MDA ISSUES CAREGIVER'S GUIDE FOR LOU GEHRIG'S DISEASE

TUCSON, Ariz., Oct. 6, 1997 -- The Muscular Dystrophy Association has issued a comprehensive guide for caregivers of people affected by amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease).

When a Loved One Has ALS: A Caregiver's Guide is a 94-page, illustrated manual filled with practical advice for meeting the medical, emotional, financial and everyday challenges faced by those who are primary caregivers for family members or others with ALS.

MDA is the nation's leading provider of services for people with ALS, and the largest private-sector supporter of research on the disease. The Association has invested nearly $100 million in its effort to eradicate ALS.

"This publication brings together under one title important information about living with ALS to augment MDA's year-round ALS education program conducted through the Jerry Lewis MDA Labor Day Telethon, seminars and workshops, support groups, brochures, magazine and newsletter articles, videos and online presentations," said Robert Ross, MDA senior vice president and executive director. "Families will find this caregiver's guide a tremendously helpful addition to our extensive program of services that assist them in coping with the disease."

ALS, a progressive disease of the motor neurons, is one of 40 neuromuscular diseases in MDA's program. ALS generally leads to total paralysis and usually proves fatal in two to five years after diagnosis.

The guide covers topics related to physical care of a person with ALS, including medical treatments, nutrition, respiratory care and communication. A section explores the emotional and physical demands made on the caregiver, including changes in the relationship with the patient, putting together a health-care team and avoiding burnout.

Other topics covered include hospices, living wills, finding home care assistance and governmental financial support. The guide contains an extensive list of resources, including books, organizations, Web sites, and the addresses of local MDA offices and clinics.

The primary caregiver for anyone with a diagnosis of ALS who is registered with MDA can receive a copy of the guide free. For others, there's a charge of $10. While the guide was created for ALS caregivers, much of the material would apply to caring for anyone with a physically debilitating condition. The guide was prepared with the support of Cephalon, a pharmaceutical manufacturer.

When a Loved One Has ALS can be ordered through your local MDA office, listed in the phone directory. If you have difficulty locating the office nearest you, call MDA national headquarters at (800) 572-1717; or visit MDA's Web site, www.mda.org.

MDA is a voluntary health agency working to defeat 40 neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education. Consistently recognized by financial, general and nonprofit sector media for its cost efficiency, MDA was recently honored by the American Medical Association for "significant and lasting contributions to the health and welfare of humanity." The Association's programs are funded almost entirely by individual private contributors.

MDA'S ALS PROGRAM

Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease or motor neuron disease, is a progressive, degenerative disorder that wastes the muscles and nerves, leading to almost total paralysis. Those affected gradually lose the abilities to move, to speak, to swallow and to breathe, while retaining full mental awareness. Life expectancy is typically two to five years after diagnosis.

ALS strikes men and women, usually between ages 40 and 60, though the 30,000 Americans affected by it range from late teens to the elderly. Its cause isn't fully understood. MDA research has led to discovery of a gene involved in the familial form; familial ALS accounts for some 10 percent of ALS cases.

There's currently no cure or long-term treatment for ALS. A drug that can slow disease progression was developed with MDA support and is on the market, and others are being tested.

MDA is the country's largest nongovernmental sponsor of research on ALS, awarding some $2.6 million a year for basic and clinical ALS research studies, and maintaining 15 regional MDA/ALS clinical and research centers at prominent medical institutions across the country. MDA grantees are exploring all leads to causes of ALS and potential treatments.

The disease is popularly known as Lou Gehrig's disease, after the New York Yankees first baseman who lost his life to the disorder in 1941. Gehrig's widow, Eleanor, was a volunteer leader of MDA in the 1950s.

MDA was the first national voluntary health agency providing scientific, medical and emotional support for people with the disorder, and has to date invested more than $100 million in its ALS program.

MDA's comprehensive services for people with ALS and their families include diagnostic and follow-up treatment at MDA's nationwide network of clinics; support groups; assistance with purchase of wheelchairs and braces; a bimonthly newsletter reporting the latest research findings; and online discussions for patients and caregivers at www.mda.org.