Parkinson’s Disease Stories and Wisdom
“THE ONLY DAY WE HAVE”
A DOCUMENTARY ABOUT YOUNG-ONSET PARKINSON’S DISEASE
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An Anniversary Letter to My Older Daughters
Today is my anniversary—my eighth with Parkinson’s.
Go-To People
As progressive illnesses progress...they can spur us toward becoming more human.
The Ocean
My close colleague and friend, Claudia, who happens also to be a neurologist, reassures me as we Facetime one another.
Gratitude
A remarkably kind, compassionate, and accessible oncologist, Dr. Brian Shimkus confirms what I already know.
Morning Has Broken: Remembering Chris Sanders
The cliché turns out to be true. We are here for such a short period of time.
Empowered By Today
Yesterday is history with no promise of tomorrow.
Remembering
Things tend to stick upstairs early on in life.
Pop and His Spizzerinctum
"Spizzerinctum" has too long now languished from the vocabulary of people with Parkinson’s Disease.
On the Good Days and the Ones Not-So-Good
In my younger years, I was well all the time.
Concord
Emerson helps me see and re-see the importance of cultivating and maintaining trust.
Hoping
To counter this apathy, I had to be purposeful and intentional.
Making Music
“One of my regrets in life is that I never learned to play a musical instrument.”
Shrinking
They keep each other honest about their respective self-deceptions and gently push each other to confront their fears.
My Recent Conversation with Mel Dizon of the Davis Phinney Foundation
Getting to know Mel Dizon and others at the Davis Phinney Foundation is a highlight of my journey with Parkinson's.
Switching Tables
Our friendship was formed and nurtured through weekly meetings Jo’s coffee.
A Shaky Start
I remember that day thinking, ‘What the hey?!!!’
What I Don’t Miss
I want to share with you something else that I can thank Parkinson’s for.
Connecting the Dots
I wanted to be Lewis Thomas MD when I was in medical school.
An Update on Our Documentary: The Only Day We Have
Here is a clip of new footage with esteemed artist and muralist Federico Archuleta, or El Federico, of Austin, Texas.
Unfinished
The canvas may not be blank, but it nevertheless invites us to work on it...
Sturdier Joy
This is certainly not the life I thought I’d live.
Medial Epicondylitis and Other Joys
I went outside yesterday and picked up half a cord of cut firewood the tree trimmers left for me.
On Writing with Parkinson’s
I don’t just write to put words on paper.
Deciding to Trust
Her large, compassionate eyes blink slowly and in earnest just above her surgical mask.
The Long Hallways of Illness
As we sit together in the lobby, watching other cancer patients and their people come and go, I have an even deeper sense of the weight of illness.
Breathing In and Out
Parkinson’s Disease (PD) sometimes sends us answers we don’t expect...
Chronic Illness: Candor, Conversation, and Coping
It has been nearly 15 years and my wishes have not changed one iota.
Men and Parkinson’s
Recently, I had to pleasure of hosting a conversation for the Davis Phinney Foundation on the topic of Men and Parkinson's.
An Update on “The Only Day We Have” — A Documentary on Young-Onset Parkinson’s
For several months, Vanessa and I have worked on a new film that features stories of several people living with young-onset Parkinson's or YOPD.
Stepping Outside the Cave
It’s early morning, and my friend Michael and I sit at a corner table inside Jo’s Coffee...
Playing Offense
I have come to see that, with Parkinson’s, most of the time we play defense
A Conversation with Davis Phinney
In this conversation with Davis Phinney, we discuss the challenges and opportunities that come with Parkinson's disease.
A Conversation with Veronique Enos Kaefer and Liz Diemer of The Michael J. Fox Foundation
A conversation about better treatments, cures, and community.
Commencement
It’s a Saturday morning, the day of Commencement, and I stand before the crowd gathered to honor E4Texas graduates.
Shield Walls
Our goal is to survive the next battle and fall back if needed to fight another day.
Parkinson’s and Palliative Care
Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering.
A Future with Parkinson’s (from “The Only Day We Have”)
Keri Shaw and I talk about the future in this scene from "The Only Day We Have."
A Conversation with Rodolfo Savica, M.D., Ph.D.
We discuss his views on young-onset Parkinson's disease and how it differs from later-onset Parkinson's.
