ALS (Lou Gherigs Disease) and My Walk to Defeat It

I had never really heard of ALS, (Lou Gherigs Disease)….until it happened to someone I knew.

 It was my last year of high school when I learned that one of my best friend’s fathers, Dennis was diagnosed with ALS. Dennis was our town Magistrate, he was educated, personable and loved his family. At the time of Dennis’ diagnosis, I didn’t fully understand the disease and its ramifications.

Living in a town only 25 miles around, word travels fast; I remember hearing whispers and conversations from members of the community about how ‘ugly’ things could turn for Dennis and his family. Bits and pieces of information about the disease’s fatality began to circulate around town but reading about ALS and hearing about ALS is different from seeing it come and suddenly strip away the voice, facial expressions and mobility from someone you care about.

Over the next few years, I visited home during college breaks and witnessed Dennis at different points throughout the disease’s progression, each time his health rapidly declining. A year after the diagnosis, I went home for Christmas. Dennis, no longer working, was receiving at-home care and was no longer able to form words. Although Dennis could not speak, he walked over handing me gifts as he flailed his arms up in excitement. I’ll never forget that Christmas.

Two years later, I went home again. It was last time that I saw Dennis. He was unable to get out of bed and could literally not move a muscle. It was difficult to see him fall so quickly to such a mysterious and debilitating disease. Dennis passed away in 2008. That experience left me wanting to learn more about ALS (Lou Gherigs Disease) and to help others facing it.

Until this year, I had never lived in a place that offered the ALS walk. When I found out about it, I knew it was something that I wanted to commit to. This was my first year participating and it felt great to raise money for such a worthy cause. There was a tremendous sense of community present at the walk. Many teams were made up of family members whom had already lost a loved one to ALS, others there had ALS – everyone there was fighting for a cure. I will continue to fight ALS by raising money, support and participating in local walks.

– Courtney, 101 Mobility® employee

What is ALS (Lou Gherigs Disease)?
According to the National Institute of Neurological Disorders and Stroke (2012):

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a rapidly progressing and invariably fatal neurological disease that attacks the nerve cells (neurons) that are responsible for controlling voluntary muscles.  Messages from upper motor neurons in the brain are transmitted to lower motor neurons in the spinal cord and from them to particular muscles. Voluntary muscles are muscles that we consciously use such as our fingers, arms, legs, and even lungs to a certain extent (you can hold your breath if you want for example).  A prime example of an involuntary muscle would be the heart, you can’t tell your heart to stop beating.  In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away (atrophy), and twitch (fasciculations). Patients have increasing problems with moving, swallowing (dysphagia), and speaking or forming words (dysarthria). Symptoms of upper motor neuron involvement include tight and stiff muscles (spasticity) and exaggerated reflexes (hyperreflexia) including an overactive gag reflex. Eventually, ALS patients lose the strength and ability to move their voluntary muscles.

ALS does not affect a person’s ability to think, see, smell, taste, hear, or recognize touch. Patients usually maintain control of eye muscles and bladder and bowel functions, although in the late stages of the disease most patients will need help getting to and from the bathroom.

For more information, visit https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet

What can I do to help?
For more information on ALS, your local chapter, and how to get involved, visit: http://www.alsa.org/