Our Middle Georgia Parkinson’s Community has made notable strides in the past year in treatment and education for sufferers. We’ve realized terrific help from the larger Community in making this happen. I recounted particulars in an April 10, front-page story inThe Telegraph, our local, print-news provider.
Parkinson’s is the world’s fastest growing neurodegenerative condition. Incidence is projected to double by 2040, overtaking Alzheimer’s as the leading brain disorder.
Georgia is expected to be especially hard hit due to our rural predominance and heavy use of insecticides and pesticides. Our growing population of military retirees bring with them service exposure to petrochemical compounds (like Agent Orange) linked to PD.
The Parkinson’s Foundation estimates, quite conservatively, that Georgia has 20,600 cases of PD, 500 in Middle Georgia and 200-300 in counties touching Macon-Bibb.
The past year has seen Middle Georgia add a ground-breaking PD exercise and support program (PD Fit) at Middle Georgia State University. It was jump started with a $40,000 grant from the Peyton Anderson Foundation.
My colleagues in PD care know of no other U.S. program that combines the resources of a local state university, a local foundation and an energized and activist PD Community. PD Fit has its own Facebook page: PDFit Macon, Ga | Facebook
My Me Over PD Foundation also launched its sharable website to guide newly diagnosed Parkinson’s sufferers. The foundation’s Parkinson’s Pro-Activities free e-newsletter has topped 455 subscribers across North America. My wife and partner Struby Thelen drives this growing and valued news and information source.
Dean Jean Sumner and the Mercer University School of Medicine continued their strong support of Parkinson’s education.Dr. Sumner worked with the Anderson and MOPD foundations in 2019 to distribute 2,000 copies of the acclaimed book “Counterpunch: Duking It Out With Parkinson’s” to 375+ frontline medical offices throughout Georgia.
Mercer is now aiding the distribution of Middle Georgia PD Resource cards to area doctor’s offices. Dr. Sumner is seeking partners to bring subspecialty telemedicine services to rural, primary-care offices.
Dan Bullock came across as a gentle, always smiling, unprepossessing man. No airs about this fellow.
Dan delighted in his wife Gaye’s hot-wire energy. Not that he was a wall flower. He just ceded center stage to his bubbly partner.
Few of us in the Parkinson’s Community knew Dan Bullock’s moving story. It unspooled at his death Sept. 5 in Warner Robins (GA), age 59.
Turns out modest Dan was Maj. Daniel Edward Bullock, USAF (Ret.), a brave and determined warrior against Parkinsonism.
Bullock, of Washington, DC, received his undergraduate degree in Aeronautical Engineering at the Massachusetts Institute of Technology (MIT). He earned his Master’s Degree in Aeronautical Engineering while in Air Force service.
Dan profiled himself in 2019 as part of a project of our Middle Georgia Parkinson’s Support Group.
“I completed my military career at Robins AFB, Georgia, retiring in 2004 after 20 years of service,” Dan wrote.
“Since then I have held a variety of positions as an engineer and project manager with a number of companies, but always supporting the Air Force.”
Dan was diagnosed with Parkinson’s disease in 2014 at about age 52.
Dan and Gaye joined one of the “Study Action” groups in 2019 that Struby and I convened for Parkies. The purpose was to give sufferers and their care partners verified information and help them find ways to live well with this incurable and inscrutable condition.
The Bullocks were standouts. They did the assigned reading, came prepared and readily shared what action steps they would take to bring life to the words they had read.
Dan wrote that his medications had worked well to control his “slowness of speech and (my) poor handwriting, but has not done much for my balance, which leads me to fall at least a couple of times a week.
“In just the last couple of years, we received a refinement of the original diagnosis: a couple of neurologists told me what I really have is Progressive Supranuclear Palsy (PSP), a form of Parkinsonism which is related to Parkinson’s in that it’s caused by the death of brain cells in a certain section of the brain and has similar symptoms…and the treatments are the same.
“It differs from Parkinson’s in that slow speech and difficulty swallowing usually occur more significantly than with Parkinson’s disease. Difficulty moving the eyes, especially problems looking downward, are also more common in PSP. And unlike people with Parkinson’s, people with PSP are more likely to lean backward (and fall backward) rather than forward. I have experienced all of these symptoms.
“I participated for a while in Rock Steady Boxing (until I hurt my hip in a fall which made it difficult to walk and confined me to a wheelchair) …now that I’m nearly healed, I hope to return soon. It was definitely fun as well as therapeutic.
“I am now retired (mostly due to my condition), and I don’t drive anymore…but my wife and I agreed about a year and a half ago to buy a recumbent tricycle (more stable than a bicycle), and I ride it nearly every day, at least 3½ miles. It keeps me active, provides great cardiovascular exercise, and gives me back some of my lost mobility around town.
