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October 17, 1997     Cape Gazette
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October 17, 1997

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CAPE GAZETYE, Friday, October 17 - October 23, 1997 - 41 MDA offers help.programs for Lou Gehrig&apos;s disease Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease or motor neuron disease, is a progressive, degener- ative disorder that wastes the muscles and nerves, leading to al- most total paralysis. Those affect- ed gradually lose the abilities to move, speak, swallow and breathe, while retaining full men- tal awareness. Life expectancy is typically two-to-four years after diagnosis. ALS strikes men and women, usually between the ages of 40 and 60, although the 30,000 Americans affected by it range in age from late teens to the elderly. Its cause isn't fully understood. Research by the Muscular Dystro- phy Association (MDA) has led to a 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 pro- gression was developed with MDA support and is on the mar- ket; others are being tested. MDA is the country's largest nongovernmental sponsor of re- search 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 in- stitutions across the country. MDA issues caregiver's guide for Lou Gehrig's disease The Muscular Dystrophy Asso- ciation (MDA) has issued a com- prehensive 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. GENERAL, VASCULAR r THORACIC CANCER SURGERY "This publication brings togeth- er under one title important infor- mation about living with ALS to augment MDA's year-round ALS education program conducted through the Jerry Lewis MDA La- bor Day Telethon, seminars and workshops, support groups, brochures, magazine and newslet- ter articles, videos and on-line 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." The guide covers topics related to physical care of a person with ALS, including medical treat- ments, nutrition, respiratory care and communication. A section ex- plores the emotional and physical demands made on the caregiver, including changes in the relation- ship with the patient, putting to- gether a healthcare team and avoiding burnout. Other topics covered include hospices, living wills, finding home care assistance and govern- mental financial support. The guide contains an extensive list of resources, including books, orga- nizations, web sites, and the ad- dresses of local MDA oMces and clinics. The primary caregiver for any- one with a diagnosis of ALS who is registered with MDA can re- ceive a copy of the guide free. For others, there is a charge of $10. While the guide was created for ALS caregivers, much of the ma- terial would apply to caring for anyone with a physically debilitat- ing condition. The guide was pre- pared with the support of Cephaion, a pharmaceutical man- ufacturer. "When a Loved One Has ALS" can be ordered through the local MDA office, listed in the phone directory. If there is difficulty lo- cating the nearest MDA office, call MDA national headquarters at 800-572-1717. MDA grantees are exploring all leads to causes of ALS and poten- tial 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, the first national volun- tary health agency providing sci- entific, medical and emotional support for people with the disor- der, has 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 ha- tionwide network of clinics; sup- port groups; assistance with pur- chase of wheelchairs and braces; a bimonthly newsletter reporting the latest research findings; and online discussions for patients and caregivers at <>. FAMILY PHYSICIAN Steven H. Berkowitz, D.O. Long Neck Professional Center Suite B, Long Neck Road Millsboro, Oelaware ~ Accepting New Patients ~ By Appointment Only 302-945-7200 Dr. Alae Zarif Is Pleased To Announce The Relocation Of His Office To Seashore Medical (Across From Beebe Medical Center) 431 Savannah Rd. Lewes, DE 1 For Appointments i/I I_m/N IN Please call: v .v.,v ...into the next gener00ltion ()f h00tiLon. The World's Smallest 0 The World's Fastest O The World's Most Sophisticated and _ Comple_ Automatic Dlarat H004mNG AID For more information, contact: MARY ANN GASKIN, M.A., OCC-A Bayside Health Association (302) 856-3597 or 645-4700