Lessons in How to Cope with Multiple Sclerosis

Dr. Barry Farr
Dr. Barry Farr

Dr. Barry Farr remembers his first inkling of Multiple Sclerosis as a day when he was 20, doing push-ups in his bedroom in Mississippi and his arm spontaneously collapsed under him. There seemed no explanation for it. Many years later came another episode, a foot drop stumble as he was walking to his office at U.Va., where he was a professor of medicine, an expert on infectious disease. That time his medical advisors said it wasn’t enough info to go on for a diagnosis.

Later MS made itself felt in debilitating force, and for the last 20 years Farr has been mainly confined to his home in Glenaire.

There is fruit from his suffering, a new book he’s written, Multiple Sclerosis: Coping with Complications, a detailed guide on how to deal with the daily challenges of living with the disease. It’s now available on Amazon and at Over the Moon in Crozet.

MS is an immune system disease of unknown cause in which the myelin sheath, a fatty insulation that covers nerves, is gradually eroded and the central nervous system—the brain, spine and optic nerves—loses function. The damaged myelin is scarred hence the name for the disease. Damaged myelin results in distorted or interrupted nerve signals and a wide variety of symptoms rated from mild to severe. It is believed to be caused by an unknown environmental factor(s), perhaps a viral infection, affecting those who have a genetic susceptibility. There is no cure. Vitamin D and exposure to sunlight might be a factor.

“I originally wanted to be a writer,” said Farr, pointing out that he has become one after all. When he was 15 he broke his back in P.E. doing a tumbling run and somersault over crouching classmates. He didn’t realize it and went dove hunting with his father, a doctor, the next day, flinching from the gun recoil. The day after he played tackle football in intense pain.

“I had three fractured vertebrae, a broken back.” He went to six weeks of bed rest and wore a body cast from October through February. “I was alone the whole time. My friends went on with their lives. I watched TV for three weeks after it happened. It was implosion therapy. You’re exposed to something so much you get sick of it and quit.

“I took up reading for something to do. I started to use a dictionary. I was all alone, no one to ask. It became enjoyable to read. I started writing short fiction.

“I was very different when I went back to school, like a soldier back from combat. I was serious.  I spent more time talking with teachers and I took extra courses each semester. At graduation I was called to the stage 16 times. I had the highest average in everything.

“My Dad wanted me to be a doctor and to go to Johns Hopkins. I read the biographies of William Carlos Williams and B.F. Skinner. They both wanted to be writers. Williams wrote in between patients. Dad wanted me to see what it’s like. I worked in a hospital lab drawing blood. A doctor helps people during the day and writes at other times. So that was what I decided to do. But I fell in love with med school. I wanted to prevent infections. Louis Pasteur said, ‘When mediating a disease, find a means of prevention, not a cure.’

“Epidemiology is very precise numbers,” said Farr. “I fell in love with epidemiology and became president of the epidemiology society and hospital epidemiology at U.Va. I did 18 years until I retired at age 52 as I was becoming paralyzed. I had a chair and 18 post-docs under me.” That’s the major leagues of academics.

“The point of it is, do a good study and share it. The silver lining of my black cloud was that I never had time to write and then I started. I was two decades into MS at the time. By watching it I had figured out some things. I had more information than most people get to see. It was in front of my face all the time. So I would change things I was doing.

“I began to think I should share what I’d found out before I died. The average age of death of MS patients was 60. That was where I was. I was working on a novel and I thought I could do both. But the books interfered with each other and the doctor side won out over the novelist side. In science you don’t just do the thing to know it, but to share it. You don’t want things to die and not pass on.”

Farr has published 167 articles in medical journals. “Each is one thing we are sharing. Science goes in little increments. It adds up to mosaic where you see how things work. I felt so committed to sharing.”

One example is dealing with pressure sores, wounds to the skin that infections can get started through. “Bacteria are just trying to eat you,” said Farr. “I was being driven crazy by the pain of pressure sores. I could not stand the pain. I tried standing for hours. That was better for my butt, but my left leg got worse. My right leg was doing all the work. I began having restless leg syndrome. Your leg does not want to stay where it is. It wants to jerk away every 15 seconds. You can’t sleep with it.

“I tried standing on one leg and stretching. I had to stretch at least twice a day. But I never took a drug and I could sleep all night. But I had to keep adding stretches. So I had to start sitting.

“I found companies that make alternating air cushions. All they had was testimonials, no study. Other studies were air cushions against no air cushion. I called the two companies. Aquila Corp of Holman, Wisconsin, and Ease Cushion in Paradise, California. It was just my butt and the two treatments alternating. What works best?

“What I found was astounding. The Aquila never caused me an infection. You can feel the blood flow more. I kept the other company informed. I suggested he reprogram his cushion. I had no infection for six months, then when I switched cushions I got an infection. I ended up with seven infections on the Ease Cushion and none with the Aquila. I got no infections in 12 months. This cushion gave me joy.

“MS patients fall a lot and break bones. I had 200 falls and broke bones 30 times. Rib fractures are common. Like alcoholics, MS patients have to use their chests (they can’t use their legs) and it puts a lot of stress on your chest. I would pass out and fall and break more bones. There were two studies of using lidocaine patches for rib fractures, but they disagreed. I wanted to try it. But insurance would not pay for it.  So I paid for one and the pain of rib fracture completely disappeared. It ended pain even after the patch was removed for a few hours.  I reused  a patch on a back rib and the pain disappeared in 20 minutes.

“I wrote to the Journal of Epidemiology about the flaw in the University of Michigan study and its expectation about pain. The untreated rib in the study was still in pain and therefore there was no reduction in pain medicine.”

“So after this I decided to write the book. One thing led to another. New observations came up. I kept adding chapters and doing more research in medical literature. It ended up being 400 pages. I was pleased with what I did and I enjoyed the blood, sweat and tears. Your entire life affects what you are doing. I’ve got Shakespeare quotes in there. I wasn’t forcing it. It just happens.”

The book, which took three years to write, was published by Archway Press, part of Simon and Schuster, but it is self-published. “Publishers don’t want anything said about traditional medical treatments,” Farr explained. “But I had to say something negative about treatments that don’t work. As with urinary tract infections—cranberry juice does not work. I can’t live with concealing things that I know. Healthcare workers need to see this. This is different from what they’ve heard.”

The book has 67 chapters dealing with different topics, including things like attitude, plus three appendices and 45 pictures, some showing patients how to stretch and use their bodies.

“My book tries to deal with the realities of chronic complications,” said Farr. There are a bewildering diversity of manifestations. Each person’s MS disease is different. It can cause anything the brain or spine does to go haywire.

The cover image, Edvard Munch’s The Scream, is meant to express how a patient feels with MS, Farr said.


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