Huntington’s Disease – Facts, Not Fiction, about the “Worst Disease Known to Mankind” Part I

Gene Robinson Clagg Frank 1927-1996

Fenway seats just over thirty-seven thousand, about the same number of people as have Huntington’s in the United States. Thirty-seven thousand. It’s a faceless number.

― Lisa Genova, Inside the O’Briens

New York Times best-selling author Lisa Genova, acclaimed author of Still Alice, which brought into the limelight the reality that is Alzheimer’s disease, has recently launched her newest novel, Inside the O’Briens. What she’s done for Alzheimer’s, her fans claim, she’s now doing for Huntington’s disease.

Most people have never even heard of Huntington’s disease.

Imagine having ALS, Alzheimer’s, and Parkinson’s … at the same time. Huntington’s disease (HD) is the lesser-known ugly cousin of such neurodegenerative disorders. HD is hereditary. Passed from parent to child, those born into these families have a 50-50 chance. For those who inherit the gene, the chances of contracting the disease are 100 percent.

For those of us who have had a parent with Huntington’s disease, the chance of experiencing decades of anguish and heartbreak are also 100 percent.

Click to Tweet: 30k in US suffer from HD, 200k at risk. What they have to look forward to; why we need a cure @HuntingtonsRR @HDSA http://ctt.ec/4s8xc+

I’m grateful for what Genova has done to bring this tragic illness into view. But her story is fiction. Mine is not.

As a small child, I remember Grandma Gene was never like the other grandmothers. My brother and I used to joke about the importance of strategic positioning when Grandma kissed us goodbye. Her spasmodic, jerky movements made her landing a damp kiss on our mouth or ear as likely as landing a targeted kiss on the cheek. She choked nearly every time she ate, sipping only through a straw, frequently spilling food down her blouse and into her lap. Most vividly, I remember her constant, involuntary, movement — fingers twisting open and shut, head and shoulders bobbing. She would ride in the car with one arm pinned behind her back, just to keep it from flailing all over the backseat by itself.

At the time, my grandmother was barely in her 60s — still young by any standard — and already a patient in a convalescent home. Her cropped, shorn hair hadn’t yet turned completely gray. Swathed in a terry cloth, adult-sized bib, she struggled to walk the facility with us on our visits. Her room reeked of incontinence and indignity.

Grandma was never angry or unkind. Always happy to see us, she darted in for that damp kiss as soon as we entered the room. I don’t remember the fierce dementia that so often accompanies HD. I remember her being kind. Always smiling. Saying everything would be “just fine …”

Eventually, my parents stopped taking us along for visits. I didn’t see her the last several years of her life, but I knew she spent them strapped into a bed so she couldn’t involuntarily fling herself out of it. Unable to speak, unable to eat, barely able to breathe. My grandmother’s life, like many victims of HD, ended by choking to death. Suffocation by spasms of the throat.

She was only 68 years old. 

Over the course of the next week I’m going to be sharing pieces of a longer essay I wrote about our family’s personal experience with HD. They are not cheerful posts. There will be no funny stories of boys and their shenanigans. But they are important stories, stories that must be told. For those who do not know, and should. For those who know, and cannot speak them for themselves. For those whose story has not yet begun, but will, because there is no cure for HD.

Yet. 

Click to Tweet:  The Worst Disease Known to Mankind. The truth, and why we need a cure. @HuntingtonsRR @HDSA http://tinyurl.com/o7cqxgk

Read Part II and III of this series:

Huntington’s Disease: Losing Karen, Part II

Huntington’s Disease: Part III, Now You Know, What Can You Do?

Previous posts about my personal experience with HD.

On Death, Joy, and Tattoos

What Not to Pray (Unless You Really Mean It)

The Waiting: On Fear, Friendship and Snorkeling

 

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