Episode Transcript
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SPEAKER_00 (00:13):
Hello and welcome to
Live Parkinson's Live an
Exceptional Life.
I'm your host, Chris Custom, andI've been living an exceptional
life with Parkinson's for thepast 15 years.
The mission of this podcast isto help as many people as
possible living with Parkinson'sto lead a great quality of life.
Now, this week here in the U.S.,we celebrate Thanksgiving.
Now, for many, it's a holidayfilled with family, food, and
(00:36):
tradition.
But beyond the turkey and thefootball, Thanksgiving holds a
profound power.
It forces us to pause.
It compels us to look at ourpast and our current struggles,
past the tremors, the rigidity,and the off times, and generally
ask, what am I grateful forright now?
(00:56):
Now, when you live with achronic disease like
Parkinson's, it's easy to letfear and frustration dominate
the narrative.
But the most resilient,optimistic people, the ones who
truly live Parkinson's, havemastered the art of finding
blessings even on the toughestdays.
So today we're celebrating theholiday by sharing four powerful
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true stories of hope andgratitude from the Parkinson's
community.
These stories prove that whilePD changes your life, it doesn't
have to diminish your spirit.
In fact, it can help refine it.
So let's dive into theseincredible testimonies of
resilience.
And I'll try to do the best Ican to accurately convey what
(01:38):
the author was trying to say intheir story.
And our first reflection comesfrom a person living with
Parkinson's, and her name isJoan, and she found that her
diagnosis wasn't just a loss,but was a surprising source of
new gifts.
So here's her story.
Many people assume that adiagnosis of Parkinson's disease
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only brings challenges.
And yes, there are challenges.
But I've learned that a slowerpace in life can bring
unexpected gifts, and I chose tocount them.
One of the most significantgifts I've received is a growth
of compassion and patience.
I think back to my pre-diagnosisself.
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I was often impatient,especially standing in lines.
I would sigh and tap my foot,wishing people would just hurry
up.
Now, when I see someonestruggling to move or someone
who is visibly stressed, I don'trush them.
I don't judge them.
Instead, I feel a kinship, adeeper understanding of their
(02:40):
struggle, and I'm learning toappreciate that we are all
dealing with something.
Living with Parkinson's alsoforces me to slow down my
mornings, where I used to rushthrough my routine, now I move
intentionally, focusing on eachstep, each stretch, and in that
slowness I find refreshment.
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I find time to truly appreciatethe morning light, the quiet cup
of coffee, and the simple factthat I can move and breathe.
The disease can take manythings, but cannot take the
power of my choice.
I choose to see these as giftsthe gift of patience, the gift
of compassion, and the gift ofappreciating the present moment.
(03:23):
Now that powerful message wasshared by Joan and published in
her Parkinson Stories on theLibparkinsons.com website.
And Joan writes monthly poemsand stories about her
Parkinson's journey on Joan'spage on the Libparkinsons.com
website.
So please visit the website andcheck out Joan's stories.
They're very optimistic anduplifting.
(03:44):
Now, our next story is calledThankfully It's Only
Parkinson's.
There are moments in life whenthe world seems to stop.
For Karen, that moment came oneevening.
Nestled in bed beside herhusband Doug, they had a ritual,
sharing the most importantevents of the day before
drifting off to sleep.
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Doug went first.
His words were simple, but theyshattered the air.
I have Parkinson's.
Karen's response was immediateand visceral.
I reject that.
Doug wasn't just her husband, hewas the best human being she
knew.
Kind, gentle, brilliant andstrong.
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She had met him later in lifewhen she was a single mom of an
eight year old.
He was tall, handsome, fluent inSpanish, and still searching for
the perfect partner.
After seven months of courtship,Karen told him, You should marry
me.
You'll be happy.
And he did.
For years, they built a lifefilled with love, laughter, and
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shared dreams.
But Parkinson's changedeverything.
It started with small signs.
Doug's gait was off.
His right arm no longer swung ashe walked.
His handwriting shrank into tinyletters, a symptom called
micrographia.
Doug, a physician himself,recognized the clues.
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The diagnosis was undeniable.
For Karen, it felt unfair.
Doug was young, fit, and full oflife.
Their plans for retirementsuddenly seemed fragile.
She wrestled with anger, envy,and dread.
They would need to rethink theirfuture.
Home without stairs, legaldocuments prepared, dream
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condensed into shortertimelines.
Yet, life has a way of teachingperspective.
Doug's neurologist, a longtimecolleague, passed away
unexpectedly at age sixty-three.
Their neighbor Nancy faced ALSwith serenity and courage,
choosing her own path ofcontrol.
Friends, colleagues, and evencelebrities, Michael J.
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Fox, Linda Ronstadt, NeilDiamond, reminding them that
Parkinson's was part of a largerhuman story.
Slowly, Karen and Doug began toshift from despair to gratitude.
Doug retired earlier than hewanted, but he found joy in new
pursuits, Spanish lessons,pickleball, and time with her
grandchild.
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Karen found strength inacceptance, in swinging arms
together during walks, inlistening to Doug's breathing at
night, and counting theblessings.
And so Karen's reflection becamea love letter, not just to Doug,
but to life itself.
She realized that tomorrow isnever promised, and while
Parkinson's is a heavy burden,it's not the end of joy, love,
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or purpose.
Her words echo with resilience.
Doug will never wake up and beParkinson's free, but he does
wake up, and I wake up with him.
Sometimes I just listen to himbreathe and count my blessings.
We are fortunate indeed.
Now this story is about denialof heart isn't about denial of
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hardship.
It's about choosing gratitude inthe face of it.
And Karen reminds us that evenwhen life hands us Parkinson's,
there's still love, laughter,and the gift of waking up
together.
