We survived out first DIAN study.
I was so nervous about going and doing the tests. Not really knowing what to expect, going somewhere new, and doing something out of the ordinary really got my nerves in a bind. But it went smoothly and we are all recuperated now.
It was an intense few days with Psychometric tests, MRI, Lumbar puncture, PET scans, and finally a clinical assessment. All the people that make this study happen were so awesome. They were so helpful with information and making sure we understood the whole process all along the way. They really made the entire experience as easy as possible for us. My sister and I had tests at different times, usually back to back, so we didn't get much sight seeing in but we got to go eat at some really great restaurants.
We got to meet Dr. Bateman, http://neuro.wustl.edu/aboutus/facultybiographies/bateman/ and got to talk with him about the drug trials they are doing. It was an honor to meet him. We also met Dr. Morris at the Knight ADRC http://alzheimer.wustl.edu/. I would recommend reading about both doctors and what they have accomplished and what they are working towards for Alzheimer's.
The progress they have made since my dad was diagnosed has been amazing. They have learned so much and are so dedicated to finding out more. It really gives me hope.
We did not do the genetic testing while we were there, that is something we can do at a local facility. As of now, I am still not doing that test, but my sister is considering it. Any children who have a parent with the confirmed mutated gene that causes dominantly inherited Alzheimer's disease can participate in the drug trials they also offer as part of the study. http://www.alzforum.org/new/detail.asp?id=3289
We go back in three years to do the same tests, but this time I will know what to expect and won't be so nervous. I am happy that we got to do this and so thankful that my sister and I got to do it together.
We are tough girls that can handle anything life throws our way and we believe that someday there will be a cure for Alzheimer's disease.
I want to thank my mom and husband for being there with us encouraging us, supporting us, and loving us every step of the way. I wouldn't want anyone else by my side. I want to also thank the rest of the family and our friends for showing their support and love. It really means a lot!