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

September 23, 2015
Gene Robinson Clagg Frank 1927-1996

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

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.


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

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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21 Comments leave one →
  1. pastordt permalink
    September 23, 2015 3:05 pm

    Man, this is hard, hard, hard. Thank you for writing it out, Adelle.

  2. Michelle permalink
    September 27, 2015 9:54 pm

    My mom has it. Words cant express what it feels like to watch your mom die a slow death. Thank goodness with meds she has been pretty good with movement. But she is in the stage where she is not understandable. And been in a chair wheel chair for a few years now. My I ask did your mom or any of your family come down with it? Know its a 50/ 50 chance but just wonder sometimes. My great aunt had three kids die from it.

    • September 27, 2015 10:09 pm

      Hi Michelle, I’m so sorry to hear about your mom. I know just how hard it is; my mom did indeed inherit her mothrer’s gene and died 9 years ago. I’ve written about that experience as well, if you read the next post. My grandmother had three children. Two have died, the third did not inherit. Thanks for taking the time to comment. Choose hope!

    • Charles Doxley permalink
      January 21, 2016 5:27 am

      Is there help out there for families dealing with this. I know a family that has had 6deaths in 40yrs an has 6 living with it…All one family

  3. September 30, 2015 7:56 am

    Thank you Adelle, tears immediately sprang to my eyes when I read the line “Imagine having…”: Huntington’s is so hard to explain to people, they just can’t comprehend it. Our family has lost 2 young women and a wonderful young man to juvenile Huntingtons. We are forever changed and forever scarred by it, especially my sister, their mother.

    • September 30, 2015 9:03 am

      Shari – I can’t even imagine. Watching a parent go through HD is one thing, but your child?! What a horror. I’m so sorry for your loss. Thank you for taking the time to read and comment. Choose hope! Hugs.

  4. Charles Doxley permalink
    January 21, 2016 5:24 am

    Huntingtons Disease. Im convinced without doubt that I know a family that is the Biggest in the United States suffering with that terrible MONSTER of a disease…im 40 6 deaths due to the illness…an 6 living with it…youngest showed in mid 20s. Oldest living with it is 55….

  5. January 27, 2016 4:22 pm

    Thanks for sharing your story – I’ll be following your blog. My husband has been HD Symptomatic for about 8-10 years. It’s awful watching him lose part of who he is every day. I have shared a link to your blog on my facebook awareness page:

    • January 28, 2016 10:46 am

      I’m so sorry for your situation! Thank you for sharing. Together, we will hope for a cure!

  6. benny1215 permalink
    January 27, 2016 10:48 pm

    Hi, my mother has HD.As i see my mother going down hill,. I find it very depressing.

  7. michele lloyd permalink
    January 30, 2016 12:34 pm

    Thank you for sharing your family’s story. As a hospice nurse I have cared for several patients with HD. I witnessed their struggles and fears of their families. I have worked with families that chose to be tested for HD before they had children and those that did not, thus risking passing the gene to future generations. God bless you and your family.

  8. Lisa McCormick permalink
    January 31, 2016 9:41 am

    I had a first cousin die with this horrible disease. And now her daughter is battling HD. She has two small daughter’s.It’s horrible what it does to people you love. I hope some day they find a cure

  9. chris dignan permalink
    February 16, 2016 9:16 am

    my name is chris dignan i have 12 brothers and sisters 9 tested posative for HD includig myself so much for 50/50 chance of getting this nasty disease i think the #s are way under estamated in this country !

  10. Dana permalink
    January 17, 2017 9:08 pm

    By any chance have you heard of the facility Mission Lodge in San Gabriel, Ca?

  11. Michael Bohanon Sr permalink
    July 26, 2017 7:41 am

    Good morning my wife had Huntington disease She passed away last year July 16, 2016 She was diagnosed in 01 Was married for 31 years always promised her I would keep her at home never put in a nursing home that’s what made her happy even though she’s gone she’s in better hands now she’s one of God’s angels looking down on us I have one son was diagnosed with the same thing he’s 29 years old have shows any signs yet thank God for that never give up always stand by their side no matter what 😇🙏🌈

    • July 26, 2017 7:53 am

      Thank you for sharing, Michael. I’m so sorry for your loss! Thank you for your commitment to your family.


  1. Huntington’s Disease: Losing Karen, Part II | Adelle Gabrielson
  2. Huntington’s Disease: Part III, Now You Know, What Can You Do? | Adelle Gabrielson

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