By Debbie Adams
Part 3 of a series on ALS from the perspective of those who have been recently diagnosed and
their caregivers.
ALS (also known as Lou Gehrig’s Disease) is a disease of the nervous system 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.
ALS is rare. Statistics indicate that about 5,000 cases are diagnosed in the United States
annually. About 30,000 Americans have ALS at any one time. ALS is progressive. Right now
there is no cure– there is just learning to manage and, hopefully, reduce the symptoms.
Initially symptoms vary from person to person with ALS. It often begins in just one limb, then
spreads and affects muscles throughout the body. Weakness in a muscle but without any pain is a
common early indication.
That’s why it is important to connect with a multidisciplinary ALS Clinic, such as the one at
Carilion in Roanoke.
In addition to improving quality of life, studies have shown that attending a clinic on a regular
basis can extend your life. Attending the clinic gives you a team of specialists who coordinate
your care, help manage symptoms, make individualized recommendations, recommend medical
equipment and assistive devices, educate you about ALS drugs and clinical trials, and provide
ongoing guidance, on the day of the visit and between visits (generally through My Chart).
My husband, Danny, was diagnosed with ALS on June 9, 2026, by neurologist Dr. Lydia Sharp,
Medical Director of the ALS Clinic at Carilion. During our first meeting with her, she
recommended signing up for the clinic. Danny’s first appointment there was this past Monday,
July 27.
It was an exhausting afternoon– about four hours in total, a marathon of meeting individually
with a neurologist, a dietician, a physical/occupational therapist, a mobility specialist, a
representative from the local ALS Association, a mobility specialist, and a speech and
swallowing therapist. The patient remains in one examination room while the specialists rotate in
and out during the course of the afternoon.
Patients are encouraged to bring caregivers, family members, or friends along to help ask
questions and take notes.
After the visit, patients receive a report with recommendations via My Chart or another method
of communication.
The first session that afternoon– with the neurologist– involved an examination, testing strength
and reflexes at one point using a small hammer. Vitals were good including blood pressure and
heart rate. The doctor ordered lab work to test for liver damage from the ALS medication Danny
is taking– riluzole. He suggested a feeding tube as a way to gain weight when chewing and
swallowing food is a struggle. He mentioned seeing a lung doctor potentially for a device to
assist with breathing at night.
Next in the rotation was the dietician who also discussed the need to maintain or hopefully even
gain weight. She discussed eating more slowly, taking more time for meals and possibly eating
six small meals a day instead of three larger ones. She suggested drinking high protein drinks,
such as Ensure or Boost, and tons of water.
She is one of the few medical personnel who encourage patients to “eat more fats. Smear on
butter and sour cream to increase calories.” She also encouraged a feeding tube sooner rather
than later.
Then we saw the respiratory therapist who conducted several tests involving nose clips and
forcefully blowing out air to measure his rate of respiration.
A physical therapist talked about modifications to bathrooms, furniture, and even the entire
house to aid in mobility– raising chairs and couches on risers, adding ramps where there are
stairs, sitting on cushions on sofas to make it easier to stand up, and installing shower hooks to
make showerheads easier to reach. With very limited use of his arms, Danny was interested in
the shower hook suggestion.
A mobility specialist discussed medical equipment which might become necessary– motorized
wheelchairs among them.
Karen Miller, Coordinator of Care Services for the local ALS Association, explained the services
the non-profit organization provides. She had questions about the progression of the disease
Danny is experiencing and his early symptoms. She had answers to one of the questions we
arrived with– how to share the ALS diagnosis with young family members and how the disease
might impact the body over time. Books and videos exist which aid in understanding. She said
children understand more about what is going on than we might think.
Danny described the feeling of a numb tongue to the speech and swallowing therapist; she works
on both problems. His voice has become softer, more slurred, less precise over recent months,
but not to the point that he is frustrated or hesitant to repeat his words for someone he is talking
with.
She had many suggestions for new technology to improve quality of life from phone apps to
computers if speech becomes more difficult or impossible. She, too, explained the advantages of
a feeding tube in preventing pneumonia from aspirating food.
She also talked about eating strategies that conserve energy– smaller, more frequent meals,
eating more slowly, eating softer foods, adding nutritional shakes, adding fat, not talking while
eating, and coughing until it is over with– don’t add more food until the coughing is under
control. Straws are our friends and be sure to tuck in your chin when you swallow.
The amount of information we were offered was staggering, but helpful in developing a plan for
living and adjusting our lives as the disease progresses.
Jim Cunningham of Vinton is also an ALS patient. He and his family also attended the clinic on
Monday– not their first appointment since he was diagnosed in April. One of them said, “We’re
taking things day by day.” The response from one of the specialists was, “It can also be minute
by minute.”
