What is your name? Heather Thurgood Wilmoth
Where are you from? Mississippi
Who are you a caregiver for? My husband, Nathan Wilmoth.
How long have you been a caregiver for them? Since diagnosis in 2016
When did you first learn of Huntington's Disease? From my husband's sister. She and I were friends first. She and a best friend of mine set us up. She had talked about their Mom and how she had HD.
What's it like being a caregiver for someone with HD? It's hard to see him struggle. Nathan was very active and worked as a diesel mechanic, and loved being around people.
What do you use for your support system? Family friends and Online, but also when we got Nathan's diagnosis, we started a social media page called the Mississippi Huntington's Family Support and Awareness Group to try to find others in our state who were like us. Then we went to a luncheon about HD and met the people who would become our in-person support group. We are so thankful for them!!
What sort of resources have you found in your local community? Not a lot at the beginning. We were lucky that the neurologist we were matched with at UMMC focused on HD, and he also informed us about Enroll HD, so we ended up going to UAB. Both of those programs really try to help our HD families
Do you work a job separate from being a caregiver? Yes. I work for a statewide radio network called Supertalk Mississippi Media, and they've been great about helping us get the word out about HD.
What is your relationship with your loved one like? It's good. Thankfully we both have the same type of bad humor and similar interests, so that helps.
What symptoms of HD that your loved one experiences do you find the most challenging? The memory and balance right now.
What are some things you enjoy doing with your loved one? We both love movies and music, so we'll spend a lot of time just being homebodies and watching tv or listening to music.
What sort of precautions do you take to keep your loved one safe? (wheelchair, cut food, puree food) Cutting food when needed, walking slower, keeping an eye on him when walks. Right now, we're hoping to build a home that is all handicap accessible to accommodate Nathan's future needs as well.
Do you have any other family members at risk for HD or symptomatic? Between us, we have two children who are at risk.
How has HD changed your life? We don't get to do the things we used to do. I used to do a lot of Acting, but now that has changed some. We also don't go places like we used to.
What is something you wish people understood about HD? That just because Nathan looks good and healthy in photos we share on social media for awareness, those are just photos. You don't see him struggling to eat, hoping he doesn't choke or fall when he tries to walk. That HD has taken a lot from our family.
What do you do/find that helps you cope with caregiving for someone with HD? Our bad sense of humor and trying to see the positive as much as we can.
How would you describe HD? We start off by explaining how it's like having ALS, Parkinson's, and Alzheimer's. We try to tell our story often to spread awareness, so we make a point of talking about how it's not called The Devil's Disease for no reason.
What is something you would like your loved one to know? That no matter what he thinks, he's important, he matters, and we love him. He worries about how HD will change him and is always telling me, No matter what I say, please know I love you, and I'm thankful for you. I reassure him that I'm here, and I know.
If you could give any advice to a new caregiver, what would you tell them? (for example, ss, driving talking to children) I always tell anyone who is thinking about getting tested to get affairs in order before doing so. Things like long-term care (which is NOT long-term disability-I made that mistake) Also, we discovered with Nathan's diagnosis that because his job modified his duties, we were able to get things rolling that when he had to stop working, we had everything already in place.
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