What is ALS: You should know about this incurable, debilitating disease

WHat is ALS: According to a statement from family members, Bryan Randall perished after a three-year battle with the disease, which he chose to keep private from the start.

“Those of us who cared for him did our best to honor his request,” a portion of the statement read.

Here is what you need to know about the illness.

What is ALS?

According to the Johns Hopkins Medicine website, ALS, which stands for “Amyotrophic Lateral Sclerosis,” is a progressive degeneration of nerve cells in the spinal cord and brain.

ALS affects motor neurons, or nerve cells that control voluntary muscle movements such as walking and speech, according to the Mayo Clinic website.

“ALS causes both clusters of motor neurons to degrade and ultimately perish. When motor neurons are damaged, they cease communicating with muscles. “As a result, the muscles are unable to function,” states a section of the Mayo Clinic website.

The National Institute of Neurological Disorders and Stroke classifies ALS as a prevalent form of motor neuron disease.

According to the website, the disease is commonly known as Lou Gehrig’s disease. Lou Gehrig was a professional baseball player in the United States who was diagnosed with ALS in 1939 and died in 1941, according to his entry in the Encyclopedia Britannica.

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What causes ALS?

According to the Johns Hopkins Medicine website, the origin of ALS is unknown.

On the Mayo Clinic’s website for ALS, it is stated that a genetic cause can be identified for approximately 10% of ALS patients.

According to the Mayo Clinic’s website on ALS, “most theories revolve around a complex interaction between genes and environmental factors.”

According to the Mayo Clinic website, established risk factors for ALS include:

• ALS is most prevalent between the ages of 60 and the mid-80s.
• Slightly more men than women are diagnosed with ALS before the age of 65. However, the gender disparity dissipates after the age of 70.

According to the Mayo Clinic, other environmental factors, including smoking, exposure to environmental toxins, and military service, are also associated with an increased risk of ALS.

“It is unclear what aspect of military service may cause ALS. It may involve exposure to certain metals or chemicals, traumatic injuries, viral infections, or extreme exertion,” according to a portion of the Mayo Clinic website.

According to the website of Johns Hopkins Medicine, it is not contagious, meaning that it cannot travel from person to person like the common cold or influenza.

What are the symptoms of ALS?

According to the Johns Hopkins Medicine website, patients may initially experience limb weakness that develops over days or weeks.

Then, several weeks to months later, another limb develops weakness. Sometimes the initial problem can be impaired speech or difficulty swallowing,” the website states.

According to the website, more symptoms may be observed as ALS progresses. Among the symptoms are:

• twitching and cramping of the muscles, particularly in the hands and feet
• Lack of hand and limb motor function
• Impaired use of the limbs and legs
• Falling and tripping
• Dropping items
• enduring exhaustion
• Uncontrollable bouts of laughter and tears

According to the website, difficulty inhaling, difficulty swallowing, and paralysis are also symptoms of the disease in its later stages.

According to the Mayo Clinic, some individuals with AMS may be diagnosed with frontotemporal dementia in the future.

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How is a patient diagnosed with ALS?

According to the Cleveland Clinic’s website, a physician will conduct a physical examination and inquire about a patient’s medical history. Several additional studies will be conducted to corroborate a diagnosis of ALS, including

• Blood and urine screenings
• A neurological assessment
• An electromyogram, or a test that measures the electrical activity of the nerves and muscles of a person.
• A nerve conduction study to evaluate nerves’ ability to transmit a signal
• An MRI to examine the brain or spine for damaged areas

Other tests, including spinal fluid tests and muscle and/or nerve biopsies, may be performed to rule out other diseases with comparable symptoms.

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Is ALS curable?

ALS is incurable, according to the websites of the Cleveland Clinic and Johns Hopkins Medicine.

Existing treatment options for ALS?

The following treatments can slow the progression of ALS, according to the Cleveland Clinic’s website:

• Medicine
• Physical treatment
• Nutritional guidance
• Speech pathology
• Assistive devices and special apparatus, such as electric beds and wheelchairs

According to the Cleveland Clinic’s website, some people with ALS choose to engage in “voice banking,” or the process of recording a person’s voice in a speech synthesizer, so that they can communicate via the speech synthesizer if they lose the ability to speak in the future.

According to the Mayo Clinic website, the Food and Drug Administration has approved three medications for the treatment of ALS:

• Relyvrio, also known as Riluzole
• Edaravone, and
• Sodium Phenylbutyrate-Taurursodiol

The Mayo Clinic’s website states that ALS treatments cannot undo the damage it has done.

What can I do to avoid developing ALS?

According to the website of the Cleveland Clinic, there is no demonstrated method to prevent ALS.

What is the prognosis for patients with ALS?

According to the Cleveland Clinic’s website, the average life expectancy after a diagnosis is three to five years, but some patients can live 10 years or longer.

The website stated, “The rate of symptom progression determines a person’s prognosis.”

Are there other notable individuals with the disease?

In addition to Lou Gehrig and Bryan Randall, a number of notable individuals have been identified as suffering from or passing away from this disease.

Scientist Stephen Hawking, who died in 2018 after living with the disease for over 50 years, and Pete Frates and Pat Quinn, both of whom founded the Ice Bucket Challenge, which went ubiquitous on social media for a time, are notable ALS victims. Frates passed away in 2019, and Quinn in 2020.

Singer Roberta Flack and former Chicago Bears football player Steve McMichael are also ALS patients.

You made reference to the Ice Bucket Challenge: What happened?

The Ice Bucket Challenge was co-founded by Quinn and another individual named Pete Frates, as mentioned previously.

According to the Associated Press, Quinn first encountered the ice pail challenge in 2014 on the social media feed of Chris Kennedy, a professional golfer. In the video, Kennedy dared his wife’s cousin, whose spouse had amyotrophic lateral sclerosis, to take a bucket of ice water, dump it over her head, post a video to social media, and dare others to do the same or donate to charity.

Quinn and Frates, along with their respective support teams, contributed to the challenge’s popularity.

The AP reported in 2019 that the challenge has raised approximately $220 million worldwide, including $115 million for the ALS Association in Washington.

This site does not offer medical guidance. The information provided above is for informational purposes only, and nothing on this website should be considered a replacement for professional medical advice, diagnosis, or treatment. If you have health concerns, contact your primary care physician or other health care providers.