Overall, I have to say that there are probably people out there who’ve had a worse vacation than this was.  Our hotel was in a nice section of St. Louis, and we were surprised by how much there was to see and do.  We were able to have dinner together with Matt and Kristin each evening–paid for by the study.  And not one conversation or meal was ever interrupted by a whining, misbehaving, or stinky-diapered child.

The study/research/lab rat part of the trip was a mixed bag.  On the one hand, we are so grateful that a team of brilliant doctors and scientists are studying the exact gene that our family carries.  They believe that by studying us, they may be able to more quickly develop treatments that will help both early-onset and sporadic onset (normal) Alzheimer’s sufferers.  We are happy to know that we’re doing our part to help do what we can to combat this disease.

On the other hand, we prefer not to think about this part of our lives all the time, and we try not to allow it to consume us.  But that was fairly impossible this week.  We were again faced with our lousy odds, and the reality that although new drugs are always being tested, there are currently no treatments available that can delay Alzheimer’s by more than about 6 months.

Of course, there were also the practicalities of the research: Marty lost count of the vials of blood he gave, the PET scans and MRIs were long and uncomfortable, and Thursday morning was the dreaded lumbar puncture.  Wednesday morning’s psychometric testing lasted 3 hours.

But everyone was very nice to us.  (Dr. Bateman, who heads up the project, spent and hour and a half with us, just answering our questions.)  We are thrilled to know that we now have faces and names and phone numbers of people we can call who will be glad to answer our questions in the coming years.

They are hoping to have 40 participants in the study at the St. Louis branch.  Matt and Marty were numbers 16 and 17.  If you happen to know or hear of anyone who may have a parent with the early-onset gene, please pass along our information to them.  The sooner this study is completed, the sooner they’ll be able to start working on preventions and treatments.

Thanks again for your prayers.  We’ll keep you posted.