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.

Parkinson's Disease, Research, Uncategorized

How my post won, but didn’t, a $2,500 prize

January 12 was a strenuous day. After helping facilitate Module 4 of PD SELF —the groundbreaking personal leadership program of the Parkinson’s Foundation, PF for short—I was wasted and ready for a Sam Adams Pumpkin beer…..or two.

Come 2:00 PM, when I finally sat with my Sam to check email,textito-2500-award what did my tired eyes spy but a message from PF.

Here’s an edited version of that eye-popping email: “I have good news for you —remember when you helped us by writing a post (for a contest)? It turns out PF won the most liked post of the year (yours) award, which means we get the sum of $2,500.”

I asked myself who is the “we” getting the $2,500? Posing that question publicly, however, would be very bad form.

I imagine the whispers at HQ.  “He wants what? To take money for himself that we would use for research to find a cure for PD? Come on man! Get real.”

Brain Lightning……….Write a tongue-in-cheek email to new PF leader John Lear implicitly asking the money question. Have it coming to Lear from two top aides.

Pure genius………. Worthy of my chosen nom-de-plume, “The Wily Old Editor.” So it was—a practical joker’s delight.

“Dear John:

“Remember that passionate and sometimes difficult to manage PAIR (Patient Advocate) in Tampa whom we told you about? 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 the 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.”

The  connoisseurs’ email was sent Jan. 12.

To date no response. Nada.

Swing-and-a-miss, it would seem.

Anyway, here’s the version of the $2,500 column that appeared in the late Tampa Tribune and on this blog in April 2016.


MY PARKINSON’S CRASH COURSE

I wasn’t ready for a crash course in neurology that day two years ago. I was enjoying semi-retirement, assuming my medical writing days were far behind me. But then the doctor said, “You have Parkinson’s disease.”

Ever since, I have been immersed in Parkinson’s 101: what it means to live with a chronic neurological disease.

This month is Parkinson’s Awareness Month. Accordingly, I think even more about the 5,000 people in the U.S. who will also hear those words this month.

What do I wish I had known when I was diagnosed?

  • It’s a snowflake disease.Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.
  • Some symptoms are invisible.Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.
  • A Parkinson’s specialist can help.Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. Those neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.
  • Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise (such as boxing, hot yoga, interval cycling} can ease symptoms and combat fatigue. And that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.
  • We can benefit from complementary care. In addition to medications, we can benefit from physical, speech and occupational therapy and the knowledge of nutritionists and psychotherapists. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery; it takes effort on your part to assemble that team.
  • All support groups not created equal. Support groups have different constituencies (young/elderly onset—newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.
  • There is a lack of localized information. Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended tai chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.
  • We can live well. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties. Find your passions. Mine are advocating for research, raising awareness and sharing validated information.

Also remember that you are not are not alone. There are 1 million of us nationwide. Groups such as the Parkinson’s Disease Foundation and the National Parkinson Foundation are available to support us. Contact them to find information and resources. Together, we cannot only live well with Parkinson’s, one day we can end it.

 

 

Must Read, Uncategorized

Humanizing Jesus

manger
Fellow Parkies and other Shuffling Editor readers:

I found this  gem of an essay particularly moving on Christmas Day. It underlines the deepening spirituality  that the PD journey often brings. It certainly has done that for me.  I hope you enjoy it as much as I did.

A very Merry Christmas,

Gil Thelen, The Shuffling Editor 

http://www.nytimes.com/2016/12/23/opinion/humanizing-jesus.html?emc=edit_th_20161224&nl=todaysheadlines&nlid=52114048&_r=0

By Peter Wehner

Early in my Christian pilgrimage, as a young man struggling to understand the implications of a story I had only a surface knowledge of, I stumbled onto a theological insight. For followers of Jesus, salvation was based not on his life so much as his death. Jesus could have been incarnated as a man and been crucified within days. That’s all that was needed for his death to serve as an atonement, but that’s not what happened. God clearly wanted to instruct us about how we should live in this life, too. He became not just the author of the human drama but an actor in it.

According to the Christian Scriptures, Jesus had a life story — born in a manger in Bethlehem, later moving to Nazareth, and dying in his 30s, just outside Jerusalem. The fact that we’re so familiar with the story has inured us to just how jarring and unexpected it was. God came to earth “not in a raging whirlwind nor in a devouring fire,” in the words of Philip Yancey, author of “The Jesus I Never Knew,” but in humility, without power or wealth, in a world marked by strife and terror.

Jesus spent his infancy in Egypt as a refugee, Mr. Yancey points out, and the circumstances of his birth raised the specter of scandal. His life, then, was a profoundly human one, involving work and rest, friendships and betrayals, delight and sorrow. This has deep implications for how Christians should understand and approach life.

