Huntington's disease (HD) is a genetic condition with a 50/50 chance of passing it on from a parent with the mutated gene. As the condition progresses, it stops parts of the brain from working properly, leading to issues with movement, cognitive and behavioural changes, and mood volatility.
Most people with HD develop the first symptoms between their 30s and 40s. However, initial signs may start earlier.
Today, Sarah Foster shares how much HD affects her daily living, from her friendships to family life to performing day-to-day activities. She spent years hoping her symptoms were merely a part of the ageing process - until HD's impact was too much to ignore. Here's her story.
I have never been able to fully convey what it's like to live with Huntington's disease.
How it feels to hate myself for being someone who is progressively letting my family down by being emotionally volatile and apathetic.
How much it stings when I sense other people struggling to understand the words I'm fighting to pronounce.
How it hurts to hear my peers talk about their hopes and dreams for the future. Mine have gone - only to be replaced by prospects like falling accidents and choking on water.
HD's progression is nothing like the normal ageing process
This is a bit of a sore spot for me, so I wanted to bring it up. HD and HD's progression is not comparable to the effects of getting older.
"I forget things too!" is a common platitude directed my way. "It's part of getting older."
That's true, but failing to recall someone's name is nothing like forgetting you have an infant child.
I did that - forgot I had a child - more than once.
And, ironically, my brain never allowed me to forget that I forgot.
My own mind bullies me, sometimes, and I can only remember the bad things.
I have daily flashbacks of inappropriate words I've spoken or of actions that didn't succeed. My failures line up to haunt me, leaving an emotional residue of guilt and shame in their wake.
Ongoing therapy sessions help siphon off enough self-blame to keep me functional, but it always returns. I harbour constant guilt for my lack of productivity. I'm a prisoner of inertia, stuck in my chair. I watch people do things for me that I'm physically able to do. But when my brain gets wind of an oncoming change, it locks up, and I freeze. In fact, whenever I'm forced to transition, I ask for 15 to 30 minutes of preparation time. Any faster than that, and I feel like I'm jolting.
Time spent out of my chair evokes both anguish and pride. Forcing myself to perform an activity hurts so much. But if I'm well-rested and emotionally stable, it's usually something I'm grateful I managed to do.
When I can't do anything on the worst days, I like to tell myself I still achieved something important: I survived.
My mother also had Huntington's disease. By the time she was my age, she had yelled at 25-year-old me every time I had gone to visit. She raged at me until I learned to walk out of the door when she started. I’d stay scarce until the next day.
I'm ashamed to admit that I yelled at my son last night at the top of my lungs. He'd only been teasing, but I heard myself roaring in someone else's voice... The shock and astonishment on his face mirrored my own. I need to tell him that it's okay to leave the room and protect himself, if he ever has the need.
HD is an ever-present cloud hanging over me
Some people who have HD don't realize it. Not me. I wake up knowing it. I dream about it. It's a dark, foreboding cloud that hangs over every single aspect of my life.
You may wonder why I found out I have HD, considering the news was so upsetting. It's because so many things were going wrong in my life. I couldn't remember anything anyone told me, causing major problems at work and home. I volunteered to be a scout leader and forgot the meetings every week. I was a special education teacher, but the erosion of my executive function skills meant I couldn’t teach.
Executive functioning lets us plan, focus, remember instructions, and multi-task. I could neither create nor organize lessons. My attention span became prohibitively short, and my emotions were all over the place.
The latter led me to blurt out inappropriate remarks in public settings. Something would trigger me, and I couldn't stop the comments from spewing forth. I'd also have trouble finding words, or I'd slur them when I spoke. I sounded drunk. All of these symptoms created crippling anxiety that led to me taking a genetic test. I simply had to rule out HD. So much for that.
My HD diagnosis gives me access to the tools I need
While the knowledge of my condition is bitter, the diagnosis itself helps me tap into the tools I need. I go to a Huntington's Disease Center of Excellence. There, I have regular access to a neurologist, occupational therapist, physical therapist, social worker—all of whom are experts in helping people like me. I've also found a psychiatrist specializing in degenerating brains, and a therapist who's ridden the entire journey by my side.
The help of professionals, family, and friends has made all the difference. They don't give up on me, so I don't give up on myself. And when I don't feel defeated, life is so much easier to handle.
Although my body and mind have been hijacked by HD, I didn't really appreciate how much promise my life had until it got snatched away. Now, with a great deal of support from my family and friends, I am venturing to do things I never thought I would do again, like preparing family meals. I'm attempting other things I never dreamed I'd try.
Like creating mosaics.
Like climbing mountains.
Like writing this blog.
Like deciding to stick around and face the oncoming days with both eyes open and a growing sense of peace in my heart.
I choose to push on and keep going. My new house in the mountains is an oasis of calm. I'll be kinder to myself. And I'll still be proud of my biggest achievement every day:
NPS-IE-NP-00372 February 2022