Subject
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Proclamation Declaring May 2024, as Amyotrophic Lateral Sclerosis (ALS) Awareness Month in Rockville, Maryland
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Department
City Clerk/Director of Council Operations Office
Recommendation
Staff recommends that the Mayor and Council read and approve the proclamation.
Discussion
Amyotrophic Lateral Sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive, fatal neuromuscular disorder that occurs when motor nerve cells cease to function and die. What makes ALS unique compared to most other diseases is that there is no known cause, cure, or means of prevention.
While in most cases a person’s mind remains sharp and alert, voluntary muscle control becomes completely lost, often resulting in paralysis. People with ALS essentially become trapped inside their own bodies-aware of the world around them but unable to respond to it. As people with ALS lose the ability to walk, move their arms, talk, and even breathe, the disease requires them to rely on caregivers, usually their families, to provide the care and assistance that is needed to perform normal daily living activities. In many cases, particularly in the latter stages of the disease, people with ALS have a need for continuous care, 24 hours a day, seven days a week.
The average life expectancy for people with ALS is two to five years from the date of diagnosis. It is critical to the struggle to defeat this terrible disease that the people and leaders of our community be educated and aware of the disease, as well as the issues confronting those who are affected by it. In fact, a paper entitled “ALS in the Military, Unexpected Consequences of Military Service” outlines those military veterans are at approximately twice the risk of developing ALS than those that have not served in the military. It is only through increased advocacy that elected officials, medical researchers, and health care professionals will give ALS patients the attention and support that they need and deserve.
The most famous person with ALS is Dr. Stephen Hawking. Amyotrophic Lateral Sclerosis or ALS is one of several types of motor neuron diseases. It gradually and inexorably paralyzes patients, usually killing within about four years.
Dr. Hawking was diagnosed in 1963, when he was just 21 years old. He survived for 55 years with the incurable condition.
“His survival is longer than most,” said Dr. Jeffrey Elliott, chief of the neuromuscular disorders section at the University of Texas Southwestern Medical Center. “I think part of his longevity may have been because he had a slowly progressive form. Probably it was also due to the exclusive nursing and medical care that he received.”
Dr. Hawking received round-the-clock medical care, at first from a wife who gave up her career ambitions to tend to him, and later from a team of nurses. He was told when diagnosed that he likely would not live long - but he beat the odds.
According to the ALS Association, half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to 10 percent will live more than 10 years.
People diagnosed when they are young, as Dr. Hawking was, live longer for reasons that are not well understood. It may be that a different cause of the disease shows up in young adults.
Dr. Hawking was one of the best-known scientists of modern times, as famous for his motorized wheelchair and computer-generated voice as he was for his user-friendly explanations of esoteric physics and cosmology. His intellectual strengths were the stuff of awe, but so was his ability to lead not simply a normal life, but an extraordinary one, while suffering with a tremendously debilitating condition.
Mayor and Council History
This is the sixth time this item has been brought before the Mayor and Council.
Public Notification and Engagement
More information on ALS can be found at the link below:
Amyotrophic Lateral Sclerosis (ALS) Fact Sheet | National Institute of Neurological Disorders and Stroke (<https://www.ninds.nih.gov/>)