There are
good days and bad days when you are a PD Advocate.
Linda and I
got in the car at 8 am to drive up to Greeley to fulfill a commitment to speak
at the PD support group there. After
stop and go traffic on I-25 through the Tech Center and construction
slowdowns/bumpy roads, we arrived in Greeley with time to spare (or so we
thought). I was riding shotgun (as
always) and was in charge of navigating us to our destination with help (?) of
mapquest. This created two problems;
mapquest directions often are convoluted (suck) and I get confused/flustered
very easily. Within minutes, we were
pretty much totally lost. Then we
thought we were back on track but the road ended at a reservoir and we were
lost again. Linda asked a nice lady who
was walking her dog for help, and she was more than happy to give it. Unfortunately, in spite of her enthusiasm for
the challenge, she knew less than we did.
We pulled over and Linda quickly came up with a new game plan, a key
part of which was to put me on the bench.
When we
rounded a corner and heard beagles barking in the distance (this part may not
be 100% factually correct), we knew we were on the right track. We arrived at our destination ten minutes
late. Now all of this may sound like “no
big deal” to most people, but I was a basket case. Stress and PD don’t mix.
I went
inside and asked a nice young lady if she could direct me to the PD support
group meeting and was met with a blank stare and the sound of crickets. Another lady joined her, but she didn’t know
either. Just as I was about to give up
another lady came along who knew where I should go (I know what you are
thinking and you should be ashamed!).
We entered
the room as people were talking about the possible role of the gut as a
starting point for PD (we knew this wasn’t a group of rookies). We were introduced and found a place to
sit.
At that
point, I actually did something smart (or at least Linda told me it was
later). I admitted that I was stressed
out from the trip and asked for a few moments to “collect myself”. Since I was surrounded by PwPs and care
partners, everyone understood totally.
The meeting went very well. They
were very interested in the topic that was our priority, a palliative care
research study at University of Colorado Hospital (we are members of the
patient/caregiver advisory council). We
covered a lot of ground and answered many questions.
As I was
closing (there was applause which is always good), I mentioned that I had
brought a few copies of my Window of
Opportunity and Shaky Paws Grampa children’s
books in case anyone was interested. At that point, a caregiver stood up holding a
copy of the “Window” book. She told the
group that the book had great value to everyone with PD and that it has been
very helpful to her (plus more nice stuff I can’t remember).
Anyone who
has put their heart and soul into writing a book that they hope will “make a
difference” in the lives of people they care about so much (in this case, all
my PD brothers and sisters) will tell you that a comment like this makes it all
worthwhile. As you can imagine, it was
difficult to get the words out to thank her adequately.
In spite of the
challenges we experienced on our journey, it was well worth it. In fact, it turned out to be very special
day.
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