For one thing, the Incarnation dignifies the everyday. There has been a temptation throughout Christian history to denigrate the things of this world, from material comforts to the human body, viewing them as lowly and tainted. But this concept is at odds with what Jesus’ life taught, which is that while worldly things can be corrupted, they can also be elevated and sanctified.

Consider that Jesus was incarnated in a human body. He was a child in need of care and protection. He was a carpenter, a craftsman who worked creatively with his hands. His first miracle was at the wedding in Cana, where he transformed water into wine. There was joy and purpose to be found in the commonplace. The Incarnation also bestowed worth on people considered contemptible, unessential and valueless — “the least of these,” as Jesus put it.

Indeed, one of the indictments of him by the religious authorities of his day was that he was a “friend of sinners.” Jesus’ love was “undiscriminating and inclusive,” according to the writer Garry Wills, “not gradated and exclusive.” He spent most of his time with those who were forsaken, poor, powerless and considered unclean. In a patriarchal society, Jesus gave women an honored place. He not only associated with them, but they were among his disciples, the object of his public praise, the first people he spoke to after his resurrection.

The most intense confrontations Jesus had weren’t with those with loose morals but with religious leaders, the upholders of the “holiness code” whom he called out for their arrogance, hypocrisy and lack of mercy. In the Temple courts, Jesus told the chief priests, “I tell you the truth, the tax collectors and the prostitutes are entering the kingdom of God ahead of you.” In the words of Professor Wills, “He walks through social barriers and taboos as if they were cobwebs.”

The Incarnation also underscores the importance of relationships, and particularly friendships. The Rev. James Forsyth, the winsome and gifted pastor of McLean Presbyterian Church in Virginia, which my family attends, says friendship is not a luxury; it is at the very essence of who we are. The three persons of the Christian Godhead — Father, Son and Holy Spirit — speak to the centrality of community. When we are in a friendship, according to Mr. Forsyth, we are “participating in something divine.” That is, fellowship and friendship were present in the Trinity and are therefore of immense worth to us. I’ve experienced that in my own life, when friends served as God’s proxies, dispensing grace I could not receive in solitude.

In some rather remarkable verses in the New Testament, Jesus told his disciples: “I no longer call you servants, because a servant does not know his master’s business. Instead, I have called you friends, for everything that I learned from my Father I have made known to you.” God’s emissary on earth had a core group of intimate friends — Peter, James, John and perhaps his most faithful friend, Mary of Magdala. These are people Jesus confided in, relied on, celebrated with and mourned with. He not only praised friendship; he modeled it. It’s difficult for us now to appreciate the shock it was considered then — that the “image of the invisible God,” in the words of St. Paul, not only didn’t compromise his divinity by taking on human flesh, he actually found succor in human relationships.

The Incarnation is also evidence that God is not an impersonal, indifferent deity. Instead of maintaining a divine distance from life’s experiences, including its grief and hardship, Jesus shared in them. This can be seen in the moving events surrounding the death of Lazarus, the brother of Martha and Mary of Bethany. Here is the account from the Gospel of John:

When Mary reached the place where Jesus was and saw him, she fell at his feet and said, “Lord, if you had been here, my brother would not have died.” When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. “Where have you laid him?” he asked. “Come and see, Lord,” they replied. Jesus wept. Then the Jews said, “See how he loved him!”

In the account in John, Jesus raises Lazarus from the dead. The point here, though, is that Jesus not only had sympathy with those who were suffering but experienced grief to the point of tears. Contrary to the “health and wealth” gospel, which argues that God will deliver prosperity to those who have faith in him, Christianity does not promise an end to suffering even among the most faithful, at least not yet. But it does promise that God can bestow mercy amid our struggles, that in time he can repair the broken areas of our lives.

Jesus was not a systematic theologian; that work was left largely to St. Paul and others. While he certainly argued for the importance of righteousness, Jesus was far less concerned about rules than he was about relationships and reconciliation — with one another and with God. For some of us, Christmas is a reminder that while moral rules can be issued on stone tablets, grace and redemption are finally and fully found in a story of love, when the divine became human. I didn’t enter Jesus’ world; he entered mine.

Peter Wehner, a senior fellow at the Ethics and Public Policy Center, served in the last three Republican administrations and is a contributing opinion writer.

 

Uncategorized

The Night GPS-Navi Smacked Me Down

soul-in-a-pit

“Wake up, Babe. The wrecker just lifted your SUV out of the pit,” said Struby, to her husband, customarily The Wily Old Editor. It was a little after midnight.

