How Huntington’s disease progression affected my dad

A diagnosis came long after symptoms had appeared

Becky Field avatar

by Becky Field |

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My late father, David, never wanted to take the genetic test for Huntington’s disease, an illness that had already taken the life of his own father and his grandmother. He knew there was neither a cure nor a treatment to slow the disease’s progression. For many years, he mistakingly believed he had escaped it.

David was a wonderful dad, the very best my brother, Gavin, and I could have wished for. He was kind, calm, generous, caring, and always smiled his way through life. He lived for his family. We felt safe and loved.

I grew up in Hackbridge, a leafy suburb of London, where Dad worked in an administrative position for the local government. He was clever and worked hard. He was also a talented photographer, writer, and artist, and he took on projects like renovating our home.

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We were lucky to have a large park near our home, and as kids, my brother and I spent hours there with Dad and our dog, Benny. The park had amazing ponds. Dad once rescued Gavin after my brother fell into the pond!

The park’s keepers used to light bonfires to dispose of their lawn cuttings, which fascinated Gavin, who would traipse across the ashes. My mother was never impressed to find he had melted the bottom of his Wellington boots!

Dad taught us to ride our bikes, and he put up with my tantrums when I found it tricky. Gavin, on the other hand, learned quickly, much to my annoyance.

During the Great Storm of 1987, a violent cyclone that meteorologists had failed to predict killed 22 people and damaged our beloved park beyond recognition. Our dad took us to that park the following morning, once the storm had subsided. It was a sight I’ll never forget. Barely a tree was left standing, and some of them were hundreds of years old.

Even at such a young age, I recognized the extent of the devastation. We could no longer use the park’s paths and had to climb across entangled limbs and tree trunks. Dad loved nature and the beauty of the trees, and seeing the park destroyed like that made him incredibly sad.

As a family, we spent quality time together and enjoyed many weekend trips to the beaches on the southern coast of England. We had weekly movie nights, complete with popcorn and sweets. Our dad loved to watch films. I think he enjoyed the children’s movies more than we did!

The symptoms appear and progress

The early signs of Huntington’s disease were becoming apparent in my dad when we moved to Devon, England, in 1988. Gavin and I were about to transition to secondary school. Dad was in his late 30s, and he was having difficulty coping with life in general. A few years later, he lost his job, and his marriage to our mother came to an end. She couldn’t put her finger on what had changed in him, but she knew something had.

I was shocked when Dad had an accident in our family car, as he had always been such a careful driver.

His clumsiness progressed into his early 40s, and he broke lots of drinking glasses in our house and even fell on his way home one day.

By his late 40s, he had slowed down both mentally and physically. He would become confused during small home repairs, and he’d struggle with apathy. He started displaying some obsessive-compulsive tendencies and had short-term memory problems. He’d leave the front door to our house wide open when he’d leave. He’d write notes to himself to remember to finish everyday tasks.

The physical signs of Huntington’s that appeared in his mid- to late-50s made the disease harder to ignore. His shoulders would move up and down, particularly when he was agitated. He’d stroke his nose repeatedly with his fingers. His feet would move back and forth, and he’d lean to one side while sitting down. His head would bob around, and he’d walk with a bouncy, rolling gait.

Dad stopped shaving and getting haircuts. He accumulated debt without understanding the consequences. While he had a few outbursts of anger over things he found too upsetting or overwhelming, he mostly remained calm.

He usually avoided both the doctor and the dentist, but I raised concerns about him with our family physician, who discussed the symptoms with Dad during a routine appointment. He referred Dad to a neurologist, who said the issues likely were due to Huntington’s. A blood test confirmed the diagnosis when he was 57. Dad passed away 11 years later, in May 2020.

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.


Elizabeth Ashford avatar

Elizabeth Ashford

I found your story about your dad so helpful & almost soothing. My 78 yr old husband was diagnosed with HD 4 years ago. Each day for me now is a struggle to care for him & our 3 daughters now live in the shadow of this terrible diagnosis.
There is no financial support available & I have to cope with 24 hr caring. If my husband had terminal cancer, not terminal brain disease, I would be given NHS help.
Life, as always, is unfair.

Becky Field avatar

Becky Field

Dear Elizabeth, I am so sorry to hear your husband has been diagnosed with HD. Please reach out to a social worker through your local social services department at your local council, they will then be able to advise you of any care or financial support that may be available to you.

Nancy Hansen avatar

Nancy Hansen

Dear Elizabeth and Becky,
Thanks, Becky, for the story of your Dad. Reading it, I felt less alone in caring for my nearly 85 year old husband who was diagnosed with HD five years ago. Elizabeth--I don't know if you'll see this or not, but my heart goes out to you. I, too, am coping with 24 hour caregiving. I live in the US and there are very few resources for HD patients and even fewer resources for caregivers of HD patients. I'm in the process of hiring more help because I don't want to start resenting my husband of 37 years.

Becky Field avatar

Becky Field

Dear Nancy, 24 hour care giving is tough, I am pleased you are recruiting more help. I too feel less alone talking to people and sharing my experiences. I wish you and Elizabeth the very best for the future.

Lane avatar


This was a very helpful story for me to read, and made me feel a lot less alone, due to everyone I open up to in my life being unaware what Huntingtons Disease even is. I’m currently 23, my mom has been diagnosed with Huntingtons as long as I can remember. Her symptoms have been particularly bad though as of this year. She has a lot of delusions and hallucinations she can’t be talked out of, and barely even recognizes me when I go to visit. She herself is only in her early 50s now and it’s been scary seeing how fast her symptoms have been developing and getting worse. A part of me wants to get tested but also I don’t know if I could handle knowing if me or my brother were also positive. I wish you well, thanks for reading and writing of your experiences.

Rebecca Field avatar

Rebecca Field

Dear Lane, having Huntington's disease in the family can make you feel lonely and isolated. Some people are unaware of its existence, others are unsure of the symptoms. But awareness is spreading. It has definitely helped me to join support groups and talk to others affected by HD. I have written a column about my journey through the testing process. I wish you, your brother and your family well, whatever you decide about taking the test yourselves.


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