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My Swallowing Misadventures

I’ve developed a swallowing problem over the past year. It’s a big deal.

I trace some of my 40-pound weight loss to diminished appetite tied to how slowly I now eat. Increased drooling has not been fun either.

Worst case, swallowing disability can result in aspiration pneumonia, one of the two leading causes of death for Parkinson’s sufferers. (The other is falls secondary to balance and equilibrium deficits.)

I have added an ace speech therapist to my health care team. Her grocery list of mouth exercises has significantly improved my symptoms

Dr. Michael Okun has a blog post this week that explores in exquisite detail the spectrum of swallowing problems.

Find it at http://parkinsonsecrets.com/blog/2020/9/26/7qedam0quxrto7qrafbg4i2d70g51x

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How a Multimedia “King” Ignored Podcasting

Back at the turn of the century, I was a small-bore “King” of media convergence.  Or maybe I was only a Duke. (Go Blue Devils!)

Our big convergence deal in Tampa was building the News Center in 2000. It housed WFLA-TV, TBO.com and TheTampa Tribune newsroom. 

Journalists migrated to our “Mecca” to observe how once-cutthroat competitors “made nice.”  Reporters delivered news on the “first available platform,” no matter the medium that signed their paycheck.  Radical idea then. Common practice today.

I retired as President and Publisher of the Tribune in 2006. A new convergence model was sprouting then. Its name: podcasting.

I entered the academic religious order for the next decade, never engaging and using this new media platform. I was unaware of the reach and power of podcasting. ( A podcast is an episodic series of spoken word and digital files that a user downloads to a personal device for later listening.)

Larry Gifford, co-founder of PD Avengers, introduced me to the podcast experience last month. PD Avengers is a global alliance of people with Parkinson’s standing together to demand change in how the condition is seen and treated. I am an Avenger in training. (See http://www.PDAvengers.com)

Larry is national director of Talk Radio for Corus Entertainment in Canada. He hosts the podcast “When Life Gives You Parkinson’s.”

After a Zoom meeting where I mentioned the topic, he invited me to discuss “When You Know It’s Time To Fire Your Neurologist.” I’ve done so twice.

It was a terrific experience.  “I see now that they are very effective, new journalism form,” I wrote Larry about podcasts. “In essence you and Rebecca (his wife and co-host) created a warm and harmonious space where a number of voices were connected into a very well told story.”

In researching this post, I encountered Andrea Bernstein, an accomplished and versatile investigative reporter.

“I adore audio,” she said. “The pauses, the breaths, the catches, the little inflections that can say so much more than hundreds of words on a page. Finding a perfect piece of tape is like summiting a mountain, the whole world just opens up before you.”

“When You Know It’s Time To Fire Your Neurologist.”

You can listen and download from here: https://t.co/HDIHuT0u2m

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It’s the Stress, Stupid

Will I never get it?
Suddenly my Parkinson’s symptoms spike through the roof. I get pain in weird places. My meds wear off super fast.
I wander around in a fog.  I can’t mentally connect to changed circumstances. 
Have I suddenly had a falling-off the-cliff moment with my PD progression?  What did I do wrong?
DUH!
It’s the news thing again. It’s Trump madness, this time his Covid-19 diagnosis and hospitalization.

Stress am I, which is Ol’ Doc Parkinson’s helpmate in bringing out my worst PD symptoms.How can I forget my recent blog on the connection, ‘The Clarifying Power of What Next.” (Sept. 14)


I care deeply about what’s happening to my country. It’s tearing itself apart. The 2020 presidential campaign is a scene from “One Flew Over The Cuckoo’s Nest.”


I have to bloody remember that stress fries my autonomic nervous system.  I need to go to my “Happy Place” where a Perdomo 20th Anniversary awaits lighting and a glass of Merlot is being poured.

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The Clarifying Power of What Next

Two words preoccupied me. What and Next.

I awakened with thoughts like: More fires today? More hurricanes? More political strife? More unnecessary Covid-19 deaths? More economic blows?

Those questions had me on the wrong path, wasting time on matters I can’t control.

Instead of feeling acted upon, I needed to drive action in a vital cause, one within my reach. That cause is the wellbeing of my fellow Parkinson’s disease sufferers.

Covid-19 has disrupted personal contact within Parkie communities, perhaps for years to come. That lost comradery was powerful “medicine” pushing back at Parkinson’s. (My MeOverPD foundation will resume our in-person work in Georgia and Florida when possible.)