So ended the GPS-Navigation system’s assault on The-now-not-so-Wily Old Editor and his ride, a beautiful red Mazda CX-9, “Soul Red.”

I had reached the outskirts of Ocala about 5:30 PM, driving home from Jacksonville on Central Florida back roads. I had not yet deployed the Navigation system (Navi for short). I turned it on for guidance to I-75.

Trouble ahead.

Navi sent me in circles, twice leading me through The Villages retirement community. For over an hour its voice demanded travel on US-301, not nearby I-75.

I had had enough. I veered away from the 301 “force field” and followed the blessed “To I-75” sign, turning west on Sumter County 470.

Navi appeared to give ground. It allowed my deviation from its preferred route, signaling I-75 was scant miles away.

Still More Trouble Ahead

Next was the “Road Closed” sign and haphazardly placed orange barrels. The barrels did NOT close my lane, just directed me into an oncoming traffic lane.

I slowed to 10 MPH. Next a dramatic drop on the right and a loud, grinding stop. Soul Red and I were stuck. The instrument panel indicated we were operational but listing right, 37 degrees to horizontal.

Soul Red’s left wheels remained on the road pavement. Her right wheels were off the pavement, dangling 2 feet over the roadbed of a lane under construction. Time 7:00.

Lovely Soul Red was beached like a steel whale.

The skilled tow truck operator arrived about 10:30, some 2 hours after my wife dashed up I-75 in case my car was no longer drivable. He surgically extricated Soul Red 90 minutes later, using makeshift wedges under the fallen right wheels.

Explanatory Notes

*A BMW toppled into the pit, just moments after I had.

* The night manager at the nearby Texaco station said at least one car a night had taken the plunge.

*A Sumter County Deputy Sheriff agreed with the tow man that “this was the worst marked detour” ever. DOT “had a lot to answer for,” the two opined.

Navi’s Aversion to Interstate Highways
An instrument setting that permits “freeway” (as in California?) travel was not “on.”

Was the incident Navi’s revenge on The Wily Old Editor for refusing to go in more circles on US 301? 

Postscript

Soul Red’s underside and dignity were scratched. She was otherwise sound and quite fit to drive.

Uncategorized

Stripping The Clutter

candy

This is an unusual offering from me, a universal truth for a blog focused on the peculiar, paradoxical and mind-bending Parkie experience.  

It does, however, speak to the stirrings in Parkie souls as we face the inevitable end of our journeys. We seek to strip away all pretensions that may clutter our true course. 

My Parkie watchwords are Love, Laugh, Hope. They are captured magnificently here in “The Valuable Time of Maturity,” by Mario de Andrade, a Brazilian poet, novelist, musicologist, art historian and photographer.

A fellow Parkie brought De Andrade’s lyrical piece to me.

Enjoy. 

“I counted my years and discovered that I have less time to live going forward than I have lived until now.

I have more past than future.

I feel like the boy who received a bowl of candy. 

At first he just gobbled up the sweets, but when he realized there were only a few left, he began to taste them deeply.

“I do not have time to deal with mediocrity.

I do not want to be in meetings where inflamed egos parade. I am bothered by the envious, who seek to discredit the ones they admire, to usurp their places, coveting their seats, talents, achievements and luck.

“I do not have time for endless conversations, futile to discuss the lives of others who are not part of mine.

I do not have time to manage the sensitivities of people who, despite their chronological age, are immature. I cannot stand those struggling for power.

“People do not discuss content, only the labels.

My time has become too scarce to discuss labels,

I want the essence; my soul is in a hurry.

“With not many sweets left in the bowl I want to live close to humane, very humane people, who laugh at their own stumbles, and keep away from those turned smug and overconfident by their triumphs; away from those filled with self-importance; close to those who do not run away from their responsibilities, who defend human dignity and who only want to walk on the side of truth and honesty.

“The essential is what makes life worthwhile. I want to surround myself with people who know how to touch the hearts of people; people who the hard knocks of life taught to grow with softness in their soul.

“Yes …. I am in a hurry … to live with the intensity that only maturity can bring. I intend not to waste any part of the goodies I have left. I am sure they will taste better than most of the ones I’ve already eaten.

My goal is to arrive at the end satisfied and in peace with my loved ones and my conscience.

I hope that your goal is the same, because either way you will get there too.”

Uncategorized

FAREWELL TO A PIONEERING BLACK NEWSPAPER EDITOR

To the end, Al Johnson remained true to form. Always “Just Al being Al.”

Al was a Black newspaper editor living modestly but proudly in a mostly White man’s newspaper world.

