World Parkinson’s Day 2022 - Talk about Parkinson’s Poetry Thread!

World Parkinson’s Day 2022 - Talk about Parkinson’s Poetry Thread!

Hello everyone, :wave:t5:

It’s that time of year again where we mark a special day in the calendar to raise awareness on Parkinson’s.

This year; on 11th April for World Parkinson’s Day, we’re encouraging everyone to ‘Talk about Parkinson’s’. :slightly_smiling_face:

We all have a Parkinson’s story to tell. Therefore, we’d like you to share yours through a poem this World Parkinson’s Day. :blue_heart:

We know that this vibrant community is no stranger to writing amazing poems; however, unlike the creative corner, this public thread has been created to encourage you all to tell the world how Parkinson’s has affected you or a loved ones which we’ll then share excerpts of via our social media channels to help raise awareness. You have a powerful story and together we can raise awareness of Parkinson’s.

Your poem can be happy, funny, sad or thoughtful. You can also include pictures - It’s up to you. It’s your Parkinson’s story. Tell it your way! :person_white_hair:t5: :pouting_woman:t4: :person_pouting:t3: :older_man:t2:

For more information on ways that you can get involved on World Parkinson’s Day, please visit the Parkinson’s UK website HERE.

And the other:

Final exit.

Push over Mr. P. There’s no room for you and me.

You have outstayed your welcome.

(Who invited you? – Not me!)

And take your tremor with you and your awkward clumsy ways.

It’s time for you to take your final bow.

I’m afraid I must insist.

No ifs, no buts and certainly no pppps.

You’ve had your time in the spotlight, now it’s our turn to feel the sun.

Without you on our shoulders, we can run and run and run and you and me and

everyone will say, “That’s a job well done!”

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A member of the Parkinson’s community sent me some poems and asked me ot share them. So here they are:

Tea with Mr. P
It’s hard to be a winner when your head falls in your dinner
And you are trying hard not to choke!
Your socks have run away, and your shoes refuse to play
And someone is knocking at the door.
With stick in hand, I struggle to stand, shuffle and sway and I am on my way, take care, nearly there, oh no!
I know this place; I’ve been here before, thank goodness my alarm is safely on my arm, surely someone will answer the door!
The team arrives and pile magic cushions way up high.
Is there anything else we can do?
A cup of tea would be nice and a small vanilla slice or a doughnut oozing with jam. Can’t you see Mr. P you’ll never get the better of me I’m the winner, yes, I am I am I am!


“Tea with Mr P.” I love it. EMx

This is not new but for me, it says it all


Loving the creative visuals - keep them coming! :blush: :ok_hand:t3: :tada:

New Prescription

Medication or meditation
Manage symptoms, accept the pain
Giving in, what’s to gain?

Am I helping myself in taking medication?
Research forums and blogs, continue reading
Definitely a glass half full, absorb new information
Keep moving, stay motivated, positive feelings

Tiredness sneaks up on me, it’s just gone noon
I close my eyes and feel myself fall
A twenty minute ‘power nap’, and there’s that tune
My mobile ringing, back in the zone, answer the call!

Another night where I’ve only had three hours sleep
Another day of meetings, it’s hard to keep up the pace
Onlookers unaware of the effort it takes and this secret I keep
With a little more make-up, I paint a smile on my face

I do worry a little of the unknown
What this will mean for me
I do appreciate I’m not alone
The beginning of a new journey

P atience
Ac ceptance
R espect
K indness
N ot giving up
S hare
O ptimism
N urture My new self-prescription – take daily


Time really matters because it’s critical

Especially in case of parkinson’s, very crucial

Doctors and nurses Get it on time every time

The Parkinson medications to get your time

Which will make the patient to feel safe and special.

1 Like

Hello. I have 4 poems to post. I hope that’s not too many.
The first two were w ritten some time ago, and the others just recently.


Parkinson’s can pull the rug from under you,
Topple you, as far as you can go.
You explain best you can the desolation,
Unable fast enough the right words
To pull from your mind, now slowed down to a crawl,
Moving at thirty in the fast lane.
Tears flow faster, as communication halts,
Understanding no longer exists.
Parkinson’s can transport you to an island,
Dump you there; yet somehow you must fight.

  1. Meet Pete


Parkinson’s we must defeat,
This clever cunning, call him Pete,
Who rules our lives with rods of steel,
And in his heart nothing feels.
First of all we shout out loud,
Pull Pete out from behind the cloud,
That shelters him from close up view,
So expose him to others too.
This is Pete, see, everyone
Do not forget what this one’s done,
Ruined lives the world over,
Coward then runs for cover,
Only soon to reappear
Fill his victims so full of fear,
They swallow pills year after year,
To stop Pete approach too near.
In the open he takes care
Not to be witnessed anywhere:
But if you see him, chase him off-
Of this bully, I’ve had enough.

