New support group for ALS: Nice Guys Disease
LUBBOCK, Texas (KCBD) - In July of 1939, 62 thousand fans in Yankee stadium heard one of the most famous speeches in baseball history.
That's when Lou Gehrig took the microphone to say goodbye to baseball. He told the crowd, "And I might have been given a bad break, but I have an awful lot to live for." Lou Gehrig died of Amyotrophic Lateral Sclerosis, or ALS, 2 years later. It's a disease that would become known as Lou Gehrig's disease. Today, there is still no cure. But the outlook is brighter and lifetimes are longer.
Dr. Stanley Appel says, "Some are living 10 years. Some are living 20 years and that's very exciting even before we have a cure." Dr. Appel is chair of the department of Neurology at Houston Methodist Hospital and considered a world leader in ALS research.
He sees and studies hundreds of patients, including Charlene McDonald of Lubbock.
Her husband, Johnny, describes her symptoms, "She started biting the inside of her mouth, slurring words, drooping and slowly getting weaker." Diagnosed in June of '18, Charlene has since lost her voice and communicates through an app on her phone.
She says with an Australian accent she selected as her new voice, "I am starting to learn sign language but I still have a lot to learn."
Sometimes, she uses other accents on the app, but whatever the voice she chooses, she always plays it with a smile.
ALS is a progressive degenerative disease. It does not affect the mind, but when it attacks nerve cells in the brain and spinal cord, the movement they control is lost. Most patients, like famed Astrophysicist Steven Hawking, become weak in the legs and need a wheelchair. However, Charlene is among the few with Bulbar ALS, a type of the disease which attacks first above the waist.
She explains through her phone, "It affects the bulbar region, the lungs, throat and facial muscles."
No matter what type of ALS, only 5 or 10 percent of cases is inherited. Charlene has a big family but says there is no indication of ALS anywhere else in the family. That was a comfort to Charlene to learn that ALS is not a genetic threat to her twin sister. Johnny says his comfort came randomly in a book store when he happened to notice the sub-title of a book that interested him. He says, "Just out of the clear blue, sitting there, it says 'old man, young man' and lessons in life." Johnny had never heard of the book or movie, "Tuesdays with Morrie". But he says, "By page 7, it says ‘Morrie has ALS'. So how did that happen without the providence of God?"
The couple says they are touched by all the friends and family searching the internet for an cure for ALS. But Dr. Appel warns those good intentions can be harmful. He says, "It gets people on an emotional low, not a high. You get on the internet and you read about cures. The problem is we're not there yet. But, is there hope? You bet there's hope. And we're making tremendous progress in research."
The goal is to fight the progression of the disease and manage the illness as long as possible. That's why Charlene rides a scooter at times by choice to conserve her energy. She also uses daily breathing treatments to help expand her lungs. She explains, "There's nothing I can do that I'm not doing. I just give it to God and I'm living my best life."
Her best life means enjoying her children and grandchildren, especially in the kitchen. They love to help her cook. I was there when they rolled dozens of cake pops. Charlene also enjoys quiet time alone with her crochet. She is trying to make as many blankets as she can for family members. Most of all, she loves spending as much time as she can with Johnny.
She told me, "He's my beat friend." That's when Johnny laughed and said, "Oops, she made a mistake."
She laughed too and quickly corrected it, then played the voice, "He's my best friend."
They both got such a kick out of that.
Dr. Appel says that is wonderful medicine.
He says, "This is what we call nice guys disease. The people are the nicest people in the world who have this condition. and the more positive they are, the more quality of life they're going to have and the longer they are going to live."
That's the plan.
Charlene says, "I thank God for every day, even the hard ones."
Johnny agrees and adds, "ALS is not a death sentence. It's a call to live our life."
Note from Karin: It is a wonderful coincidence that I received a timely phone call while I was working on this story.
A woman told me that her mother has ALS. Then she said, "There is no support for families with ALS in this area and I want to get something started." A day or two later, Patricia England called back and said she has arranged the first support group for ALS patients and their families. It will meet on the second Tuesday of every month. The first meeting is Tuesday, November 12th, at 6:00 at Lakeridge Chapel and Memorial Designers at 6025 82nd street.
Johnny and Charlene McDonald tell me they are excited about this opportunity to share with others and hope they can attend.
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