I have been a singer for most of my life, starting in elementary school and progressing through college and beyond. When I was an undergraduate at University of Portland, I sang under the direction of Roger O. Doyle. He was a supportive mentor to me long after graduation, and I continued to sing with him as an adult as well as perform in the Gilbert & Sullivan operas he directed each summer. He was a boisterous man, with a booming laugh who often told singers that he “didn’t want any of that ‘candy-ass junior high’ sound.” He gave me the most challenging solo I’ve ever performed, “Dove sono” from Mozart’s The Marriage of Figaro. I didn’t think I could do it, but ROD pushed me and believed in me wholeheartedly. It is one of the proudest moments in my musical career.
In 2009 Roger received a diagnosis of ALS; Amyotrophic lateral sclerosis or Lou Gherig’s disease. Average life expectancy from diagnosis is 2 to 5 years, although it can take months or even years to identify correctly. Roger passed away in April, 2012. In the end, he could no longer conduct as he lost the use of his arms. But even as he lost the ability to speak, the twinkle in his eyes did not fade.
While I was not a member of ROD’s immediate family, since he had no children of his own, all of his students became family. I was present at Roger’s retirement concert, where more than 100 of his former students gathered to sing him the choral pieces that he always said in rehearsal he wanted “sung at his funeral.”
One of the challenges of ALS is that while approximately 5,600 people in the US are diagnosed each year, it is a complicated disease to treat. Because it is neurological in nature, the research is expensive and so are the health care costs for patients. I have found that the more you talk about ALS, the more people you find who have been affected by it. My hope is that a diagnosis can someday mean something other than a steady loss of quality of life. Research indicates that ALS may be genetic, so additional support could help identify early risk factors and provide preventative treatment. Increased awareness of ALS and its symptoms could provide earlier diagnosis and intervention before patients experience dramatic loss of muscle function.
Then, as I was researching for this article, I came across this article identifying a possible genetic link between ALS and cerebellar atrophies. This whole thing just hit home in a whole new way: My husband’s grandfather passed away from complications related to Olivopontocerebellar Atrophy, a genetic disease that causes areas of the brain to shrink resulting in loss of muscle control. Doctors are watching his father for early signs that the disease was passed to him. My uncle has PLS (Primary lateral sclerosis), a rare disease, similar to ALS and sometimes genetic, that causes nerve cells that control voluntary muscle movement to weaken. I have a 14 month old daughter, who may have inherited these genes from both sides of the family. So supporting research into genetic neurological disorders is more than just a tribute to one of my mentors, but a gift I can give my daughter.