The Neurodegeneration Rollercoaster Ride
The emotional ups and downs associated with Huntington’s disease
Neurodegeneration
Huntington’s disease causes cells in the brain to die. Let’s not beat around the bush, this is a depressing fact for those of us unfortunate enough to have inherited the condition.
When I sit back and reflect on what HD is doing to me, and potentially my children, it sends me on an emotional rollercoaster for a number of reasons.
The ride usually goes something like this:
The ride
- Firstly, it makes me angry. “What a shitty deal this is,” I think to myself. This inevitably leads me down the road to a self-pity-party where I’m the guest of honour and the bar is open.
- Secondly, once I make a gracious exit from the pity party, I become amazed. Amazed that this brain of mine has been able to adapt for so many years. “You go brain, you go!”
- Thirdly, I become anxious about the future. I start to wonder when this brain of mine will start to lose its ability to adapt to the disease. When will my HD symptoms come more to the surface and begin to take hold on my life? This usually leads me back to the pity party for the last call.
- Fourthly, it’s sadness. Sadness when I look at my two young kids and my nephew who are all at risk of carrying the mutant gene. Sadness when I think, “are their brain cells being attacked even as I’m looking at them right now?” Sadness and terror really.
- Finally, I feel a call to action. I feel a call to fulfill whatever small part I can play in the search for an effective treatment for this damn horrible disease. Awareness. Fundraising. Supporting others in the Huntington’s disease community. Whatever I can do.
At this point on the rollercoaster ride, I need to get off and take a nap, but I know that I will be returning soon for another ride.
So, what should we do about this?
What to do?
The first thing to do is understand that this ride is now a part of our lives. Wherever we are in our own Huntington’s disease journies, there will be days we are emotionally up and down regardless of how well we feel we are coping with the diagnosis.
Understanding that reality will put you in control. When you realize you are on this rollercoaster, take a pause and acknowledge that it’s happening. Think about what might have triggered the ride. What’s going on at the time?
Use the ride to help inspire some positive outcomes.
- start a fundraiser
- go outside and be physically active
- be mindful of where you are right now and enjoy the little blessings
Most importantly, seek some support if you need it from family, loved ones, friends, the HD community or your healthcare team.
Take control of the ride!
Steven Beatty is a writer and registered nurse. He lives in Central Ontario, Canada with his wife and two fantastic kids. He’s on Facebook and Twitter @stevenbeatty. Steve is the author of the book In-Between Years: Life after a positive Huntington’s disease test, a columnist at Gene Positive on Huntington’s Disease News, and a blogger here on Medium.
