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20 Questions with Help 4 HD - Linda Pettis-Ingle

1. What is your name? My name is Linda Pettis-Ingle

2. How old are you? I am 66 years old.

3. Where are you from? I am originally from Minneapolis but spent most of my life in the Seattle area. Recently I returned to Minneapolis.

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

5. Besides your parent, do you have any other family members who have/had been diagnosed with HD/JHD? Yes, I had many family members who had passed from HD. Both of my siblings had JHD, my twin cousins had JHD, 1 of my aunts had JHD, 1-second cousin had JHD, 1-second cousin had HD, and one aunt had HD.

6. When did you get tested? I have been tested twice. The first time was in 1989 with the “Marker” test. The second time was in 2010 with the CAG test.

7. Why did you decide to get tested? The first time I was 33 years old and just wanted to be told I was negative. I was pretty certain I would be negative since HD strikes so young in my family. I was not prepared for an 84% increased risk result. The second time I tested, I was 55 years old with no symptoms. My son wanted to have a family in the future, and I wanted to know for certain if he was at risk or not. And I just wanted to know for sure what my status was with the CAG test since I was so exhausted from worrying about it.

8. What was the testing process like for you (easy, hard, long, stressful...etc.)? The Marker test process was horrible. I actually had to have blood samples from several relatives mailed to the University of British Columbia to analyze. This was before we even had knowledge of CAGs. It was extremely stressful and took 2 months to get the results. The second time I tested was with the CAG test. The process itself was much easier, but both times it was terrifying to me to find out what the result was.

9. What was your immediate thought/feeling after the doctor told you that you were negative for HD? My immediate feeling was one of utter relief. I could hardly get my head around the fact that I was really negative. I was so happy that my kids were free from HD, and I could hardly wait to tell them. It felt surreal …a dream come true.

10. Did you have family or friends there with you when you got your results? The first time I had my mother and a few friends with me. The second time just one friend.

11. How long did it take to get your test results back? The first time 2 whole months. The second time was only about a week.

12. Do you have any children? If not, do you plan to have any children? Yes, I have 2 adult children and a grandchild.

13. Since testing negative, are you still part of any HD advocacy groups? I was active in the Washington chapter of HDSA but have not been active for a few years. I am thinking of writing about my experience of testing twice and getting involved again.

14. How much did you know about Huntington’s Disease before you got tested? I knew a lot as both of my siblings had JHD.

15. What is your biggest strength? My biggest strength is being very resilient.

16. What is your biggest struggle? My biggest struggle is dealing with anxiety. Even after testing negative, it has been hard to let go of all the years of dealing with the fear and anxiety of being at risk for HD.

17. If you could go back in time and talk to your younger self, what would you say to young you? I would tell myself that being anxious and worrying robs you of your life, to try to take one day at a time. I would also tell myself it is not shameful to be at risk for a hereditary disease and that I was worthy of love.

18. How do you describe Huntington’s Disease to people? I describe it as a neurodegenerative disease that is like a combination of Parkinson’s, ALS, and Alzheimer’s disease.

19. How has knowing you don’t have HD changed your life? It has allowed me to be more of my true self. I hid HD from almost everyone for many years. Some of my friends that I had known for years had no idea that I was at risk. Now I can talk openly about it, and I don’t have that horrible, fearful feeling of wondering when it is going to strike. The best thing is knowing that my children and grandchild are free from it.

20. What advice would you give to someone who is considering or is going through the testing process for HD? Testing is an extremely stressful and scary process. We all hope to test negative, and if that is the case, it is a tremendous relief. But one must be quite certain that they can live with a positive result should that be the case. You can’t take that knowledge back.

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