“So, at the moment, I’m just continuing to fight the good fight. I’m convinced that vigorous exercise is essential, so I continue to ride my trike daily, work out with our home gym equipment, and I look forward to returning to Rock Steady Boxing soon.
“We consider Dr. (Adolfo) Ramirez-Zamora at the Movement Disorders Clinic at the University of Florida in Gainesville to be ‘our’ neurologist and are committed to traveling there several times a year, because of the good service they have provided us (and the fact that there are no Movement Disorders Specialists in Middle Georgia).
“We also continue to take things one day at a time, trusting our Lord Jesus Christ with everything, knowing that he’ll be there to help us through the rough spots, and that he’ll make everything work out the way it’s supposed to.
“One example: we were approved for full Social Security Disability payments just a couple months after our first application…something we were told never happens…definitely a ‘God thing!’
“I still enjoy playing the electric bass (with Gaye, who plays guitar, and on our church’s worship music team), target shooting, and outdoor photography (which I can still do, because I haven’t experienced any tremors (yet), for which I’m very grateful!).
“We’re very active in our church (Calvary Chapel) and have received a lot of support from the membership there, but we are also very grateful for the encouragement and support of Gil and Struby Thelen, and all the members of their “tribe” of fellow Parkies, and everyone associated with the Macon PD support group. A big ‘Thank you’ to all of you!”
Dan Bullock never, ever gave up to the Monster growing in his brain.
Pam Addleton, a retired, elder advocate who has worked with many Parkinson’s sufferers, said of Dan: “PSP captured Dan, but Parkies continue to punch it with courage, smarts and a will to stay engaged in living.”
My MOPD Foundation cut new ground this week in its Parkinson’s advocacy work. It is stepping up to fill the void of PD exercise programs in Middle Georgia.
Atrium-Navicent Health System holds the Rock Steady Boxing (RSB) franchise in Middle Georgia. It recently suspended classes indefinitely with little promise of resumption. Our new PD Fit program is separate from RSB.
We have 15-20 energized Parkies who were regulars in the defunct program. They are eager to find comparable exercise regimens.
Our venue is the spectacular fitness center at Middle Georgia State University. It provides much of the equipment required for a PD program.
What equipment it lacks can be readily added at nominal cost. The university has offered use of the center at an affordable rate. A veteran physical therapist with deep background in Parkinson’s work is our lead instructor.
Our initiative engages Ol’ Doc Parkinson in hand-to-hand combat. It captures my meaning when I say PD advocates must operate at ground level, often referred to as local-local. Cloud-level engagement programs no longer cut it for an increasing number in the Parkinson’s community.
I am a throwback. I’ve always loved the low-tech, analogue world, especially for crystalline reproduction of recorded music.
I squirm with digital innovations that demand immediate acceptance and use. The higher the tech, the more I lean on long-suffering coaches to walk me through the latest maze.
My photo chief at The Tampa Tribune, Allyn DiVito, continues to be my primary digital therapist, although we live in separate cities. He’s in St. Petersburg, FL. I live in Macon, GA. (Think a long string with metal cans at either end.)
I am an unlikely cheerleader for two new “whoop-de-do” medical devices that have, in fact, changed my life for the better.
The first is Apollo Neuro, a wearable device for wrist or ankle that harmonizes the sympathetic and parasympathetic impulses in the autonomic nervous system (ANS). My Parkinson’s is primarily internal and linked to imbalances in my ANS.
I have GI problems, headlined by intractable constipation. My equilibrium and balance are askew. Ditto hot/cold regulation— hot flashes for one. Doc Parkinson also has dead aim on my urinary system with episodes of frequency and urgency.
Apollo rebalances the ANS by increasing parasympathetic impulse intensity. Sympathetic signals trigger the flight, fright impulses. Parasympathetic signals make you mellow.
Will Shankin in Apple Insider offers this highly informed take on Apollo:
“Apollo Neuro is an oddball device— it’s a wearable that doesn’t track your steps, check your heart rate, or bug you with notifications. Instead, the company behind it promises ‘real-time stress control for better sleep, focus, energy, calm, and more’ through haptic touch,” Shankin says.
“My experience with the device, while short of profoundly life-changing, has still been quite positive,” Shankin says. “The ‘Energy and Wake Up’ program’s staccato rhythms give me a nice boost to start my day when waking up. When I’m feeling anxious or too worked up over something, ‘Relax and Unwind’ helps me chill out, and the ‘Clarity and Focus mode is great for calm and concentrated work activities.”
Second game-changer device is the UroLift System to treat urinary problems related to an enlarged Prostate Gland (BPH).