We All Need Support (A scene from “The Only Day We Have”)
Brian Grant and I reflect on the need we have to give and receive support from one another.
New Math
My kids grew up in the age of “new math.”
A Bucket and a Pot of Gold
This is what happens when those with PD get together.
Introducing “The Only Day We Have”
In this video, filmmaker Vanessa Reiser and I talk about our forthcoming documentary...
Slow Down. Rise Up. Hold On. Let Go.
“It’s harder to get up than I realized.”
“The Only Day We Have” — A Documentary in Progress
I’m excited to tell you about my new project, a documentary focusing on young-onset Parkinson’s.
On Jumping to the Skies
Harry sits across the round table in my campus office just after lunchtime.
A Conversation with Richelle Flanagan: Women and Parkinson’s
There's a lot more we can do...
My Conversation with Nina Mosier, M.D.
Recently, I had the pleasure of speaking with Nina Mosier, M.D., Executive Director of Power for Parkinson's (PfP).
Technology and Parkinson’s — Neil C. Hughes Podcast
had the pleasure of speaking with Neil C. Hughes about the role of technology in helping us manage Parkinson's.
A Conversation with Dan Stultz, M.D.
"It is what it is. We live one day at a time."
Living with this Illness Requires Partnerships
Managing a formidable illness such as Parkinson’s requires a concerted, coordinated effort.
The Button
Before Parkinson’s, my fingers and hands worked better than they do now.
Feeling Welcome
Respect also happens because everyone is a teacher, a knowledge sharer, and a reference for others.
Expanding the Dot
At 2:41 on a Friday afternoon in 2018, I was strolling through my office, perfectly healthy, and had a stroke.
Falling Short and Punching Back
Falling short is a good term to describe how PD works.
More Mayo, Please!
We stand on hallowed ground and watch sacred acts unfold.
Remembering Our Strengths
Remembering our strengths and opportunities helps me feel less anxious about the future.
Five Years
The day before, Tracey minded me in a brief text that, “Tomorrow is your anniversary.”
Darkness and Light
We get in the car and start the one-mile trip home as the new day’s sun reveals a now clear sky.
Deep Brain Stimulation: A New Path
Then the neurosurgeon started counting down from 15 and I heard a loud humming sound...
A Conversation with Soania Mathur, M.D.
Dr. Soania Mathur is a family physician living outside of Toronto, Ontario, Canada who was diagnosed with Young-Onset Parkinson's Disease at age 28.
A Personal Journey Through Deep Brain Stimulation (DBS) Surgery: Part 2
On July 22, 2021, after so much planning...the day of my scheduled DBS surgery finally arrived.
A Personal Journey Through Deep Brain Stimulation (DBS) Surgery (Part 1)
There was no way I was going to miss this opportunity to potentially give myself a new life.
Finding your Personal Best
Parkie is an ill-mannered scoundrel. He comes uninvited to your party...
Riding the Wave
He floats on his back in the green glassy lake, his feet sticking out of the water and his toes gripping the rubber tread on the slick fiberglass board.
Epidemics and Vaccinations
As we work ourselves into this century, we need to figure out how to increase community confidence in vaccinations.
A Conversation with Eric Eyre, Recipient of the Pulitzer Prize
I sat down with Eric Eyre recently to chat about life with PD...
Sandcastles
Our lives are like sandcastles...
More Keys for Living Well with Parkinson’s
Here, I want to share a few more keys that give me access to spaces I want to inhabit...
Five Keys for Living Well with Parkinson’s
I started thinking about keys as they relate to a life with Parkinson’s...
A Conversation with Lisa Keefauver, MSW — Grief and Empathy Activist!
"Our work in grief is to rewrite and live into a new story we are co-creating."
Keeping Score with the Animal: 12-1-1
I have been thinking about my “record” against Parkinson’s, or what I call, “The Animal.”
A Conversation with Brian Grant
"I'll never shy away from putting myself on the line if it's going to help people."
A Conversation with Melani Dizon (Davis Phinney Foundation)
"Surround yourself with positive people."
A Letter to My Newly Diagnosed Self (Guest Post for the Davis Phinney Foundation)
Life changed profoundly at that moment in a neurologist’s office...
