Fight.
I don’t think that those who aren’t in the Huntington’s Disease community understand what the word FIGHT truly means to those of us inside the community.
We fight for understanding. We fight for our loved ones. We fight for Awareness, but we fight most for a treatment or even better a CURE!!!
Understanding. I’m guilty of this myself before Huntington’s came into my life. Seeing someone stumble and possibly thinking they may be intoxicated. Once my husband, Nathan, was diagnosed and I took the deep dive into finding out all I could about HD I began to understand. An example: understanding that just because someone may seem intoxicated doesn’t necessarily mean they ARE intoxicated.
That became a HUGE fear of mine. I’d heard of many other people diagnosed with HD getting arrested because someone called law enforcement due to not understanding the disease.
So, I took the “bull by the horns” when in public and addressed the “elephant in the room” before the elephant was noticed.
In restaurants if Nathan had a stumble, my go-to was, “Oh please excuse him, he has Huntington’s Disease. It’s like having ALS, Parkinson’s and Alzheimer’s all at once. He’s not drunk or anything like that.”
That brought about compassion from some, eyes-glazed-over looks from others… AND Awareness.
So, in that sentence, I took care of 3 things I fight for on a daily basis. The fight for understanding, my loved one, and awareness.
But what I’ve been fighting for lately, like a whole lot of other advocates in this community, is for a treatment; a potential treatment was announced in September 2025.
A treatment that’s not getting its fair review with those in the positions to grant it.
I, along with the other amazing advocates that I work with, are fighting, and fighting hard for our loved ones.
Fighting for our spouses, children, mothers, fathers, brothers and sisters, even friends.
When you live what I call (and often hashtag on my social media videos) this HD life, it’s not an easy road.
It’s watching the decline of my husband. Going from a hardworking, present father who loved to have fun, to someone who can’t walk without help, can’t speak clearly, and needs help in daily life.
However, my husband, considered late-mid-stage, still has quality of life. He’s still able to make memories with me and our children.
It’s also waking in the middle of the night because my husband will have movements that cause him to kick the footboard of his hospital bed.
It’s the not actually sharing a bed with my husband but having a hospital bed pushed next to mine to keep him next to me.
One of the scarier things about being a Huntington’s caregiver is waking up to watch closely to make sure that my husband is still breathing. Living with that. That’s part of “This HD Life.”
Or wondering if this holiday or birthday will be the last you’ll celebrate with your HD Warrior.
We’re not the only family that goes through worry’s like this. There are hundreds if not thousands of us that are either gene-positive, gene-negative, or (like myself) don’t have HD in my genetics but fighting for someone who does.
We’re fighting for the chance for our loved ones. We’re fighting for help from a medical community that we feel is either overlooking us or perhaps ignoring us, for reasons we can’t understand.
But fight we do, and fight we will continue to do.
We fight daily for medical care. Not everyone is able to go to a Center of Excellence where Huntington’s is understood. A lot of neurologists may have heard of the disease, but they aren’t familiar with it aside from a blurb they read in a textbook.
Literally fighting against medical professionals telling people things like, “Oh you’re a woman, only men get Huntington’s,” (true story, it happened to a family member who thankfully tested negative for HD).
Or the time my husband had a medical issue separate from Huntington’s. The hospital insisted on sending a neurologist to speak with us, even after my telling them that we already see two Huntington’s specialists, we didn’t need a third.
When that neurologist came to see us, and we were explaining about the disease, he looked at me and literally said, “Well, that’s not what I just read.”
I don’t think he liked it much when I responded with “Well, you’re reading it… we’re LIVING it.” Needless to say, he was as confused as we were as to why he was sent to speak with us about a disease he had no clue about.
Many of us fight so hard that fighting is all we know. We’ve given up hobbies, some even wondering what we would be like if Huntington’s hadn’t reared its ugly head.
Not knowing what we will do when our warrior is no longer here because all we have done is fight and it’s all we know. It’s what I’ve done now for 10 years, with April 15, 2016 being the date of Nathan’s diagnosis.
But fight we do, and continue to fight we will. For our at-risk loved ones, and the ones who are pre-symptomatic, mid-stage, late-stage, and even after.
We fight because we want to help our loved ones; we don’t want others to go through what we are currently going through. We want that understanding, we want to spend our lives with our loved ones. We want that awareness… but ultimately… We fight for that treatment, and we fight even harder to have a cure.
About the Author: Heather Thurgood Wilmoth is a wife, mom, and caregiver for her husband, Nathan, who has Huntington’s disease (HD). Heather began her journey with Huntington’s Disease in April 2016 when her husband was diagnosed with HD. She resides in Mississippi and frequently uses her social media platforms to advocate and educate others on the experience of living with HD. Heather works for Super Talk Mississippi Media, where she’s had a 30-plus year career in radio. She and Nathan have given talks about their experiences with HD to spread awareness as well various organizations, including Help4HD and HDSA. Heather and Nathan have also advocated to Federal Leaders as well as speaking in front of the FDA during an externally led patient listening session. Heather began and continues to organize the Mississippi Team Hope walk, which is entering its 5th year this year.
