Curing MS: How Science Is Solving The Mysteries Of Multiple Sclerosis - Softcover

Weiner, Howard L.

Softcover

ISBN 10: 0307236048 ISBN 13: 9780307236043

Verlag: Three Rivers Press, 2005

Inhaltsangabe

An exploration of the medical community's past and present efforts to cure multiple sclerosis draws on recent findings to explain how the disease is caused, sharing current information on drug and treatment breakthroughs that the author believes will lead to a cure in the near future. Reprint. 15,000 first printing.

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Über die Autorin bzw. den Autor

Howard L. Weiner, M.D., is the Robert L. Kroc Professor of Neurology at Harvard Medical School. He is founder and director of the Partners Multiple Sclerosis Center at the Brigham and Women s Hospital in Boston and codirector of the Center for Neurological Diseases at the Brigham and Women s Hospital.

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The Monster


Over the years, I have become friends with the Israeli writer Aharon Appelfeld. Aharon was born in a town called Czernowitz in the former Hapsburg border province of Bukovina. As a child he was deported to a concentration camp in Transnistria. He survived and settled in Israel, where he has lived for the past fifty years and where he writes about the Holocaust in a subtle yet powerful voice. We have shared many cups of coffee together in his apartment outside of Jerusalem, and I have shown him the centrifuges, freezers, and animals in my laboratory in Boston. In his life and work Aharon has had to confront the human spirit gone astray; in my work I have had to confront biology gone astray. Two different holocausts.

"The disease you are studying is a monster," Aharon said to me late one afternoon as we walked in the hills surrounding Jerusalem. "You cut it here, it grows there. You think it is down, but it rises again. You believe you understand why it behaves the way it does, but you are wrong. That's what you must do, Howard, tell the story of the monster."

Aharon was right. Multiple sclerosis is a monster. The monster has finally been wounded, but not yet killed.

I confront the monster every time I see a patient with multiple sclerosis, an experience that has been part of my life for over thirty years. There are over four thousand patients seen in our MS center every year, and I have patients I have followed for close to twenty-five years. I no longer see general neurology patients. Although I have worked hard in the laboratory and now run my own large lab, I never just wanted to work in the lab; I always wanted to confront the disease face-to-face. What one discovers in mice may ultimately be crucial to understanding the disease, but it is always one step removed. I have learned from my patients by studying them directly, they are a vital part of solving the riddle of MS. Thus I confront the monster not in the abstract but in the individuals I encounter every day.

I have had countless experiences with my MS patients over the past thirty years. Some have done extremely well; others have fared much worse. There are patients who share my passion for golf and not only trade golf stories but describe their illness in terms of how the disease has affected their game or ask whether they will ever be able to play golf again. There is the woman I had not seen since I treated her for an MS attack she experienced twenty-two years earlier, after the birth of her daughter; she brought her daughter to me because her daughter had had her first MS attack. There are patients I see year after year who have done so well with their illness that I spend more time talking about our families than their MS. Then there are the doctors with MS--family practitioners, surgeons, and even neurologists, with whom I speak in sophisticated medical terms but who transform from doctor to patient in the examining room. There are fighter pilots and movie stars. There are patients in wheelchairs telling me not to give up hope in my research, telling me that they don't hold me personally responsible for not curing them. There are those who tell me we are not working fast enough. There are patients who have traveled across the country or across the ocean to see me. There are patients who participate in clinical trials and donate blood. There are elderly parents bringing in a middle-aged child, and there is the occasional child or young teenager with MS. There are patients I have stopped from going into a wheelchair or brought out of a wheelchair, and there are patients who have ended up in a wheelchair despite all I did. There are patients who come in with long lists of questions and the latest newspaper article reporting on MS breakthroughs. There are those asking advice about quack cures, and there are those with sophisticated questions. It is emotionally difficult for patients to hold their hopes in check, and it is just as difficult for myself and my fellow researchers who have to play the part of instilling hope, only to see that hope dashed when a treatment disappoints.

Over the years there have been certain moments when the monster has come into painfully clear focus. One of these moments occurred in the spring of 1999 when I stopped in Denver to visit my mother on the way back from an MS fund-raiser in Los Angeles. My mother, who was almost eighty but in wonderful health, picked me up at the airport, and instead of driving south to her apartment we headed north to an assisted living facility called Mary Crest. My childhood friend Norm Wedgle had just entered the facility because of his MS, a disease that began thirty years earlier, though most MS patients do not require such a facility.

Norm loved life. In high school he was the jokester and I was the serious one; because of this we balanced each other and found both solace and joy in confronting the early stages of our lives together. I went east for school, and he took over his father's soap manufacturing business. Norm liked business. He liked to put together deals, and he was a salesman, always pushing something, always telling a joke, not easily discouraged.

Norm had his first MS attack in 1968, as I was finishing medical school. It was optic neuritis, blindness in one eye. The blindness lasted for six weeks and then resolved. For many years Norm did well with his illness, but as time passed the disease began to take its toll. I saw him from time to time when I visited Denver, often meeting him at my parents' delicatessen. In 1999 I hadn't seen him for almost five years. When my mother told me he had entered an assisted living facility, I suggested that we visit him. His sister gave us the address, and my mother said, "Let's surprise him."

I had spoken to Norm occasionally over the years, and even though we were both now in our mid-fifties, to me he was Normie and to him I was Howie. In high school Normie had given us nicknames patterned after our body shape--I was Big Skinny and he was Little Fats.

As we approached the assisted living facility, I was afraid that he might not be there and asked my mother whether we had made a mistake by not calling or arranging the visit in advance.

"Don't worry. He'll be there, and he'll be so surprised to see you," she said. She was right.

"Room 109," the receptionist said. "Norm is in his room watching TV."

The door was ajar, and I knocked on it and pushed it open. When Normie asked who it was, I said, "I've come to see Little Fats." Without missing a beat Normie yelled out, "Big Skinny!" He turned around in his chair, and we gave each other a hug.

I sat down next to him, and we held each other's hand for a moment. Normie was dressed in a T-shirt and athletic warm-up pants. He had a full beard. I looked around the room. Next to him was a motorized wheelchair. When we were teenagers, Normie had had a motor scooter, and I spent hours on the back of it, chasing girls and stopping for banana splits at the Dairy Queen. Now Normie was no longer able to walk, but he could stand up and transfer from his chair to the wheelchair. This seemingly small act gave him critical independence. It meant he could leave his room on his own and visit with others in the assisted living facility. It meant he could bathe on his own by transferring from his wheelchair to a shower chair.

Normie still had his wits about him, and during our conversation he was quick to crack a joke. He had always been a jokester. When my mother asked him how old he was, he smiled and said, "Lola, there are only three ages. You're young, you're middle-aged, and you're looking good!" We all laughed. Normie and I were the same age, fifty-five, and he remembered that my birthday was on Christmas.

As Normie spoke I...

Details zur Ausgabe

• Verlag: Three Rivers Press
• Erscheinungsdatum: 2005
• Sprache: Englisch
• ISBN 10: 0307236048
• ISBN 13: 9780307236043
• Einband: Taschenbuch
• Anzahl der Seiten: 337
• Kontakt zum Hersteller: Nicht verfügbar
• Verantwortliche Person: Purmerul LTD; https://strengholt.nl/en/; ; 22 Liuleburgaz Str., floor 4, app. 9; Plovdiv; Bulgarien