Living with Parkinson's | Parkinson's Disease Experience

A day in the life

Quiet as the morning air

It does not knock

Leaving silence in its wake

No pattern, or precision

No give, all take

At first you do not notice

Life is busy as it is

But then one day it becomes familiar

Catches your attention

And you think…

What is this unusual movement

Never seen before or felt

No longer ignored

It has your attention

It is out of the norm

Life has secretly guided you

Down paths ill-suited to one’s health

Surreptitiously introducing you to agents

Robbing you of your biological wealth

Stealth in approach

As would be a preying lion

Clever as it is convincing

Each visit is different

And unique in presentation

Its watermark

Suddenly, it becomes apparent

Fingers and legs move in different ways

Not seen before now

And when the scent of the roses

Can no longer be enjoyed

We feel somewhat of a pawn

In a game of chess, when

Controlling the center is no longer a play

Time moves on and more symptoms

Are revealed

Social engagements become difficult

As what once was normal

One can no longer conceal

So, we exercise and listen to experts

Upping our effort

And adopt best practices as we can

We learn that, unlike what was initially believed Parkinson’s is a collection of illnesses

Without a single plan

As the debate continues among researchers

Regarding the role an assay plays

The drive to eliminate this disease

Gains momentum every day

As does the urgency for new treatments

Rises in demand

The total number diagnosed will double

to 12 million in a 15-year span

And for those most challenged, we do our best

We eat well, exercise and get our rest

And while we wait for breakthroughs to take place

We adapt, we twist, we turn

We ask God for grace.

journey for truth

I’ve traveled far and wide
Researched and reviewed
Challenged and engaged
In lively conversation too
I’m different I say
They smile and nod
Then I’m labeled as others
Be on your way

Can they not entertain
Nor understand
Subtle differences exist
That may pertain
And while not proven
One should not outright
Discard or exclude them, or resist

And then one day, I stumble upon
An alternative perspective
Though not common, a dawn
A result of study
Laboratory and books
A new paradigm emerges
Its a new outlook

The time has come for a new approach
Change is possible, its true
Where one can also have both
With science as a foundation
Advances are made
Lives are improved
Where others mistook

The day arrives
When we meet face-to-face
A glowing countenance before me
Exuding calm and grace
We review the numbers
And then the charts
I find you unique
When did this first start?

The findings we review
Never assessed before
But caught in time now
Before problems set in
I know not how

Life now has new meaning
Relevance and depth
A lightness of being
A renewal of breathe

my spirit dances

My spirit’s alight

The piano plays

I explore, its freeing

What can I do?

Where will I go?

Will it be familiar

Or somewhere unknown

In life we must manage

The antagonist, uncertainty

It’s not always easy

But the alternative

It’s not palatable, for you nor me

So raise up, take a step

The next step is easier yet

Soon you’re on your path

The path that sets you free…

Free of constraints

That say, no, you can’t

That hold you back

When you have roads to travel

And flowers to plant

Chest out, nose in the air

Will and determination take ahold

And with a prayer…

Life plays out

Unpredictable that’s true

As it will be

Diverse as humanity

Deep as the sea

So peer, explore

Let your being take flight

Let it explore new avenues

Reach new heights

Grace

When life goes sideways

Distractions are many

You think of home

Where friends and family

Extend a hand

And wink, please join us

Just as you can

The mood is easy

You laugh and applaud

Of feats and accomplishments

Otherwise, awed

No calculation for return

Grace leads the way

Its simple, uncomplicated

Live for the day

A lightness of being

Is felt through the space

Genuine and caring

No motive or race

The world can be rough

So to have such friendship,

Family, and grace

Is a gift beyond all others

In time and place

In the circle of life

Giving back to others with care

Is an understanding, a regard

Of all we can share

To lighten a load

And brighten a path

A simple routine

A heartfelt task

We rejoice in the gestures

Of those we unexpectedly meet

They address you by name

There’s a reason you meet

She lends a hand

You acknowledge her smile

Its Grace that binds

All the while

Hope

When long days

Have a moment

Of unexpected joy

That cause you to pause, reflect

A smile unfolds

And your determination

To never give up

You believe, might just be

A turning of the tide

The opening you seek

For the yoke is heavy

And the question becomes

Will this stress resolve

If I pray harder, give more

Will this puzzle,

Be solved?

