My family’s story with Huntington’s disease, and a new beginning

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by Bionews Staff |

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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.'
A man and woman smile for a photo while standing in front of a lake on a sunny day.

Chrissi and Tommy Penney have been together since 2010. (Photos courtesy of Chrissi Penney)

This is Chrissi Penney’s story:

I’d like to share my family’s story with Huntington’s disease (HD). It’s not easy to watch your family deteriorate and your children become caregivers.

My grammy (my dad’s mom) was an amazing nurse. My sister and I would pretend to be sick and she would take care of us. She was sweet, and we idolized her. But something was wrong. She started to repeat herself, get clumsy, get hooked on ideas, shake, and lose her ability to communicate. She was being seen at Massachusetts General Hospital.

My father was a hellion who loved riding his white Harley motorcycle. But he was in multiple car and motorcycle accidents, and eventually started to forget things and spell my name wrong on birthday cakes. We had a strained relationship.

When I asked my dad why he and Grammy were taking the same medication, he fell silent. I asked if he had Huntington’s disease. He said yes.

My mouth was dry and my heart pounded in my chest. My entire life flashed before my eyes. All the things he forgot, the accidents. He wasn’t careless, he was sick.

I remedied and appreciated our relationship, which grew over time. As he declined, he got mad at me. I’d often leave his house in tears of frustration and sadness. Having genetic testing done was nonnegotiable for me. I needed to know if my quality of life would change, whether I could have children, and how I should plan my career.

On March 30, 2005, doctors delivered the news: “We’re sorry, you tested positive. We wish you luck.” The first song on the radio I heard driving home was Tim McGraw’s “Live Like You Were Dying.” I sobbed.

Someone is holding up an old photograph of a man and a woman sitting next to each other indoors.

Chrissi and Tommy Penney are living their best life.

The grief and loss I feel is beyond measure. I chose not to have children, even though I had wanted to be a parent so badly. I didn’t want a child to experience what I went through with Grammy and Dad. In addition, I can’t work full time, get life insurance, or have bank accounts with any significant balance due to my diagnosis.

I spent the next few years on a downward spiral of poor decisions, bad boyfriends, drugs, and alcohol.

Tommy came into my life in March 2010, after we were set up long distance. I relocated and started attending cosmetology school in Colorado. Tommy and I started a new life together.

He’s smart, funny, patient, strong, and loving. We laugh at the same things. He explains jokes I don’t get.

I appreciate everything in my life more since being diagnosed with HD. I take photographs so I’ll have memories, even when I forget.

On Jan. 18, 2014, my dad passed away. He died from ongoing heart problems and Huntington’s disease. We visited him a couple of months prior. It gives me peace knowing that I remedied our relationship and that my dad knew and loved Tommy.

Losing a parent is traumatic. Having HD steals so much from your life.

Tommy is my love, my everything. We have our sanctuary and it’s perfect. I’m currently HD symptom-free and living my best life. We’re looking to relocate to Florida for our next great adventure.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #HDSpotlight, or read the full series.