A recent Friday became another day to enter into my datebook. This would be the day I began my seventh — or was it eighth? — new therapy in three years. My multiple sclerosis is bearing down on me ferociously, and my doctors keep trying new treatments. Lately, it seems as if I am shooting wildly at the aggressor with only blanks.
All of the available drugs for MS are intended for relapsing/remitting disease. Mine is progressive MS, which accounts for more than half of all cases of MS. Right now, there is nothing out there that works to slow, much less stop, the deterioration. I am the square peg in the round hole, a neurological contortionist trying to fit into protocols to treat someone else’s MS. We keep trying them to see if they work; they don’t.
Everyone living with a chronic illness knows the hit-and-miss quality of these therapies too well. Medical research, I am told, tends to focus on what doctors see as the best bet — those for which a solution seems attainable. “AIDS will be cured long before MS,” an NIH official once told me. On this day, beginning yet another drug regimen, I felt I was wasting my time.
When I got home, though, I found a letter from a stranger in Iowa City telling me about an internist with progressive MS, a woman on the staff at the University of Iowa and assistant chief of staff at the VA medical center there. Pretty respectable credentials, I figured. This doctor believes in a different approach, one that focuses on electrical stimulation and diet.
“This is where hope lies,” Dr. Terry Wahls later wrote in an e-mail to me, “not in drugs.” I have been on heavy-duty drug therapies, including two chemotherapy cocktails and numerous interferons. I have injected myself more than 500 times. Now I was moving to a little pill. “Why do you keep putting poisons in your body?” Meredith, my wife, frequently asks in frustration. “They’re not doing anything for you.”
Obviously, Terry felt the same way. Lately, she had been losing the fight against MS, and she had moved from walking to depending on a scooter to get her around the hospital. After implementing her new strategy, though, Terry is up from the chair — a phrase she uses as the title of her new book. She is back to treating patients on her own two feet.
Anybody with progressive MS will tell you there is no such thing as recovering function. And yet, Terry’s story has the ring of authenticity.
Her routine is tough, though. “I have a shocking morning ritual,” she has written. “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 diet portion of her plan is less daunting. She recommends a diet high in leafy greens, omega-3 fatty acids (from salmon and other cold-water fish), organ meats and green tea.
Terry Wahls gets mixed reactions to her novel approach for combating MS. Some physicians even doubt she has the disease. Doctors generally do not stray far from orthodoxy. I have brought alternative ideas for treating my MS to establishment medicine as well; they have generally been met with dismissive condescension.
If the world of alternative therapies is lonely territory for a physician, it can feel like pure isolation for a sick and suffering lay person in search of answers. How sad that when I have tried alternative therapies, I have learned to not even mention to my neurologist what I am doing. It simply is not worth my time.
But I will say this: If you live with any serious chronic condition, do not look to a doctor and say, ‘Cure me.’ Instead, educate yourself, learn all you can, open your mind and trust your instincts. And keep your ears open, too. Sometimes, you’ll learn far more from fellow patients than you will from your doctors.
Also of interest: Chronic disease and the kindness of strangers.
Emmy-winning TV producer and author Richard Cohen has lived with multiple sclerosis for more than 30 years. He writes bi-weekly about living a full life with a chronic disease.