20 Questions with Help 4 HD - Holly Muniz
1. What is your name, and where are you from? Holly Muniz, Burlington, NC
2. How are you affected by Huntington's Disease? I have a long history of HD in my family. My grandmother, mother, uncle, and brother Justin have lost their battle to HD. My niece was diagnosed in 2018 with Juvenile HD. I went through the testing process with my brother Justin. I tested negative, and he tested positive.
3. How did it feel testing negative when your brother tested positive? I honestly didn't accept the negative result. I was convinced that because Justin had it, I had it. There was just no other option. He and I were one in the same. After it did sink in, I had severe survivor's guilt.
4. Tell me a little more about the survivor's guilt you felt. Explain how it affected you. Every time anything good happened to me, I felt extreme guilt and forced myself to be happy. Getting married – I knew Justin would never get to do that. Buying my first house – Justin would never be a homeowner. Even today, I am now two years older than Justin was when he died. I can't even be excited about my birthday because Justin was never able to be this old. I wish he could have had more time. More experiences. I shouldn't be having these when he can't. It isn't fair.
5. How old do you think your brother was when he/she started showing symptoms? When they were obvious to me, it was around age 20
6. How old was your brother when he/she was tested for HD? He was 25
7. How old was your brother when he passed away from HD? He was 36
8. Who did he inherit HD from, Mom or Dad? Mom
9. What was your brother's Cag repeat? 59
10. Who was your brother's caregiver? He chose me. Although my father and two older siblings were available, and I am his younger sister, he chose me. We were very close growing up, he was my best friend, and he knew I would make decisions in his best interest, not mine.
11. How much did you know about HD before you got tested? I watched my mother slowly die of the disease when I was a child. My mom passed away when I was six years old.
12. What made you decide to get tested? I didn't want to get married because I didn't want anybody to have to take care of me. I didn't want to have children because I was scared to pass it on.
13. What support did you have the day you received your results? My husband was there in the room. He was 100% supportive no matter what the result was. My dad wasn't there, but he was anxiously waiting by the phone. He was the first person I called.
14. As a child, how did knowing you had a chance of inheriting HD affect you? It affected every decision I made. I felt like I couldn't plan for the future, didn't want to apply to college, was scared to settle down with my boyfriend, soon-to-be husband…I didn't want to do anything long-term cause I didn't know what my future held.
15. What memories do you have of your mother? I only remember her in a nursing home. I remember that she couldn't say my name. As an adult, I know that she was probably saying my name, but through my eyes as a child, I didn't understand what was happening to her, so I just thought she didn't know who I was.
16. How old were you when you became your brother's caregiver? Justin was 27, and I was 25 when we officially signed the power of attorney paperwork, although he had been living between my house and my parent's house for at least three years before that point.
17. What is one of the best decisions you felt you made as a caregiver? Putting him in a nursing home next to his children. I lived five states away from him, and my parents lived one state away, so although it was hard for us, he got to see his kids Every. Single. Day.
18. What's your biggest regret as a caregiver? Getting a feeding tube. Although I was happy it extended his life so he could see his kids longer, it got to the point that he was living a life I know that he would not have wanted to live; Mentally, physically, and emotionally.
19. What suggestions do you have for other caregivers? Be nice to yourself. You are doing the best you can, you are appreciated, you are loved, and you are doing a good job. I know that isn't a suggestion, but I want you to know that.
20. What advice would you give to others who test negative for HD? Be prepared to have survivor guilt your entire life. It doesn't go away.