It’s Starting
My Huntington disease journey progresses
I think it’s starting for you.
I stared at my neurologist and felt his words strike me like an assault. I’m sure I would have fallen over if I wasn’t seated. Did the room suddenly get smaller?
He continued after a pause. “Are you surprised to hear that?”
“Uh, no, not really. I guess,” came my dry response.
The “it” he was talking about was the onset of the movement disorder component of Huntington disease (HD). The time period where an experienced neurologist can observe signs of motor symptoms in a person and determine they are likely the result of the HD gene mutation. The phase of the disorder when a person’s deterioration may become more predictable. The moment every single person at risk for developing Huntington disease dreads more than anything.
And here I was. Hearing those words about me. “…it’s starting…” I was flabbergasted.
It’s true, at the time, I was suspicious I had moved into the symptomatic phase of HD for a number of months, so no, I was not surprised. To hear confirmation from my neurologist, however, was a recognition I had not expected to receive that morning. No longer could I hide beneath the comfort of my denial-blanket. Oh, my warm, comfy denial-blanket. Nope. Now, I was face-to-face with the next chapter of my Huntington disease journey: the symptomatic period.
“Why am I always alone when I get bad news?” I asked my reflection in the elevator mirror as I rode down from the doctor’s office to the main lobby. My likeness looked as stunned as I felt. Through sheer coincidence (well, maybe with a little stubbornness on my part), I was alone when I recieved the news about my positive Huntington disease genetic test a few years earlier. Now, here I was again, moving into a new chapter of my HD story with only my reflection for company.
Handsome company, yes, but not ideal.
In-Between Years
In my book, In-Between Years: Life after a positive Huntington’s disease test, I discussed issues related to the experience of “in-betweeners.” Those in the HD community who are living through the period of their journey between learning they are gene positive, or at risk of developing Huntington’s disease, and the onset of symptoms.
In the book, I touch on topics such as:
- Understanding CAG numbers.
- Participating in research.
- Symptom seeking.
- Revealing your HD diagnosis to others.
- Reproduction.
- Maintaining positivity, among many others.
I also discuss my own fears, mental health issues and experiences as I lived through my own “in-between years.”
When I reflected on the fact I was no longer an in-betweener myself, following the confirmation from my neurologist, I felt chilled to the bone. I was experiencing one of those key moments in life where everything seems to immediately move in another direction. Similar to my experience undergoing Huntington disease genetic testing, as I walked out of that appointment, although I was the same person who had walked into the building a few hours earlier, I knew without doubt from that moment on, my life-experience was going to feel vastly different.
I’m no longer an in-betweener.
The Dancing Years
A common and well known type of movement disorder associated with Huntington disease is chorea. Bates, defines chorea as:
…rapid, elegant, short-lasting, unwanted movements which can be seen in all muscles of the trunk, face, and extremities.”
The word chorea comes from the Greek word for “dance” and when you see the condition in action, it’s clear why this term was initially used in the medical literature. Inspired by that fact is why I’ve chosen to refer to the symptomatic phase of Huntington disease as “the dancing years.”
I understand that in our society, generally we dance while having fun or in celebration of something:
- Weddings.
- Nights out on the town with old friends.
- In the living room with our children.
I’m not using the term “dance” in an attempt to minimize, or make light of, the powerful effect Huntington disease can have on all of those affected by it, but I think those of us living the HD journey can use a little bit more light and positivity, can’t we? It’s taken generations for the disease to make its way out of the shadows. Isn’t that something to be positive about?
Not All Hope is Lost
As I move forward with this blog, I’m going to touch on a number of topics that relate to the symptomatic period of Huntington disease.
- Exercise.
- Employment.
- Relationships.
- Research.
- Falling.
- Weight loss and many more.
I will also include some of my journey travelling from the In-Between Years into the Dancing Years to help illustrate the discussion.
These topics sound dark, and they sure can be, but it’s important for all of us entering the Dancing Years to remember:
Even as we become symptomatic, not all hope is lost!
It’s very true, there is no treatment to fight the underlying direct cause of Huntington disease (yet!), but do not give up. Whether you’re a HD warrior yourself, a family member, colleague or friend, do not give up!
Steven Beatty is a writer and former 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 and is a blogger here on Medium.
