An Update as of 9-20-13

Bob and I have declared today, September 20, 2013, as his turning point day. We have just returned from a four day visit to the Mayo Clinic. The news there was not altogether good. Despite Bob’s diligent efforts to improve his memory using the computer program Lumosity, and our general impression that Bob’s memory for events during the past ten years was improving, his scores on his neuropsych assessment were no better and in some cases worse than they were in June. That test was what our neurologist was using as a marker for how much good the aggressive immune suppression was working. In addition, both of the neurologists we see at Mayo were concerned about the number of seizures that Bob has been continuing to have, even though the intensity of the events has improved somewhat.

What was encouraging was that Bob had a sleep study while we were there and he was diagnosed with sleep apnea. The study showed that his breathing stopped 50 times in two hours! That is not good news, except that it leads to a new intervention that we are hopeful can make a significant difference in the healing of Bob’s brain. “If you’re not getting a good nights’ sleep” our neurologist said flatly, prior to the sleep study, “then we are beating our heads against a brick wall.” Alas, it appears as though we have.

We also returned with plans to make a change in one of Bob’s anti-seizure medications, introducing a new medication and gradually discontinuing one that we have felt was causing some unpleasant side effects, such as a strange feeling up and down the left side of his body. We will also continue with the immune suppression infusions for several more weeks and then gradually wean off of them once we have a chance to see the effects of the new medication.

While we were at Mayo, our days were quite full with various medical appointments. One day when we only had appointments early and late in the day, we spent the middle of the day camped out in one of the waiting rooms as a “checker” for a third neurologist who we hoped to see. This is a big thing that is done at Mayo, when you can’t get an appointment with a doctor who you want to see, you sign in and then wait to see if anyone doesn’t show up for their appointment so that you can have their slot. We were not successful, and a nap probably would have done Bob more good, but at least we got to partake in that particular part of the Mayo culture.

We also managed to have three significant accomplishments while we were in Rochester. I, at long last, submitted my final revision of the second edition of my book Trust Matters to my publisher! It feels wonderful to have that project on its way to the presses! Meanwhile, Bob and Maura submitted a substantial proposal in response to an attractive RFP. And we had a delightful conversation with the superintendent of the Rochester Public Schools. So our week was productive even beyond the outstanding medical care Bob received.

We returned home last evening and spent today on a 13 hour odyssey from Toano to Newport News to implement these new treatments. There were phone calls to various providers, insurance permissions to sort out, getting fitted for his new CPAP machine, and a trip to a far flung pharmacy when our local pharmacy did not have two of the medications that Bob needed. By the end of a long day, we were finally able to accomplish all of our errands and returned home feeling hopeful that we are now on a path that will create the conditions for Bob’s brain to heal.

With that I will say “Good night, and sweet dreams!” We will be dreaming of nourishing sleep and healthy days ahead. 

-Megan