Last week I wrote about my experience attending the Illinois State Conference for Huntington’s Disease, the Huntington’s Disease memory quilt, and the Team Hope Walk for a Cure on May 17th, in which I and many of my firm members will be taking part. This week I want to share more about the specifics of this degenerative disease and some of the amazing people who live with it every day.
Huntington’s Disease (HD) causes brain cell atrophy, which eventually destroys attention, memory, liver functions, and executive functions (such as organizing, prioritizing, controlling impulses, and monitoring self-awareness). The current model of HD treatment and intervention is a battle to try to delay the progress of the disease. There is no known cure.
Most of the speakers at the conference were outstanding medical and neuropsychological experts, and I felt a little awkward speaking to the audience about the “elder care and disability journey” when the average age for the onset of HD is only 39. After symptoms appear, the disease trajectory is a long 18-year decline.
HD may strike only 1 out of 10,000 persons, but it often affects 50% of the family members who are genetically vulnerable. Some of the speakers spoke about how they initially tried to deny their symptoms—trying to hide their involuntarily moving legs. They spoke of the loss of their jobs, their friends, and often other family members. Families of those with HD symptoms live with the terror of seeing their loved ones suffer, and their own fear that they too will get the disease. For others, the disease has given them unique strength and perspective; one person boldly announced, “I am not dying of HD. I am living with HD!”
Everyone agreed that persons with HD must exercise both the body and the brain to keep active and maintain a better quality of life. In fact, one presenter praised the Nintendo Wii video game for keeping their adult son mentally and physically fit. These same parents have found it fun and helpful to join their son by challenging him to various Wii Fit competitions. They credit this video game activity with maintaining their son’s mental, motor, and physical health. From one doctor visit to another the doctor has stated that their son’s decline has actually stopped! The mom enthusiastically exclaimed, “What better way to spend time with your HD-affected loved one than laughing, playing, and challenging each other with Wii Fit. You just can’t be too old to play the Wii Fit game. We wish that we had bought stock in Nintendo!”
The good news is that there is hope for a cure in this generation. Dr. Richard Morimoto, Ph.D., of the Northwestern University, a National HDSA Coalition for the Cure scientist, reported in his keynote address entitled “From Bench to Bedside: New Discoveries and Therapeutic Candidates for Huntington’s Disease” that due to the identification of the gene responsible for the mutation and the ongoing investment of pharmaceutical companies into research and development, there is hope for a cure in this generation.
Let us pray with every member of a Huntington’s Disease family that this hope will be realized.