20 Questions with Help 4 HD - Anonymously
1. How old are you? 46
2. Where do you live? A small city in Connecticut.
3. How old were you when you decided to test for Huntington’s Disease? I was 38 when I took the blood test and 39 when I received my results.
4. What made you decide to test? I have children, and I knew that if I were to be gene-positive, I wanted to prepare them.
5. Do you have any advice for those who are getting ready to test? Just be sure to have a supportive person you can confide in; also, try getting insurance before testing.
6. What were your test results? I tested positive; my CAG is 17, 44.
7. If you could change something about the testing process, what would it be, and why? I wish there were an option when I tested to do so anonymously and from home. I didn’t want to go into an office to get my results. I hear those options are out there now, so that’s good.
8. When do you feel like your symptoms started? I started having cognitive issues, like brain fog, before testing. I would say at age 43 or 44. I now have chorea, and thankfully that is manageable through medication.
9. Did your children grow up knowing about Huntington’s Disease? They knew their grandpa had HD, and we told the children shortly after I tested.
10. Have they been tested to see if they carry the HD gene mutation? Out of the three who are at-risk, two have tested; one is negative, and the other is positive.
11. Who else in your family has HD or JoHD? My older sister lost her battle last year; she is ten years older than me. My other sister has not tested but is doing well. We got HD from our Dad.
12. Are they able to be vocal about their story? They are, and they have been huge advocates.
13. Why are you remaining anonymous? One of my children is in a position that worries them in their career. They do not want to have colleagues worry about their performance.
14. What has been the most challenging part of your journey thus far? The hardest part for me is knowing that my children may not be alive to receive treatments that will save them from suffering.
15. Now that you have gone through with testing, would you have done anything differently? I think I did all I could at the time; it is hard to prepare for such a blow.
16. Who in your life is the most supportive? My wife and her family, as well as our children.
17. Do you go to a center of excellence? I do.
18. What type of care do you receive there? I see a physical therapist, a neurologist, a psychiatrist, an occupational therapist, and a speech therapist.
19. What have you found to be the most significant resource for you and your family? That’s another person I see at the center I go to – a social worker. Our social worker has been a huge resource; she tends to think outside the box to help us find the things we need.
20. What would you say to someone new to learning about Huntington’s Disease? HD is different in everyone and every family. HD has a long list of symptoms; some people can have one or two while others have them all. HD can mess with you physically, mentally, emotionally, spiritually, and in ways that some can’t imagine.