1. What is your name? Lauren Holder
2. How old are you? 36
3. At what age were you tested for HD? 20
4. What is the hardest thing for you about the prodromal stage of HD? Gosh, this was difficult to answer! I think the anticipatory grief is the hardest part – I have friends who are around my age and are now symptomatic; this hurts my heart, for them, and for myself, knowing that my time is coming. Also, knowing how hard caregiving can be, I feel scared and sad because I don’t want to be a burden to anyone. This makes getting any type of setback very hard to handle because the pain is cumulative, and the anticipatory grief sometimes makes me feel like I can’t breathe.
5. Do you feel like our community living in the prodromal stage of HD has enough services and resources? What is the number one thing you wish you would see change if not? No, I don’t think we have enough resources for the prodromal stage. Honestly, I would like to see a complete change in mindset about HD – I personally think we have to go from this mindset of “dying from HD” to “living with HD.” I don’t have all the answers, but I think we (the HD community) start by looking at HD differently, more like a dimmer switch rather than an on/off switch. We (the "professionals") do this by clinically diagnosing HD earlier (maybe even at the point of a gene-positive test), by utilizing the new staging system published by Dr. Sarah Tabrizi, and by providing important resources like mental health resources and guidance like annual visits to a neuro-psych rather than waiting until visible symptoms show to seek help.
6. Was it hard being an only child with all the responsibility following solely on you and not having a sibling to lean on? Yes, especially in that last year of dad’s life. I felt so alone because we had no help. My mom was dealing with her own issues as a caregiver and couldn’t see things from my perspective. I didn’t have someone else who could understand what it’s like to be a young caregiver balancing work and babies, but also the fact that I was looking at my potential future as a gene-positive presymptomatic individual.
7. What made you decide to get tested even though you weren’t showing any symptoms? It’s something I knew I had to do for myself. For me, knowledge is power. I felt like not knowing and constantly questioning everything was worse for me than knowing and trying to be proactive.
8. How were you feeling after receiving your results? I had mixed emotions – relief that I finally knew, sadness and fear for my future, determined to make the best of it. It really was an emotional rollercoaster for about a year.
9. What was the hardest part about being a caregiver for your parent? I would have to say emotionally, seeing how hard caregiving was on my mother. Not everyone is cut out to be a caregiver, and that’s okay, but it’s better for everyone to be honest about that from the beginning rather than forcing something you just can’t do. I’m not saying caregiving was easy for me because it wasn’t, but I never saw my dad as a burden. It was much harder for my mom, which in turn, made it worse for my dad. Logistically – balancing working a full-time job with young kids (less than 2) while also helping with dad daily. It took a lot of juggling, and there was very little sleep.
10. What was the most rewarding thing about being your parent’s caregiver? Sharing these amazing little moments that we usually take for granted. For example, watching football with my dad on Sundays and taking him to see Christmas lights in McAdenville the month before he died. I tried very hard to include him in things and make sure he still had a voice and some great memories. Also, I am so so glad that he got time with his grandkids and that they got time with him.
11. What do you think is one of the most unaddressed issues in HD? Giving people who are symptomatic a voice. Just because communication becomes difficult as you progress doesn’t mean that someone can communicate their wishes; we tend to let the caregivers talk for the patients rather than letting the patient speak for themselves.
12. What do you do for a living? I’m a Walk Manager for the Alzheimer’s Association. I also do a podcast for the HD community.
13. What is your biggest strength? I’m a great listener with a very open mind.
14. What is your biggest struggle? Asking for help.
15. How much did you know about HD by the time you were tested? Quite a bit. My grandfather was diagnosed when I was 15, and my father and aunt were participants in the PHAROS-HD study at Wake Forest. After Grandpa Rose was diagnosed, I spent the next few years researching the disease and trying to connect with others to learn more. I even did my senior thesis on it.
16. Are you enrolled in any clinical trials? Not at the moment. I am taking part in observational studies, though – PREVENT-HD and ENROLL-HD.
17. Do you have children? If so, what is the most challenging part about being a mom? Yes, I have two beautiful children – a 4-year-old little girl and a 2-year-old little boy. The most challenging part is balancing work, time with them, and all other responsibilities, and also not losing my identity in the meantime.
18. How do you describe HD to people? “It’s a genetic brain disease. Take some Alzheimer’s, some Parkinson’s, and some ALS and put it all together.” I’ve found this is the easiest way for people to even slightly understand HD when they have no idea.
19. What would you say if you had the world’s attention for 30 seconds? Be kind, but stand up for yourself when it’s necessary. Be your own advocate. Take a few seconds to compliment a stranger walking by. Listen without judgment. Learn to laugh amidst all the chaos. "Woossaahh"
20. What’s the best advice you would give to someone who was thinking about getting pre-symptomatic testing? I don’t regret testing. I personally think that knowledge is power and being proactive is so much better than being reactive. But if you feel like knowing isn’t going to motivate you in a positive way, then it’s okay to wait. If it’s going to keep you from accomplishing your goals and dreams, like joining the military or getting your desired degree, then it’s okay to wait. There isn’t a right or wrong choice – it’s about what is best for you.