A Spiritual Thing (Guest Post For The Michael J. Fox Foundation)
Parkinson’s has helped me get better at relinquishing what I cannot control.
Parenting and Courage
Parkinson’s has brought a lot of beauty into my life.
The Shoes
I want to tell you about the shoes.
After Stethoscopes: Living with Parkinson’s Disease
This animal will turn you into a quiet, isolated, non-communicative person if you let it.
What I Have Learned from Michael J. Fox
I decided I would make a list of the “good stuff” that Parkinson’s has put in my path...
A Conversation with Jimmy Choi
I had the pleasure recently of chatting with Jimmy Choi.
Pluck The Day
One thing having Parkinson's can teach you is that life is unpredictable and fleeting, two truths recently reinforced for me.
Radical Acceptance
It takes a lot of energy to fight and resist what is true.
A Conversation with Michael S. Okun, M.D.
I had the privilege of speaking with Dr. Michael Okun, one of the foremost experts in the world on Parkinson's disease.
A Conversation with Larry Gifford
Larry Gifford reflects on living a good life with Parkinson's.
Miraculous Things
I can control a lot in my world, in my life, but not everything.
Book Launch: Counseling Persons with Parkinson’s Disease
I had the privilege of speaking with Jennifer Luna, my colleague at The University of Texas at Austin, about my new book...
Bittersweet Lane
Illness and wellness can in fact go together.
A Conversation with Bret Parker: Living Well with Parkinson’s Disease
Bret Parker continues to live well and inspire with Young-Onset Parkinson's disease.
Feeling At Home
For years, I thought I would someday become an old-fashioned barber.
My Last Elk
It is becoming routine now that I wake at four in the morning.
Typos and 90-Degree Angles
As Tolstoy put it, If you look for perfection, you’ll never be content.
PD Outliers
Psychologists find that people are more successful in sustaining a habit when they establish a reward system to support it.
My Interview with The Davis Phinney Foundation
My recent interview with Melani Dizon, Director of Education and Research for the Davis Phinney Foundation for Parkinson's.
Five Questions for Nina Mosier, M.D.
When we started Power for Parkinson’s we were told by numerous people in the field that our model wouldn’t work...
Staring into the Fire
It’s just before 4:00 pm on a cold, wintry day in Austin...
On Memories and Realities
Some of the more meaningful and rewarding experiences in life come with risk...
A Letter to PD Wise Friends
For me, living with both the challenges and expectations is easier and more empowering when it happens in a community...
Spiritual Questions
He has asked me to talk about my spiritual path...
On Being Happy
Many people assume that those of us living with a chronic illness must not be happy.
An Awful Lot to Live For
When I meet someone with Parkinson’s, I immediately feel a kinship.
Making It
I have thought a lot about Cooper and his father in the weeks since that Saturday morning encounter.
On Elections and Humanity
It is Election Day, and I am anxious about what the day might bring. Mostly, however, I feel sad.
A Meditation on Parkinson’s
I look out the window and see the uneven row of fuchsia roses blowing in the breeze.
A Parkinson’s Anniversary Letter to My Daughters
It’s hard to believe it’s been four years since my Parkinson’s diagnosis...
Running and Parkinson’s
Running is cheap and easy. Just put your shoes on and go.
A Story of Juvenile Parkinson’s Disease and Hope
Though living in this way was difficult, I didn't let Parkinson’s stop me from pursuing my dreams.
Ungated
Loneliness means feeling like an outsider, as though one does not belong...
Five Questions for Aaron Charles de la Garza, J.D.
Aaron Charles de la Garza is an Austin, Texas-based attorney who has practiced employment law for over twenty years.
A Hopeful Future
Parkinson’s disease has prompted my re-examination of hope, not because I have lost a measure of it but because I want to make damn certain I understand it.
Justice Ginsburg’s Legacy: A Blessing for All of Us
Her life’s work involved a tireless effort to articulate why discrimination and inequity was unacceptable and to act for lasting change.
On Friendships, Old and New
These ties of friendship often begin in childhood, but they can form at any age.
Five Questions for Ray Dorsey, M.D.
I am surprised and upset by how many people with the disease have had exposure to pesticides or industrial chemicals tied to the disease.
