Scott and Sharon Bylsma Enjoy Life Abundantly Despite ALS
Retired Grand Rapids police officer and U.S. Marine Corps veteran Scott Bylsma has a strong faith that permeates his entire life. Together with his wife, Sharon, this couple is raising three children and enjoys the love of family, friends and their “tribe.”
With his inviting smile and calm demeanor, you’d never know that he is struggling with ALS, although his wheelchair and service dog/family pet Sparky are signs that something is going on.
Scott’s journey began with a sore left calf. “In 2006, I became a runner…and over time, an ultramarathon runner. In 2017 my calf began to hurt so I asked a friend who is a physical therapist to give me some exercises to do.”
At that point in his life, Scott felt physically invincible.
Just two weeks later, though, he couldn’t lift the toes on his left foot. After consulting his primary care physician and an orthopedic specialist, Scott was referred to a neurologist who performed an EMG. The diagnosis was ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease).
Scott vividly remembers the day of his diagnosis in 2017: “I had a strong faith before that day, but the diagnosis was a huge blow. There were tears, and I felt devastated. It experienced a combination of fear and despair…as if my life had been sucked out of me. As a husband and father, I wondered, How could I provide for my wife and children?”
Sharon clearly recalls that day too. “We left the facility with a packet of information and then sat in our car in the parking lot. We didn’t start the car; we sat in silence. After a long silence, I remember finally saying, ‘Where do we go from here?'”
A Second Opinion
When the Bylsmas decided to get a second opinion, a friend guided them to Mercy Health Hauenstein Neurosciences and Neurologist Dustin Nowacek, MD.
Scott recalled Mercy Health’s thorough diagnostic approach: “I liked the fact that this second neurologist took his time before he gave me a definitive answer. Over a few months, Dr. Nowacek performed a series of treatments called Gammagard to check for another possible diagnosis.”
“We were pretty excited that we didn’t have to travel far away…that we could get a second opinion from specialists right here in our backyard,” Sharon added.
In the end, Scott was diagnosed with Sporadic ALS, which can strike at any time and is not genetically based, as is Familial ALS.
A Different Kind of Care
At Mercy Health, the Bylsmas immediately felt at home. “ALS is a hard thing to deal with, but we felt like the Mercy Health medical team had our backs. We finally had a direction and a road to follow,” said Sharon.
Scott describes Mercy Health as “more than a well-run medical facility.” He was impressed with Our Lady of Mercy Chapel and the Christian artwork throughout the campus. “My faith is very strong, and during my very first visit, I felt like Mercy Health staff were caring for me physically, emotionally and spiritually.
“You really feel the presence of God at Mercy Health. You’re not a number. During one of my visits, a staff person gave me a prayer blanket with a message tailored for me. You can feel warmth and compassion from the environment and from the people. Mercy Health is a blessing to me…it’s like an extended family.”
Another Significant Change
When Nowacek announced that he would be moving to Ann Arbor to do research on ALS, the couple learned that Scott’s care would be transferred to Melanie Taylor, MD. Scott and Sharon weren’t sure they wanted to change neurologists. They had so many questions.
“In my mind, I was prepared for the worst. Immediately I saw that Dr. Taylor had a joy-filled, friendly presence…but was she a good neurologist? She blew me away not only as a medical professional but as a specialist who was comfortable sharing her faith too.”
Clinical Trials
Scott is motivated to do all he can to help conquer this disease for the ALS community. “Early on, I decided that the disease was not going to have victory over me; I was going to have victory over it.”
One way he would help was to explore the possibility of becoming part of a clinical trial. Scott learned that most clinical trials for ALS are based in larger cities. His research led him to a clinical trial in Boston, but it was going to be both expensive and time-consuming.
“Mercy Health was supportive of my interest in going to Boston, but they also offered to make me part of a trial right here in West Michigan. It turned out that Mercy Health’s clinical trial fit our lifestyle best.”
Scott knows he may be part of the trial’s placebo group, but “participating in a clinical is not about me. It’s about helping the medical community figure this out for future generations. I want to help beat ALS.”
Another way Scott supports the ALS community is by participating in Nana’s Run, sponsored by Mercy Health, which will take place on Saturday, May 5 at Rosa Park Circle. As a spokesperson for this 5K, Scott invites all to participate and raise awareness. Proceeds from Nana’s Run will benefit the ALS Clinic at Mercy Health and The ALS Association Michigan Chapter.
Support System is Key
During this journey, Sharon and Scott have learned to graciously rely on a huge, continuous support system, that includes family, friends, Grand Rapids Police Department members, the staff a Mercy Health and church members, whom they refer to as their “tribe.” Together these supporters help with the family’s emotional, physical and spiritual needs.
Ever the optimist, Scott’s perspective serves as an inspiration: “Yes, ALS is a bad thing, but other things like cancer and alcoholism are also difficult. Accepting support makes all the difference. We are so blessed.”