What is ALS?
ALS (Amyotrophic Lateral Sclerosis/Lou Gehrig's Disease) is a progressive neuromuscular disease. It attacks motor neurons in the brain and spinal cord which transmit signals to the voluntary muscles throughout the body. When motor neurons die as a result of ALS, the ability of the brain to control muscle movement is lost. Weakness spreads to all the voluntary muscles and progresses to paralysis.
ALS does not affect sensory nerves so there is no loss of feeling in the paralyzed areas. ALS only affects motor pathways in the brain so awareness, thought and intelligence are not generally affected even after paralysis makes it impossible for the patient to communicate.
ALS is a disease that has no cure and no medical treatment beyond supportive care. Therefore the focus is on providing nursing care that helps the patient and family cope with the ever increasing disability and deteriorating breathing, maximizes communication, maintains comfort, and prevents further complications of immobility.
The Progression of ALS
Most people with ALS experience their first weakness or spasticity in an arm or leg. These symptoms usually progress and may soon involve the other arm or leg. What is ALS weakness like to deal with? At first, the problems will be fairly simple to manage. When the person with ALS first gets a diagnosis, he will likely still be able to walk and use his arms and hands. However, he may experience fatigue, loss of balance, and have difficulty using his hands or trip when walking.
In this early stage of ALS, safety needs, around the house and outside the home, are important. Slippery floors, scatter rugs and other hazards should be eliminated, both at home and at work. A cane may provide stability when weakness is mild. A brace that supports the foot and ankle can keep a dragging foot from interfering with walking. He may need to use a wheelchair for especially tiring excursions, such as going to a mall.
As weakness progresses, over several months or possibly years, a wheelchair may become necessary most or all of the time. Many people with ALS say the wheelchair is, at this stage, a welcome relief from the constant strain of walking with weakened muscles and the fear of falling. The wheelchair can be thought of as preserving, not decreasing, a person’s mobility and independence.
As arm strength and hand muscles weaken as ALS progresses, other assistance may be needed. Hand and wrist splints and specially adapted eating and writing utensils can be helpful and can be obtained through your hospital’s physical or occupational therapy department or through specialty catalogs or medical supply outlets.
Sometimes (in about a quarter of those with the disease), ALS starts in the mouth and throat muscles, rather than in the limbs or trunk. In these cases, the main problems are difficulty speaking, either in forming words with the lips and tongue or producing sound from the vocal cords, or both. There may be difficulty with chewing and swallowing food, posing a choking hazard.
No matter what part of the body is first affected by ALS, the disease eventually involves the entire body, including the muscles involved in speech, swallowing and breathing. What is ALS like in the final stages of the disease? In the late stages of ALS, the affected person is totally paralyzed, and providing care at home is multifaceted and demanding.
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