1. What's your name & how are you impacted by Huntington's Disease? My name is Rachel Reimers. My father-in-law passed away from Huntington's Disease in March 2012. My husband has a 50/50 chance of inheriting HD.2. Where are you from? My family and I live in Waukee, Iowa, a suburb of Des Moines.
3. How old was your husband when his father was diagnosed with Huntington's Disease? My husband was 19 years old when his father was diagnosed.
4. How old was your father-in-law when he first started showing signs of HD? He was 45 years old.
5. How old was your father-in-law when he passed away from HD? He was 62 years old.
6. Who did your father-in-law inherit HD from, Mom or Dad? Steve, my Father-in-law, inherited HD from his mother, who then was diagnosed as Schizophrenic.
7. Do you and your husband have any children? Since my husband is at risk, we decided to do IVF PGD for both of our children. We have two beautiful children. Our daughter Remington is 5, and our son Truman is 2.
8. How much did you know about HD before meeting your husband and learning of him being at risk? I work for Social Security Disability, so I was very aware of what HD was when I met my husband. We also had a member of our church when I was growing up who had HD.
9. What were the first signs your father-in-law's family noticed that were the symptoms of HD? Steve would make comments like his brain felt sick.
10. What do you most enjoy about the HD community? Oh my gosh, where do I even start? Getting to know Katie, Katrina, and the rest of the incredible board has been unbelievable. The HD community is the definition of strength, resilience, and support. I attended my first Symposium as Board Member in Sacramento in April, and it was the most wonderful two days meeting people I know will be lifelong friends. Seeing everyone's dedication to the HD community is like nothing else I've experienced.
11. Has your husband been involved in any clinical trials? Since my husband learned he was at risk at age 19, he has been in several clinical trials.
12. Did your father-in-law face any challenges in public due to the symptoms of HD? Steve was often accused of being drunk before he was diagnosed, and the small community he lived in was made aware of his HD and what HD is.
13. What are some things your father-in-law enjoyed doing before he was too sick? My mother-in-law always talks about how he loved woodworking and fishing. He was a businessman and entrepreneur. He loved working and building his business.
14. What are some of your favorite ways to raise awareness for HD? Being a part of the HD community like this is such a blessing. Getting together virtually or in person is always incredible, and I end the day feeling hopeful. Although there is no cure for HD, there is a community full of warriors, caregivers, and support all around us. Being HD positive, negative, not knowing your gene status, or being a caregiver all have weight, and it's not something anyone has to carry alone. So I guess I would say showing support and talking about HD is one of my favorite ways to raise awareness.
15. When did you start to get involved in the HD community? When I met my husband, he was involved with HDSA. We became more involved when he learned of Help4HD and connected with Katie Jackson. Ironically enough, they had a Symposium here in Des Moines, where we live, soon after that. I met these amazing ladies, and my heart just knew it needed to be with this group. I then recently became an Executive Board Member and have loved every moment of it and feel so lucky to be involved.
16. Does your husband talk about getting tested? We have had this talk dozens of times. This is our journey together, but ultimately I leave this up to him. I'm here for him when he decides he is ready. We plan for the worst and hope for the best.
17. What does that mean when you say you plan for the worst? We always play out scenarios of how we would have to make adjustments in our home, saving money, in-home care, or facility care.
18. How do you describe Huntington's Disease to people? I tell people it is a neurodegenerative disease that is like putting Alzheimer's, Parkinson's, and ALS together into one ugly package.
19. What would you say if you had the world's attention for 30 seconds? HD is an ugly disease, but the support with Help4HD is like nothing else I've seen. Be present. Enjoy your loved ones. Remember you aren't in this alone. I read a quote once that said, "God gives his hardest battles to his toughest soldiers." There is no doubt HD Warriors are amongst the toughest.
20. What advice would you give to other HD Caregivers? You aren't fighting this battle alone. The HD community is incredible, and any of us would do anything for each other. Please, lean on each other. We are all here to support, lift each other up, and be there to help you during the hardest time of your life.