In 2017 at the age of 62, I retired from my position as a family nurse practitioner when the small, independently owned private practice where I had been employed for 20 years was sold to the local hospital. I had been having some odd motor symptoms that were diagnosed as akinetic-rigid Parkinson’s disease in 2015.
The stiffness and reduced fine motor coordination on my dominant left side made many common tasks, such as taking a pap smear sample or even checking a child’s tympanic membranes, very difficult. Further, the bradykinesia (that everyone around me had apparently noticed but that escaped my consciousness entirely) essentially made me non-marketable; I could not keep pace in any busy primary care practice.
Fast forward six years later, and I still struggle some days with being retired. I miss seeing my patients, interacting with my colleagues, and participating deeply in the intellectual stimulation that comes with being employed in the most fulfilling career I could have ever possibly imagined. I have good and not-so-good days, but I try to keep a sense of humor. I submit to you now a bit of doggerel I wrote one day when my spirits were low. I’ll admit I cracked myself up writing it, and I hope this silly little bit of verse might make you laugh, too, and perhaps provide some insight into the PD lived experience.
Having PD
(to be sung to the tune of “My Favorite Things,” with apologies to Rodgers and Hammerstein)
It feels like my face has been shot full of Botox.
My unblinking stare is a definite put off.
Internal shaking fills me with unease
These are some problems with having PD.
A voice that is so soft it has people wondering
If I have been drinking, or am hiding something
My stagger-y gait only adds to the scene
Just some of the trouble of having PD.
(Chorus)
Oh, the stares when I am eating!
Make me feel so sad.
So now I’ve resolved to never eat out
And then I won’t feel so bad!
Forced to retire ‘cuz my pace was too pokey,
And simple procedures became quite beyond me.
The PD attacked on my dominant side,
The clumsiness something I just couldn’t hide
Handwriting’s a scrawl and so tiny it’s funny,
My staff couldn’t read it for love nor money,
My own “secret code” only I can read,
Hard to communicate having PD.
(Chorus)
Oh, the on-time, then the off-time!
Leaves my house a mess!
Nothing gets done when I’m 50 percent
Annoying “excuse,” I guess!
I hold up the line as I fumble with money
The curious looks say,” What’s up with you, honey?”
Don’t worry, folks, you can’t catch this disease,
Some maddening symptoms of having PD
Fatigue that’s so epic makes it hard to get work done,
And yet, at night, I can’t sleep; it is no fun,
My doc says to nap; can’t say I agree,
When your house is a mess, you can’t nap with ease.
(Chorus)
Dyskinesias! Random twitching! And the RLS,
With bradykinesia and stiff, awkward moves,
Make me look a total wreck!
Can’t smell a thing (that’s including my gas stove),
If I get dementia, then I know how I’ll go,
I’ll blow myself sky-high, just pieces they’ll find,
If PD causes me to lose my mind!
PD only wins if you break down and let it.
So laughing a lot can be darned therapeutic
With friends and family who “get” this disease,
Laughing’s the best part of having PD!
(Chorus)
DBS* is in my future,
Guess I’ll cope (who knew?),
Though I’d prefer stem cells if science provides,
Let’s treat with my own tissue!
*DBS – deep brain stimulation
Cynthia Poire Mathews is a nurse practitioner.
