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
