Finding Hope in Community: Carl Moore’s ALS Journey

Carl Moore had never heard the term ALS – or amyotrophic lateral sclerosis – until he was diagnosed 30 years ago at age 32. 

As a helicopter mechanic, he was always active at work and maintained that same lifestyle during his free time as an avid cyclist, logging rides as long as 100 miles just for fun.

Before his official diagnosis, Carl experienced several symptoms over the course of 18 months, but hadn’t put them together as a cause for great concern. His wrists and hands were beginning to feel weak, for example, and it was increasingly more difficult to work or do certain exercises, like push ups. 

It took a routine physical examination for a new job to discover that this was more than a sprain or a short-term issue, and he was referred to a neurologist. Following several months of medical tests and monitoring his symptoms, Carl was referred for a second opinion with Dr. John Ravits, a neurologist at Virginia Mason Franciscan Health (VMFH).  

Dr. Ravits, a pioneer in the field of ALS research and treatment (and the first director of the VMFH ALS Clinic), was the first person to share the ALS diagnosis with Carl. He left the office with his wife Merilyn and they immediately began to research and understand the impact of the diagnosis. 

What they learned about the disease at the time was difficult to accept. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It causes one’s muscles to atrophy and weaken over time, resulting in losses of ability to speak, eat, move and breathe. A person diagnosed with ALS has an average life expectancy of 2-5 years following diagnosis, with some people living with ALS for 10 years or longer. Fewer than 5% of those diagnosed make it past 20 years. 

This year marks Carl’s 30th year since his diagnosis and living with ALS. He recently attended his biannual multidisciplinary ALS Clinic appointment, and was able to celebrate the 30 years of continuing specialized care at VMFH with his team. 

Carl has the highest words of praise for his care team at VMFH, many of whom have been by his side for more than 20 years. He considers them family. One of his fondest memories was a BBQ at his home provided by the entire care team (an auction donation item purchased by the Moore's and donated by the care team for an ALS fundraising event).

 
“I feel honored to have the opportunity to get to know Carl and Merilyn and be part of Carl’s health care team for over 20 years,” noted Piper Paul, Clinical Program Manager. “I have learned so much from them and continue to be amazed by their dedication and passion in helping patients and families living with ALS. Carl is a true inspiration.” 

When Carl first met Dr. Ravits, he was enrolled in a clinical trial and then introduced to the whole ALS clinical team. Carl and Merilyn shared that the very professional, ongoing symptomatic management and encouragement from the ALS team have been integral to where he is today. 

However, the community he discovered along the way is most important and what brings him immense joy and purpose.  

Carl and Merilyn were referred to a support group by VMFH when Carl was first diagnosed. They found great comfort being with others going through a similar journey. The support group discontinued not long after they joined, but they did not let the community slip away. 

Beginning as a free-standing support group of the ALS Association in the late 1990s, they were instrumental in founding the ALS Association Evergreen Chapter, now known as the ALS Association Washington. Emotional and practical support continues to be freely available to individuals and families living with ALS. This includes monthly support groups, care coordinators who connect persons with ALS with donated loaner mobility and assistive equipment and devices, and other resources to make life more manageable. The funds they raise continue to go to support research and those living with ALS. 

Today, Carl continues to focus on living everyday to the fullest, and encouraging and inspiring others to do the same with his genuine heart, zest for life and contagious sense of humor. His 30th year biannual ALS Clinic appointment day was celebrated with hugs, sharing memories and enjoying tiramisu, his favorite dessert. He had every nurse, therapist and physician laughing through each test and examination. 

When asked what advice he had for others going through a similar diagnosis, he shared “You can live with ALS. Don’t focus on dying from it." He also noted the importance of seeking help and accepting assistive gadgets even before you think you need them. 

Studies and treatment advances continue to evolve for those living with ALS. The VMFH ALS Multidisciplinary Clinic was one of the first to be certified as a Center for Excellence by the ALS Association.