My altered path centers on involvement with a new global PD community named PD Avengers. (www.pdavengers.com)

Now numbering 500-plus, PD Avengers’ goal is to mobilize the millions of people touched by Parkinson’s to prevent, advocate for and treat this fast-growing malady. Technology like Zoom is the tool for wiring our community.

Two powerful messages reached me last week that reinforce my course.

The first was from Emily M.D. Scott, a peripatetic, Lutheran minister. She reflected on the travels of Jesus’ Twelve Apostles.

“These solitary travelers journeyed in situations of great uncertainty, much like our own,” Scott wrote. “Their destinations may have been clear, but their futures were less so. Somewhere along the way, however, they always encountered something unexpected: the astonishing presence of the sacred. 

“Instead of clamoring to go ‘back,’ we can turn, and face into a future that is uncertain, but rife with possibilities to build a world that is more compassionate. There are others on the road ahead of us: the protesters who’ve flooded our streets, risking their health to call for a nation free of racist brutality. They can see a new world.” 

The second message came from Rich Harwood, president of the Harwood Institute. (www.theharwoodinstitute.org) He is my great and good friend. His life mission is building outward-focused, strong, resilient communities. His latest best-selling book is Stepping Forward.

His email concerned why personal resiliency alone is not enough to see us through our perils. 

“The challenges before us demand a shared response,” he said. “And let’s be clear: no one leader, organization, or group can address the fault lines that exist in our society. None of us during a time like this (or any time) can go it alone, on our own. It never works. We need each other. 

“To build a more hopeful, inclusive society, personal agency is indeed critical, but shared agency is essential

“We must actively and routinely reach out to others for support, to work together, and to go forward together. In doing so, I cannot emphasize this next point enough: each of us must recognize that in times like these, small steps in the right direction are so important, as they get us in motion, and when we are in motion, we gain confidence, and new possibilities arise. We make room for progress, serendipity, and hope.” 

Thank you, Emily and Rich. You helped clarify my What Next.

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Okun&Companies Hit Two Homers With Parkinson’s Books

For Dr. Michael S. Okun, author as well as leading neurologist, this has been a smashing year. His name is on two books, each of which set new standards for excellence in Parkinson’s disease treatment and advocacy.

He and three other renowned Parkinson’s experts opened March with the acclaimed call to action, Ending Parkinson’s Disease. The second book, also acclaimed, came in August: Living with Parkinson’s Disease. 

“Ending” is a powerful indictment of how medical care systems worldwide have given short shrift to Parkinson’s and its 8 million sufferers. The book authoritatively writes the history of this fast-growing condition that will afflict 1 in 15 persons living today.

It zeroes in on the urgent need to limit exposure to the industrial chemicals—pesticides in particular—that are strongly linked to its cause. “Ending” calls for bold action to prevent, advocate for, care for and treat this bedeviling brain disease. In addition to Okun, the authors are Ray Dorsey, Todd Sherer and Bastiaan Bloem.

The four are willing into existence an international cadre of people determined to realize the four-part action plan.  Its name is PD Avengers. (pdavengers.com) I am one.

Okun‘s newest book “Living” is written with Parkinson’s experts Irene A. Malaty MD and Wissam Deeb MD.

The authors promise a “complete guide” to the infinitive mysteries of Parkinson’s disease for sufferers and care partners. They deliver in Living with Parkinson’s Disease.

“Living” is approachable, well organized, authoritative and invaluable. It’s reader friendly with pull out summaries, helpful margin notes, case examples, “clinical pearls for a better life” and a “concluding note” at chapter ends.

A just-diagnosed sufferer can get the guidance needed in starting their fraught journey. Each chapter deepens to meet the more detailed needs of midcourse sufferers and beyond. 

“Living” belongs in the hands of all persons affected by PD. It is the indispensable guide to living as best possible with this inscrutable condition.

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PD AVENGERS RIP INTO INEQUALITY OF CARE

I spent an absorbing two hours this week “Zooming” in-and-out on the internet with a dozen international activist/leaders in the struggle against Parkinson’s disease.

Among the countries represented were Canada, Great Britain, Ireland and the USA. Participants were eager to assault inequality in access to quality Parkinson’s care worldwide.

I will know more about them and their stories as our twice-monthly meetings gain momentum. Our leader is the able Richelle Flanagan of Ireland.

Most members seem to be PD sufferers—a mixture of short and long duration. There were old guys like me and working folk in their 40s.

It is incongruous that “journalist me” is telling a sketchy story with limited details. But after all, it’s Parkinson’s, a condition that is wispy–the classic Snowflake Disease. 

