Scott Jennings is a rarity. He has amyotrophic lateral sclerosis (ALS), a disease that leads to rapidly progressive weakness, muscle atrophy and spasticity, and difficulty speaking, swallowing and breathing. Thirty-thousand people suffer from it, and half are dead within three years of its onset.
Yet Scott, 58, has lived with ALS for at least 23 years. That’s when he was diagnosed; doctors believe he may have had it for up to a year before being diagnosed.
According to the ALS Association, only 20 percent of people with ALS live five years or more, only ten percent will survive more than ten years and just five percent will live 20 years.
Scott is confined to a motorized wheelchair he controls, but he doesn’t have a feeding tube or a breathing apparatus, which many ALS patients need.
He also hasn’t lost his ability to talk, although his voice doesn’t go beyond a soft whisper. Long sentences are broken into a few words at a time. His wife, Linda, repeats his words to make sure they’re understood by a listener.
A positive attitude and love goes a long way, according to the couple. “All these years, the number one reason I’m so good is because of you,” Scott told his wife.
Linda said you do what it takes when you love somebody. “We’re a good team, aren’t we?” she asked rhetorically.
ALS is more commonly known as Lou Gehrig’s disease after the baseball player who was diagnosed with it while playing for the New York Yankees. Gehrig was diagnosed in 1939 on his 36th birthday and died less than two years later.
In addition to sharing the disease with Gehrig, Scott played baseball as well. That’s actually how Scott and Linda met.
Scott pitched on the American Legion team and played with Linda’s cousin, Randy, who was the catcher.
Linda noticed Scott while attending a game. “I thought what a cute guy,” Linda said. “I was asking people about him, and he was asking Randy about me.”
Linda said he rode up on his motorcycle the next day, and the rest is history. “My mom never liked motorcycles,” she said. “It was a good thing she liked you.”
Scott graduated from Manhattan High in 1972, and married Linda in 1973. They had two sons, Chris and Brendon. The family lived in Emporia, where Scott attended Emporia State on a baseball scholarship.
Scott, known by some of his buddies as “Wheels” due to his athleticism, began realizing his ALS symptoms in 1990 at age 35.
Scott couldn’t do some of the things he had grown accustomed to doing. He couldn’t run as fast. He stumbled while running. He lost his balance while playing basketball.
Scott decided to go to the doctor sensing something was wrong with him. “He went without telling me,” Linda said. “He didn’t want to tell me.”
The night before his initial doctor’s visit, Scott tested himself out in the backyard. He began to run, but could only go a few steps before falling over.
The ALS diagnosis came in July 1990. Doctors at the Mayo Clinic told Scott that he had 18 months to two years to live.
Scott and Linda came home and realized they had to tell their sons, then 13 and 11, that their dad might not be around much longer. “It was the hardest for me to tell the boys,” Scott said.
For the first two days, the boys slept in their parents’ room and lay in the bed holding their father’s hand.
Linda said it was very hard to deal with believing there wasn’t much time.
“We always felt we had this perfect family,” she said. “We didn’t have a lot of money or anything, but I felt like we had a perfect life.”
Scott said he had a hard first month. “After about a month, I stopped feeling sorry for myself and just decided that was enough of that crap,” he said.
Scott’s abilities began to go as the disease started with his feet and worked its way up. “I always gave myself one or two days to be mad,” he said about losing the ability to do something. “After that, you pick up and go again.”
Scott kept his positive attitude as he started on his odds-defying journey. “After the first five years, I had already beaten the odds,” he said. “I was surprised at how good I was doing.”
Scott said he like going to ALS support group and encouraging others going through ALS. “The doctors don’t know everything” is what Scott often tells others, using himself as an example.
When 10 years passed, Scott was really surprised. “The doctors kept saying what are you doing Scott, so we can tell our patients,” Linda said.
Of course, the answer isn’t simple due to the differences in each person, but Scott does have a cocktail of medicine he takes.
Scott said each person with ALS has a different mixture that works best. One drug that ALS patients probably share is Riluzole, the first and only drug specifically for ALS.
Scott also has a morning routine of therapy. Homecare and Hospice comes to the Jennings’ house to do the daily, four-hour task of getting Scott prepared. It starts with a cough drop, and then the helpers go to work with a series of range of motion exercises and massages. “After I sleep, I’m really stiff,” Scott said.
There’s a specific order to the routine: arms, legs, rolling Scott over, legs again, rolling Scott over again, putting on braces and slippers, shower, getting Scott dressed and feeding him.
Once he’s ready for the day, the goal is to keep things as normal as possible. Linda said they still go to the movies, recently seeing ‘42’ and ‘Star Trek Into Darkness.’
Scott and Linda will celebrate their 40th wedding anniversary in August. They’ve spent more of their marriage dealing with Scott’s ALS than not at this point.
The possibility is unlikely, but they like to keep a vision of Scott walking again some day.
“We’re really optimistic,” Linda said. “There’s no problem with that is there, honey?”
The thought is that if Scott can keep his body in the best shape he can, maybe a miracle drug could come along.
“Some day,” Scott said, “they will find something.”