How Huntington’s disease can affect the ones left in charge

Marcy and I met in 1986, when we were both sophomores at Cornell. She was studying labor relations, and I was majoring in mechanical engineering. We were in our 20’s when we married, and although we learned that her mom had just been diagnosed with something called Huntington’s chorea, we knew relatively little about it and put off thinking about it. We never imagined that one day one of us would ever become the other’s primary caregiver, and we were optimistic about the genetic research and scientific advances being made in the early ‘90s. 

I remember our first date at an independent theater in downtown Ithaca; watching a foreign film with subtitles and having coffee after. I recall the many Sundays we would get the New York Times, bagels with cream cheese and a bag of Doritos and then stay in bed all morning reading and chatting.  

After graduation we moved together to New York, made new friends, went to bars, occasionally the opera or theater, established our working careers, and ultimately began raising two kids. We were married in Central Park, and we cherished our annual summer vacations to Martha’s Vineyard and Cape Cod. We often visited my parents in Thailand, and I can still remember how hard we laughed when we visited a rural zoo and all of the Thai visitors ignored the animals, and instead were fascinated by Marcy, because they had never seen a blonde before.

It’s been more than ten years since Marcy was officially diagnosed with Huntington’s disease, and about three years since she became a full-time resident at Terence Cardinal Cooke, the same nursing home where her mother lived the last 22 years of her life. Marcy would visit her often, usually after work a few days a week, and always on the weekend. Now I do the same. A few months ago, Marcy said to me this was where she was going to live out the rest of her life. 

I cried.

‘The nastiest of all surprises’

Living with Huntington’s is hard. Kurt Vonnegut wrote in Galapagos, “Of all the horrible diseases known … Huntington’s chorea may have been the worst. It was surely the most treacherous, the nastiest, of all surprises.” The continual stress, the psychosis, the persistent anxiety, watching your loved one suffer. I’ve yet to know a single family who has escaped. The odds are 50-50 if one of your parents is afflicted. As an engineer, I once calculated the odds as only one in eight that Marcy and her two siblings would not be affected, or in other words seven in eight that at least one of the siblings would have the gene.

There have been, of course, many bright spots along the way. One of the brightest was a ski retreat organized by one of the Huntington’s support groups. Seemingly impossible, almost recklessly crazy … a group of patients afflicted with a degenerative motor-coordination disease going skiing! As it happens, the ski-trip was at Windham Mountain, which has an incredible partnership with an adaptive skiing program designed for individuals with disabilities. Every Huntington’s patient would have two ski-instructors to assist. A chance to relive something they may never get to do again.

Last line of defense

The hardest part for me is the constant feeling I’m the last line of defense. Huntington’s is relentless, very consuming, and can require us to sacrifice other important parts of our lives. It’s so hard for me to ever say no. How can you say no to someone you’ve loved and known since you were teenagers? If there’s any difficulty, whether it’s a late night trip to the emergency room, daily visits during a hospitalization, a dental appointment, even cleaning the bathroom after an accident, I always say yes. Though I absolutely don’t mind, and there are family members who can occasionally help, dealing with all of this and the continual progression of the disease is full-time, all the time.  

However, we remain so very grateful to the community of researchers, scientists, social workers, nurses, aides, and other family members who are all helping to provide support, develop a treatment, and find a cure. I always get goosebumps when I hear about a possible new therapies, promising research, a new drug, whatever we think might work. We’re optimistic. Someday there will be a treatment, there will be a cure. So we cheerfully look forward to the future.