NEVER GIVE UP*

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.