J. Daniel Miller was diagnosed with Huntington’s disease when he was 21. No one in his family had heard of the disease.
When I was in middle school, I was having difficulty coping with school and life events in general. In school they labeled me with attention deficit hyperactivity disorder, known as ADHD, and Asperger’s syndrome. I wore braces on my legs and my back. In high school I became angrier and didn’t know why. I had difficulty with impulsivity. I physically ached and felt sore a lot. The anger got worse and they diagnosed me with bipolar disorder, but there was no explanation for my body’s physical shaking and constant movement that just kept getting worse.
I had gone to the same pediatric neurologist in Chattanooga, Tenn., since I was 5 years old. He retired and I went to another neurologist who we didn’t find to be very helpful. My mom found another neurologist in Chattanooga and she immediately had genetic testing completed. That’s when they discovered I carry a gene mutation that causes Huntington’s disease (HD). I was 21 years old. She referred me to the Movement Disorder Clinic at Vanderbilt University Medical Center in Nashville. My doctor there has been wonderful. I finally got some help.
Neither my family nor I had ever heard of HD.* The closest thing in our family to this was an aunt who had Parkinson’s disease. My mom was tested and does not carry the gene. My dad is 71 and has no symptoms. So it was all new to us. For a while I attended a NAMI (National Alliance on Mental Illness) support group, but nobody in the group had ever heard of HD. Eventually I quit going. It would be nice to be able to attend a support group with other HD individuals, but the city I live in has no such support group. I am interested in connecting with others who have HD on Facebook.
I am 25 now and it can feel like HD controls everything in my life. I had to give up driving because of the movement. I am 6’7”, so I can’t just drive any car. I have to have more legroom than most people. Even though my HD movement is somewhat controlled with medications, I didn’t drive for so long that I sold my modified Hyundai Accent.
I have to be careful about family engagements and make sure I have taken my medicine well before we go anywhere so that I won’t get nervous and start shaking too badly during the outing. I spill my drink when I shake. I have a hard time eating when I am shaking, which I am most of the time. I get embarrassed.
My mom and dad are my biggest supporters. They take me to movie matinees because crowds make me nervous. I also have a half sister who takes me to movies. I had hopes of getting married and having a family. That is on hold. I don’t feel it would be fair to have children and have them go through what I am going through with this disease.
I feel isolated because most people don’t understand HD and if I am shaking they just stare. It makes it hard to make friends. My best friend is my cousin, Timothy. He lives in a different state and I don’t get to see him that often. I have two other half siblings who are older, and a younger brother who is in the Marine Reserves and doesn’t understand much about my disease.
I took some classes at our local community college. I dropped out during a difficult time with my disease. I hope to go back in the future and take more classes. My desire is to be able to live on my own, have some independence. But right now that is not possible.
I find encouragement and support from my therapist, my parents and God. I enjoy spending time with my cousin Timothy. I love watching movies and singing. Oh yes, and I have a 2-year-old nephew—he is a joy.
Living with HD has taught me to live every day like it is your last. Because tomorrow may not come and if it does you may not be the same as you were the day before. For me, I just keep going and believe good things will happen in my life. I believe in prayer.
To someone newly diagnosed with HD, I would say: Buckle up. The ride can get really bumpy. But even with the bumps, you have to keep going.
*In most cases, HD is a genetic disease, which carries a 50 percent risk of inheritance. In rare cases like Daniel’s, the altered gene appears without any family history of the disease.