"...every breath that you take is a miracle..."
Switchfoot
So, a year has gone by since the diagnosis. Many things have happened since then. The drugs
are working, but so are the side effects. My gate is pretty good, my right arm is not so stiff, and
my toes no longer curl under. I have done a biopsy, a genetic study, completed more online
questionnaires than I can count and I am currently taking part in the Fox Insight study.
My parents both became octogenarians! My mom's stage two cancer diagnosis quickly changed
to stage four, but surgery and Ibrance, the newest miracle drug, will keep my mom going for
many years to come. Avoiding traditional chemo and living for many more years is good news,
but my father is still very depressed. I get, I really do, my mom is the love of his life and the best
thing that ever happened to him and this was a close call.
Ocean, now 5, is becoming quite the soccer player and currently fascinated with masks, dogs,
designing his own games and mazes and with origami. Kate has been completely supportive and
really just wonderful. Not only does she have to put up with me and my tangential roller coaster
train of thought, she now has to deal with me on PD medication. In general, I am surrounded by
understanding family and friends, so I consider myself lucky.
Last week I spent three days training to be a Research Advocate with the Parkinson's DiseaseFoundation (PDF). In an NJ hotel and conference center, I joined patients, spouses, medical
doctors an researchers to learn about PD, advances in treatment and how to critically review
published research. My doctor spoke about her project to bring care and kindness to shut in
New Yorkers with PD. I was reminded by more than a few people present how lucky I was to
have such a great doctor. My fellow parkys and I had a range of different symptoms in varying degrees of severity. I felt a little guilty when answering yes to questions like,
"Are you still working?" or "Are you driving your own car?"
Ultimately, I was reminded that I have nothing to complain about.
Back at work, a colleague from the central office pointed out that I was not just the advisor the
the Committee for Disabled Students, I was also a member. I quickly pointed out that PD was
only a disability when it became debilitating and that I was not there yet and may never be.
Please do not misunderstand me, I am not embarrassed to have Parkinson's nor would I be
ashamed to be disabled, I just cannot put on the suffering of others like a coat. I may end up
with a cane in 20 years and I do not look forward to having another accessory to match with my
bow tie, pocket square, lapel flower and cuff links!.
Ultimately, a year with PD has taught me that I am lucky. My symptoms are mild and I have
loving and supportive family and friends. I have a good career and an intact sense of humor. I
have a life to live and PD is just part of it. Now please excuse me while I take a hand full of pills
and swim in a pond! I will leave you with something a fellow parky recently said to me,
"Any morning you open your eyes and see the ceiling is a good morning!"
Switchfoot