One’s burden may be silent

Or present for all to see

No matter, life hurries around us

And there are no guarantees

Hope may present as a kind gesture

Or independence to a degree

Regardless, a guiding light, a beacon

That if we look, we can see

Through the shadow of night

It is a landscape, a perspective

Of all that we can be

Gratitude

Words of encouragement

Gave me the courage to carry on

To start each day with optimism

And for those who looked askance

At what the future held

I was able to rise above

Moved by the nod, the smile

By those who acknowledged my fight

And had faith in my ability to overcome

Those who I knew well

And those who I just met

Offered their support

In prayer and kindness, a tapestry

Of unconditional care, and love

So that when the sun would set

I could close my eyes with confidence

That when tomorrow came

I would gather up my energy

Face any challenge with resolve

Not blame

It is with gratitude

That I look back

Reflecting on my journey

Now eagerly awaiting to engage

All that has accrued

For it is with the foundation of others

I was able to shore up my reserves

Take on the fight of a lifetime

Joyously breakthrough the finish line

Arms outstretched, in prayerful thanksgiving

To God and all his blessings

And for this, my sun does shine

When Everything Flows

I began the day with energy galore

Writing and editing like never before

I then took a break at the piano, you see

Not only is it a refuge, but it provides therapy

My left hand as it turns out

Is not as nimble as it used to be

Over the years I’ve learned

To rise above, those things that in the past

Brought me down despite love

So I do my exercises to sustain my left hand

And play the piano the best I can

Some days are remarkable

As I look over my shoulder and say

Who is that person gracing the keys?

Captivating others as she plays

I am full of gratitude on those days I fly

Because other days stall

No matter how hard I try

It may start in the evening

When I stay up too late

Pursuing one project or another

To stop mid-through writing, it just seems wrong

But then I realize I’ve missed my window and sigh

For deep sleep will likely be replaced with

A night of toss and turn

My meds have worn off

But it’s too early for the next round

I try and lay calmly

Wishing the tremors would stop

I crave peace

As well as absence of sound

When sleep does arrive

I hold onto it tight

Wishing for nothing more

Then a restful night

To accumulate enough hours

To survive the day

And with the aid of a nap

I hope and pray

As sleep goes, so does my internal clock

I am late on doses

Leading me to struggle as I walk

The feet move slower, the body is no longer still

I must bide my time

Until my brain catches up to my will

By now much of the day has come and gone

I promise myself to do better next time

But life’s idiosyncrasies, they come and go

Leading me to appreciate

Those days

When everything flows.

Sideways

I began the day with energy galore

Writing and editing never seen before

I took a break at the piano after fatigue set in

The piano is not only a refuge, it provides therapy

It exercises my left hand

Making in nimble again

Over the years I’ve learned

To rise above situations that bring me down

Some days are remarkable

Others less so

On those days when my fingers

Grace the keys

I ask myself, who can that be?

Those days I’m full of gratitude

Other days well, not so much

While thankful, they just go sideways

It may start late evening

When I stay up too long

Pursuing one project or another

But o say no to creativity, just seems wrong

I soon realize I’ve missed my window

For deep sleep, then toss and turn

Thinking, when pray tell

Will this cease?

My meds have worn off

But it’s too early for the next round

I try and lay calmly

Wishing if only the tremors would cease

Craving peace and absence of sound

When sleep does arrive

I hold on tight

Wishing for nothing more

Knowing that if I slept more hours this night

I’d have enough hours to last the day

And be bright

The day passes, much has come and gone

I promise myself to never again

Miss setting my watch and seeing dawn

Life’s ups and downs are hard to predict

Leading me to appreciate those days even more