Aesop, Moses, and Living with Parkinson’s
Living with illness can become a craft of sorts, meaning we can get better at it the more practice we have. We learn tricks of the trade that help improve us as craftspeople.
Five Questions for Michael S. Okun, M.D.
Persons with Parkinson’s disease have shown me that it is possible to have a meaningful life and a happy life despite a chronic disease.
One Thing
Holding up one finger, Curly says, “This. One thing. Just one thing. You stick to that and the rest don’t mean sh#%.”
Five Questions for Soania Mathur, M.D.
I think that what has surprised me most about living with PD is the strength of the human spirit, the ability to continue to thrive despite the challenges this disease presents.
My Favorite Day
When do I get back to that life? When everything was so normal.
Telling My Parents I Have Parkinson’s Disease
How do you tell the people you love most that you have a progressive neurologic disease?
I’m Not Drunk
“And then she told me the truth. She said other moms think it’s because you’re drinking.”
Five Questions for Bastiaan Bloem, M.D., Ph.D.
Progress in this present time has never been faster, we are rapidly gaining new insights into what is happening in the brain...
Stepping Up to the Plate
Ken and I are teammates on our sixth grade baseball team and he is awful at baseball.
Empowered By Parkinson’s Documentary: A Panel Q & A
A panel of six people involved with the 2020 documentary film Empowered By Parkinson's discuss the film and life with Parkinson's disease.
The Cuff and I
Hungry for touch during our pandemic, I am intoxicated by a newly purchased digital blood pressure cuff.
A Letter to My Daughter on Resilience
People have the ability to build something called resilience, to bounce back from a difficult experience or crisis and to be as strong, or stronger.
Five Questions for Larry Gifford
You are loved. The sooner you begin to share the diagnosis, the more people will be able to support you.
We Can Heal Before Being Cured
You mentioned that you are struggling with how best to cope with your illness...
A Teacher, Some Learners, and Some Lessons
In his fifteenth year as an instructor, he leads his class one last time.
On Barking Dogs, Vanity, and Parkinson’s
I’ve discovered that those of us who live with Parkinson’s are not all that different from anyone else. With time, all of us come face-to-face with our imperfections.
Seasons of My Young Onset Parkinson’s
As we pull up to the curb and park on a hot summer day in 2003, it catches my eye before anything else.
A Time to Talk: Parkinson’s and Friendship
“A friend is person with whom I may be sincere. Before [whom] I may think aloud.”
Suggestions for People Newly Diagnosed with Parkinson’s Disease
Stan Wedel speaks about his Parkinson's diagnosis and helpful things he's learned to do to manage it and live well.
FIVE QUESTIONS FOR ERIC EYRE
Boxing seemed counterintuitive. You’re going to hit people with a neurological disease upside the head? Wasn’t that the cause of Muhammad Ali’s Parkinson’s? I decided to give it a shot.
Why I Prefer Illness to Disease
When we focus on disease, we tend to look at a person objectively, at a distance, and primarily in terms of the physical body and its dysfunction.
Let Tomorrow Come Tomorrow
It’s early in 2017, a few months after my Parkinson’s diagnosis, and I keep trying to learn my way out of the illness. I’ve never had difficulty with living in my head.
FIVE QUESTIONS FOR WILLIAM ONDO, M.D.
There are few medical conditions that have as many investigational therapeutic options as Parkinson's disease.
A New Normal? On Faces, Masks, and Zoom
Feeling Zoomed-out on many days, I have wondered if we could all use a collective Zoomectomy!
On Illness, Drive, Dignity, and Dreams
Still Got It declares the large orange font placed off to the side of his left shoulder. A handsome and fit older man, he’s just pulled a full bag of groceries from the back of his SUV,
On Tires and Tests: Doing What You Can Do
The four of us have just left Frankie’s house and gotten on MoPac Expressway when we hear it: thump, thump, thump, thump, thump, thump, thump…
A Letter to My Daughter on Determination
I often think back to that spring day in 2017, when you were nine and I had not yet told you about my having Parkinson’s disease; hardly anyone knew.
Five Questions for Rhonda Foulds
What has surprised me most about living with PD is the large amount of activities I am still capable of doing.
Life by the Hour: Thoughts on Viral Time
We’re measuring life in hours these days, and sometimes in smaller increments.
