ROANOKE TIMES
Copyright (c) 1996, Roanoke Times
DATE: Tuesday, October 29, 1996 TAG: 9610290033
SECTION: EXTRA PAGE: 3 EDITION: METRO
COLUMN: PERSONAL HEALTH
SOURCE: JANE BRODY
A 10th person with multiple sclerosis recently used the services of Dr. Jack Kevorkian. Ten of the 41 people the Michigan doctor has helped to commit suicide have chosen death over trying to live with the disabilities that can accompany multiple sclerosis.
The publicity each case has received, say some people who believe living with the disease can almost always be productive and satisfying, is sending the wrong message: a message of hopelessness and helplessness.
For never before has there been more to live for with multiple sclerosis. Until recently, doctors were able only to try to relieve symptoms of the illness.
But the last few years have seen the development of the first drugs that can interfere with the progress of the disease if they are administered in its early stages: drugs that can reduce the frequency of relapses and that may even slow or halt the progression of the disease. There is even a suggestion, not yet proved, that one new drug may reverse the progress of the illness.
Two of these drugs, Betaseron, made by Berlex Laboratories Inc., and Avonex, made by Biogen Inc., are already on the market; a third, Copaxone, made by Teva Pharmaceutical Industries, for which early evidence suggests that there is a chance of disease reversal, is expected to be approved shortly by the Food and Drug Administration.
With the availability of these drugs and new ones that are expected to follow, it has become important to find out early in the course of the illness that a person has multiple sclerosis and to get treatment that may delay progression to severe disability for many years, perhaps for life.
By choosing assisted dying over assisted living, a patient with multiple sclerosis will never know whether he or she might have been helped by one or more of these new treatments.
And with more than 300,000 people who already know they have the disease and with a new case being diagnosed every hour, it is important for everyone to know that nearly all people with disabilities, even severe ones, can lead meaningful lives.
Multiple sclerosis is not a fatal disease. It is a disorder in which the body mistakenly attacks the sheaths of myelin that protect nerves, and ultimately blocks the ability of nerves to send messages to muscles. Its tendency to wax and wane repeatedly and unpredictably can have patients wavering back and forth between elation and despair.
The message that advocates for trying to live with the disease want to get out to all those afflicted is that whatever the state of a person's disability, life need not be worthless.
There is likely to be a way for that person to make a contribution. It is a message that can be applied to all people with disabilities.
Arney Rosenblat, a spokeswoman for the National Multiple Sclerosis Society, cites these examples, among dozens of others:
* Greg Vellner of Southampton, Pa., developed vision problems and fatigue that precluded his continuing as a journalist. So he traded his notebook for an apron. While his wife works outside the home, he cooks and cares for their two young children. He has enjoyed the benefits of Betaseron for eight years, having participating in the original tests of the drug.
* Susan Parker, a New Yorker who uses a scooter to get about, is a single mother and financial analyst for Paine Webber.
* Another New Yorker, Dianne Pilgrim, who uses a wheelchair, is director of the Cooper-Hewitt Museum.
* Richard Radtke, a marine biologist in Hawaii, is paralyzed from the neck down, yet he travels around the world to help foreign governments develop conservation strategies.
* Ellen Burstein, a former investigative consumer reporter for an Orlando television station who now lives in Lawrence, N.Y., is also a quadriplegic who cannot even scratch an itch. But with the aid of her sister Patricia, she wrote a much-acclaimed book published in 1994, ``Legwork: An Inspiring Journey Through a Chronic Illness'' (Scribner's, $22), and acts as a spokeswoman for ``assisted living, not assisted dying.''
* Bob Naparty, who is bedridden, is married, a father of two and a lawyer working for the New York state court system.
* Then there is Cindy Teal, a registered nurse living in Camden, S.C., once paralyzed from the neck down but now able to walk with the aid of an assistance dog; she works as a trainer of assistance dogs for the disabled.
One of the first things a person who receives a diagnosis of MS should do is call (800) FIGHT-MS (344-4867). This 24-hour information line operated by the National Multiple Sclerosis Society can provide referrals to doctors and treatment centers, information on almost any topic related to the disease and the location of the nearest MS chapter.
Local chapters, in turn, are a link to support groups and all manner of services available through the society or the community. There are now about 1,800 multiple sclerosis self-help groups throughout the country. Many chapters also have family programs, including those for teen-agers who have a parent with the illness.
Dr. Nancy Holland, vice president for client and community services at the national society, said:
``People with MS still get bad advice to stop working - that it's too tiring and stressful. But quitting one's job is the worst thing to do. We emphasize job retention, and we work with employees and employers to help people with MS keep their jobs for as long as possible. In most cases, simple accommodations, like moving a person's work station nearer to the bathroom or arranging for a more flexible work schedule, are all that is needed.''
She said the society also works with the state to help obtain job retraining when and if that becomes necessary.
As Burstein put it: ``We need to tell the disabled what they can do, not what they can't do, and help them set and pursue realistic goals. Yes, MS is a life-altering and incredibly inconvenient illness for all. However, the popularization of MS suicide sends an incorrect and frightening message to people with MS and to those who know little or nothing about this condition. There is a lot of help available.''
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