By Debbie Adams
Our family will always remember June 9, 2026, as the day our lives changed forever. On that
day, my husband Danny was formally diagnosed with ALS (Amyotrophic Lateral Sclerosis),
more commonly known as Lou Gehrig’s Disease.
ALS is a progressive motor neuron disease that affects nerve cells in the brain and spinal cord. It
leads to muscle weakness and other symptoms that get worse over time. When motor neurons are
damaged, they stop sending messages to the muscles, which then can’t function. There is no cure
for ALS— as of yet.
In December 2025, Danny noticed a weakness in the muscles of his left arm (his dominant arm).
Over the winter months, the loss of strength became progressively worse, along with slurring of
his speech, difficulties in swallowing, coughing, and choking on certain foods and drinks,
drooling, weight loss, and extreme fatigue.
In early spring, he experienced severe weakness in his left arm, some in his right, and almost
completely garbled speech, which we took as signs of a stroke.
Our primary care physician in Vinton did some reflex and strength testing in her office and
suggested some possibilities for what was occurring; she did not believe it was a stroke. She
ordered an MRI of his brain and neck on an “urgent basis.” Once those results were in, she
referred Danny to a neurosurgeon, who ordered another MRI and an EMG nerve conduction test.
The physician who conducted the EMG test spent quite a bit of time thoroughly explaining the
results and suggested a “probable” ALS diagnosis. He arranged an appointment two days later
with Carilion neurologist Dr. Lydia Sharp.
Basically, we were stunned when the doctor who conducted the EMG test mentioned ALS. That
had been one of several possibilities mentioned by physicians Danny saw previously, but our
thought was “surely not Danny.”
There wasn’t much to say over the next few days, waiting for the appointment with Dr. Sharp,
other than praying she would find another cause for the issues he was experiencing, ones that
could be resolved with surgery or medication.
During the appointment, Dr. Sharp reviewed the EMG results with Danny, did more testing in
her office, and asked a series of questions about whether he had served in the military, had Lyme
disease, smoked, had experienced multiple concussions, had been exposed to environmental toxins at work or home, or had a family history of ALS (the disease is hereditary in 10% of ALS
patients; the others are sporadic).
Her examination confirmed the initial ALS diagnosis. She told us how sorry she was about the
diagnosis and asked what questions we had. At that point, we were dumbfounded and didn’t
have many to ask, because essentially ALS was a mystery to us. However, she had a plan– which
was what we needed. We didn’t need all the answers that first day, just a starting point.
Dr. Sharp ordered more lab work and referred him for occupational therapy, speech therapy, and
physical therapy evaluations, and for the Multidisciplinary ALS Clinic which meets monthly at
Carilion.
She suggested medications that would improve short-term survival and slow physical decline.
We did some basic research into ALS and discovered that it was first identified by a French
neurologist back in 1869. It became more widely known in 1941, when it ended the career of
baseball great Lou Gehrig, who played for the New York Yankees.
Gehrig was diagnosed with ALS on his 36 th birthday after noticing several of the disease’s
symptoms while playing– loss of strength, slipping, falling, and loss of coordination. Early signs
of ALS often begin with muscle weakness, which can vary from person to person. Initially, these
symptoms may be subtle and easily overlooked and can affect one or more areas of the body.
Shortly after his diagnosis, Gehrig retired from baseball.
In recent years, ALS has become associated with Dr. Stephen Hawking, a theoretical physicist,
cosmologist (one who studies the universe), and author, who survived for over 50 years with the
disease.
ALS doesn’t usually affect the senses of seeing or hearing. It also doesn’t affect mental
functioning in most cases. It’s not contagious. It is quite rare.
Since Danny’s diagnosis a month ago, we still don’t talk much about ALS. We are focused on
managing or reducing the symptoms as much as possible, determining which foods are easiest to
swallow, the most nutritious foods he can tolerate to stabilize his weight, how to place things on
a level he can reach, how to put on a shirt, how to open bottles.
One nagging question at this point has been, “How will we pay for the drugs and treatments;
what will the insurance cover?”
The progression of the disease seems to be different for each person, so we don’t really know
what the future might be. We are just trying to live as normally as possible. Danny has always
been an “It is what it is guy,” not a “Why me?” person, but this is hard. One of our hopes has
become to raise awareness so that when we say Danny has ALS, people don’t ask, “What’s
that?”
In future articles, we’ll share what we’re learning about the disease, the resources available to
families, and the people in our community whose lives have also been touched by ALS.
