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20 Questions with Help 4 HD - Amy Maynard


1. What is your name? Amy Maynard

2. How old are you? 42

3. Where are you from? Trenton, OH

4. Which one of your parents has/had HD? My Mom has HD

5. Do you have any other family members who have/had HD/JHD? I have a gene-positive HD test, my great Aunt also had HD, and my Grandfather also had HD.

6. When did you get tested? Sept 6, 2019

7. Why did you decide to get tested? My Mom tested positive, and I wanted to know if I was positive.

8. What was the testing process like for you? It was seamless. I spoke to my family doctor; she set me up with Children's Hospital Genetic counseling and the movement disorder clinic at the University of Cincinnati with Dr. Andrew Duker. They explained the disease and how it is the same but not with everyone, and we drew blood and sent it off.

9. Did you have family or friends there with you when you received your results? Yes, my husband, Steve Levasseur

10. How did you cope after receiving your results? I was ok, but as the dust settled, my heart broke for my children and their children(I can see why 50% of people who find out they are positive want to take their life). I became in a dark place but then realized I wanted to be defined by the disease. I still have a life to lead and kids to raise.

11. Have you enrolled/thought about enrolling in a clinical trial? I have, but there are not many studies for me because I do not show symptoms.

12. Do you have any children? Yes, 3. If not, do you plan to have any children? If yes, how do you cope knowing that your children are at risk? I cope by knowing that they could all be negative and understand if this is what the Lord has planned for our family, we will be together fighting because family is everything.

13. Are you a part of any support groups online or in your local community? I am not. I know they are there, but I prefer to be an introvert. But I will always be there to help someone else if they need it.

14. What have you found in your life that helps you get through each day? My family and My faith.

15. How much did you know about Huntington's Disease before you got tested? Quite a bit as my Aunt had it and passed away from it.

16. What is your biggest strength? Helpfulness

17. What is your biggest struggle? Sometimes getting help for myself when I need it.

18. If you could go back in time and talk to your younger self, what would you say to the young you? Be prepared; the road is rocky, windy, and sharp, but not unable to be traveled.

19. How do you describe Huntington's Disease to people? I tell them it is an incurable neurological disease that combines ALS, Parkinson's, and ALZ together and not to google it. The images are something that you cannot unsee.

20. How has knowing you have HD changed your life? It has made me live every day like it would be my last. I want my young adult children to understand that just because you have something does not mean that it defines you or who you will be.

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