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Why I Walk

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ALS UP CLOSE AND PERSONAL
by Wanda Garvin

    ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's Disease, is a neuromuscular disease affecting the nerves that control a person's voluntary muscles.   These muscles include those that function as a result of a person's command.  For example, we “tell” our leg muscles to walk across the room, and this happens even though we do not necessarily think about each step.  For still unknown reasons, the nerves controlling the voluntary muscles are destroyed, thus causing the death of the muscles.

This writer's intent is to give you insight into the disease and its effects on its victims, as well as to ask  you to help in the continuing research on its cause and treatment and in assisting ALS patients.

For this writer, the disease manifested itself with right hand weakness and with difficulty in movement of the thumb and first finger of that hand.  Noticeable muscle decrease followed.  For many patients weakness in limbs is the first symptom although others initially have difficulty in speaking and swallowing.  Regardless of the progression of symptoms, the disease is usually fatal within two to five years after diagnosis.  In the disease's latter stages, the patient is unable to turn over in bed, swallow, speak, or breathe without mechanical assistance.

Research is being done, but as ALS is an “orphan” disease with fewer sufferers than cancer or other illnesses, we are woefully behind on treatments and far from a cure.  We patients participate in clinical trials to assist with research.  ALS clinics at university medical centers throughout the country provide multidisciplinary care to patients and their families, providing medical care and education so that patients maintain function for as long as possible.  With each clinic visit, the patient and caregiver see the physician, physical therapist, occupational therapist, speech therapist, assistive technology therapist, social worker, and specialists in other disciplines where available.  Coping tips are given by the therapists.  Prescriptions for devices such as braces, walkers, and wheelchairs are given by the physician. These coping tips and device prescriptions are the only options to help patients stay ahead of disabilities that rob them of a quality life and even of their homes, which become inaccessible and unfriendly to them.  Only one medication is FDA approved for treatment, Rilutek; its purpose is to keep ALS patients breathing on their own longer.

Life with ALS is challenging and frequently emotional as the patient and family understand the implications of the diagnosis, adapt to increasing physical disabilities, learn to accept loss of independence, and deal with end-of-life issues.  It is important to stay connected with family and friends, enjoying social interactions.  The disease makes one enjoy each day for what it truly is for everyone:  a gift.  Although one would not wish this disease on his or her worst enemy, ALS enables you to meet some of the world's most special people (dedicated medical professionals and caregivers) and to appreciate your own strengths and the loyalty of those who support you.

You can help organizations that support ALS  patients with the financial issues related to the disease such as adaptive equipment, home modifications, and transportation.  Life is not easy, and the financial burdens placed on its sufferers are high.  These organizations make a hugely positive difference in the quality of life of ALS patients and their families, and they provide a strong measure of comfort where no treatments are available.


Wanda Garvin