MULTIPLE SCLEROSIS
(Broadcast starting March 16, 2005)

In this hour, we explore the chronic neurological disease Multiple Sclerosis. Guests include Dr. Randall Schapiro, founder and director of the Fairview Multiple Sclerosis Center and Minneapolis Clinic Multiple Sclerosis Program; Dr. Patricia O'Looney, director of biomedical research programs at the National Multiple Sclerosis Society; Barbara Paley-Israel, a writer who was diagnosed with MS in 1986 and has become an advocate for people with the disease; social worker Deborah Miller, Director of Comprehensive Care at the Mellen Center for MS Treatment and Research, part of The Cleveland Clinic; TONY award-winning director and playwright Emily Mann; and special commentator Zoe Koplowitz, author of Winning Spirit: Life Lessons Learned in Last Place.

Host Dr. Fred Goodwin begins with an essay in which he says that like so many diseases that affect the nervous system, multiple sclerosis, MS, can be enormously variable from one person to the next. In it's early stages, MS can be very difficult to diagnose - it's often called The Great Imitator. Before modern brain imaging techniques, patients could go for years without a definitive diagnosis, often having to endure the not-so-subtle implication that they were hypochondriacs.

Next, The Infinite Mind's Marit Haahr interviews director and playwright Emily Mann, who is currently the Artistic Director of the McCarter Theater in Princeton, New Jersey. Under her watch, the theater won a 1994 TONY award for outstanding regional theater. Her plays include Still Life, Execution of Justice, Greensboro -- A Requiem, and the TONY-nominated Having Our Say: The Delaney Sisters' First 100 Years. She was diagnosed with MS in 1995.

Ms. Mann describes her frustration with a doctor who told her that her symptoms were not real, but existed only in her head. When she was finally given a correct diagnosis, she says she cried and cried, believing MS was a death sentence. In fact, she learned she could control the disease with new medications, and she has continued to work without interruption. She says she has learned how to keep a positive attitude, never thinking of herself as crippled or unable to work. Because the disease is so unpredictable, she has discovered how to live in the moment.

To contact Ms. Mann, please write to: Ms. Emily Mann, Artistic Director, G5 McCarter Theater, Princeton University, Princeton, NJ 08544. Or visit: http://www.princeton.edu/.

Then, Dr. Goodwin is joined by three guests. Dr. Randall Schapiro is founder and director of the Fairview Multiple Sclerosis Center and Minneapolis Clinic Multiple Sclerosis Program and Clinical Professor of Neurology at the University of Minnesota. Dr. Patricia O'Looney is director of biomedical research programs at the National Multiple Sclerosis Society. Barbara Paley-Israel is a writer who was diagnosed with MS in 1986 and has become an advocate for people with the disease.

Dr. Schapiro begins by describing MS. He says that the brain works like a giant computer. It sends its messages down the equivalent of wires, nerves. These nerves are housed in the spinal cord. So when you want to raise your right arm, the message starts in the brain, travels down the spinal cord, and your arm raises. The system is very efficient because it is highly insulated. This insulation coats the nerves, much like rubber coats electric wires, and allows electricity to flow effectively. The insulation is a fat and protein mix, called myelin. For some reason, myelin degenerates in some people and leaves a hardened area that looks scarred, or sclerotic. Because it occurs here and there, the disease is called Multiple Sclerosis.

Every case of MS is different, and even the same person can experience different symptoms form one day to the next. The range of symptoms can include fatigue, tingling, numbness, painful sensations, blurred or double vision, muscle weakness, impaired balance, spasticity, tremor, changes in bladder, bowel, and sexual function, cognitive changes such as forgetfulness or difficulty concentrating, speech and swallowing problems, and mood swings.

Although no one is certain what causes the disease, Dr. Schapiro believes we will learn it is a combination of factors - a genetic predisposition (perhaps inheriting a vulnerable immune system), coupled with something which triggers the disease, whether a virus or bacteria or other environmental agent.

