Who’s afraid of palliative care? My editor, of course.
Mention palliative care to a Parkie, and most will recoil in real or imagined terror. The first mental association is to hospice and/or end-of-life care.
Here’s what my editor Laura (a tiny woman who in a flaky voice has vowed to kick Parkinson in the face) said about it:
“The word palliative makes me shudder…
“It sort of spells defeat. To me it says: ‘We have given up hope of curing you, so we just want to make you comfortable before your impending demise.’
“In fewer words: ‘Make yourself comfy and die.’
And she adds: “Yet, if I had a nasty, painful, end in sight, I guess I’d want to be palliated to the max”.
The fact is palliative care is undergoing a dramatic and sweeping overhaul. Rather than end-of-life, the focus is now on creating –and following through on– health care plans. Those start at diagnosis and proceed through a number of steps that include patient self-management, mid-stage plan alterations, family support and, finally, death with dignity.
Kirk Hall’s astute reframing of palliative care is well worth reading. This link takes you to his presentation to the World Parkinson Congress.
Now more about Laura Crawford, my new blog partner, whose commitment to the PD SELF program is astonishing. Laura has all the graphic skills I do not. She also has a fertile and inventive mind about the presentation of ideas. Her illustrations have graced several of recent Shuffling Editor posts.
I asked Laura to write about herself and her husband, Dan Crawford, a retired telco senior exec. The Crawfords live in New Port Richey, FL.
Now for Laura on Laura:
Gil Thelen has called me his editor. Those who know him realize that he is pulling my leg.
But it opens up an opportunity to ask myself, “who am I?”
Fact and public confession is that I have always been a pushover.
Like in a line by T.S. Eliot, I have asked myself at every step: “Do I dare eat a peach? Do I dare disturb the Universe?”
To the concern of my parents and my teachers, since I learned to read my face was always behind a book (I was not a popular kid).
To keep safe behind the pages, I studied literature.
“I’m now licensed to read,” I marveled when I graduated, and went on to spend two decades in PR and media relations. In 2009 I started a communications agency in Mexico, from where I hail (my business partner was a designer, I wrote content).
Then puff! Out of life’s box of surprises, I was diagnosed with Parkinson’s.
After exclaiming: “Aha! That’s why I fell asleep in my client’s office!,” I thought I had arrived at my life journey’s last stop.
But it has opened the best part so far. Parkinson’s forced me out of my old constrictions and into a physically and mentally challenging territory that I am just exploring. It’s sights can be terrifying and yet liberating.
In early 2014 I left the office in my business partner’s hands, and my very wonderful husband, Dan, brought me to Florida to be treated at the UF Center for Movement Disorders and Neurorestoration.
There, Dr. Michael Okun warned me as he prescribed medication (and I’m very loosely paraphrasing this awesome neurologist):
“Watch out, for you might go gambling, stomp out in a sexual rampage or destroy your finances on a shopping spree.”
But I never thought my obsession would zero in on markers and sketch pads. To my surprise, my brain has turned to graphics. Instead of books I now buy art supplies; words were my life, but now I try to explain everything in form and color.
So here I am, about to zap Gil with my blazing color pencils if he forgets a comma, ‘cause I’m learning to be assertive (and he’ll zap me back, because he is assertivier).
Anyway, I have embraced PD SELF because the program is great not only against Parkinson’s, but –more importantly— I trust it will help me get rid of that fear of living that shrivels our capacity to enjoy whatever life we have ahead.
PD scares me. But I want to kick him in the face and say, at the end, that my trek was good and that, even if I do it in a shaky/twirly gait, I walked it as myself in full.
A final word about the Congress: gathered were several thousand Parkies using canes, walkers, wheel chairs, walking poles, companion dogs, leg braces, to name but a few PD aids.
What those brave people have in common is one thing.