I am an adult living with JoHD—an interview with Ashley.
We want to thank Ashely for doing this short interview with Help 4 HD. It helped us better understand what it is like being a young adult diagnosed with JoHD. Ashley was so brave for even agreeing to do this interview. It is hard stripping down to your most venerable self and discussing your diagnosis and fears. We are thankful for Ashley's strength and advocacy. To watch the full episode, please visit: https://www.youtube.com/watchv=Jq8gukPEWXU&t=11s
Katie Jackson: Ashley, can you start by telling us how old you are and when you were diagnosed with Huntington's disease?
Ashley Harmon: Okay. I'm 20. I was diagnosed with JoHD last December, a couple of weeks before Christmas.
Katrina Hamel: Prior to being tested, did you notice any symptoms? And if you did notice any symptoms, can you describe what those were like?
Ashley Harmon: I feel like I noticed lots of balance and stuff getting harder, like picking things up, especially with like my fingers, and I constantly forgot things. I would put it in the back of my head because I didn't want to acknowledge it. Maybe I was paranoid. I didn't want to accept that this was most likely the truth about me.
Katie Jackson: Being an adult living with juvenile Huntington's disease, what do you feel the hardest thing for you to be able to navigate has been so far?
Ashley Harmon: It's just been so hard having JoHD as an adult and not having many other people at are around my age. It was so hard hearing about my diagnosis, and I felt like I was being shot in the heart. All my future plans changed. I wanted to get married and have babies. I had to drop out of college because they weren't working very well with my accommodation. It was hard to give up my car and sell it because that was my last chance of some sort of freedom. I did not want to hurt anyone.
I hate having to tell people beforehand that I have the disease. It's so awkward. I did apply for disability, so we're hoping it gets approved.
Katie Jackson: Have relationships changed?
Ashley Harmon: I've just given up on dating. I don't know. I just feel like there's no point because I don't want to burden anybody with me. My mom already has to do most of the stuff, and I don't want to feel like too many people's burdens.
Katrina Hamel: Sweet, Ashley. We actually have been talking a lot about that lately. From the perspective of a caregiver. My family members who have been diagnosed with HD the way they are every single day for as long as I can have them, then not have them at all. And that's, I appreciate you being so vulnerable and talking about that because I think across the board, people with HD, people who are at risk, don't have symptoms yet talk about their concerns and their worries about dating and feeling like a burden and things of that nature. But I don't know if we've heard it from the perspective of somebody who's been diagnosed with JoHD. I really would hope that you wouldn't give up. And that, not that you go out seeking it, but that you keep your heart open and your mind open to the possibilities
Katrina Hamel: You mentioned how your mom does a lot of things for you. Can you maybe go into detail about that? How has JoHD changed your daily activities?
Ashley Harmon: I used to live by myself in college, and now I can't do that because some things are really hard for me to do.
It's hard to put my clothes on now. Which is embarrassing, and sometimes I need help. I hate asking for help because I feel like that's one more thing I have to remove from the list of things I can do. I know that it is going to get worse, and I'm scared. I also have trouble walking around, especially long distances. I get so tired, and my legs get really painful.
Katie Jackson: Thank you for sharing that. It must be so hard to be a young adult with so many changes, especially when it comes to your independence. And I think we have to remember Ashley was an incredibly athletic cheerleader. She even received a cheerleading scholarship to go to college. Being able to cheer as you did at the level you did took a lot of energy. And now it's hard for me to even walk long distances. And that was not that long ago.
Have you had to deal with public impact or discrimination?
Ashley Harmon: Yes. Especially when I used to work at a bar, and I didn't know I had JoHD at that time. I was walking funny. They say I have a larger gate. People would make fun of me for the way I was walking. I didn't know why they were making fun of me. I thought I was walking like a normal person.
Katie Jackson: I know a lot has changed in your life, and we've talked about the negative changes. But the one thing we have also seen is some beautiful things you've gone through in a very short time. Let's talk about some of those things, like your baptism and recent travels. Also, I would like to know how you found strength and what advice you would give to a young person your age if diagnosed with JoHD.
Ashley Harmon: It was really not an easy thing. It was hard for me to wrap my mind around what was happening to me.
There was a lot of crying and struggling and screaming. If I am, to be honest, I was scared of the future and how my body would change in an instant. I found that when you reach out to people and find your support, you can finally realize I'm not alone. All my friends and family there are so helpful to me.
Getting baptized is a huge step in my faith.
I pretty much grew up with HD because my dad had been symptomatic since I was born. He was an amazing dad; I know he didn't want to give me this disease. But that means I get to see him sooner. That is God's will.
I want to help others understand that they're not alone in this difficult time. There will be people who want to help you and talk to you. I get my strength through God cause it's my resting place. I also find my strength through family and friends who encourage me.