He entered the room, walking tall in a well-fitted suit and gregarious smile. Yet his gait seemed a little slower and somewhat pensive. My wedding would be the last time that I would see Uncle Charlie walking. It was the last time that I would even see him stand or wear a suit. You might think the suit reference is odd, but, you see, Charles H. Richards was an attorney so I often saw him in suits, but that day would be the last time. Uncle Charlie had been diagnosed with amyotrophic lateral sclerosis (ALS) earlier that year.
What is ALS?
Also known as Lou Gehrig’s disease, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. “Amyotrophic” comes from the Greek language. “A” means no. “Myo” refers to muscle. “Trophic” means nourishment. So, amyotrophic means no muscle nourishment, and when a muscle has no nourishment, it atrophies, or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (“sclerosis”) in the region.
Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise. When motor neurons die, the ability of the brain to initiate and control muscle movement is lost. When voluntary muscle action is progressively affected, people may lose the ability to speak, eat, move and breathe. More information is available at the ALS Association website.
At my wedding, Uncle Charlie had already lost muscle control in his hands and arms, and his legs were beginning to betray him as well. Think for a moment, what you do when you realize you are beginning to fall. Now, think how much more frustrating falling would be without the use of your hands and arms to help you. And think about the reason you’re falling. With ALS, your legs, without warning, can miss the signal to keep you upright and suddenly, you aren’t. You are keenly aware of what is happening, as your mind is fully intact and alert, but you just have no control.
Living with Lou Gehrig’s disease
Eventually different parts of the body are lost to ALS, but not the mind. Stephen Hawking, the famed theoretical physicist, lived with ALS for 55 years. My uncle lived with ALS for 14 years. He worked that entire time with the help of caregivers to do things such as drafting a letter, which could take several days because, in the end, his communication was reduced to blinking.
More common, however, is to live from two to five years from diagnosis. This was the case with my good friend Andre Chang. Andre was one of the kindest gentlemen I have ever known. He truly had the most genuine smile. I knew Andre from church when I lived in San Francisco. He was diagnosed at about the same time as Uncle Charlie but his time with ALS was only a few years.
When they were diagnosed, I knew nothing about ALS. I had heard of Lou Gehrig’s Disease but didn’t know what it was or who Gehrig was. Before reading about it here, you may not have known about ALS or realized that you know people who have it. It is important to understand ALS because it has, or likely will, affect someone you know.
More research is desperately needed
Every 90 seconds someone is diagnosed with ALS and someone loses their battle with it. Notable names you might recognize? I’ve mentioned Stephen Hawking, but someone well known in the Bay Area, 49er football great, wide receiver Dwight Clark also suffered with ALS.
Ninety percent of cases occur without any known family history or genetic cause. Military veterans are almost twice as likely to be diagnosed with ALS, but the reason for that remains unknown. People in the best physical shape imaginable can get ALS. Beloved 49ers wide receiver Dwight Clark, announced in 2017 that he had been diagnosed with ALS. He died in 2018. These are just a few examples of why more research into ALS is desperately needed.
Ice Bucket Challenge funds led to new ALS treatment
There is no cure for ALS at this time, but awareness can make a huge difference. Remember the Ice Bucket Challenge? That brought a huge increase in awareness of ALS and funding for research. In fact, the largest private funder of ALS research worldwide, the ALS Association, is now able to spend three times more on ALS research than before that challenge went viral in 2014. One result of that research is that the FDA approved AMX0035, the first treatment for ALS developed in years. This is a game changer, as it slows down the progression and extends the life of those living with ALS.
Walk to Defeat ALS this weekend
So now, I encourage you to do good. Since we are in a time of drought, no Ice Bucket Challenge, but here in the San Francisco Bay area, the ALS Association Golden West Chapter continues to serve the needs of families living with ALS. Last weekend was the Silicon Valley Walk to Defeat ALS. This Saturday, October 15, is the East Bay Walk to Defeat ALS at Miller-Knox Regional Shoreline, 900 Dornan Dr., in Richmond. Join my walk team and enjoy a beautiful 1-mile walk along the shoreline. Check-in is at 10 a.m. and the walk starts at 11:30. If you aren’t able to make it, please consider making a donation of any size. Sign up to walk with me or donate at my Walk to Defeat ALS web page.
I do the pre-walk warm-ups so come dance with me and let’s kick some ALS together!
Contributing writer Denise Lum is a Health and Fitness Coach raising her family in Alameda. Contact her via [email protected] or FitnessByDsign.com. Her writing is collected at AlamedaPost.com/Denise-Lum.