one by one, under the straps. I plug them into my TDR68. When all are plugged into the unit, I turn it on and begin dialing up the current.
At first bugs race across my skin. I continue dialing up the current. My muscles, fed by the electricity, begin contracting. I increase the current more, forcing a tighter contraction. I keep dialing the current up, to as much tightness and pain as I can stand. That is where I leave the dial. For the next half hour it is ten seconds on, with very intense contractions and a total body squeeze, followed by ten seconds off, with no electricity, no squeeze, and no pain.
For fifteen minutes each morning I subject myself to rather intense pain. No, the FDA has not approved the use of these devices in multiple sclerosis, or MS. Nor are there any published studies about electrical stimulation of the muscles for patients suffering from M.S. I use it anyway. A year ago, I needed either my scooter or tilt-recline wheelchair. I was still working full time at the, but by evenings I could only walk a few steps, using two canes. I knew it would not be long I would need to use a scooter even in my home.
I am a physician scientist, and associate professor at the medical school. I sit on the institutional review board at our university, and review scientific protocols week after week to ensure the safety of the study, and prevent harm to the people who agree to participate. I believe in using science to prove the efficacy of what physicians do. So why then would I, a physician scientist, begin using alternative medicine and untested therapies?
The answer is simple. I have an ugly disease. Nothing much works for it. A few things might slow down the rate of decline. Nothing restores function once it is lost. I had already tried the first line therapies, then the second line, and the third line.
I am an internal medicine doc. For years, when my patients asked about herbal medicines, food supplements, aroma therapy and the like, I told my patients those things were all unproven, faddish therapies. But when I developed progressive MS I was humbled as I became progressively more disabled. Being a physician, I was able to pick the best doctors and the get the best evidence-based care available. I followed my doctors’ advice. I took chemotherapy, potent immune suppressants. They said the treatments might slow my decline, but nothing would restore my strength or my stamina.
First I needed a cane. Not long after that I needed an electric wheelchair. I walked less and less. But my doctors the best I could hope for was to slow the rate of my decline. It was a grim future, but I did not want to give up hope. That is when I began looking for other options. Unfortunately, there were no clinical trials in which I could participate. So, I could be relatively passive, and accept the best care provided by the best people, or I could try to find something on my own.
That was when I began studying the basic science literature about MS. Eventually I created my own theories about why disability occurs in MS. I designed a new treatment protocol for my disease and my rehabilitation based upon mitochondria and the use of electrical stimulation of my muscles. I began the intensive treatments November 2007. At that time I needed two canes to walk in my home in the evening and a scooter or an electric wheelchair whenever I left my office. Now, one year later, they sit, unused in a corner. Now I walk throughout the hospital, and can ride my bicycle eighteen miles, up and down hills.
Now I know. Recovery from secondary progressive MS is possible, using neuromuscular electrical stimulation, intensive nutrition for mitochondria, and daily intensive rehabilitation. Progressive descent into severe disability does not have to be inevitable.