The following post appears on http://www.parkinsonalliance.org/weblog/Our guest blog post is by Gil Thelen, who is a Parkie, class of 2014. He is Executive Director, Florida Society of News Editors; a retired newspaper editor and publisher; and past founder of the PD SELF training program in Tampa. He is completing a book about his journey of discovery with PD titled “Counter Punch: Sparring With Parkinson’s. His website is https://shufflingeditor.com.
There is no system of care to enter if you have Parkinson’s. That’s the case unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.
It’s all on you. You live by your ingenuity and perseverance.
Tampa Bay Parkies lost an MVP during Memorial Week. Gerard Herrero went out swinging, 10-plus years after diagnosis.
Gerard and spouse Valerie have brought enormous energy and activism to the North Tampa Support Group. Their signature is spot-on learning programs and a very special, group camaraderie.
Gerard’s memorial service is Friday June 16 at 2:00 p.m. Place is St. Timothy Catholic Church, 17512 Lakeshore Rd., Lutz, FL 33558.
I am honored to speak at the service. My words will be these:
I speak about Gerard Herrero, my steadfast friend, fellow mischief-maker, lover of Valerie, and a man who never, ever gave up or gave in to his Parkinson’s.
Diminutive, yes, but Gerard filled a room with his great wit and imposing intelligence. He missed nothing. His distinctive and twinkling eyes darted and danced.
He unerringly dissected the bull shitters, the self-serving and the pretentious. His cause was the welfare of fellow Parkies.
We both loved a bumper sticker meant for dog lovers. It says “Obedience School Dropout.” Gerard WAS a dropout from the “False Obedience School.
If I ever needed a forensic accountant to smoke out wrong doers, I would call Gerard in an instant. He would shred the bastards. And he would do it with modesty.
I divide our Parkie world into two quite distinct camps. The ones I call horizontals get their diagnosis and retire to the sofa and meekly submit to Parkinson’s. They let the Beast take them down system by system.
The verticals stand up, get moving and are determined to counter every nasty punch. They are the counter punchers, the verticals.
Gerard was a counter puncher, a steadfast vertical. He never, ever gave up or gave in.
I intend to dedicate the Parkinson’s book I am writing with my wife Struby to Gerard’s memory.
I love you pal. We’ll get together later in another place and have a very merry time together.
Finally, there’s good guidance on what Parkinson’s means for Parkies’ life span. Parkinson’s Weekly says we’ll have a year less time those without PD.
The Weekly’s report follows:
“People with Parkinson’s disease and related dementias are more likely to die younger than those of comparable age in the general population, often of ills linked to their neurological disease or of cardiovascular problems, a recent study by the Mayo Clinic found.
“Specifically, Parkinson’s patients can have their lifespan shortened by about one year, the researchers reported, while those with Lewy body dementia and Parkinson’s disease dementia were seen to die about four years earlier. On average, these people lived about two fewer years than others in the general population. Those with multiple system atrophy with parkinsonism had the greatest mortality risk, dying six years earlier on average than study counterparts without the disease.
“The findings, in the study titled, “Survival and Causes of Death Among People With Clinically Diagnosed Synucleinopathies With Parkinsonism: A Population-Based Study,“ were published in the journal JAMA Neurology.
“’As doctors, we want to be able to counsel our patients appropriately when they ask, ‘What will happen to me?’” Rodolfo Savica, MD, PhD and leading author of the study, said in a news release. “Understanding long-term outcomes can help clinicians better inform patients and their caregivers about what to expect.’”
“Researchers used the Rochester Epidemiology Project, a collaboration of patient volunteers and clinics in Minnesota and Wisconsin, to identify people living in Olmsted County, Minnesota, who received a diagnosis of Parkinson’s or related conditions from 1991 through 2010. They then compared patients’ data with that of age- and gender-matched healthy controls.
“The analysis showed that, over that period, 461 individuals were diagnosed with synucleinopathies (309 with Parkinson’s disease, 81 with Lewy body dementia, 55 with Parkinson disease dementia, and 16 with multiple system atrophy with parkinsonism).
“During follow-up, 316 (68.6%) of the total number of patients and 220 (48.7%) of the control individuals died. The most frequent cause of death among patients was their neurological disease (31.5%), followed by cardiovascular disease (15.7%). Most healthy controls died of cardiovascular disease (25.5%).”
I received unsettling news from two former golf companions this week. Both have been diagnosed with Parkinson’s disease.
Advice, they asked?
I shared completed portions of a planned short book about my PD journey: “Counter Punch: Sparring With Parkinson’s.”
Same week, I met a Medical Resident during a visit to USF’s excellent Physical Therapy and Orthopedics Departments. We exchanged emails about our conversation. I learned her MD father is a Parkie, for more than 20 years.
I wrote this to her:
“Neurology is exploding with progressive, treatable but incurable disorders. You know the list.
“Treatment protocols are difficult/impossible to write due to the idiosyncratic nature of individual cases. The best answer, short of a cure, is doctors committed to patient-centric, interdisciplinary, holistic and neurorestorative care.
“I call to your special attention Chapter 3 of “Counter Punch” on Tom Graboys. He is the “Caring Doc” model for many of us. I sense you will become that no matter your chosen field.
“I have copied Dr. Michael Okun on this letter. He heads the superb mobility disorders center at UF.
“I consider him a genius in all PD matters that count. Perhaps after your internal medicine residency at USF, you could train to become, ultimately, an MDS.
“To unfairly tug on your heartstrings, your Parkie-Dad-MD might be honored by a choice of neurology. Forgive me for that nudge; I am an overly passionate, patient advocate.”
Okun, true to his legendary form, answered in minutes.