Physically imposing, fashionably dressed, a bit of an innocent flirt, and always that big grin–he came across as an editor fully at ease with himself. “Just Al being Al.”

He seemed to glide through life.

He cared for his staff, was emotionally available, was deeply loyal to the institution he served, and was committed to delivering even the most complicated story.

Albert Lee Johnson had a big heart – a heart that betrayed him, that delivered a heart attack while Al was in his 40s, that gave out while he was in his 60s. That big heart needed replacement. The doctors told him that finding a new heart would be difficult.

They said his only real chance for the new heart was to hang out and wait at Duke Hospital. So he did, for a full year. He moved to Durham, haunted the halls, made friends easily and finally got that new heart.

Life’s unfairness visited a second time. The new heart began to fail. Al’s kidneys buckled under the stress. Then came kidney dialysis, and finally cancer.

This proud man decided he could not beat all three. That would  impose even more stress on his wife Barbara and his close family. He quietly ceased all treatments and declined to see visitors.

The occasion of his memorial service November 5 in Greensboro brought a dozen editors from across the region to pay final tribute.

Being Al meant wearing the clothes of “first black (fill in the blank)” with dignity and modesty. He did that for Knight-Ridder newspapers, the American City Business Journals and the National Association of Black Journalists.

Others might be better word editors, more skilled managers, and more assertive agenda setters. But Al was a total package, always on station to deliver results. Al being Al.

I knew Al when we were both editors at The Charlotte Observer. Cool Al who smoked Kool cigarettes, perhaps once too often.

Al was my teammate as we tried with some success to make the local news team a caring bunch, a cadre of reporters and editors who looked forward to coming to work each day to produce a newspaper that customers looked forward to reading. Our aim was to build the Observer into an innovative and formidable force for good in the central Carolinas.

Charlotte in the ’70s and ’80s was a rather ordinary community with a dynamic and growing newspaper. Today Charlotte is a dynamic and energetic Metropolis with a quite ordinary, and in fact declining, newspaper. It’s cheap irony but true.

That dynamic newspaper of 30 years ago sent it’s best talent around the country to produce journalism of the highest order.

We who were there will never forget the fantastic ride we had with people like Al Johnson.

May God rest his beautiful soul.

al-l-johnson-21-recovered

Parkinson's Disease, Uncategorized

NOH DRAMA

noh-drama

This post is not about Noh, the traditional form of Japanese theater, but about nOH, a pesky PD parasite that has paid me an unwelcome visit.

Neurological Orthostatic Hypotension disrupts the body’s thermostat, alters the plumbing, unsteadies the legs and saps energy.

It’s like that pilot fish riding along with the shark. A very unwelcome hitchhiker.

It has me so warm I am shirtless on the lanai writing this post. It has virtually killed my Rock Steady boxing sessions. It plays havoc with carbidopa-levodopa, producing paradoxical sleepiness. My mind and spirits, fortunately, are intact.

But it’s taxing my patience.

Backing up a few bars, this critter disrupts the autonomic nervous system. Goodbye normal kidney function, temperature regulation and blood circulation. Hello edema in the ankles and numerous visits to the loo for pees.

My very astute internist didn’t know what I was talking about when I said, “I’ve got nOH.” My equally astute MDS put me on Rx hold–instead of lobbing something nasty at this creature, STAT. Try compression stocking and diet alterations, was the message. We’ll see how those work.

The reputable PD literature says nOH is common in PD and Multiple System Atrophy (please, not that.) It notes that nOH often signals entry into mid-stage PD. I don’t like that one bit, either.

Check out the Parkinson Foundation’s take on nOH: http://www.pdf.org/pdf/fs_orthostatic_hypotension_15.pdf

Recall my earlier post (click here) about burning up on then airplane ride from Houston to Portland for the world Parkinson Congress. That was the tip off to what was brewing inside me.

I will keep writing as I pin this guy down and figure a course of action. Yep. Self-Efficacy to the front. My doctors and I are certainly not interested in another medication, but it may be the wisest way we have to go.

Uncategorized

Sully’s Leadership Lesson

sullys-leadership-lesson

Few people have the opportunity to demonstrate their leadership in such a dramatic way or to such a wide audience as Chesley Sullenberger, “Sully”.

Of course, not anyone happens to be piloting a US Airways jet that loses its two engines after hitting a flock of birds. And seven years later shoots to international recognition by way of an extraordinary movie directed by Clint Eastwood and starring Tom Hanks as Sully.

My not-so-retired minister, Jim Harnish, refers to Sullenberger’s crisis management performance as “level 5 leadership,” meaning abdication of self in total service of others, in his recent blog post concerning the movie [read it by clicking on this link]. This type of leadership is the ultimate goal for seekers like me. 

