Parkinson's Is Poetry thread 2019

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1

As you’re probably aware, we are launching ‘Parkinson’s Is’, a campaign to increase the understanding of Parkinson’s as a serious condition on Thursday 11th April which is also World Parkinson’s Day. It’s important that we place people with Parkinson’s at the core of everything we do and as such, we’d love for you to use this thread as a creative outlet for some amazing poetry about what Parkinson’s Is to you.

We’ve already seen the excellent poetry that has been produced in the ‘creative section’ on the forum; however, unlike that section (which is the only private category on the forum), the poems on this thread will be made public to inspire more people affected by Parkinson’s to join our supportive community and to hopefully flex their own creative muscles. We will also be using some of the content produced on this thread to help raise awareness on this campaign via our social media channels but will ask for you consent before doing so.

We can’t wait to read more of your great poetry!

If you have any questions on this, please feel free to ‘@’ me and I’ll respond to you as soon as possible. :blush:

Best wishes,
Reah

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2

This was written some time ago, just after diagnosis trying to explain the things that had worried me when the hospital neuro at first assured me I did not have Parkinsons. I was recently retired, my children grown and gone… I should join some clubs.

My internal twin.

I stand in the middle of the road
A23: two streams before me and two behind.
Double deckers, delivery lorries, removal vans–
Huge threatening monsters
Running so close.
My island is very small
When the monsters gang up on me.
I am under attack – frightened
So scared inside – intimidated.
My internal twin needs allies and so
Hands Parky control of my feet.
I am shocked
My feet are turning me sideways
My hands are twitching, lifting –
That internal(infernal) twin
Wants ME to push the traffic away.
Stand still you fool,
You know that’s stupid
But I’m finding it hard to listen to me. There’s a bus coming now
And Parky doesn’t like it
My feet are moving again.
Stop it! Please don’t push that bus!

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3

Hi @Mosie,

Thank you such for sharing this! I’m sure it will resonate with many others.

Best wishes,
Reah

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4

I was diagnosed 5 yrs ago with pd and spent the first 4 yrs caring for my father who had pd but who sadly is no longer here
Who, s the boss
I am number 9 in my family tree
To be diagnosed with pd
While none of us are the same
We can’t find anyone to take the blame

But blaming someone is not for me
It is, nt really my cup of tea
I, d rather try to find a way
To make it easy every day
As the days are just so long
You find your head playing ping pong
Things go round and round your head
Before you know it it, s time for bed

But try as you might every night
You get no rest because of this pest
The pest is known as pd
And I, m damned if I, ll let it beat me
Peter c

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5

Parkinsons is wondering what on earth is happening to me
Parkinsons is not knowing what is wrong but knowing something dreadful is on the way
Parkinsons is not recognising my own behaviour
Parkinsons is wanting not to be that thing which I am becoming.

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6

Hello Reah
Not my best work as it is a bit ‘off the top of my head’ so use it if you wish or store it in the bin!!

Consult the real experts

So you’ve been told it’s Parkinson’s
And everything’s surreal
Emotions running wild
You don’t know what you feel
Well there is a place where you can go
To ask whatever you need
Or open up that pressure valve
And set your anger free
Perhaps you need to weep some tears
Or seek a comforting hand
Come take a look and you will find
The best experts in the land
No appointment or referral
Confidentiality guaranteed
Come and go just as you like
And all of it is free
It’s the Parkinson’s UK forum,
It’s simply an open house
For those living with this condition,
Or family, friend or spouse
For we are the ones who really know
What Parkinson’s can do
So take a look and please join in
We wait to welcome you
And by the way we have fun too
With a place to relax and play
Where you can smile and laugh
And say ‘guess what happened today’
And if you have a creative side
Be it drawing, prose or rhyme
All are welcome to share it here
Talent not essential as is clear from this poem of mine!!

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7

No-one has to face Parkinson’s alone

……
No-one has to face Parkinson’s alone

Ask for help pick up the phone

Call friend family or Parkinson’s UK

Someone available everyday

…
In the Uk about 127000 of us here

Too large a community to live in fear

See how you can help each other

Give a hand not too much bother

…
Parkinson’s people lack dopamine

A vital chemical in the brain unseen

Needed to help the brain co-ordinate

The body or it can get in a state

….
Tremor rigidity, slow movement

Plus a whole range of ailment

No two people are the same

Different rules to our Parkinson’s game

….
So take the drugs the medication

Thanks to the carers for dedication

It’s good to remember there is always hope

One day a cure, ‘til then we cope

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Thank you all for the amazing poetry - your creativity is so inspiring and I appreciate your willingness to share your experience with Parkinson’s with everyone.

Please keep the poetry coming! :blush::slightly_smiling_face:

Best wishes,
Reah

9

Overheard in a hospital corridor.

It’s the cheerful one next, isn’t it?
We’d better sort that out for her-- ho ho ho
Who is she?

