Embracing the Challenge: Unveiling the Hope and Humanity in Parkinson's Disease

Embark on a journey of understanding and empowerment as we unravel the complexities of Parkinson's disease, a condition that reaches beyond the grasp of old age to touch the lives of many. Prepare to be armed with knowledge and insights that could transform your approach to this neurodegenerative disorder, as MJ takes you through the nuances of Parkinson's progression and the myriad ways to uplift those in its clutches. Whether it's modifying a home to suit new needs or simply learning the art of patient communication, this episode is a treasure trove of guidance for anyone looking to stand in solidarity with those battling Parkinson's.

Feel the pulse of hope in our latest discussion where we celebrate the tenacity of the human spirit in partnership with Parkinson's.  MJ shares a tribute to loving others living with Parkinsons in a poignant and personal story while also sharing how to have and share a heart of resilience, strength, hope and love.  In this podcast, we'll explore the joy and purpose found in a community that's stronger together. Join us as we paint a picture of a future where Parkinson's is not just managed but conquered. 

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We look forward to having you back with us for our next episode, where we'll continue to explore the wonderful world of aromatherapy and its role in promoting mental and emotional well-being. Until then, take a deep breath, relax, and be well. I hope to hear from you soon. Your feedback is most welcome.

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Episode Transcript

Speaker 1 (00:01):
Welcome to the Griot Journals Coming Home podcast,
where we delve into the profoundand often complex issues that
shape the human experience.
I'm your host, dr Mary AnnJefferson, better known to you
as MJ, and in case you haven'theard it today, to our military
veteran family and widercommunity.
Welcome home.
Today we shift our focus to amatter of great weight and

(00:25):
importance Part 2, on ourcoverage of Parkinson's disease.
Did you know that at the timeof this broadcast, nearly one
million Americans are livingwith a diagnosis of Parkinson's
and that the research suggeststhis number will surge to 1.2
million by the year 2030.
These aren't just some obscurestatistics or nuanced numbers.

(00:49):
It's a wake-up call, a call toaction.
In the realm ofneurodegenerative conditions,
parkinson's now stands as thesecond most prevalent, trailing
only behind Alzheimer's.
Each year, nearly 90,000individuals in the United States
are confronting the challengesbrought by Parkinson's.

(01:11):
And Americans are not alone,because this disease knows no
boundaries.
Globally, over 10 millionhearts and souls navigate the
delicate, intricate and imposingterrain of this condition.
And for those listening, whostill believe that age ain't
nothing but a number in thisdiagnosis, contrary to the

(01:31):
thinking of many, it is not thesole arbiter in receiving
diagnosis.
While Parkinson's does oftenintertwine with the aging
process.
A surprising 4% of people arereceiving their diagnosis well
before reaching the tender ageof 50.
This challenges all of ourassumptions about the swift

(01:53):
transition of time.
And for an even more nuancedview of this reality, according
to the Parkinson's Foundation,research shows males are 1.5
times more susceptible to thegrips of Parkinson's than their
female counterparts, adding adistinctive hue to the intricate
canvas of this condition.

(02:14):
And so we've entered fourthinto part two on our discussion
of Parkinson's.
But I don't want us to get lostin the numbers, because behind
the numerical landscape arepeople, families and communities
shaped by the far-reachingimplications of Parkinson's.
I'd like to thank you forjoining us on this journey today

(02:38):
of loving, learning and liftingas we explore the intricate
facets of Parkinson's, and staytuned for more profound insights
from the Grio Journals ComingHome podcast.
And once again, welcome home.
So what is Parkinson's?
Parkinson's is a condition thataffects the nervous system.

(03:01):
It is a neurodegenerativedisorder that impacts all
aspects of movement.
Now let's break it down in away that we can all grasp.
Picture your brain as a complexorchestra where each part plays
a crucial role in keepingeverything in harmony.
With Parkinson's, some of thoseinstrumental sections start to

(03:22):
lose their rhythm.
The result Trimmers, stiffnessand difficulty with balance and
coordination, incontinence andother digestive challenges, and
even memory and intimacy.
Parkinson's is known by fivestages of development or
progression.
In the first stage, you maynotice mild tremors and

(03:46):
difficulty walking on one sideof the body, and in the second
stage, symptoms worsen andaffect both sides of the body.
You'll experience difficultymoving and changes in facial
expression is noticeable.
In stage three, balance andcoordination are impaired, vols
are more common, movements areslower and speech problems begin

(04:10):
to occur.
In stage four, tasks becomevery challenging.
Assistance is needed for dailyactivities like dressing,
putting on shoes or cookingmeals, or getting from one part
of the house to the other.
Walking may require a walk or awheelchair.
And in the final stage, stagefive it's the most severe.

(04:35):
In this stage, the person may bebedridden or have dementia.
Constant nursing care isrequired.
Can they be maintained at home?
For some people they can.
This is a conversation thatyou'll need to have with your
loved ones, your families andfriends, and even your
healthcare professionals.
So what can be done?
How can we support ourselves,as we love people with

(04:58):
Parkinson's?
Well, information is power.
We need to learn aboutParkinson's disease, its
symptoms and potentialchallenges.
We need to understand thecondition and that help is
possible and can be provided,and should be provided, along
with a healthcare team to ensuremaximum care.
Communication is key, andmaintaining open and honest

(05:20):
communication with the personyou're caring for and family and
friends is important.
Encourage them everyone toexpress their feelings and
concerns in the way that bestfits their communication styles.
Make modifications.
A Parkinson's prognosis is nota death sentence.

