Woody Guthrie and the impact of a family history of Huntington’s

This columnist can relate to the challenges of having a parent with the disease

Becky Field avatar

by Becky Field |

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“And my mother … that was a little too much for her nerves, her something.” This comment, made in 1940, was the first time American singer-songwriter Woody Guthrie had publicly alluded to his mother’s Huntington’s disease.

Guthrie was born on July 14, 1912, in Okemah, Oklahoma, to parents Charles and Nora Belle Guthrie. Both were musically inclined and served as major early influences on their son, who later wrote the classic folk song “This Land Is Your Land.”

Unfortunately, Guthrie inherited Huntington’s from his mother, and the disease led to his death in 1967.

I can relate

Huntington’s disease has affected several generations of my family. I lost my dad, grandfather, and great-grandmother to it. I tested negative in the summer of 2023, but I know what it’s like to see your family members suffer the cognitive, psychiatric, and physical symptoms of Huntington’s.

My grandfather raged at people and behaved strangely. He drove erratically and ran down the road in his underwear. People assumed he was drunk because of the way he walked.

My dad experienced fewer psychiatric symptoms and less anger, but he did exhibit perseveration (repeating the same words or gestures over and over) and had obsessive-compulsive disorder. He lost his temper one day and beat his fists all around my kitchen, with my children in the room. This was completely out of character for him.

Early in his disease progression, my dad slowed down and appeared not to be coping with life in general. He couldn’t work and had short-term memory problems. He had some jerky movements and a disturbed walk that people would stare at.

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Five photos showing people affected by Huntington's disease, who are sharing their real-life stories during Huntington's Disease Awareness Month, are hung with clips on a string above the words 'Community Spotlight.'

The trauma of Huntington’s disease is shared by the family

Similarly, Nora Belle Guthrie experienced “strange movements and sudden outbursts” that resulted in stares and suspicion from her community, according to an article published on Literary Hub. As a result, Nora Belle often hid herself from the public eye.

In his autobiographical novel “Bound for Glory,” Guthrie shared childhood perceptions of his mother’s behavior:

“If Papa tells Mama somethin’ she forgot, she gits so mad she goes off up in th’ top bedroom an’ cries an’ cries all day long. ‘What makes it?’ I asked Grandma.

‘Your mama is awful bad sick, Woody, awful bad. And she knows she’s awful bad sick. And it’s so bad that she don’t want any of you to know about it … because it’s going to get a whole lot worse.'”

In 1946, Guthrie wrote in an autobiographical sketch that, after his sister Clara’s death, “my mother’s nerves gave way like an overloaded bridge.” He added, “She sang in a voice that not everybody understood.”

Guthrie checked himself into Brooklyn State Hospital in the early 1950s, due to symptoms that were attributed to “Huntington’s chorea.” A manuscript from the hospital dated from 1955 provides Guthrie’s description of how the disease affected his mother.

“I just saw how odd it made her act and do around our house and I seen her lots more every day than my Dad ever seen her. He’d get up real bright and real early every morning and he’d [scribble ???] down his little bit of a breakfast and he’d go saddle up his horse and he’d ride on off to his office down in town. Then she’d throw all of our furniture and all of our fixings, our chairs and our tables and our beds and our bookcases and our dressers all around over our whole house while she had one of her bad spells, and after her fit had worn itself off and gone on and left her, us kids would all go and pitch in and we’d help her straighten our whole place up again and get it all fixed up nice and pretty again by the time we heard Papa’s foot heels scrape on our front porch for our supper time.”

The impact of Nora Belle’s illness on Guthrie and his siblings must have been huge.

My parents protected me as a child from seeing my grandfather’s psychiatric and behavioral symptoms. But children in my family have had to live with the fear of inheriting the disease and the distress of witnessing strange, angry, and aggressive behavior in symptomatic family members. Children in my family have become caregivers to loved ones with Huntington’s disease.

Guthrie saw his mother institutionalized due to the psychiatric symptoms she was experiencing. When he visited for the last time, she didn’t recognize him. Nora Belle passed away in about 1930 in an asylum in Norman, Oklahoma. It wasn’t until later that her illness was recognized as Huntington’s.

In Nora Belle’s time, there would have been very little knowledge of Huntington’s disease, so I can understand why it wasn’t diagnosed while she was alive. Back then, patients were often admitted to psychiatric hospitals, as there were no alternative facilities or treatments available to them. Thankfully, through science and research, we now have a greater understanding of the disease and are able to provide better care to those affected.


Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Comments

David McDonagh avatar

David McDonagh

Becky, our Southend group did a musical about the life of Woody Guthrie in 2009. We did two performances in a school which was sold out and two in The Dixon Studio again sold out. It was amazing and we were told to take it to the Edinburgh Fringe but we couldn’t for many reasons. The music was phenomenal (local amateur dramatics players starred with some HD people helping set up etc. it was brilliant.

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