1. What is your name? Billie-Jo Wasson
2. Where are you from? Morrisville, Vermont
3. How old is your child with JHD? 22 years old
4. How old was your child when they were tested for JHD? 18 years old
5. How old was your child when they started showing symptoms? 16 years old
6. Who did your child inherit JHD from, Mom or Dad? His dad. He passed away three years ago.
7. What were the first signs that made you think your child may have JHD? CLUMSINESS & minor face twitches. At the time, I did not know about JHD.
8. I chalked the "physical" signs as anxiety from starting high school & the condition of his own father.
9. Did you notice any sort of changes in school before your child was diagnosed? He struggled academically during the last two years of high school. Usually, Matthew was very good academically, with B's & C's. Again, I chalked it up to anxiety/depression.
10. Did you notice any behavior changes in your child around the time of their diagnosis? Matthew has never been "high strung" behaviorally. He has always been a laid-back guy. However, I did notice that he withdrew himself from many social situations. I became his "mouthpiece" because the thought of interacting with people made him nervous.
11. How is your child's behavior now vs. when they were first diagnosed with JHD? He has become even more socially distant.
12. Did you know what JHD was before your child was diagnosed? NO
13. What was the testing process like? We went to a genetic counselor who explained the process and the outcomes of a positive test at Matthew's age. They were actually trying to talk Matthew out of being tested, explaining that a POSITIVE test would LIMIT Matthew's career choices....etc.
14. What professionals helped you and your family through the genetic testing process? Genetic counseling.
15. What stage of JHD was your child in when they were diagnosed? Beginning stages.
16. What activities do you and your child enjoy doing together? We like trying new food, enjoying the scenery, SELFIES, traveling, watching movies, and playing UNO.
Are you part of any support groups? (online or in-person) I am affiliated with many online support groups. I also have a personal counselor I see 2 X a month for support. Matthew has refused MANY times...socially withdrawn.
17. Do you have any other children at risk for HD/JHD? I have an older son (age 27). He has tested NEGATIVE. However, Matthew's dad had three other children from his 1st marriage...
18. How do you explain JHD to people? Short & sweet. I tell them it is a BRAIN DISEASE that is INHERITED.
19. What is your biggest struggle as a caregiver for a child with JHD? PATIENCE! I have to remind myself that it IS the DISEASE!! Matthew's clumsiness & messiness is not his fault. As of lately, I am learning just how unfriendly this world is to the handicapped. Especially for those with mobility problems...this even makes the "caregiver" role difficult!
20. If you could give any advice to a new caregiver, what would you tell them? (for example, ss, driving talking to children) NO MATTER how much we think we have everything planned or figured out....there will always be those times when we are DISAPPOINTED. NEVER refuse the HELP when offered....it makes these times a little easier to COPE with.