A Legacy to A Friend

By Leslie Schwartz

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s disease”, is a progressive, fatal neuromuscular disease that attacks nerve cells and pathways in the brain and spinal cord. Motor neurons, among the largest of all nerve cells, reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body with connections to the brain. When they die, as with ALS, the ability of the brain to start and control muscle movement dies with them. With all voluntary muscle action affected, patients in the later stages are totally paralyzed; yet through it all, their minds remain unaffected.

ALS is one of the most devastating of disorders which affects the function of nerves and muscles. According to current data, the incidence of ALS is about 6-8 per 100,000 population. Thus, some 5,000 people in the U.S. are newly diagnosed with ALS each year. (That’s about 15 new cases a day!) It is estimated that as many as 30,000 Americans have the disease at any given time, and that some 300,000 men and women who are alive and apparently well in the country today will die with ALS unless a cure or prevention is found.

With recent advances in research and improved medical care, many ALS patients are living longer and more productive lives. Half of all affected live at least three years or more after diagnosis. Twenty percent live five years or more; up to ten percent will survive more than ten years.
Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and uncontrollable periods of laughing or crying.

The hands and feet may be affected first, causing difficulty in walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.

As the weakening and paralysis continue to spread to the muscles of the trunk of the body, the disease eventually affects swallowing, chewing and breathing. When the breathing muscles are attacked, the patient faces permanent ventilatory support in order to survive.

Since ALS attacks only motor neurons, the senses of sight, touch, hearing, taste and smell and muscles of the eyes and bladder are generally not affected. The mind is not impaired and remains sharp despite the progressive degenerating condition of the body.

Although there is not yet a cure for ALS, much can be done not only to help patients live with the disease, but live more productively and independently. The concept of ALS as a hopeless disease is fast giving way to an approach that emphasizes the treatment of a patient’s symptoms. This can improve the quality of life for the patient and help him or her develop a positive attitude about being part of the management care team.

Unlike some people, Nancy Wright received a quick diagnosis of ALS. Her symptoms began with a drop in her big toe, followed by stumbling and ultimately tumbling to the ground. Mrs. Wright weakened quickly and in a matter of months went from using a cane, to a walker to a wheelchair. Mrs. Wright’s daughter, Nancy Kriebel, and her friends sent Mrs. Wright a magical-looking wand. The wand was a symbol of the faith, love, courage, spirit and dream that one day there would be a cure for this devastating disease. The group wanted to do more. They wanted to increase awareness of the disease and the free programs provided by the ALS Association – DC/MD/VA Chapter to local patients and families. Ultimately, they wanted to find a cure.

Now in its 5th year, ALS Artisan Boutique has raised over $70,000 and touched countless families. This year’s event will be held on Sunday, November 18, at the Sheraton Annapolis Hotel from 10am-6pm. The event is free and open to the public. Over 50 regional artists will offer handcrafted jewelry, original children’s clothing and accessories, pottery, paintings and more. In addition to the artisan offerings, the event will include door prizes, raffles, a silent auction, refreshments and an appearance by Lisa McCue, an illustrator of children’s books, including the Corduroy series. Books will be available for signing. If you cannot attend but would like to help, donations can be made to the ALS Association and sent to 1221 Buckingham Road, Arnold, MD 21012. For more information, e-mail ALSfundraiser@comcast.net

ALS is a devastating and always fatal neuromuscular disease. Unless a cure is found, over 300,000 Americans living today will die from ALS. The financial cost to families of persons with ALS can be up to $200,000 per year, depleting the entire savings of patients and their families.

The ALS Association is the only national not-for-profit voluntary health organization whose sole mission is to find a cure for amyotrophic lateral sclerosis (LOU GEHRIG’S DISEASE) as well as improve living with ALS. For more information, call the ALS Association301-978-9855 or visit www.ALSinfo.org.

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