Predict-HD

The Huntington's Disease Society of America has several Centers of Excellence around the country that specialize in the care of HD patients and that is where they do most of their research. The closest one to here is the one at Emory in Atlanta, GA. As soon as found out I was gene positive for HD, I called Emory and found out what I could get involved in. At that time, they were recruiting for Predict-HD which is for people who were gene positive and were not showing any or few symptoms. This would be an observational study that I would participate in once a year for the next 5 years. The purpose of the study is to hopefully, find early predictors of the disease so that they can target research to those. Each year I would go through tests that would make make you crazy if you weren't already, more blood tests, depression tests,evaluation with a neurologist, Chip would have to fill out a survey and every other year a MRI. I was excited to sign up because I finally felt like I was doing something. I went to Emory that October and felt like a rag doll by the time they were done with me. They ask you to do so many things with your brain that you are exhausted at the end. I remember that year after filling out all of my depression surveys, they came back to me very concerned. They told me they couldn't allow me to continue in the study if I stayed this depressed and they suggested therapy. I felt terrible. What had I answered so bad that made them think this? I thought I had been holding it all together very well at this point, I had hardly even cried!

Today I am thankful for the beautiful fall weather!