Our “equity” committee is part of PD Avengers. This new, global group comprises Parkinson’s advocates who were inspired to take action after reading the remarkable new book “Ending Parkinson’s” by Drs. Bas Bloem, Michael Okun, Ray Dorsey and Todd Sherer.

The book’s Prescription for Action is this: “We must form a PACT to end Parkinson’s. This PACT will Prevent the disease, Advocate for policies and resources, Care for all affected and Treat the condition with new and more effective therapies.” 

I wrote this in an April newspaper review of the book: It is a compelling read and a “stunning and important work deserving urgent attention from Parkinson’s fighters, their families and health-care policymakers.”

The charge to our equity committee is: 

“We need all people of the world with Parkinson’s to have equitable access to proper medications, treatments, information and support in order to meaningfully add their voices to our 50 million PD Avengers.”’

I will report regularly on the committee’s work in coming months.

For more on PD Avengers, see https://www.pdavengers.com.

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Telemedicine Breakthrough for Parkinson’s Sufferers

For no good reason other than technical incompetence, I failed to to share some important news this week about telemedicine and Parkinson’s disease.

The Trump administration announced Tuesday an executive order that dramatically expands the ability of seniors to access medical care remotely through telemedicine.

In March, the administration announced that Medicare would begin broadly reimbursing providers for virtual services. The program now covers more than 135 medical services through telemedicine, wrote Washington Post health expert Karen Tumulty.

Prior to March, telemedicine was not widely available due to restrictions based on where a patient lived  and the credentials of a healthcare provider to practice in that distance state.

This monumental changed is of special note to  Parkinson’s sufferers like me who confront a shortage of Parkinson’s PT experts in their home state. For example the 23 counties of middle Georgia lack a single, practicing Mobility Disease Specialist (MDS).

Now a patient in Macon GA , for example, can have a telemedicine “office” visit with an MDS in at the University of Florida. There’s an entire new playing field to bring expert services to remote areas.

For no good reason other than technical incompetence, I failed to to share some important news this week about telemedicine and Parkinson’s disease.

The Trump administration announced Tuesday an executive order that dramatically expands the ability of seniors to access medical care remotely through telemedicine.

In March, the administration announced that Medicare would begin broadly reimbursing providers for virtual services. The program now covers more than 135 medical services through telemedicine, wrote Washington Post health expert Karen Tumulty.

Prior to March, telemedicine was not widely available due to restrictions based on where a patient lived  and the credentials of a healthcare provider to practice in that distance state.

This monumental changed is of special note to  Parkinson’s sufferers like me who confront a shortage of Parkinson’s PT experts in their home state. For example the 23 counties of middle Georgia lack a single, practicing Mobility Disease Specialist (MDS).

Now a patient in Macon GA , for example, can have a telemedicine “office” visit with an MDS in at the University of Florida. There’s an entire new playing field to bring expert services to remote areas.

Davis Phinney Foundation, Must Read, Parkinson's Disease, Parkinson's exercise, Parkinson's Patient Care, Support Groups, Uncategorized

Four Steps To Revive PD Communities

Ed Note: The following blog is the work of Melanie Dizon of the Davis Phinney (Parkinson’s) Foundation. It is the first concrete plan I have seen that addresses restoration of social connections in Pandemic-stressed, Parkinson’s communities. Hats off to  Mel and her colleagues for a wonderful, just-in-time plan of action.

 

In the beginning, it was kind of fun, right? Or at least interesting.

You learned how to connect with your family and friends online.

Your Rock Steady Boxing coach, Dance for PD®  teacher, and your Pedaling For Parkinson’s™ instructor came through the internet and right to your living room or home gym for a safe workout.

You may have even tried out a new skill, picked up a long-ago loved hobby, or took up a new sport while you followed “stay-at-home” orders.

You even listened to those who said, “You can live well with Parkinson’s at a distance”, especially your doctors who you may have “seen” and spoken to even more lately because of the magic of telemedicine. (If we can keep and build on one thing from this crisis, can we please make it access to telemedicine for all!)

Fortunately, in the early days of the COVID-19 pandemic, you did continue to live well with Parkinson’s. You made a commitment to it. You promised yourself you would do it. And you vowed that nothing was going to get in your way.

But, nine or 10 weeks ago, you couldn’t know how much you’d miss hugs from your boxing mates, a fist bump from your cycling buddy after you survived a tough climb, or the knowing nod and the tell-tale creasing of the eyes when someone who truly gets you returns a smile. You may have suspected, but you never had to test out how important those physical connections are to living well with Parkinson’s.

