2020 Postcard from Palm Springs
Highlights from the 2020 CHDI HD Therapeutics Conference are now here! This year’s Postcard covers HTT-lowering therapeutics, including an
I made my bucket list when I was ten years old. That’s when my dad was diagnosed with Huntington disease (HD). I had never heard that term before and I didn’t know what it meant or entailed. I didn’t anticipate the fear, heartache, frustration, anger, tears, grief, and overwhelming life journey my family was about to embark on.
My grandfather left my family when Dad was only three years old. We didn’t find out his whereabouts until after his death. It wasn’t until my father was diagnosed at 39 that we became aware HD ran in our family history.
My parents took my sister (13), brother (8), and me (10) to a genetic counsellor to learn more about HD. My whole future depended on a flip of coin. Heads, my life would continue normally. Tails, my life would change forever. That was all I could think about for the longest time. There was not much help for us.
My father started to develop more symptoms of the disease. He became depressed and stopped interacting with the family. That wasn’t like him. He was a very involved father and used to do everything with us.
Once, when my siblings and I were fighting, he got very angry. He picked up a chair and threw it in my direction. I hid under my parents’ bed. I wasn’t used to my father getting angry. He was always the calm and relaxed one. It was difficult to detach myself and remember it was the disease and not my loved one acting out. That night he found me and said, “One day you’re going to be embarrassed by me and one day you will hate me, but always know I love you.” I didn’t understand. I could never hate my father. However, I was angry with him for wasting the good years we had together.
A few years later, he came out of his depression. He engaged with us, talking and laughing. It was him again, but not for long. He became harder to understand. His speech was slurred and his processing time became a lot slower. We had to ask a lot of yes or no questions and wait for what seemed like an eternity for a response. Patience is key with HD. He started walking as if he was drunk, having trouble eating, and falling all the time. Black eyes became his new look.
My sister and I went to university. I started travelling and completing my bucket list. But my father’s HD progressed and he was bedridden. My mother became his full-time caregiver – he did not want to go to the hospital because of his pain.
In 2013, the night before Halloween, I was an hour away and had plans to go out. My sister said that our dad was really bad that night. I asked if I should come. My sister said she would call back in an hour to let me know.
I waited for the phone call that never came. I called repeatedly and no one answered. Finally, my mom called to say they were coming to get me. I kept repeating, “Say it, just say it.” After what seemed like a lifetime, she finally said, “Your dad has passed away.”
The year after my father died, I turned to alcohol to numb my pain. It affected my job, relationships, and health. My life was a wreck.
On the one-year anniversary of my dad passing away, friends dragged me out to a Halloween party. I didn’t want to go, but did anyways. That night I met the love of my life.
Before I knew it, we were buying a house and talking about marriage and kids. We got a dog, Mocha. I worried every day about what I was going to put him through if I had HD. I felt guilty, as if I was being selfish and putting my happiness before his. I wanted him to have a chance at living a normal life. However, he said he loved me more than life itself and would be there no matter what, and I felt the exact same way.
We decided to see a genetic counsellor to begin the testing process.
The phone call came that my results were available. I’ll never forget those words as she opened the envelope. “I’m sorry, but these are not the results we were hoping for”. I had inherited Huntington disease from my father.
My fiancé and I held each other and cried. I had never cared before if I had HD, but now it wasn’t just me.
Then, on December 14, 2017, the worst day of my life happened. The day that changed me forever. It was my fiancé’s 27th birthday. He got up, kissed me on the forehead, and left for work. I had an appointment at the hospital that afternoon.
As I was driving home, I noticed several missed calls. I parked the car and called my fiancé’s sister. She told me there had been a helicopter accident. My fiancé had been on board. Nobody made it. I was hysterical, shrieking and crying in the middle of the grocery store parking lot. I couldn’t breathe. It felt like I was drowning and someone had ripped my heart of my chest. How could the love of my life be gone just like that? We had plans that night. It was his birthday. I was on my way to buy him a cake. I was the one who was supposed to go first, not him. He was supposed to live to be 100. I had a 100% chance of dying from HD at an early age. What were the chances of my fiancé going to work on his birthday, a month and three days before our wedding, and getting in a helicopter accident?
It’s been just over four years since the accident, during which I battled PTSD, major depression, and anxiety. I have recently graduated from therapy after years of hard work and dedication. For the first time, I am not struggling with depression. My anxiety is still a constant in my life but it is controllable. I have an 18- month daughter who is my pride and joy. I have met an outstanding man who appreciates me for all of me. We are getting married this June and expecting a boy! I never thought I would ever get married again, but he changed my mind. He broke down all of my walls. My life has not been what I planned, but I couldn’t imagine it any other way.
My biggest advice is to let people love you and don’t push them away in fear that you will hurt them. It’s their decision; they love you and want to be in your life. Love is truly all you need in this world. Without it, nothing else matters. Don’t take a single second for granted. Live moment to moment and be present in the here and now. You can’t change the future and worrying about it isn’t going to help. Tell your loved ones every day how much they mean to you because you never know when tragedy will strike. Live your life the way you want to no matter if you have tested positive, negative, or are at-risk, because anything can happen in an instant. I know that now. Chances and odds don’t mean anything, so try not to focus on that so much as it will take you to a dark place. I am at peace with my HD.
Are you looking for support resources or information on HD, or do you know someone who is? Please reach out via our new online link and a member of our Family Services team will be in touch: https://contactme.cloud/form/huntingtonsociety
Prefer to talk to someone directly? Please call 1-800-998-7398 and enter the extension of the Family Services team member closest to you: www.huntingtonsociety.ca/family-services-team-list/
We are here for you and we hope to connect with you soon!