UroLift uses a minimally invasive surgical approach to treat BPH. The urological surgeon ventures up the urethra, lifts and holds the enlarged prostate tissue so it no longer blocks the urethra. The surgeon then implants a device made of nickel that’s akin to a toggle bolt to lift and “pin” the prostate tissue back to open the urethra.
The maker says that It is the only “BPH treatment performed by a urologist that does not require heating, cutting, or removal of the prostate tissue. The procedure is typically performed using local anesthesia in a physician’s office or ambulatory surgery center.”
I am two months post procedure performed by Dr. Brian T. Geary of Urology Specialists of Georgia. My urinary function is “normal,” by my accounting. Furthermore, I no longer need or use most of my BPH medications.
One of the nice things that happened for me in the past year was creation of a digital network of my fellow med students at Cornell in the early 1960s.
More than a few of those doctors went to Vietnam and bore witness to the devastation caused by the widespread use of the infamous herbicide Agent Orange.
My classmate Gus Kappler, a practicing general surgeon in Amsterdam, N.Y., wrote us recently in the third person about his experiences during the war and beyond.
“Dr. Gus Kappler served as a trauma surgeon at the 85th Evacuation Hospital during the Vietnam War. He not only witnessed war’s devastation on mind, body, and soul but also has observed, for over fifty years, the continuing tragedy of Agent Orange exposure on veterans, children, and grandchildren.
“The Veterans Administration recognizes that the Dioxin in the 2,4,5,T portion of Agent Orange causes Parkinson’s Disease. Two physicians he served with in Vietnam have died from the disease.”
Two of my favorite people “bumped” into one another recently.
One is Benzi Klugar. The other is Rich Harwood. Both use the word “joy” in ways that connect powerfully with my life and work.
Dr. Kluger is a Parkinson’s expert in Rochester (NY) whom I have known since his days in Denver. He is acclaimed for re-envisioning the role of Palliative Care in Parkinson’s treatment.
Kluger introduces “joy” as an important goal in the evolution of Parkinson’s care. Writing in the JAMA Neurology Journal, he says:
“As medicine strives to provide person-centered care, it is essential that clinicians support the subjective well-being of people living with serious illness. Toward this end, addressing the subjective suffering of an individual is now recognized as complementary to medicine’s goals of treating disease. Joy, on the other hand, has generally fallen outside the purview of medicine, despite its central role in subjective well-being.”
Joy triggered my memory of Rich Harwood writing about my career in 2006. Rich is founder and president of the remarkably effective, civic-action group, The Harwood Institute.
Rich quoted from a note that I sent professional colleague and co-workers when I retired from leadership of The Tampa Tribune.
“Thelen used the word ‘joy’ to describe his work, Harwood wrote. ‘There must be joy in making the paper if customers are going to find joy in reading it.’ He then called his colleagues joy makers.”
“Thelen is 67 years old,’ Rich said. “I don’t know very many people – of any age – who think of their work as making joy. Indeed, think about the words we usually ascribe to the topsy-turvy world of the news media; two that come immediately to mind are sensationalism and hype.
“These are the polite ones! But what if more news professionals were like Thelen? What if they thought of their profession in terms of their affection for the communities they serve?”
The warmth and understanding of Rich’s words remain with me 15 years later.
Parkinson’s is an insane condition. No two cases are alike—each unique like snowflakes. Noted movement disorders specialist Dr. David Riley calls it a ginormous salad bar of 100 different non-motor signs and symptoms— to mix and match.
Since my Parkinson’s diagnosis in 2014, I have relied on metaphors to make sense of the mind-bending PD world now embedded in my consciousness. In turn, metaphors guide my journey through the mystifying maze. Here are some lessons that I have learned along the way.
The Sunday New York Times has a compelling story about how Covid restrictions appear to be hastening the decline of people with Mild Cognitive Impairment. Eminent Parkinson’s expert Dr. Michael Okun, head of the Fixel Institute at the University of Florida, calls the featured story one of “huge” importance.
It documents how Covid distancing requirements have accelerated the decline of patients with signs and symptoms of dementia. That includes cases of Mild Cognitive Impairment, which is commonplace in advancing Parkinson’s and Alzheimer’s.
Writes Katie Englehart, author of the article: “Around the country, geriatricians describe an acceleration of decline — one that they say has not yet been captured and construed by academic literature, but that they see play out in the bodies and minds of their patients. People with dementia are losing things faster than they should: weight, words, functional abilities, their remaining sense of self.”
Anecdotally, my experience with Parkie friends in Macon (Ga) and Tampa supports the story’s thrust. Most of us say our PD symptoms– most definitely including cognition– have worsened in the past year since Covid.
A person diagnosed with Parkinson’s faces an information jungle or information desert, or both.