In case you were wondering, I was a total mess watching SullyI cried/laughed/cried again from opening credits to end credits. I was so PD “emotionally incontinent” that I bolted from my fifth-row seat to last row. My intent was to not disturb movie goers who did have their emotional act together. Struby, my wife, took my flight from her side with her usual grace and equanimity.

To circle this back to PD SELF, let me recall Albert Bandera’s motto: “May the Self-Efficacy Force continue to be with you” this day and those to come.

But wait, before you sign off, an ad in service of the PD community:

chair-yoga

Contact Susan Rose at (812) 229-0134, or at susrose@aol.com.

Palliative Care, Parkinson's Disease, Uncategorized

Meet Laura

whos-afraid-of-palliative-care

Who’s afraid of palliative care? My editor, of course. 

Mention palliative care to a Parkie, and most will recoil in real or imagined terror. The first mental association is to hospice and/or end-of-life care.

Here’s what my editor Laura (a tiny woman who in a flaky voice has vowed to kick Parkinson in the face) said about it:

“The word palliative makes me shudder…

“It sort of spells defeat. To me it says: ‘We have given up hope of curing you, so we just want to make you comfortable before your impending demise.’

“In fewer words: ‘Make yourself comfy and die.’

And she adds: “Yet, if I had a nasty, painful, end in sight, I guess I’d want to be palliated to the max”.

The fact is palliative care is undergoing a dramatic and sweeping overhaul. Rather than end-of-life, the focus is now on creating –and following through on– health care plans. Those start at diagnosis and proceed through a number of steps that include patient self-management, mid-stage plan alterations, family support and, finally, death with dignity.

Kirk Hall’s astute reframing of palliative care is well worth reading. This link takes you to his presentation to the World Parkinson Congress.  

Now more about Laura Crawford, my new blog partner, whose commitment to the PD SELF program is astonishing. Laura has all the graphic skills I do not. She also has a fertile and inventive mind about the presentation of ideas. Her illustrations have graced several of recent Shuffling Editor posts.  

I asked Laura to write about herself and her husband, Dan Crawford, a retired telco senior exec. The Crawfords live in New Port Richey, FL.

Now for Laura on Laura:

editor-in-the-sky

Gil Thelen has called me his editor. Those who know him realize that he is pulling my leg. 

But it opens up an opportunity to ask myself, “who am I?”

Fact and public confession is that I have always been a pushover.

Like in a line by T.S. Eliot, I have asked myself at every step: “Do I dare eat a peach? Do I dare disturb the Universe?”

To the concern of my parents and my teachers, since I learned to read my face was always behind a book (I was not a popular kid).

To keep safe behind the pages, I studied literature.

“I’m now licensed to read,” I marveled when I graduated, and went on to spend two decades in PR and media relations. In 2009 I started a communications agency in Mexico, from where I hail (my business partner was a designer, I wrote content). 

Then puff! Out of life’s box of surprises, I was diagnosed with Parkinson’s. 

After exclaiming: “Aha! That’s why I fell asleep in my client’s office!,” I thought I had arrived at my life journey’s last stop. 

But it has opened the best part so far. Parkinson’s forced me out of my old constrictions and into a physically and mentally challenging territory that I am just exploring. It’s sights can be terrifying and yet liberating. 

In early 2014 I left the office in my business partner’s hands, and my very wonderful husband, Dan, brought me to Florida to be treated at the UF Center for Movement Disorders and Neurorestoration.

There, Dr. Michael Okun warned me as he prescribed medication (and I’m very loosely paraphrasing this awesome neurologist):

“Watch out, for you might go gambling, stomp out in a sexual rampage or destroy your finances on a shopping spree.”

But I never thought my obsession would zero in on markers and sketch pads. To my surprise, my brain has turned to graphics. Instead of books I now buy art supplies; words were my life, but now I try to explain everything in form and color. 

So here I am, about to zap Gil with my blazing color pencils if he forgets a comma, ‘cause I’m learning to be assertive (and he’ll zap me back, because he is assertivier).

Anyway, I have embraced PD SELF because the program is great not only against Parkinson’s, but –more importantly— I trust it will help me get rid of that fear of living that shrivels our capacity to enjoy whatever life we have ahead.

PD scares me. But I want to kick him in the face and say, at the end, that my trek was good and that, even if I do it in a shaky/twirly gait, I walked it as myself in full.

A final word about the Congress: gathered were several thousand Parkies using canes, walkers, wheel chairs, walking poles, companion dogs, leg braces, to name but a few PD aids.

What those brave people have in common is one thing.

Hope.