By Debbie Adams
The lives of Jim and Judy Cunningham turned upside down when he was diagnosed with ALS
(Amyotrophic Lateral Sclerosis) on April 8, 2026. ALS, also known as Lou Gehrig’s Disease, is
a neurological (nervous system) disease that begins in the brain and spinal cord and affects nerve
cells called motor neurons. These motor neurons provide a line of communication between the
brain and muscles, which produce movements like walking, chewing, breathing, and talking.
It’s a rare disease. Statistics indicate that about 5,000 cases are diagnosed in the United States
annually. About 30,000 Americans currently have ALS. As of yet, there is no cure— there is just
learning to manage, and hopefully reduce, the symptoms.
The Cunninghams have both lived most of their lives in Vinton. Jim’s family lived in Southeast
Roanoke when he was a child, but his stepfather, Jack Anderson, owned the Amoco Station on
Pollard Street where the Vinton Municipal Building sits now, so much of his childhood was
spent in Vinton.
He worked at Hub Pattern in Roanoke for 41 years which makes patterns for foundries—
anything that can be cast. His wife Judy is the executive director of the Vinton History Museum.
They just celebrated their 59th anniversary.
The Cunninghams say they were totally surprised by the diagnosis since Jim, age 79, has been
completely healthy his entire life, never having surgery or any hospitalizations. In fact, Judy says
his first stay in a hospital bed was in the emergency room at Carilion, from issues related to his
ALS.
He has always eaten healthy foods, exercised, never smoked, never drank. He has lived a life
focused on family, church, and wholesome hobbies including old school hot rods, hunting, and
home projects.
A couple of years ago, Jim began experiencing weakness in his legs, then body weakness, which
progressed to his hands, leaving him with problems writing. His speech is still good, although his
voice is softer in tone. He has experienced a significant weight loss in recent months.
Physicians first thought his symptoms might indicate arthritis, leading to 12 weeks of physical
therapy. Eventually doctors decided on spinal surgery. As part of the preparation for the planned
surgery, Jim underwent one more procedure— an EMG Nerve Conduction Test by Dr. Christian
Van Doren, a Physical Medicine and Rehabilitation Specialist at Carilion.
An EMG Test evaluates the electrical activity of muscles. It involves inserting a needle electrode
into the muscle to record its electrical activity at rest and during contractions. The results can indicate whether a muscle is functioning properly and whether it is receiving appropriate signals from the nerves. Dr. Van Doren inserted needles in all four quadrants of Jim’s body and even in his tongue.
The results of that test changed everything.
“Jim called me from Dr. Van Doren’s office, saying ‘I have ALS,’” Judy said. “I went to the
computer and did a search while he was driving home. I’ll never forget how it felt— like my
heart just stopped. I had to quit reading.”
The surgery was immediately cancelled because it might make the ALS worse or cause other
complications.
Jim was quickly scheduled for an appointment within days with Dr. Lydia Sharp, medical
director of the Carilion ALS Clinic.
“I texted the kids from Dr. Sharp’s office instantly when she confirmed ALS. She was very kind
but did not sugar coat what was ahead for us. I remember we were in shock and just looked at
each other and I grabbed his hand,” Judy said. “Driving home, we were very quiet.
“Several hours went by and both of us said we must tell the kids. He asked me if I would do it.”
The Cunninghams’ advice for anyone diagnosed with ALS is to “get all the information you can;
reach out to every source available. Try to get to know someone with ALS or a caretaker who
understands the heartbreaking journey.”
Judy says she wants to be there for anyone she can help in the future and to be involved in the
community in spreading awareness of ALS.
There are actions people can take, such as advocating for bills in Congress regarding research
funding for ALS, which is backed by Virginia’s congressmen and senators. She knows because
she has written to them asking for support.
As for what they wish existed for ALS patients and their families/caregivers: at the top of the list
would be hospitals and medical staff receiving more education about ALS, especially in
emergency rooms.
ALS seems to take a long time to diagnose, possibly because its symptoms mimic those of so
many other diseases. Judy believes that if medical personnel learned more about the symptoms
and ordered the EMG test sooner, ALS patients could be diagnosed more quickly and get
treatment/therapy for their symptoms.
They noted that ALS creates big expenses no one is prepared for. There are clinical trial drugs
available but very costly. One drug Jim has taken costs $22,000 a month. However, there are
grants and other funding that can be applied for.
What they have experienced so far in their journey includes medications (currently four mainly
for pain and breathing), insertion and then removal of a feeding tube, the addition of a
customized motorized wheelchair, and a lift chair, moving the household around to be more accessible and removing unneeded furniture, making oxygen available, signing up first for
palliative, then hospice care.
They signed up for a “Voice Preservation Services” program which records the ALS patient’s
voice for future use when their speech becomes more difficult to understand. It essentially
creates a custom synthesized voice based on samples of your speech, in essence “banking your
voice.”
They have been told that other countries are more advanced in ALS research and treatment than
the United States at this point. The Cunninghams want to do what they can to change that.
Judy shared a quote from the Virginia ALS Association about the journey with the disease,
“ALS takes away the ability to walk, talk, eat, and eventually breathe— but it can never take
away courage or hope. Until there is a cure, people living with ALS and their loved ones deserve
every possible resource, every moment of support, and every opportunity to live with dignity.”
In future articles, we’ll continue to share what we’re learning about the disease, the resources
available to families, and the people in our community whose lives have been touched by ALS.
