Parkinson's Disease, Parkinson's exercise, PDF, Support Groups, Uncategorized

WORKAROUNDS: Counterpunching 14 PD Indignities

pd-walkaround

I treasure the work of the late Dr. Tom Graboys, esteemed Boston cardiologist.

I reread his memoir about PD (“Life in the Balance”), and was riveted by two words: diminishment and control.

Graboys’s major PD undertakings were managing his diminishing capacities and keeping control of his life.

Those are my issues, too.

I give you a sampling of my tactics to counter PD’s relentless drive to diminish, and wrest control, of my life.

  1. Loss of sensation in dominant right hand: go left-handed. (Neuroplasticity at work)
  1. Clumsiness when eating (dropsies): substitute spoons for forks.
  1. Can’t remember where I left keys and like valuables: tether items to a constant in life. In my case, a small leather pouch that’s always at my side. (Boy Bag)
  1. Leaving home without vital documents (wallet, driver’s license): always have them in shoulder bag (Man Purse), which contains Boy Bag in marsupial fashion.
  1. Driving uncertainty: get technology loaded car (GPS, blind spot displays, radar and cameras everywhere); stick to middle lane; U-turns rather than left turns into four-lane roads; care partner drives in unfamiliar areas.
  1. Emotional volatility (emotional incontinence, in a Parkie friend’s unforgettable rendering); think twice (maybe 10 times), before acting on impulse (binge shopping, gambling, etc.).
  1. Thanks to a nOH-like condition, peeing every 30 minutes, urgently: always know (and plan around) location of nearest toilet; wear quick-exit gym pants; stow your pride and employ adult diaper for trips.
  1. Difficulty moving from sitting to standing: use chair with arms rather than deep sofa; employ booster toilet seat.
  1. Life in the slow lane (bradykinesia): add 30 minutes (or more) to a planned task (packing for trip, gym date, doctor visit).
  1. Unstable balance: forget cane or walker; use balance sticks. Sexy and pleasantly eye-catching (“Cross Country skiing in Florida! How neat of you!”)
  1. Forgetting must-do tasks: place visual reminders in front of you. For example, monthly investment report as reminder to call investment advisor.
  1. Loss of multi-tasking ability: KISS principle always. (Keep it simple stupid) Rely on care partner for help.
  1. Leaving stuff in and around car: rigid discipline to ALWAYS check roof, door locks, rear hatch and ground around vehicle.
  1. What-to-wear-today dilemma (due to not remembering your calendar obligations): choose clothes night before. For this once well-dressed guy, this is a new challenge. I need garb that fits the day and is quickly and easily removed, thus assisting me in avoiding the ultimate public embarrassment: pissing in one’s shoes.
National Parkinson's Foundation, Parkinson Disease Foundation, Parkinson's Disease, PDF

I Love P(d)F. Really!

i-love-pdf

I often wonder who’s reading this blog. But I rarely lift a finger to find out.

Walla!

Out of the blue, I am told I have several dozen readers at the New York City office of Parkinson’s Foundation, nee Parkinson Disease Foundation.

My recent scribblings, especially a satirical one about my prize-winning contest post, caused concern there that (1) I had gone bat shit (2) I was mad at PDF, my “employer” in Patient Advocacy and PD SELF or (3) A bit of both.

First, the bat shit issue. My pretensions did carry me away: virtuoso thinking and laugh-a-minute prose.

I apologize to all concerned at PF-New York. (No laughing down there at PF-Miami. I’ve got a zinger coming for you.)

A special apology to John Lehr, new PF CEO, whose last name I misspelled. I imagined him receiving this scurrilous stuff about me from two top aides:

“Remember that passionate and sometimes difficult to manage PAIR (Patient Advocate) in Tampa..? The guy who blogs at www.shufflingeditor.com.

“Turns out the dude actually can write. He won us a $2,500 prize… for contributing to a commercial blog about Moving Day. It was their most liked post of the year.

“Since the money is ours, consider sending him an ‘Atta boy’ note as his consolation prize. He blusters but is a sucker for sentimentality.”

John did send me a gracious message about my work. Thanks, John, in all sincerity.

How about #2, the mad at PF supposition?

I love you Ronnie, Karlin, Melissa, Megan. We Parkies (or PWP in your preferred, clunky usage) bless you for your wonderful website, accurate and informed free publications and advocacy on our behalf. You’re the best!

Now for #3, which is close to right.

I’ve experienced too many dropped balls on fundamental management practices: Unreturned phone calls and messages; lengthy delays on expense checks; vague commitments like…PF exec to me: “How about I call first thing tomorrow morning?” I say I’m available from 5:00 a.m. to 10:30. Call comes at 10:10; lasts until 11:00, cutting out half my exercise class.

As for PF-Miami, you dispatch a staffer to Tampa Bay to prepare for 2017 Moving Day. You don’t think to tell me, the PF PAIR in the region. PD community asks, “Who is this other PF person.” I plead ignorance, appearing to be the veritable turnip truck driver and PF the turnips spilled on the road.

In closing, a gratuitous (perhaps) memo from a former newspaper CEO to our new PF CEO, John Lehr:

Merging organizations is a huge change effort. I’ve done it. Get your elevator speech ready ASAP. Ground it in core values. Speak it relentlessly.

About the time you can’t say it one more time, it starts, yes STARTS, sinking in.

PF, I’m with you for the long haul. Make me proud always.

Remember we Parkies push back at our condition with love, laughter, hope and prayer, to paraphrase my email signer.

I love you guys, every day, always.

But loosen up AND amp up your sense of humor. Please.