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5/9/2017 Latest post:
Hi, this is Karen, Bob's wife. If you are visiting here you know Bob and you know what an amazing man he is and many of you know our story. However, I still want to start with some family updates first. It has been a busy and eventful few years for us, starting with Katie and Greg getting married in January 2012 followed by Mara and Scott marrying in December of the same year! Our first grandchild, Ben, arrived in September, 2013 to proud parents Katie and Greg. Mara and Scott moved to Houston May of 2014, good for them but a little sad for us. Then David had his first seizures on Thanksgiving morning, 2014. Our lives turned upside down. Our only priority was David and getting him well. David survived successful brain surgery in April 2015 and is still tumor free. He continues to battle seizures, but that is a small price to pay. Routine MRI's monitor for any new growth. Life continues on, as it does. Bobby moved home from Denver and we were blessed with two more grandchildren, Katie and Greg had Rose and Mara and Scott had Annie in March, 2016. Then Bobby and Jenny were married in July 2016. Mara and Scott have also moved back from Houston a few months ago so all the family is here (every Sunday for dinner!!!). Now to Bob. Several years ago Bob started struggling a little. He thought it was burn out combined with a lot of family happenings. After leaving the St Mary's family, he went through many different ER's till he just couldn't stand it any longer. He switch to urgent care work. Some one told him that a bad day at the urgent care is far better than a good day at the ER. This seemed to work for awhile. But I thought something just wasn't quite right. Over time more and more things, just little things, became a struggle for Bob. Only his family and close friends noticed. They would ask me, "what's wrong with Bob". He and I talked about it a lot and he really believed it to be job burn out, medicine had finally gotten to him. He asked to give it time and it would improve. By June of 2016. Bob had lost a significant amount of weight. He actually made an appointment to see an internist. I accompanied him to the appt. He described fatigue and job burn out. Then I spoke up and talked about my concerns. The MD gave Bob some kind of short term memory test and he failed. She determined Bob had moderate level dementia. He knew he had struggles but had no idea how bad it was. She advised Bob to stop working (which he had already done) and see a neurologist. In August, 2016 we had our first appointment. The neurologist thought Bob might have FTD (fronto temporal dementia) but was uncertain since Bob didn't fit the classic case of FTD. But, he also didn't fit the classic case of Alzheimer's. We were referred to Wash U center for Aging and Memory. The Wash U neurologist determined it to be early onset Alzheimer. He asked if Bob would be willing to enter a trial study. So, through much testing (MRI, amyloid protein PET, Tau PET) we got a positive, definitive diagnosis of Alzheimer's. Bob has started taking an experimental drug for this 12 month study. He feels it is his job and has given him purpose. The drug won't help Bob but it might help future people with this horrible disease. Bob still doesn't fit the classic case since his short term memory is probably better than mine. He does have moderate problems with language and executive function. Noise (both auditory and visual) can derail him. He much more prefers very small groups to large gatherings. Bob and I have talked about this site and he had two requests: 1) it wouldn't sound like or produce any pity parties and 2) he wants nothing to do with it. I've tried to tell people in person but each time the story takes a little more out of me. So here it is. Bob wants you to know, not for pity, but because you all mean a great deal to him. I will update the site as needed. Thank you for your support and prayers for David and now also for Bob. We hope to visit with you in the near future. Love, Karen