6/20/18
I think it is fair to say
that my PD “advocacy career” started in 2011, the year I wrote my first PD
children’s book, had DBS, and began speaking to support groups and doing media
interviews. My blog, the ongoing “voice”
of my advocacy work, was first created late that year. About five years later, my blog became part
of my Shaky
Paws Grampa website.
While it was important to me
to be honest and transparent when talking about PD, it quickly became apparent
that it would be important for me to be a source of encouragement. “Never give up” became a theme that was
consistently communicated by national and regional PD organizations and
advocates like me followed suit. Rightly
so.
It has been over ten years
since I was first diagnosed. In
hindsight, I know that the symptoms began before that. Neurological symptoms began around 1992. So I really don’t know when the “clock
starting ticking” and it really doesn’t matter.
I have by no means stopped
fighting my personal battle with PD.
That said, the nature of “the battle” has changed over time, as it does
with all of us. While I don’t have a
crystal ball, I can truthfully say that, while I continue to fight, I accept
and am at peace with whatever lies ahead thanks to PD
Palliative Care. I know I
will recognize, with the help of my Palliative Care Clinic at University of
Colorado Hospital, when the time has come to stop fighting. And thanks to the advance planning we have
done and will continue to do, my family will understand and support my wishes.
I highly recommend that
anyone who has PD or is connected with it in any way in the Denver area make it
a priority to learn about the University
of Colorado PD Palliative Care program. Regardless of where you live, ask your
movement disorder neurologist where this type of service, which is a relatively
new development, is available. Or
contact the Parkinson
Foundation for information.
