Activities to Increase Quality of Life for ALS Patients

ALS is Amyotropic Lateral Sclerosis – and is also known as “Lou Gehrig’s” disease. It is an incurable disease that affects motor neurons that control muscles. Patients with ALS lose their ability to move as the neurons die.

ALS was nicknamed “Lou Gehrig’s Disease” after the baseball player who was forced to retire after a stellar career where he earned several accolades and achieved records for his skills as a hitter. He played 17 seasons for the New York Yankees from 1923 through 1939. He was voted an All-Star seven consecutive times and was an American League MVP twice. As a member of six World Series champion teams, Lou Gehrig had a career .340 batting average, hitting 493 home runs and 1,995 RBIs. In 1939, he was elected to the Baseball Hall of Fame and was the first Major League Baseball player to have his uniform number retired.

ALS forced Gehrig to retire at the age of 36 and was the cause of his death two years later. It is important to remember that ALS patients lose the ability to control muscles including swallowing but ALS does not affect the ability to think or remember. It doesn’t affect personality – although the patients may become frustrated and saddened by the disease. Patients can move eye muscles and the senses of taste, touch, smell, sight and hearing also remain intact.*

According to the National Institutes of Health, about 20,000 people in the US have ALS; in this country an estimated 5,000 people each year are diagnosed with the disease. ALS affects all races and age groups, although it is more prevalent in men and in people ages 40 – 60 years old.

As the disease progresses, patients become more dependent on others to care for them. Despite the loss of the ability to walk and even to move, certain activities in which the patients can participate can be helpful and enjoyable.

Massage can decrease muscle stiffness and relieve the discomfort and pain of cramps. This can be quite pleasurable and relaxing and is encouraged. Talk to your doctor to see what types of massage you can do for your loved one.

Engaging activities such as watching movies or TV together can distract and provide pleasure. You can engage in “conversation” by commenting on the show and ask yes or no questions that can be answered by a patient having difficulty speaking by blinking.
If the patient likes music, then playing his or her favorite music genre is relaxing.

If a fan of ballet or other types of dance, an ALS patient may enjoy a video you can watch together. The same is true of a sports fan — sitting together to watch a ball game or hockey can provide enjoyment. While these activities may seem passive, they can change the patient’s focus and help relieve symptoms.

You can also read to the patient with extra emphasis on voice intonation and dynamics. There are also many excellent books on tape that can provide entertainment when you are not there.

People with ALS are still the individuals they were before the disease ravaged their bodies. Your loved one with ALS still has a sharp mind and sharing time together is one way to help to provide pleasure and comfort.

*Adapted from a National Institute of Health ALS Fact Sheet, August 2000

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