What is your name? Bobbi Renee Paver
How old are you? I am 51. My birthday is 1/8/70
At what age were you tested for HD? I was tested when I was 43.
At what age did you start showing symptoms of HD? I started to show some chorea on my left side, in my leg. I had a noticeable limp.
Which parent did you inherit HD from? I Inherited HD from my father, his mom, grandma, and I believe 6 of 8 siblings had HD.
Do any of your siblings have HD/JHD? No. I don’t know if my dad had any other children. I am a twin, and she is gene-negative.
Did you get tested because you were showing symptoms or because you wanted to know your gene status? What was your reasoning for getting tested? I was tested after a bad emotional crisis. I ended up in a psych ward, and because they diagnosed me with severe depressions, panic attacks, and I was a rager. I knew something was wrong. I decided to test knowing my history of 50% having HD.
How were you feeling after receiving your results? How did you cope? After my results, I was in shock. I had no pre-counsel. I would be extremely hopeful; let's find a cure! Too depressed!
What are the top 3 hardest things you have to deal with due to the symptoms from HD?
1.) I cannot work as a Registered Nurse. I loved nursing and being able to contribute to society as a nurse. I stopped nursing, and it became too stressful.
2.) I am a very active independent person. I rarely am found indoors from camping, quadding, hiking, surfing, cooking. I am not able to do some of these things, but because of PT, Speech therapy, and caregivers, I am receiving some freedom back. I ride horses and tend to their care on Mondays. I live on 5 acres. I help take care of 5 goats, three alpacas, and a dog. I have a small garden. I surf, I walk, I am on a softball team, I am able to cook small things. I lost my DL this year too, that was depressing. Not as difficult as giving up the Harley! (talk about depression). I used to pick people up for different events, and now I need rides. In the community, I am involved with a church, helping the homeless and women in recovery. I am so blessed to be surrounded by people who love and care for me.
3.) Loss of seeing my Children. I have a son who is 25 and a daughter who is 18; both are living at risk for HD. They live in AZ, but the heat was too much for me to handle.
10. Have you ever been arrested or questioned by law enforcement due to the symptoms of HD? Yes, In AZ. I was drinking at the time. I thought it was the alcohol, but it was HD + alcohol = EXPLOSIONS! I ended up in the psych ward 3 or 4 times, including in 2020!
11. What is something you love to do that is harder to do or can no longer do due to HD? I cannot work as a Registered Nurse. I loved nursing and being able to contribute to society as a nurse. I stopped nursing, and it became too stressful.
12. Are you employed? I am not employed. I receive SSI. I am a registered nurse.
13. What is your biggest strength? My biggest strength is my sense of humor, perseverance, and loyalty. I am willing to perform in clinical trials. I will not sit back and wait to die.
14. What is your biggest struggle? My struggle is the waiting game. I am staying strong and pressing forward until they call my number for trials.
15. How much did you know about HD by the time you were tested? I learned the basics from my aunt (my father's sister). I also got to see my great-grandmother and grandmother, who had symptoms.
16. Are you enrolled in any clinical trials? I am involved with clinical trials on the internet. My MD’s know if I am a candidate and will let me know.
17. Do you have children? How do you feel knowing that they have a 50/50 chance of having HD or JHD? My children Ian, 25, and Chloe, 18, are my heroes! They are the very reason I push forward for clinical trials, education, and HD studies. We’ve done HD walks together. They are aware of their at-risk status. Hang on, too; their cure is on the way!
18. How do you describe HD to people? I tell people I have ALS, Parkinson's, and Alzheimer’s. Put those in a bucket, give it a spin, and that’s the symptoms of HD. Without a cure, it’s progressive until death. It’s a monster and F@#k HD. I tell them I know there is a cure somewhere for my children.
19. If you could go anywhere in the world, where would you go? If I had a make a wish, I would take my kids on a trip to Puerto Rico. We would look up and trace my maternal family history, surf, snorkel, EAT, my favorite food. We would stay and enjoy no wetsuits, eat, explore the 100-mile island without getting lost. I would eat. Did I mention eat?!
20. If you could meet anyone in the world, who would it be, and what would you say to them? Kelly Slater, Pro Surfer. I’d say, “Dude can I try your rad wave pool?” LOL