Living Less Urgently with Parkinson’s Disease
Lately, I feel the need to make what’s left of my life less urgent.
Seeing Adversity from the Back of a Sanctuary
Sitting at the back of the sanctuary, as I typically do, I think about how I got here.
On Pandemics and Loneliness
We knew it would happen but somehow temporarily reasoned it away.
Having Parkinson’s is Political
This is a timely conversation for people to have, as opposed to allowing their discomfort to keep them silent.
My Parkinson’s Landscape
Parkinson’s is not always the only challenge.
On ‘Embracing the Suck’ with Parkinson’s Disease
Brené’s genius is that she recognizes that most of us live with pervasive shame, which ultimately quells our courage and prevents the kind of vulnerability that offers more joy.
Sex and Chronic Illness: Letting Worlds Collide
One thing that never has to change is our dedication to our total selves...
Parkinson’s at Work: On Reslience and Purpose
Secrets maintain enormous power over those who hold them.
Going Public with Your Parkinson’s Diagnosis
Few decisions feel more personal or crucial than deciding whether to disclose a serious medical condition.
Buck’s Adventures in Parkinson’s: The Nest “Smart” Thermostat
How smart do you have to be to know that someone is shaking right in front of your sensor?
On the Clock: A Parkinson’s Perspective
Having Parkinson’s tempts you to become a timekeeper if not a clock-watcher.
The Two Brothers of Parkinson’s
Recently I’ve come to know the two brothers of Parkinson’s, although I can’t say that I have been pleased to make their acquaintance.
Dear Ozzy, Keep Dreaming!
Dear Ozzy, It’s 1981 and I’m in the 8th grade. I spend a lot of time in my basement listening to your new record...
We Have Our Sh%t…and Each Other
We need to remind ourselves that we’re all in this life together...
The Iliad and the Albatross: On Foolish Optimism, Humility, and Heating Pads
Some of us who may seem, on the surface, to have it all figured out don’t.
A Decade of Living with Young Onset Parkinson’s
"I believe in going until I can't.... Parkinson's is viewed as a disease of diminishment, but i'm not sure it has to be."
Two Questions for Those Living with Parkinson’s (and Anyone Else)
Life changes with a chronic illness, but a life with Parkinson’s is still a life.
Lenses of Strength: On Truly Seeing Persons with Disabilities
When does one assume the status of disabled? I have thought about this question since my Parkinson’s diagnosis over three years ago.
Parkinson’s, Faces, and Sharing Our Humanity
The mask Parkinson’s forces us to wear is a cruel one. When we feel intensely and desperately want to share our emotions, we might be incapable.
“How Did You Know You Have Parkinson’s?”
Ultimately, finding out I have Parkinson’s required adhering to my belief that knowing the truth is better than running from it.
Getting to Grateful with Parkinson’s
I think a lot about gratitude these days.
Chronic Illness and Sojourning with Loss
Life endures amid our losses and illness.
Spelling Matters: Coping with a Recent Parkinson’s Diagnosis
PD arrives with its own set of hard choices and challenges—and its own set of nuanced and nurturing rewards.
Choosing the Right Doctor
In all of our providers, we should look for and expect to have a relationship marked by at least these three essential qualities: collaboration, communication, and compassion.
Telling Your Parkinson’s Story
In this video, Jimmy Choi reflects on the importance of creating your own story with Parkinson's disease and of sharing it with others.
On A More Authentic Love: How Parkinson’s is Changing Me
It seems safe to say that I will not realize my dream to pitch for the Houston Astros.
Parkinson’s, Unfinished Spaces, and Spiritual Things
As with any chronic illness, Parkinson’s makes us journeyers. Against our will, it grabs us, disorients us, and places us on a path of discovery.
Five Questions for Bret Parker
I would want my newly-diagnosed self to know that I’m not in this alone.
Brooklyn, Central Park, and the Bird: Three Years with Parkinson’s
When I return to New York in a couple of weeks to run my own marathon, I expect to form new and less gap-filled memories.
Chronic Illness and the Power of Acceptance
“The ache for home lives in all of us. The safe place where we can go as we are and not be questioned.” --Maya Angelou
The Man at the Lake
I see him just after sunrise most Sunday mornings, when I run at the lake.
