ALS Awareness Month – #ALSAwareness (Week 2)

May 21, 2020

This month’s focus is on ALS Awareness. I noted in last week’s article that awareness days, weeks and months are helpful as they heighten awareness around a specific cause, start conversations and have spurred charity events and information campaigns. Awareness months also provide the community with opportunities to participate via support for a cause one is passionate about.

What is ALS? According to the ALS Association, ALS or amyotrophic lateral sclerosis, was first discovered in 1869 by French neurologist Jean-Martin Charcot, but it wasn’t until 1939 that New York Yankees first-baseman Lou Gehrig brought national and international attention to the disease. Ending the career of one of the most beloved baseball players of all time, the disease is still most closely associated with his name. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive weakening and wasting of the motor neurons by ALS eventually leads to death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

This week, I will begin presenting the 5 Myths about ALS1 which were identified by the ALS Association. The balance of the myths will be presented in next week’s article.

Myth #1: ALS is strictly hereditary. In reality, the majority of people diagnosed with ALS have no family history of the disease. About 90 percent of ALS cases are sporadic, meaning the cause or causes are unknown. The remaining 10 percent of ALS cases are familial and inherited through a mutated gene. In those families, there is a 50 percent chance that each offspring will inherit the gene mutation and may develop the disease.

Myth #2: Only older people are affected by ALS. Most people who develop ALS are between the ages of 40 and 70, with an average onset of 55. But there are many cases of people in their twenties and thirties who have been diagnosed with ALS. This “young onset” ALS typically refers to people younger than 45 years old and accounts for about 10 percent of all cases.

Myth #3: ALS does not affect brain function. While not common, approximately 20 percent of individuals with ALS also develop frontotemporal degeneration (FTD), which is characterized by changes in personality, behavior and speech. Another rare form of ALS, known as ALS-parkinsonism-dementia complex (ALS-PDC) is characterized by signs and symptoms of ALS in addition to movement abnormalities (slow movements, stiffness and tremors) and loss of intellectual function. Cognitive and behavioral impairment in ALS can vary widely from individual to individual. Some people with ALS develops a symptom called “pseudobulbar affect.” They may cry or laugh at inappropriate times; or notice how once they start feeling an emotion, it is difficult to suppress it and not express it. Pseudobulbar affect is common in ALS and is the result of a brain reflex no longer working correctly. People with ALS can have pseudobulbar affect and no other cognitive, behavioral, or psychological symptoms.


1 ALS Association,

Next Week: Continuation

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