Sharing the story of my family’s journey with Huntington’s disease

I remember my family speaking openly about Huntington’s disease (HD) throughout my childhood. Our paternal great-grandmother had passed away before my brother and I were born, and our paternal grandfather passed when we were very young. Both had HD.

Growing up, my brother and I heard stories about our grandfather. He’d chased Mum and Dad down the street in a rage, wearing only his underpants. He washed lettuce with soapy water. He told Dad he was putting a plug in the socket the wrong way. He had a rolling gait and slurred his words. People often thought he was drunk.

We didn’t see much of him, as our parents kept us away to protect us from his anger. I remember Mum and Dad being concerned that Huntington’s is hereditary, but back then, I didn’t feel worried. Our grandfather’s HD seemed a world away from our family.

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Dad started to behave differently in his early 40s. We noticed changes in his personality, but with limited information about HD, we assumed he’d just lost confidence.

Dad was in his late 40s when he started displaying physical symptoms of HD, which were harder for us to ignore. He’d rub his nose with his fingers and his head would bob. His shoulders moved up and down, particularly when he was agitated. His gait changed, and he bounced along when he walked. His core seemed weak, and his feet moved a lot when he was sitting down. Friends noticed his lack of balance and unsteady gait as he walked down the street.

As his symptoms progressed over the years, we agonized as a family. Should we be honest with him? How do you tell someone you love something so devastating? Dad had never wanted to find out whether he had the disease, but he’d progressed so much by his mid-50s that we had concerns about his safety.

We encouraged Dad to go to the doctor — something he’d avoided. He was 57 when our family doctor delivered the news.

Dad never showed any emotion after his diagnosis, but he was quiet and thoughtful in the weeks that followed. We accentuated any positives to reassure and comfort him: “You could still have 30 years.” “They’re getting closer to finding a cure.”

Dad passed away from complications of HD in May 2020. He was 68 years old.

His death devastated me, but I don’t think I fully processed it at the time. It was during the height of the COVID-19 pandemic, and my brother’s health was deteriorating. There was no time to grieve.

My brother started experiencing personality changes in his late 20s. He was angry and aggressive, which was a sharp contrast to Dad, and he struggled to cope with life in general. In hindsight, his progression ran parallel to Dad’s last decade. It made life difficult and fractured relationships within the family.

Physical symptoms began to manifest in his late 30s, but they were more subtle than Dad’s. My brother had feared inheriting the disease and made it clear he didn’t want to undergo genetic testing to learn his status. No one wanted to raise the issue with him, mostly because of his aggression.

My brother was eventually diagnosed with Huntington’s at 42 years old. He showed no emotion, even when the doctor told him the disease would dramatically shorten his life. My mum and I now help care for him.

Changing the narrative

After years of consulting genetic counselors, I decided to undergo testing for HD last summer. Now that most of my children are adults, I could see the risk of HD weighing heavily on them. I realized it was affecting their decisions about their future and whether to have their own children. I wanted to change the narrative, to take control through knowledge, to give myself a chance to plan and make decisions about my future before those choices could be taken away from me. But I was terrified.

I’d been there with my dad and my brother when they received their results. Now, it was my turn.

I tested negative for HD, which has brought mixed emotions. I believed for so many years that I’d develop the disease. It took many weeks for reality to sink in, and I’m sure my feelings will continue to evolve.

Through this column, I plan to share my feelings and experiences as a caregiver, what it was like growing up alongside the disease, and how it felt to be at risk. I hope to offer a personal perspective of Huntington’s and help anyone affected by it to feel less alone.

Ultimately, I pray the research and clinical trials taking place result in treatments and, eventually, a cure for Huntington’s disease.

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.