Talking Myself Into Hope
One new way of seeing things comes to me in a dream.
On Wearing Masks, Needing Each Other, and the Importance of Beginnings
“The beginning in every task is the chief thing.”--Plato
Five Questions for Heather Kennedy
Recently, Heather sat down with PD Wise to speak about her experience of living with Parkinsons.
Losing Your Doctor
Why might losing a doctor prompt such primitive and painful emotions?
Five Questions for Allison Toepperwien
I would say the most significant challenge is overcoming people’s perceptions of me, before they get to know me.
From “Why?” to “So What?”—Thoughts on Illness and Other Painful Experiences
Painful experiences inevitably prompt us to ask questions, and especially questions of why?
Misdiagnosed
Up to 35 percent of those living with Parkinson’s disease, or one in three, tell stories of an initial misdiagnosis. Here is my story.
Parkinson’s and Slowing Down
“Wherever I look, people are hurrying to get somewhere…anywhere…and why?"
Sharing Struggles, Offering Encouragement, and Making Connections through Radio
I focus on living my life to the fullest in spite of the challenges this disease presents.
Humanizing Parkinson’s with Humor
“There are forms of humor that escape pain, and there are forms of humor that transfigure pain.”
Expect the Unexpected: Music and Parkinson’s
In the years since he was first diagnosed with Parkinson’s, he discovered a variety of ways in which music has helped him temporarily hold back some of the more debilitating aspects of the disease.
My Neurologically Customized Family
...we really are quite the motley crew of good-hearted people who are kind of...what do I want to call us? Customized, maybe. Let’s go with customized.
Parkinson’s and Friendship
“Are you in any pain?” he asks, his eyes opened wide and his body bent slightly forward in the passenger’s seat of my car.
Helping Others, Helping Yourself
The months following my diagnosis were difficult. I was basically in shock. How does a healthy 46-year-old have a disease that older people get?
From Silence to Freedom with Parkinson’s Disease
One evening, in the fall of 2016, I walk quietly into our dining room, where my backpack rests in a chair.
Communication Changes and Challenges throughout the Disease Process—A Patient’s Story
I have now entered my 43rd year with PD, having been diagnosed at age 7, and I am in a unique position to be able to pass on my experience and knowledge.
Telling My Children I Have Parkinson’s Disease
How do you tell the people you love most that you have a progressive neurologic disease?
The Other Shoe Dropped
The Other Shoe Dropped. And believe it or not, I can hear its distinct thud echoing everywhere.
Crafting a Parkinson’s Story
“I want you to remember something. It’s really important. People experience this disease differently. It’s not the same for everyone.” Dr. T, my neurologist, then pauses, looks me in the eye, and with a Texan’s directness and authenticity says, “Don’t let someone else’s story become…
Before I Had Parkinson’s
Many people know of Parkinson’s disease as a movement disorder, but there is a whole bag full of symptoms that you can experience.
A Stronger Voice
Like many things Parkinsonian, the changes came on slowly and subtly, but they didn't relent.
Spiritually Muddled
The 140 saints, cast in stone and perched atop the wrapping colonnade, add religious heft, while the developmentally delayed young girl in a wheelchair and the middle-aged blind man standing across the pool add humanity.
A Marathon, Not a Sprint
It’s 4:45 a.m. on Sunday, eleven days after my Parkinson's diagnosis at the age of 48. I awake to the sound of the door lock’s firm click as Tracey leaves our hotel room on Manhattan’s Upper West Side.
The Things People Say
“You look great!” “Parkinson’s? You don’t look sick.” “Oh I am sorry. I will pray for you.” “I have heard that the oil of the Mongolian skunk cures Parkinson’s” …and other things well-meaning people say. If you are living with Parkinson’s, you have heard…
Accepting My Parkinson’s
In this video, Ned Neuhaus reflects on his journey toward accepting a diagnosis of Parkinson’s disease and the freedom it has given him. Photo by Wil Stewart on Unsplash Ned Neuhaus earned a Bachelor’s in Accountancy from the University of Illinois, is a CPA, and…
I Won’t Give Up!
I never in a million years thought I would be diagnosed with YOPD at the age of 38, in the prime of my career, and with 4 year old twins.