Honoring ALS Awareness Month

Shelley and her mother, who had ALS - honoring ALS awareness month
May 10, 2023

Honoring ALS Awareness Month… And What is ALS?

Authored by Shelley Strunk Knop
In memory of Patricia Ann Laird Strunk 3/18/39 – 10/01/13

Patricia Strunk, who had ALS

ALS (Amyotrophic Lateral Sclerosis) is a rare neurological disease that affects motor neurons—those nerve cells in the brain and spinal cord that control voluntary muscle movement (like chewing, walking, and talking). As motor neurons degenerate and die, they stop sending messages to the muscles, which causes the muscles to weaken, start to twitch and waste away. Eventually, the brain loses its ability to initiate and control voluntary movements.

Facts about ALS:

  • Most of the cases occur at the age of 40–60 and affect more men than women
  • Its impact varies from person to person
  • 5,000+ people are diagnosed every year
  • Every 90 minutes, someone is diagnosed with ALS and someone passes away from it
  • 2-5 years is the average life expectancy
  • There is no cure for or way to prevent ALS from progressing however, medications can help slow the progression…see below
  • ALS was brought to the forefront in 1939 when Yankees player Lou Gehrig developed the disease
  • Stephen Hawking was the longest North American survivor and had ALS for 55 years
  • Ice Bucket Challenge campaign raised over $220 million worldwide towards research and awareness

 

“It’s a humbling diagnosis that is devastating for the individual and transforms everyone that is in that person’s life. I certainly recommend that a person living with ALS seek a multi-disciplinary ALS team for support, education, and guidance.” Eric Ballinger MSPT, ATP.  Eric is a Physical Therapist that is dedicated to working with patients for the utmost care in best managing the progression.

Personally, I experienced my mother’s shocking diagnosis, and held her hand through the progression and eventually her passing. Her strength and determination to hold her own independence as long as possible, until the disease took over, was as inspiring as it was painful to witness.

I asked a friend that is a neurologist and focuses on research and cures for ALS as my mother, Patricia, had always been the healthiest, most active, and fit of all the mothers I knew. “Why her?”.  His response “This is why I do what I do.  This disease does not discriminate and it can take down the healthiest of people”.

Only 10% of ALS is genetic, and the majority is sporadic.  My mom was only 72.  On average it takes 9-12 months for diagnosis.  My mom started with slurred speech and difficulty getting back up when gardening (her favorite).  As a family, we were not expecting such a diagnosis.  Her progressed lack of independence was heart-wrenching. Early diagnosis is important. There are drugs given in the early stages that have a high likelihood of slowing the progression.

Early Signs of ALS

  • Tripping and falling or having a hard time walking
  • Feeling clumsy
  • Weakness in your hands, legs, feet, or ankles
  • Muscle cramps and tightness
  • Twitching in your arms, shoulders, and tongue
  • Inability to keep your head up or maintain a good posture
  • Slurred speech and having a hard time swallowing

 

ALS Awareness Month is a campaign to spread awareness of and raise funds for research for a cure for ALS.  This is a time for numerous organizations and communities across the country to collaborate and spread awareness and focus on the continued need for research and commitment.

At ClipDifferent, we offer our Adult Lil Nipper to help those who have lost strength in their hands due to illness so they are able to clip their fingernails on their own providing a bit of independence and peace of mind. For 10% off, enter Coupon Code: ALS

Source: ALS Organization

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