He says the disease has been divided into categories for research purposes, but people have come to identify their own degree of illness by these types: relapsing-remitting, secondary-progressive, primary-progressive, and progressive-relapsing.

Barbara Paley-Israel then describes her own case of relapsing-remitting MS. She first began feeling symptoms in her twenties, though doctors told her she was a hypochondriac and referred her to a psychiatrist. She was finally diagnosed at age 43. Soon after, she had a brain stem attack, during which she lost all motor function, including the ability to breathe. She recovered from that attack, and has not had as severe a relapse since, though she experiences constant numbness, tingling, and pain. Recently her symptoms have worsened, and her case is now considered secondary-progressive. She will probably soon begin treatment with a chemo drug.

Dr. O'Looney offers some factual information -- about 350,000 Americans have the disease. Most people do begin feeling symptoms in their 20s and 30s, although there are cases diagnosed in both younger and older people. MS is chronic, but not fatal -- life expectancy is only two years less than average.

In response to a caller's question, Dr. Schapiro then outlines the five current treatments approved for MS in the last ten years. These medications have changed the face of MS, but none offer a cure. Rather, they stabilize the disease, slowing the progression of symptoms and prolonging periods between relapses.

Later in the program, Dr. O'Looney offers an update on new medications for MS, including Tysabri, a promising and different new medication from Biogen Idec which was voluntarily removed from the market following health concerns.

To contact Dr. Schapiro, please write to: Dr. Randall Schapiro, Founder and Director, Fairview Multiple Sclerosis Center, 701 25th Avenue South, Suite 200, Minneapolis, MN 55454. Or visit: www.mscenter.fairview.org

To contact Dr. O'Looney, please write to: Dr. Patricia O'Looney, Director of Biomedical Research Programs, National Multiple Sclerosis Society, 733 Third Avenue New York, NY 10017. Or visit: www.nmss.org

Next, Dr. Goodwin interviews Deborah Miller, Director of Comprehensive Care at the Mellen Center for MS Treatment and Research, part of The Cleveland Clinic. As Dr. Miller explains, when someone is diagnosed with MS, some of the most immediate concerns are not medical, but social and psychological.

Dr. Miller says she's seen a range of reactions to a diagnosis of MS -- some people feel relief that they finally have a name for what they've been experiencing; others experience depression. She says that in relapsing-remitting cases, where symptoms can come and go, people often become depressed after the second or third episode, when it sinks in that they will be living with the disease for the rest of their lives. The rate of depression is much higher in people with MS than in the general population, in part as a reaction to the disease and in part because current research shows depression may be an actual component of the disease, caused by the inflammation of the brain.

Anxiety is also high among people with the disease, primarily because MS is so unpredictable. It can be very difficult to make future plans, such as for a family vacation, since one never knows when a relapse will occur or symptoms will worsen. This can be particularly difficult for family members, who say they often feel as though they are waiting for the other shoe to drop. Dr. Miller says it is important to talk openly about the disease with loved ones. Other practical advice includes looking to the recent past to judge how symptoms might unfold in the near future and always making back-up plans.

To contact Dr. Miller, please write to: Dr. Deborah Miller, Department of Neurology, The Cleveland Clinic Foundation, 9500 Euclid Ave., Cleveland, OH 44195. Or visit www.clevelandclinic.org

Finally, special commentator Zoe Koplowitz, who was diagnosed with MS in 1973, shares some of the things she's learned as the world's slowest marathon runner. In the period between 1988 and 2002, she completed a total of 16 marathons, all in last place. Her times have ranged from 20 to 33 hours with an average time of around 28 hours. She says, "crossing the finish line each year is nothing short of a small miracle. It is an eternity of emotion compressed into a single moment in time. It's about embracing the impossible and doing the undoable. And once you've done that, no one can ever say no to you ever again for anything you really want because you know you have what it takes to go the distance in your life." Zoe Koplowitz is the author of Winning Spirit: Life Lessons Learned in Last Place.

For more information about MS please contact: The National Multiple Sclerosis Society at http://www.nmss.org/ or 1-800-Fight MS.

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