book reviews, family, healthcare

Repost: A review of Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s

I originally reviewed this book on September 2, 2017. It appears here “as/is”.

I have mentioned several times on this blog that I once had neighbors whose family was profoundly affected by Huntington’s Disease, a fatal genetic condition that robs the afflicted of their minds and bodies.  Last month, I purchased Therese Crutcher-Marin’s 2017 book, Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s.  I just finished reading the book today.

In the 1970s, author Therese Crutcher-Marin met her husband, John.  She fell in love with him and grew to love his three older sisters, Lora, Marcia, and Cindy.  John and his sisters had grown up without their mother; she was committed to a psychiatric hospital when they were young.  She later died, but it wasn’t until they were adults that they found out she’d had Huntington’s Disease.  Compounding the issue was the adult children’s father, Big John, who had never been much of a parent to his kids.  Big John had a second wife who was not particularly friendly to them, either. 

Every child born to a parent who has Huntington’s Disease has a fifty/fifty chance of inheriting the gene that causes the disease.  Every person who has the gene for Huntington’s Disease will eventually get the disease if he or she doesn’t die of something else.  It’s not possible to have the gene and simply be a carrier.

Therese loved John, but knowing that he may one day develop a very demanding disease that would eventually kill him at a young age was very difficult for her.  Eventually, the author decided that life is a crap shoot anyway.  She married John and they launched their careers and started a family, eventually having two children.  Meanwhile, each of John’s sisters developed Huntington’s Disease.

This book is mainly about Therese Crutcher-Marin’s experiences watching her beloved sisters-in-law getting sick and eventually dying.  The author’s husband opted not to be tested for the gene until after he was already past the age at which symptoms usually appear.  Fortunately, he did not have the gene, since he and the author had two children together.

For the most part, I found Watching Their Dance very informative and interesting.  It’s well-written and I admired how dedicated Therese Crutcher-Marin was to her husband’s family.  However, there were some parts of the book that I felt were a bit extraneous.  Sometimes the book read like a very newsy letter home; it included some information that didn’t necessarily seem relevant.  Therese does explain that she has problems with obsessive compulsive disorder.  She is a meticulous planner.  Perhaps that’s why this book seemed a little more detailed than it needed to be about things that weren’t pertinent.

I also feel that although Crutcher-Marin’s writing is mostly very functional and correct, her style isn’t particularly eloquent.  Some authors write effortlessly and colorfully.  Crutcher-Marin’s writing is serviceable, but not very artistic.  I got the sense that writing the story was hard work, although she did the work to high standards.

I did appreciate Crutcher-Marin’s candor about what it’s like to watch loved ones with Huntington’s Disease.  It’s a rare disease and a lot of people have never heard of it.  I happened to have seen it in person, so much of what she wrote about made sense to me.  Sadly, Huntington’s Disease has no treatment or cure.  The only thing that can be done is controlling the symptoms.  Moreover, it’s very difficult to find adequate care for people with Huntington’s Disease.  Those who have the disease do not die of it; instead, they die of complications arising from the disease process.  Many sufferers waste away because they can’t eat adequately or they develop an infection, like pneumonia.   

I can’t imagine how difficult it must have been for Therese, John, and their children to watch as Lora, Marcia, and Cindy each developed symptoms and eventually died.  Each of the sisters suffered in her own way.  One sister died quickly after developing a brain bleed after a blow to the head.  She had been taking Coumadin.  Another sister languished for years with Huntington’s Disease before she finally died.  The third sister developed the disease in her 40s, a late onset by most Huntington’s standards.  She managed to be independent and travel for some time before she, too, got very sick and died in her fifties.

I think Watching Their Dance is well worth reading, especially for those who know or love someone with Huntington’s Disease.  I am not aware of other books about what it’s like to be a caregiver to someone with HD, so this is a valuable book. 

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