My wife Struby and I are reading a fascinating book:
A General Theory of Loveby Thomas Lewis, MD; Fari Amini, MD; Richard Lannon, MDVintage Books (C) 2000
In it we learn the neurophysiological reason that properly structured support groups, such as PD SELF, are so vital for overcoming health challenges. Read on (emphasis added):
“…. One study, for instance, found that social isolation tripled the death rate following a heart attack. Another found that going to group psychotherapy doubled the postsurgical lifespan of women with breast cancer. A third noted that leukemia patients with strong social supports had two-year survival rates more than twice that of those who lacked them.
“In his fascinating book Love & Survival, Dean Ornish surveyed the medical literature on the relationship between isolation and human mortality. His conclusion: dozens of studies demonstrate that solitary people have a vastly increased rate of premature death from all causes — they are three to five times likelier to due early that people with ties to a caring spouse, family or community.
“With results like these backing the medical efficacy of mammalian congregation, you might think that treatments like group therapy after breast cancer would not be standard. Guess again. Affiliation is not a drug or an operation, and that makes it nearly invisible to Western medicine. Our doctors are not uninformed; on the contrary, most have read these studies and grant them a grudging intellectual acceptance. But they don’t believe in them; they can’t bring themselves to base treatment decisions on a rumored phantom like attachment. They prevailing medical paradigm has no capacity to incorporate the concept that a relationship is a physiologic process, as real and as potent as any pill or surgical procedure.”
I owe Tim Hague Sr. an enormous thank you. The Canadian Parkinson’s advocate/educator/motivator helped me rethink my relationship with the various communities in my life.
Hague was a featured speaker at the Davis Phinney Foundation’s Victory Summit last week in Punta Gorda. He captivated the more than 800 Parkies and friends with perseverance stories about winning the first Great Amazing Race Canada with son Tim Jr.
Their reward was $250,000 cash, plus automobiles and free air travel. The perseverance required to win had everything to do with Tim’s PD-related memory and organizing challenges.
To hear Tim tell his story, go to http://www.timsr.ca/watch-tim-speak/
Tim often referred to the communities in his life: family, his hometown Winnipeg, fellow Parkies, his health care team.
He got me to thinking about the communities in my life: my immediate and extended family; PD SELFers; Rock Steady Boxing compatriots; PD support group members; fellow Florida newspaper editors; the golf group I once belonged to; college friends; high school friends; journalists I worked with at three Carolinas newspapers. The list goes on and on.
Each community commands my attention, requires nourishment and provides me support in large and small ways. I count on them to help fuel my perseverance in pushing back at my Parkinson’s condition.
Davis Phinney Foundation is also about communities and individuals in those communities who serve Parkies. The foundation’s primary mission is to salute people who persevere with their PD and serve their communities. Until Friday, I had not understood how Davis Phinney stands apart from other PD organizations in this way.
I salute the foundation and their speakers, such as Tim, for the large contribution they are making to the lives of those of us with Parkinson’s.
The Davis Phinney Victory Summit returns to Southwest Florida March 3, 2017, in Punta Gorda. I did not know about last year’s well-received Summit event in Sarasota. I wish I had. Parkies who attended called it excellent.
The all-day 2017 Summit is a bit of a trek, probably 90 minutes from downtown Tampa. My wife and I plan to attend. Registration information for this free event can be found at http://www.davisphinneyfoundation.org/events/victory-summit-southwest-florida/
We can take 5 normal-sized, additional passengers in my SUV, the now famous Soul Red Mazda CX-9.
You must, dear reader, remember the December post about Soul Red running afoul of road construction, plunging down two feet into a “pit.”
Next day, enroute to my dealer, she was broadsided by a deer.
A quite big deer, judging by the damage to the left rear door.
Red was laid up for 30 days and cost 7 grand to repair. She is good as new.
I retired from (and was retired from) most aspects of organizational life Saturday. That took adamant superiors 53 years to accomplish.
I was replaced (fired) as co-facilitator of a dynamite, leadership development program for Parkies named PD SELF. Simultaneously, I resigned my other duties with the Parkinson’s Foundation. The parting was far more amiable than these ruptures tend to be.
All cards on the table face up…..……
I can be a Hotspur to manage, especially when it comes to things really, really dear to me.
Just ask my former newspaper bosses: Rich Oppel, Mark Ethridge, Mike Pate, Frank McComas, Bill Baker, Clark Hoyt, etc., etc.
I will continue my wonderful association with fine Florida newspaper editors, tend my blog www.shufflingeditor.com, work for my church and contemplate a book. Its tentative title is “Taming Hotspur Subordinates.”
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.
- Loss of sensation in dominant right hand: go left-handed. (Neuroplasticity at work)
- Clumsiness when eating (dropsies): substitute spoons for forks.
- 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)
- Leaving home without vital documents (wallet, driver’s license): always have them in shoulder bag (Man Purse), which contains Boy Bag in marsupial fashion.
- 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.
- Emotional volatility (emotional incontinence, in a Parkie friend’s unforgettable rendering); think twice (maybe 10 times), before acting on impulse (binge shopping, gambling, etc.).
- 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.
- Difficulty moving from sitting to standing: use chair with arms rather than deep sofa; employ booster toilet seat.
- Life in the slow lane (bradykinesia): add 30 minutes (or more) to a planned task (packing for trip, gym date, doctor visit).
- Unstable balance: forget cane or walker; use balance sticks. Sexy and pleasantly eye-catching (“Cross Country skiing in Florida! How neat of you!”)
- Forgetting must-do tasks: place visual reminders in front of you. For example, monthly investment report as reminder to call investment advisor.
- Loss of multi-tasking ability: KISS principle always. (Keep it simple stupid) Rely on care partner for help.
- Leaving stuff in and around car: rigid discipline to ALWAYS check roof, door locks, rear hatch and ground around vehicle.
- 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.