My younger brother Steve died peacefully in his sleep on September 6, 2014 after a rapid deterioration of his Huntington’s symptoms. He and I had been close as kids, but we drifted apart when our lives took us in different directions as adults.
We came together again about 12 years ago when I found out that I also carried the Huntington’s Disease gene. I had no symptoms, so when I tested I was convinced I would be negative. There are different degrees of the gene mutation, and I was lucky enough to be lower than Steve’s, which was in the mid-range. The mutation level usually determines age of onset and severity of symptoms.
Steve and I have both been deeply involved with the Huntington’s Community. He was a research subject for years up to and including his death. I have been a research subject in several long term observation studies and participated in an early clinical trial of a gene therapy drug. Hopefully our efforts and that of thousands of others will lead to a cure for this devastating disease. I remain symptom free due to my lower mutation level and a brain health supplement regimen that I started after my positive test. Being a life-long runner has also probably helped.
Steve was touched by not one, but 4 Angels in the past several years. His wife Judy and children Andy and Katherine cared for their husband and Dad with love and devotion rarely seen in this world. His long time HD doctor from the Mass General Hospital Center of Excellence, Dr. Rosas, cared for him for years with compassion and skill. She even came to his Remembrance after his death and spoke after I delivered a Eulogy. How many doctors have ever done that? I got to meet her for the first time and received a wonderful hug.
I know where Steve is now. He and our Dad are drinking martinis and smoking Cuban cigars with Elvis, Sinatra, Woody Guthrie, Buddy Holly and Richie Valens. Inexplicably, Mick Jagger and Keith Richards aren’t there yet. Save me a seat at the bar.