So in this Thanksgiving may weall carry that lesson to hold
close to the people we love, tofind joy in the small moments,
and to be thankful, even whenlife is imperfect, that we still
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have today.
Now this poignant reflection,titled Thankfully It's Only
Parkinson's A Caregiver'sPerspective, was written by
Karen Lefton and published bythe NeuroChallenge Foundation.
Now our next story is called ThePower of Persistence Frank's
Journey.
(07:41):
Frank was only thirty nine whenthe first whispers of
Parkinson's appeared.
His hand trembled slightly, hissteps felt uncertain, but he
brushed it off.
Too young, too busy, toounwilling to believe.
For years, the signs grewlouder, until the truth could no
longer be ignored.
In 2007, the diagnosis cameParkinson's disease.
(08:07):
At first, fear and anxietywrapped around him like chains.
Everyday tasks felt like loomingthreats.
He worried about losing control,about being defined by his
illness.
Nights were restless filled withquestions that had no easy
answers.
But persistence has a way ofreshaping despair.
Frank sought out a movementdisorder specialist, someone who
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just didn't treat symptoms, butoffered a path forward.
Through guidance he discoveredthat Parkinson's was not the end
of his story, it was thebeginning of a new chapter.
He began to move again.
Exercise became his ally, diethis foundation, and stress
management his shield.
Slowly the chains loosened, feargave way to determination, and
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anxiety was replaced by amindset of possibility.
Even setbacks, like afrightening trip to the ER, did
not break him.
Instead, they fueled hisresolve.
He pursued deep brainstimulation, a treatment that
restored much of hisindependence, and with
persistence, he reclaimed hislife.
Frank's transformation wasn'tjust physical, it was creative.
(09:15):
He poured his journey intopoems, lyric, and music.
His words carried the rhythm ofresilience, his songs echoed
with hope, and he even releasedan audiobook, sharing not just
his struggles but his triumphs.
Today Frank's story is not aboutParkinson's, it's about
persistence.
It's about the courage to facefear, the strength to change
mindset, and the power to turnadvocacy into art.
(09:38):
His journey reminded us thatParkinson's may shape the path,
but persistence defines thedestination.
Now this inspiring journey, ThePower of Parkinson's Frank
Story, was published by theAmerican Parkinson's Disease
Association.
Now our final story is titledGratefulness Embraces
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Parkinson's.
There's a moment in life wheneverything changes.
For Tim Ro Tim Roberts, thatmoment came at an age fifty,
when he heard the words You haveParkinson's disease.
At first, the disease felt likea collapse.
His identity, his sense of self,they seemed to crumble under the
weight of fear, anger, andloneliness.
(10:21):
Thanksgiving, joy, and evensimple gratitude felt out of
reach.
But then something shifted.
Tim discovered that gratefulnesswasn't just about a thought, it
was a practice, a way of living.
He began to notice the wholenessof life, not in grand
achievements, but in the small,fleeting moments.
(10:44):
One evening, he stood before arose.
At first it was just a flower,but as he gazed at it, something
extraordinary happened.
He felt as though the universeitself was looking through his
eyes at the rose, and the rosewas looking back at him.
In that instant, he realizedGratefulness is not about
(11:04):
denying hardship.
It's about opening our hearts tothe beauty that still exists,
even in the midst of struggle.
Tim describes it as a softeningof his heart, a physical release
that allowed joy, awe, andconnection to flow in.
He began to see that everymoment, even the difficult ones,
was part of a large river oflove and creativity.
(11:27):
Living with Parkinson's didn'tbecome easier overnight, but
through gratefulness, Tim foundclarity, ease, and a deep sense
of belonging.
He discovered that gratefulnessis not just a response to life,
it's a way of embracing life,exactly as it is.
And so, this Thanksgiving, Tim'sstory reminds us of something
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profound.
Gratefulness is not reserved forperfect moments.
It's found in the imperfect, thefragile, the fleeting.
It's found in the way a roseblooms, in the laughter of
family, and in the courage tokeep going.
Gratefulness embracesParkinson's, and in doing so, it
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embraces all of us.
And this profound piece, titledGratefulness Embraces
Parkinson's, was written by TimRoberts and was published on
grateful.org.
All right, now these fourstories, Jones' discovery of
compassion, the caregiver'sacceptance, Frank's persistence,
and the practice of deepgratefulness, give us a roadmap
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for navigating Thanksgiving weekwith a renewed sense of spirit.
So as we conclude this specialepisode, I encourage you to take
a few minutes today tointentionally identify three
things that are gen that you'regenuinely grateful for right now
in your life.
What are you grateful for?
Rate them down.
Say them out loud.
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Let that feeling of gratitude beyour source of strength.
Now, if you found inspirationand hope in today's episode,
here's how you can support theLib Parkinsons mission and stay
connected.
Subscribe to the newsletter.
If you want to continue helpingpeople with Parkinsons to lead a
great quality of life, pleasevisit LibParkinsons.com and
subscribe to my free monthlynewsletter.
(13:11):
You get motivation, tips, andupdates delivered straight to
your inbox.
Support the show.
If you feel strongly about mymission and want to help keep
these messages of hope flowing,you can click on the support the
show link in the description ofthis podcast, and every
contribution helps me reach morepeople in our community.
And then finally, learn moreabout my personal journey.
(13:33):
If you want to learn more aboutmy personal Parkinson's journey
and the strategies I've used tolive an exceptional life with
Parkinson's, pick up my book,Spectacular Life, Four Essential
Strategies for Living withParkinsons.
It's available on Amazon.
And I want to thank you so muchfor listening, and I hope you
all have a blessed and gratefulThanksgiving.
Until next time, keep living aspectacular life.
(13:55):
Stay healthy, stay strong, andlive your best life with
Parkinson's.
Thanks again, and I hope to seeyou soon.