The jungle is the overgrowth of often contradictory advice online. The desert is the absence of specific information on local medical and allied healthcare providers.
That list could contain generalist doctors, Parkinson’s specialists, urologists, physical therapists, occupational therapists, speech therapists, to name a few.
TheMe Over PD Foundation is live with a first-of-its-kind website for Parkinson’s sufferers. The website is found at Me Over PD (www.MeOverPD.org).
The first go-live is for the Parkinson’s community in Macon, GA, where the Me Over PD Foundation (MOPD) is based.
The MOPD Foundation is dedicated to assisting Parkinson’s sufferers live well with their condition. That requires patient education, a personal health plan, and a place—bricks and mortar or virtual—to assist a person fulfill their plan.
The website was four years in the making and involved dozens of students and faculty at the University of South Florida in Tampa and Middle Georgia State University in Macon.
The project grew from a blue-sky conversation with a fellow faculty member at the University of South Florida in Tampa.
The colleague, Coby O’Brien, is Master Advertising Instructor in the Zimmerman School of Advertising and Mass Communications. I was the Clendinen Professor of Critical Writing in the school.
We learned on that blue-skying day we shared another very strong tie: Parkinson’s. I was diagnosed with the debilitating, fast growing neurological condition in 2014. Coby’s father has had it for years longer.
We hatched the idea of using Coby’s upcoming Senior Advertising Class to address the information void that faced most newly diagnosed Parkies.
The students’ hefty assignment was to develop an educational campaign to supply missing local information and resources necessary to treat PD adequately.
Coby and I guided them to work and learn together as a real-world ad agency does for clients. They nailed the assignment.
Their solution was a new type of website that would guide Parkinson’s people from start to finish of their journey. On presentation day, Coby and I were short of sufficient superlatives to describe their accomplishment—as a team.
Meanwhile, my wife Struby and I moved in late 2017 from Tampa to a Continuing Care Community (Carlyle Place) in Macon, her hometown.
Enter Middle Georgia State University, an ambitious young university. Dr. Scott Spangler, an IT and computing professor, volunteered his students’ help.
Spangler saw MOPD as a teaching opportunity and perfect for his class’s semester-long Senior Capstone Project.
Our website offers authoritative general information about PD. And it has—most crucially—the capacity to host a curated list of local resources tailored for the communities that chose to adopt our website in their work.
The site has guidance for creating a personal health plan. It assists users in assembling the care team to fulfill the plan. The site helps sufferers and care partners determine their approach to medical treatment, exercise, socialization, diet and life planning among other things.
Our goal is to aid Parkinson’s sufferers gain a springboard to action no matter where they live. MOPD, a 501(c)(3) foundation, envisions the website supporting the “Prescription for Action” steps called for in the clarion book “Ending Parkinson’s Disease.”
The MOPD website arrives as Covid-19 restrictions have made personal contact extremely difficult within Parkinson’s communities. It’s an online tool to recapture some of the vital camaraderie lost by the shutdown of in-person activities such as support groups, education programs and exercise classes.
The website offers links to major national PD organizations and clinical trials. Local resources are searchable by type (community, therapy, medical).
The site gives local Parkinson’s organizations a place to post their activities without having to build their own website. There is no charge for use of the MOPD framework.
A local organization that uses the MOPD framework will need to develop and provide its own curated list of local resources and keep those lists complete and up to date.
My friend Rich Harwood asked his network to share their essential learnings from tumultuous 2020. Rich is Founder and President of The Harwood Institute for Public Innovation. What I wrote him follows.
I found managing 2020’s twists and turns was similar to what I have had to do since 2014 with my devilish Parkinson’s disease. It is essential to be both purposeful and improvisational. Purposeful means waking each day knowing I have –and must exercise– a steadfast mission to serve others afflicted with Parkinson’s. That’s my primary way of “Making God’s Love Real,” the watchword of my Tampa church home, Hyde Park Methodist.
To meet that strategic challenge, I must endlessly find new tactical tools. Put plainly, I am making stuff up on the fly to keep our PD community informed and engaged–despite covid-19 socialization restrictions. Add to that the limitations of Zoom and other tech substitutes for in-person interactions.
2. I have reinforced my commitment to “being there” for people and being transparent in my motives and intent. Most organizations we encounter daily act on internal imperatives, not the needs of their clients, customers and patients. It is vital to challenge inwardness with unrelenting outward focus. My intent is to make “good trouble” for the deprived and voiceless.
3. To my frequent discomfort, I have learned that 24/7 domestic togetherness shines penetrating light on even the strongest marriages. Discomforting rubs must be surfaced and faced, not kicked down the road. Three virtues are essential for this crucial, unending journey. Acceptance and restraint. Patience with unchangeable mental and emotional mindsets. God-given forgiveness.