Indiana University

Let me just begin by apologizing for all of my grammatical errors. I know that it is probably driving several of you nuts and yes I am aware that I have several incorrect sentences but if I take the time to go back and correct them, it would make me crazy.
After my sister tested gene positive for Huntington's Disease, she also got involved in the Predict-HD study at Emory. I also got us into a study at Indiana University that would be doing a detailed study on eye movement. They were taking all at risk people so I talked my younger sister into going to do this one with us. They flew the 3 of us into Indianapolis and put us up in a hotel for the study. It was just as exhausting as the ones at Emory. We also met a neurologist that we really liked - she spent time talking with us and answering our questions. The eye study watched you perform tasks while a camera is attatched to your head. Very cute! The reason for this testing is that they believe there is a difference in the eye movements of HD positive people and they want to see what and when that occurs. We were told that they had enough funding for us to come back one more time in 18 - 24 months. We would not be able to convince my younger sister to come back. The whole thing stressed her out a little too much. But when we did come back we were told that they were getting some great data from the testing and they were asking for funding for new research. They wanted the funding to be able to do they eye tests while we were in a MRI. Sounds fun? Anyway, we did the same tests the second time and met with the neurologist again. Dr. Joanne (everyone calls her that because her last name is impossible to pronounce) was very helpful again and we wished that she were closer so that she could be our neurologist. There aren't any neurologists here that specialize in HD. The coordinators told us that many people come from very far to see her and that if we came back for the next study, they would schedule an appointment w/ her at the same time. We were excited about that possibility! They did get the funding for the new research and we were invited back this past June. We had to do the same eye tests on the first day as usual and then on the second day, we had to do them in the MRI machine. That wasn't pleasant. I am not a fan of the closed in spaces to begin with and then I couldn't close my eyes. I had to keep them open and do the eye tests for about 50 minutes - and not move! We were also able to have actual appointments with Dr. Joanne which was good and bad. I went first and it was so nice to talk to a dr. who knew more about HD than you - here I feel like I am the one giving them the information. She did tell me that I am further into the disease than I thought, told me some things to watch for,gave me some suggestions and put me on Aricept for my confusion & thinking. Aricept is what they give Alzheimer's patients. She wants me to come back once a year right now. It will be worth the trip there once a year to see a dr. who knows what she's talking about.