people
systems and ultimately death. About 16,000 people in the
“It is very frustrating to see the rush they have put on COVID-
U.S. have the disease at any given time with 5,000 new cases
19, a disease that is less than one percent fatal, while the FDA
diagnosed per year.
drags their feet on a disease that has no treatment and is one hundred percent fatal and has been around one hundred and
After Les was diagnosed, he and Susan connected with the
fifty years,” he says. “There are four to five drugs or therapies
ALS Association Arkansas Chapter which proved a godsend of
that have already been proven safe and slows progression. In
information and connections to assistive technology, the most
some cases, it has stopped progression. One particular stem
recent of which is a computer setup which allows Les to type
cell study called NurOwn reversed some of the symptoms of a
by focusing his gaze on keys of a keyboard on the screen. By
Russellville man. NurOwn has been in trials ten years.
this laborious process, Les provided insight into living with the killer inside his own body.
“Meanwhile, during that same period good patients lost their lives. How wrong is that? I like to use the analogy, since I was
“My ALS started with slight weakness in my left hand and
a firefighter, if I pulled up to a burning building and it was in
arm,” Les says. “It has spread through the rest of my body
the beginning phase of the fire but sat there and waited until
in two-and-a-half years. It also has taken my voice. I am still
someone who was savable perished, more than likely I would
able to transfer, with the help of my wife, into my wheelchair
face manslaughter charges. Is that any different than what the
and recliner. This is huge. I also eat and breathe on my own.
FDA is doing? I think not!”
It is very frustrating not to be able to do things for yourself. I rely on my wife for most everything. She does so without
****
complaining. She is my angel.
Les and Susan first laid eyes on each other in tenth grade at Alma High School. Les had just switched schools and with just
“I still struggle coming to grips with my diagnosis. I want to
one look, Susan saw her future. “When I was like, sixth or
fight and win this battle. I am a very sore loser! LOL. I know
seventh grade, I was shy. Real shy,” she says. “The first time
that miracles happen every day, so I expect a miracle for all
I met him, I ran away from him. I remember all my friends
living with ALS. Until that happens all we can do is live life. We
had boyfriends. I was like, ‘Lord, I don’t even have to have a
have today, my wife often reminds me.”
boyfriend, just send me the right guy. I just need the right guy.’
As a career firefighter, Les says he tried to provide a good
“I always tell him that he’s my answered prayer. When I saw
role model for others to look up to. He hopes to have that
him, I was like, ‘I’m gonna date that guy.’ I knew he was the
effect now, inspiring other families in the same situation to
one. I just knew.”
have hope and providing insight as to what lies ahead. “You have to stay one step ahead of this disease,” he says by way of
Susan shares these memories in the couple’s living room, a
advice. “There is a huge possibility that you will need to make
home that sits just a couple doors down from where Les grew
your home more accessible. Don’t wait until you need to do it, go ahead and do it. It takes time to acquire some things. Also, contact your local ALS Association chapter. They are a tremendous help and have tons of information about ALS.” Like a lot of patients, Les is frustrated at the glacial pace by which promising ALS drugs move through the FDA approval process. He says red tape unnecessarily prohibits people facing a death sentence from trying something, anything, that Les and brother-in-law, Kevin Nelson
might help. DOSOUTHMAGAZINE.COM
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