We are headed up to the NIH (National Institute of Health) in Bethesda, Maryland late tomorrow for some follow up testing from the diagnostic study Jim participated in 2 years ago.
When we go for these tests and this study, Jim goes through hours and hours of scans, questions, bloodwork, waiting and sitting. So do I. When we leave, we are exhausted and given nothing to bring home that will tell us any more than we already know. We are given no new drugs or treatments. Eventually the doctor is kind enough to send us a report that will let us know they believe Jim is in the early stages of what they are pretty sure is Alzheimer’s Disease. I believe last time they labeled it as Mild Cognitive Impairment. I am a little anxious to see the changes they will note and if he is still considered to be in the same stage two years later.
You may ask why we would drive 3 1/2 hours, take off work, go through the hassle of finding someone to watch the kids (thank you!) to sit and get poked and prodded and scrutinized for two full days.
Because we believe that these studies will eventually help bring about more understanding of Alzheimer’s Disease and what causes it; specifically Younger Onset type. And if you are keeping track, this tends to run in Jim’s family and with two kids, we have been told each has a 50/50 shot of winning this genetic lottery. For those even more in tune to this situation, you will understand that we have also been told that 1 of our two babies WILL develop AD, most likely around the age of 48. Let that sink in for a moment.
Yep, that is enough to make the effort and the sacrifice more than worth it. We are not alone. Others make sacrifices and participate not only in diagnostic studies but clinical trials as well. Partly to help find a cure and partly to hold onto belief that the drug they are being the lab rat for is the magic pill that will not only be the miracle drug for others, but for themselves as well. You just can’t imagine how desperate you become when you are put into a situation with no hope, no cure, no help, nothing but a strong will. Sometimes even the strongest of wills feels weak and unsustainable.
It is a terrible time for me to take off work. Not only do I not have any vacation time, but I am at the very end of my quarter and need to bring on board 1 more member and I will make goal. When I make goal, I get a bonus. If I get a bonus, it will make up for the fact that I am taking two days off without pay. Ahhhhh. The irony. So, I will be keeping my fingers crossed that tomorrow I can do in 1 day what I should be doing in 3.
A few positives from all of this: we are continuing to make a difference in the big picture. We have good friends that are helping with Brad. (Frances is with my parents). I have a job that is letting me take time off work. I have the opportunity to make up for the lost pay. We get to visit the NIH again and be part of this amazing process and work with an amazing doctor and team. Jim and I will get two days by ourselves. I get to drive through DC. Wait. That wasn’t a positive. I get to drive through DC late at night on the way there. Better. We will be able to get results to show how much has changed with Jim in two years by the most advanced technology in the world. I will get to share our journey with all of you.