(05:44):
Change can help you better dealand cope with the things that
are in front of you.
The home environment may needadjustments, so we may need to
rethink what it looks like on aweekly basis, and sometimes on a
daily basis, depending on whatthe person's needs are.
Installing handrails, grab barsand removing tripping hazards

(06:07):
can create a safer living space.
Mobility assistance we'vetalked about chairs and canes,
but also eating utensils as well.
You may need to adjust the kindof eating utensils that you use
to take advantage of helpingthem with things that will

(06:28):
ensure they have a grip on theforks, the pens and pencils,
because sometimes their writingchange is stark as the disease
progresses.
You may need to help them withother things that require fine
motor skills, even brushing ofthe teeth or brushing of the
hair.

(06:50):
Manage medications Parkinson'smedications often have specific
schedules Establish a routinefor medication management and
ensure that the prescriptionsare filled on time.
Running out of medication is nofun.
It is important that when youstart a medication regimen, that
you keep up with it andhealthcare professionals can

(07:12):
help you with things that willhelp you to keep up with those
using medminders, using yourphone for timers and schedules
and queuing others who are inyour home.
That these times are importantand what these times mean to the
person living with Parkinson'sand with people around them.
Be patient.
Jargoning or jogging aboutthese different challenges and

(07:36):
instruments and mechanisms canbe frustrating, but it is
necessary and I promise you thata rhythm that you can all live
with will occur.
Seek professional help.
Engage with healthcareprofessionals, including
neurologists, physicaltherapists and occupational
therapists, to providecomprehensive care and guidance

(07:56):
throughout your experiences.
These at home modifications, Ithink, are pretty clear, but
some people will also need todeal with car adaptations.
Depending on the individual'smobility, you may need to
consider installing handcontrols or choosing a vehicle
with easy exit and entry.

(08:18):
Resist the temptation to takethings away.
More than likely, what isneeded is alteration, not
absence of familiar things andactivities.
In my experience, once youstart taking things away, you
literally diminish the lifeexpectancy of those you love.
Remember, people living withParkinson's can live a long life
.
Ensure that every moment isfilled with loving, lifting,

(08:39):
learning and praise.
It will be the little thingsthat let every one of them
surprise you and expressgratitude for each new challenge
and even crisis.
And this is the differencebetween life and liberty, and
sorrow, grief and bitterness.
Remember, acceptance is the key.
Now, on communication styles wealluded to this earlier.

(09:02):
Be patient.
Allow the person withParkinson's the time to express
themselves, especially if theyexperience speech difficulties,
and remember this is one of thecharacteristics that is marked
by Parkinson's.
Maintain good eye contact.
Remember, nonverbalcommunication, such as
maintaining eye contact, canenhance understanding and

(09:25):
connection, and people withliving with Parkinson's are
looking to make thoseconnections.
They're looking for faces thatare familiar, even as their
familiar face is changing.
Share understanding and empathyin each effort to communicate,

(09:45):
use visual aids.
Visual cues and aids may helpin conveying informative
information effectively.
Caring for someone withParkinson's disease requires
dedication, patience and ongoingeducation, as we've already
discussed, and by understandingthe challenges and making the
necessary adjustments in theprocess of time, caregivers can

(10:08):
significantly improve thequality of life for those they
love living with Parkinson's.
Regular communication withhealthcare professionals and
support organizations is vitalfor staying informed and
providing the best possible care.
In the tapestry of my life,loving someone with Parkinson's

(10:29):
has become an intimatelypersonal chapter, one that's
reshaped my entire existence.
The profound challenge Igrapple with daily is the art of
letting go.
It's a paradox.
Really, to truly embrace life,I've had to unclench my grip on
what I thought I could control.
Life's journey, as it turns out, demands that we release the

(10:51):
illusion of a mapped out pathand instead buckle up for the
unpredictable ride of challenges, crisis and even constant
change.
Week by week, day by day, evenmoment by moment, I navigate
this uncharted territory, and inthese moments I find solace in
my faith and the memories ofthose who exhibited

(11:12):
extraordinary faith and patience.
Their stories become awellspring of strength for me.
I draw inspiration fromsurvivors, from the resilient
figures in the Bible who,despite their own trials,
pressed on with unwaveringdetermination.
What I've discovered is atransformative shift in
perspective, a willingness toview Parkinson's not as an
adversary but as an unexpectedpartner in this journey, when we

(11:36):
alter the lens through which wesee it, releasing our fixation
on a predetermined future andoutcome, a profound peace
becomes possible.
It's a journey of acceptance,understanding that the key lie
is not in resistance but inembracing the reality that
unfolds In the face ofuncertainty.
I've learned that acceptance ismy compass.

(11:56):
It's a journey marked by awillingness to let go of rigid
expectations, replacing themwith a tender acceptance of each
moment as it comes.
This, I've found, is where thetrue essence of living resides.
And in the distance, in thedance between surrender and
acceptance, in finding peaceamidst the unpredictability of

(12:18):
life with Parkinson's.
This is my story, my heart, mybear, navigating the twists and
turns of love and acceptance.
In the shadow of thischallenging yet transformative
partnership, there is hope.
Now, here's the anchor of hope.
Researchers advancing,treatments are evolving and
people living with Parkinson'sare defying the odds every day.

(12:40):
Organizations like theParkinson's Foundation are
leading the charge in not justmanaging symptoms, but also in
the pursuit of a cure andsupport to make everyday living
with Parkinson's filled with joy, purpose and meaning.
Behind every statistic, there'sa face, a family and a
community of fighters who refuseto be defined solely by

(13:01):
Parkinson's.
So as you and I navigate thisjourney, let's focus on the
stories of courage, the stridesin research and the promise of a
brighter tomorrow for thoseaffected by Parkinson's disease.
There is hope in the midst ofthis challenge and together we
can create a symphony of supportand resilience.

(13:24):
Thank you for listening, godbless.