3 ME AND PARKY PETE : 12years on

Twelve years have been, twelve years have gone
Since that day then, when all went wrong.
Slow and steady, Pete’s won the race,
He’s run by me at steady pace.
Hello, Parky Pete, the one I mean,
Parky Pete it is, just now come clean.
He holds us tight, given the chance,
Leads us all on a merry dance.

“And here I am, your good friend Pete
To embrace you all - that’s some feat.
You are my works of art, for sure.
My presence here you all endure,
Knowing full well how much power
I wield over you, each sad hour.
As the clock ticks on, tick tock tick…
I do not miss a single trick.”

Parky Pete is no faithful friend,
But causes havoc from start to end.
He crept up on me from behind,
Notorious, clingy, creepy kind
Of trouble to be avoided, see!
See just what he has done to me!

“Pete here, ha ha, the devil’s mate,
I stand around and wait and wait.
You come out from your safe home,
See me not, standing all alone.”

He’s done his worst, he thinks his best,
From him I badly need a rest.
No longer can I stand up straight,
But lean to the side, such my fate -
A monument to his hard graft;
The Leaning Tower of Pisa - Pete laughed!.


The conversation bends and twists through a warren
of multiple paths, touching on the best route from
time to time, but hardly there till
some intersecting path slows progress, until we are back on the right road.

Who is it that determines the right road, I wonder to myself while listening
intently, while trying to keep up with everyone,
as some nip down side alleyways, while others are temporarily thwarted by unmarked cul de sacs; who knows where to go?

I take a break, though saddened by my new found inability to
keep up, to follow the conversation, both straight ahead, and also,
as it heads down various avenues, as it proceeds, interestingly,
disturbing truths, long held in the highest esteem.

Break over, I rejoin the others on their tortuous journey to unearth the truth of the matter.
I have rested my troubled brain, for which it is grateful.
A little rest might carry us, me and my brain, a long way; It may well do,
but both body and brain are so tied up, held back, so slow.

They are slow, but still in working order, with much to offer. My ears
are unaffected, and hear perfectly well the whispers behind my back-
not cruel whispers, but whispers nonetheless, off-putting,
saddening even - why not speak out, ask if in doubt?

I continue on my way with heavy heart, in search of a new abode,
aiming to keep up, to follow the intricacies of the paths chosen,
to play a useful part in life; and to overcome the physical pain, the mental anguish, caused by my much hated illness.


Tot, I like That Stubborn Belief, especially the lines
“I have Parkinson’s, It doesn’t have me.”
I must confess there are times when I query this.
Perhaps some of nAnaElsa’s ‘new self prescription’ might help, and taken on time, so important, as Tinku says.

Hello ElleMac
That phrase ‘I have Parkinson’s, it doesn’t have me’ Is something several people on the forum have picked up on and indeed, it has been quoted more than once in various posts on the forum. I am under no illusions that there will come a time when Parkinson’s increasingly gains the upper hand as things stand, since there is no cure and long term use of meds throws in another variable. You wrote ‘There are times when (you) query this’ and that’s fine, it’s all open to individual interpretation and if I took the phrase more literally I would probably not disagree. When I wrote it however I wasn’t really thinking in those terms, rather it was to emphasise I am and always will be Tot first and not be defined by my diagnosis. As you will know, for me the most important thing is to stay positive and that line is just another way to emphasise that, nothing more.

Sorry, Tot.I hope I havent upset you. I actually love your poem and its positivity. EMxx

No I’m not upset. People are entitled to think what they like. I just wanted to clarify my thinking when I wrote it, which may be different to how others read it and it just gives a bit of context at the time it was written.

1 Like

Hope Full

Maybe these lyrics will raise your spirits
Give you some hope so you don’t use the rope
So when the time comes just let it be,
Me, I been in the long dark tunnel,
Chasing trouble, but now I’ve burst that bubble
Losing the kids,
Opened my eyelids
Too late to open my lips
My perspective, I’m no detective
But it’s something I’ll just have to live with
Break the myth,
I’ll stop shaking in a bit
Till then here I’ll sit
See I’m not useless,
Is progressive really progress?
My legs still restless, time to get out of this mess
Break the mould before you get old,
I was told the devil wants your soul
You drool over cool, now who’s the fool
So kick out the bull and make your life
Hope Full

1 Like

Here is my poem:

By John Michael Smith


I am on board the Parkinson’s train
At sixty the train announced its arrival in my brain
Symptoms raised their head of steam for years before
Hand shaking and fingers that couldn’t unlock the door.

I don’t really know where this train is going
No ticket just my fears and lack of knowing
I have paid a high cost all that I owed
They cannot say how it will unfold.

The gloom hangs on my back like Marley’s chains
I wait for the darkest of clouds depressing rain
The thought of a dark cold future stings
Knowing what is lost in my ear the story degenerative sings.

I still feel the brutal cold honesty of diagnosis
No surprise yet still held the ruthless steel blade of prognosis
No cure here just marking time before the abyss
I have fallen plenty before just another step towards nights kiss.

