Huntington's Disease Society of America
I was diagnosed with HD in 1996. Although my mother was never diagnosed, it became apparent that she had it. She died in 1989 in a nursing home. My father hid the disease and never really acknowledged that she had it in public, yet would also yell at her because she had it and ridicule her for her symptoms and tell her she was crazy. This is how I grew up. My younger sisters moved in with my grandmother in Miami first, and when I was 18, I moved in with her.
For the next 25 years, I lived my life hoping that HD wouldn’t be part of my life yet it was always there in the back of my mind.
At 22, I became a Metro Dade Police Officer, made good friends, enjoyed my life, and got married in 1976. When my wife found out about HD, she decided we wouldn’t have children and within a couple of years, we were divorced. That’s when a special friend came into my life. With her I believed I could have everything I wanted out of my life. She had 3 children so we were a ready-made family. We had a perfect son in 1988, which made our family complete, and my hope for the future was bright.
Then in 1992, I started feeling strange symptoms – a little shakiness in my hands, forgetfulness of routine procedures at work, obsessive thoughts and irrational anger. I was unable to even consider that my symptoms were related to HD. The thought was too terrible. Instead, we spent 3 years seeing a psychiatrist and trying many different courses of medication, electro shock therapy and 3 hospitalizations in mental health units. Nothing took my obsession away. Finally, in 1996, I went for genetic testing to see if HD was to blame for all of these problems. By this time I was unable to work and had retired from the police department after 23 ½ years, and I considered taking my life.
The test results came back positive, so now we had an answer to what was the root of my problems. We started seeing a psychopharmacologist from the University of Miami who asked us if we’d like to try an unusual course of medication to see if it would help. I started a high dosage of Haldol (60 mg/day) and within 24 hours of the first dose I felt almost like myself again! I’ve continued this medication, needing to increase it gradually since my body metabolizes it, until this day.
I’ve never been hospitalized again and the movement associated with HD is very mild for me.But, of course, the disease has progressed in other ways. Right now, I am unable to walk and have to be in a wheelchair. I have an overall weakness, although my legs are especially weak and I need help transferring from my wheelchair to bed, bathroom or other chairs. I am able to eat regular food although it’s getting harder and I choke sometimes. People have a hard time understanding what I say. I have a great lady who comes to stay with me everyday while my wife is at work.
With my wife, I have found ways to still enjoy my life. We spend time together, sometimes just watching TV, or going for walks and I look forward to seeing my grandson and being part of my kid’s lives. I worry about my son developing HD. He’s only 25 and has no symptoms and doesn’t want to be tested at this time. I hope and pray that more treatments and a cure are available to him in the future if he needs it.
Life with HD isn’t easy, but I have found it possible to find happiness and to live my life.