Now you know.

And Zoom support group calls, YouTube videos, and online group exercise classes are starting to wear on you. And despite their widespread availability, so much so that you could fill your day with them if you wanted to, they are exactly no substitute for the in-real-life connections you crave.

Over the past couple of weeks, we’ve had more time than ever to check in with our Parkinson’s community and listen to them talk about their experiences and challenges. Without a doubt, the challenges that come from not being able to be in the same room together are at the top of the list.

So, while we know that we aren’t out of the woods yet, and that some of these online solutions will likely be with us for a while, we wanted to share four simple things you can do to feed your need and longing for in-person connections today.

(Note: Please check with your medical and care teams before you try any of these out.)

#1 – Find a walking/running buddy to add to your pod

While enclosed spaces have shown to be breeding grounds for the virus, recreating at a safe distance outdoors is fine for many people. Consider reaching out to a Parkinson’s buddy who enjoys walking or running, and who you know has been abiding by their state and CDC regulations, and schedule a daily or weekly run/walk and talk with them. Wear your masks, keep six feet apart, and have fun.

 

#2 – Have a coffee date in a parking lot

Missing a friend from your support group you haven’t seen in over two months? Invite them to coffee at a nearby school parking lot. Bring your own cup of joe and a mask, park at a safe distance, and either grab a seat on your hoods or bring some chairs so you can chat and catch up.

#3 – Pack a picnic

Invite members of your favorite exercise class to a picnic at a large park. Mark off squares that are six feet apart in all directions and have people set up blankets or mats on each square. Eat, stretch, play a question game, etc.

 

#4 – Play music, sing, meditate, draw, make

Do you have some Parkinson’s friends who play instruments, love to sing, are avid meditators, or just love to make things? Gather in a wide-open outdoor space with your favorite “tools” and see what happens. Sometimes just being in the presence of others you care about, even if you’re not doing the same thing, even if you’re not talking, is all you need to feel connected. Sometimes, it’s simply the shared desire to connect and seeing other people show up for you that’s all you need to start feeling like yourself again.

Not everyone will feel safe getting out in these ways. And as we said before, your care teams should sign off on this as they know your specific situation better than anyone. But, if you do get the all-clear, these are four easy to do but very meaningful ways of connecting in real life, for now.

Parkinson's Disease, Uncategorized

The (Covid-19) World According to Garp

 

My memory bank brings me the odd word pair: “Under Toad.” There’s no reason that I can discern for Under Toad’s recent appearances.

Under Toad is the literary invention of John Irving in his 1978 tragi-comic novel “The World According To Garp.” I read the book 40 years ago. Loved it.

The title character’s son Walt mishears warnings about the undertow at the beach as a warning about an “Under Toad.” Father T.S. Garp employs Under Toad henceforth to refer to the omnipresent threat of disaster that he sees lurking beneath the surface of everyday life.

My friend Rich Harwood has been traveling the country promoting his latest book “Stepping Forward.” It is a compelling call to action for citizens to step up and rebuild their communities.

He describes people “slogging through” their days due to Covid-19 uncertainties and disruptions. I believe Rich’s “slogging through” is the Under Toad at work in our lives. Imagine the sensation of walking in wet cement.

I am privileged.

I write on the screened-in porch of our 2,700 sq. ft. cottage shaded by 100-foot pines and 50- foot oaks. I listen to the songs of the American Golden Finch, Blue Jay, Northern Cardinal, Chipping Sparrow, Pine Warbler and Tufted Titmouse. I watch the birds’ choreographed, flaps- down landings on our five bird feeders.

My wife and I live in Carlyle Place, a life plan community in Macon, GA. The 58-acre retirement complex has a common area of apartments and care units. Ours is one of 59 cottages that ring “The Big House.”

For all the protections Carlyle Place provides, we can’t escape the “omnipresent threat of disaster” from Covid-19.

It hasn’t breached the secured walls of our gated community. But we have a kind of hermetic seal around our lives.

Visitors are sharply limited. Distancing restrictions limit our ability to meet in groups larger than four. Masks are to be worn when we walk the bucolic grounds.

Parkinson’s sufferers like me are managing a second Under Toad. That’s Old Doc Parkinson’s penchant for throwing bean balls at us. Think lightning strikes of hypotensive lightheadedness or bladder overflow.

In the movie version of “The World According To Garp,” Robin Williams starred as Garp.

Williams died in 2017 with Parkinson’s.