I took my baggage with me on the Parkinson’s train
Disbelief, sadness, shame, rage and fear and foggy brain
Parkinson’s is here with me skulking and hidden like a sneer
It just lingers to stab my mind with blades of fear

I have seen a glimmer of light
To allow Hippocrates disciples to fight
Drain my blood conduct tests and trial
Isolate me from my family forsaken and frail.

Fight the grip of Parkinson’s and determine my fate
The Parkinson’s train is leaving the station
We in Parkinson’s club know this journey’s end
Maybe just a glimpse of hope beyond the next bend.

For those that follow and board the train in their darkest night
Those who travelled the journey before you know your plight
For now my shaking hand can still write, trembling mouth can still talk
On an unseen ship’s deck my unsteady legs still walk.

I am sick of the daily grind of medication
Need a rest from all pharmaceutical’s just want a vacation
My brain is tired and foggy had enough of chemical tricks
If this is Parkinson’s train let me off to walk the tracks.

I can ask why me is it fate why not him or her
Ignore the self pity and anger accept…why not me
I am no different from you, but this vile Parkinson’s is mine.

I travel on this train with the Parkinson’s monkey on my back
I will find a way to carry it and to live a life.

My frozen face can sometimes still smile and laugh
With brief steady hand I can paint and create in moments
Tremor cannot stop me writing of feeling the pain
Strong firm strides may be fleeting, the journey short
But I will still travel, I will see, I will be,
With my Parkinson’s stowed in my pack.

1 Like

Heres one with thanks to the cat

Morning has broken

Morning has broken like the first morning
Muscles not woken with the alarm
Praise for the tablets
Praise medication
Praise prescriptions help engage the world

Parkinson’s new fall, balance a problem
Walk like a robot as tension starts to pass
Praise for the bathroom with urgent bladder
Relief completed but just in time.

Mine is the stiffness
Aches in the morning
Born of Parkinson’s won’t go away
Treat with exercise, stretch ev’ry morning
My situation day after day

Morning has broken like the first morning
Parkinson’s woken by the alarm
Praise for the tablets
Praise medication
Praise prescriptions, as life unfurls

Unfinished Odyssey (Out of the blue)
A Parkinson’s warrior
Seeking my way home
To myself
An Odyssey Out of the blue

Mesmerised by Parkinson’s stare
Down not out but off
Lost in a calypso
Of my own obsession
In Homeric tradition
Of classic Simpson
Agonist or addicted
Dopamine its own reward
Sleep misplaced by malarkey
Compulsion evident
Yet beset by nobody
Its all Greek to me
Following the rule of denial
Fog shrouds perception
As I sail oceans of my own
Paranoid perceptions
Daytime met with a yawn
Tablet swallowed
Mobility mustered
I ride a Trojan horse
Ambushed from within
Employed on reputation
Past achievements fade
Reliability only a rumour
Respect drifts away
Hope in short supply
The gods decree
Career conclusion
Clutching at straws
While still drowning
Medication rerouted
For the long haul.
Dosage increased by degree
But treatment Circe’s trick
Whose sleight of hand
Blurred symptoms and side effects
Battling sixheaded Scylla
By epic reduction
Step by step graduation
Taunted by undermedication
Colleague’s confidence dwindles
Trust on the wain
Blown back off course
By daily bag off wind
Now immune from Sirens
I accept a gift from the gods
Mount the Opica pony
Gallop from the off times
Racing from my trials
Reclaim my throne
In the land of slumber
My service civil once more
Pension postponed
Resilience restored
Odyssey ended
Hope prevailed out of the blue

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Bedroom Battleground
From a safe haven
To battleground
Beset by friendly fire
Former allies defect
As I stand guard
Pills of drowsy day
Confound night clock
Theatre of dreams
Unable to drop curtains
Encore endless
Restless legs
Bladder urgent
REM, ire
Night- time ghost
To dawns zombie
Half-life no life
I cycle eternal
Going nowhere

MY NEW JOB by my sister Cynthia, soon after her diagnosis 20 years ago**

I have a new job; I’m now a P.W.P ,
I didn’t apply for it, never sent a CV.
No interview took place, no job offer letter,
Not much information to help me do better.

No training was given to guide me along,
So it wasn’t surprising if some things went wrong.
It appears that the boss is a medical man,
Twice a year he advises, I do the best I can.

I didn’t want this job, didn’t know what to do,
But I picked up the routine, try to help others too.
Retirement time came, but no break from this work,
No holidays or bonuses, not one little perk.

I thought jobs for life were a thing of the past.
But, apparently this one, a lifetime will last.
But the backroom boys are studying hard,
And some kind of respite may be on the cards.

Those brilliant brains will continue to strive
For an answer - in ten years, or even in five.
We hope against hope that the end is in sight,
And P** eople W ith P arkinson’s will win the fight.

*Cynthia *