Well, I am what I am,yet what I am I know not.
They say I am a peewip --pwp
Patient with Parkinsons.
No-one is patient with Parkinsons.
My toes curl, my foot claws, my hand shakes
And I wear an invisible diving suit
One of those old ones made of lead.
I drag it with me to the bus stop
And then back home again.
I have read all the pamphlets, heard all the advice
“You will feel better if you stay positive”
And no doubt dear I would stay positive if I felt better.
You should try dancing/singing/get a bicycle
And ride off on a trip for the day.
Yes I heard about that Dutch research.
Problem is , riding a bike makes your hair curl over there.
Pilates it seems is old hat
The exercise bike boring and static
Why must I always do more?
What about my garden?
Did I tell this one about my garden?
I can’t remember, GP nurse and neuro
Which gems have I bestowed and where?
Not that I lie to anyone – oh no!
I live alone
I take my pills
I have no problems
I’m fine , really, fine
F I N E
Fed-up, ill, neurotic and exhausted
(Yes I play the word games)
I need to make a better show at my next appointment–
Hair cut, nail lacquer
I’ve never used much slap,
Perhaps new shoes, new bag–
NO CONSPICUOUS CONSUMPTION
They’ll ask questions about online shopping
But what else to do at two in the morning?
Don’t ask that blonde one, she’ll suggest writing ‘purtree’.
So, tarted up, I smile along
Lovely day, isn’t it?–
Shaking my umbrella on the mat,
For this time of year, really mild.
Blank carved face, throat clearing, grunts.
“Listen my dear”, huge sigh
"Listen carefully and try to understand
…realistic grasp of the situation…
…you need a big hug…
…I’ll make you a nice cup of tea…
YOU CANNOT STAY IN DENIAL FOR EVER
Bastard
You could have let me try.

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10

A la carte

…
James Parkinson Master Chef

The band play the smooth jazz clef

Choose from A la carte menu

The waiter handed to you

…
Starters include loss of smell

Writing gets smaller as well

A jazz singer starts to sing

Jazz hands but the arm don’t swing

…
Main courses follow all unique

Dropped plate smashed just like Greeks

Shakey pie or tremor surprise

No sir does not come with fries

…
Side dishes though include Jerky

You have a beef, no turkey

Hard to swallow, start to choke

Pour the Heimlich, a wine joke

…
Vegetables on the side

Peas on fork, must open wide

Fork to mouth and peas to floor

Try again and then drop some more

…
Grip the knife as though to stab

Cut to bitesize fingers grab

Giving up on cutlery

Menu had no dexterity

…
Waitress brings dessert trolley

Some may freeze would be folly

Chefs special makes you fumble

Trying Parkinson’s crumble

…
Wait for bill and drink coffee

Costs a mint it’s not for free

Hunger unsatisfied sure

Appetite unfilled by cure

11

Footprints

Shakes my hand
Doesn’t shake my soul
Live to thrive
Peace is my goal

The sun rises
Shining solace on my face
Causing smiles
With a warm embrace

In five years
Where will I be
The future
Haven’t met can’t see

See my footprints
Come walk in my shoes
Track the hope
See my good news

Every morning
Opportunity knocks
Despite Pandora
Opening Parkinson’s box

Be proud
Of all you achieve
Believe in yourself
Don’t preconcieve

12

The Dickens of a disease

….
Our mutual friend

Is futures ghost

As evil as Fagin

The mystery host

….
Parkinson’s

With hard times grip

Bottled krook

Battles hero Pip

….
An Artful Dodger

A thief you can’t stop

Do they stock answers

In old curiosity shop

….
Chuzzles your wits

Makes you mumble

Life feels heavy

A heep of humble

…
Dedlocked in a bleak house

A debtor’s prison

Have a sham

Grooms Symptoms

…
Great expectations

Please sir I want more

End with a Twist

Please sir I want a cure

13 
         The fighter

It, s hard to describe the feelings inside
When all you want to do is run and hide
But you have to stand tall
And shoot from the heart
Otherwise it will tear you apart
Especially at night
When you can’t get to sleep
That’s when the hill seems so very steep
But climb it you will with all your might
You can never give in
Or give up the fight

Petec

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14

Parkinson’s is…

My way of life these days
Not one I would have chosen it’s true
But that’s the card that I’ve been dealt
And so today I say to you
Don’t look at me with pitying eyes
And think that I don’t see
Or talk at me like I’ve lost my mind
That you no longer see just me
What makes you think I don’t know
These days I’m rarely still
And that my body dances to its own tune
And frequently ignores my will
That as time goes on I’ll need some care
See spontaneity lose to plans
Just to manage everyday things
Being led by other hands
It’s too easy to see my future
In a purely negative way
And if you think that is my life
You forget that’s not today
What makes you think
I have no fun, with laughter a memory
And unspoken but in your heart of hearts
You’re thinking ‘thank God it’s her not me’
But make no mistake and heed my words
Though Parkinson’s marchers on
You underestimate what I can do
To make sure it sings my song

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15

Hello, I wrote these pieces of poetry quite a while back, probably at the start of 2018. They were written while I was feeling quite low for many different reasons, including Parkinsons which has had me in it’s thrall for 10 years. I have never written poetry before in my life but somehow managed to write all this over the course of a few weeks! I have penned about 15 I think. But I stopped after a few weeks and haven’t written since.

SOMEONE, SOMEWHERE**

Tomorrow is the day someone will tell me what’s to be**
Someone will tell me, finally**
What will become of me**

And somewhere in a building not very far from here**
Awaits another story which is just for me to hear**
Another man, just like the one of ten years ago**
Will tell me things, just like before, but**
With this time a different foe**

Mr Parkinson’s was first to come, oblivious to the fact**
That I can’t stand him near me, but cannot leave this Two Man Act**
And now it seems I must prepare for Two Men To Be Three**
Am I so devastating they cannot keep their hands off me?**
What on earth makes me the lucky one to have such special luck**
When all I want to do is duck out of here or say swear words like ‘’’’**

These men who bring such special news**
These harbingers of doom**
Are fully aware of what it is they bring into the room**
They have no choice for it is their destiny to be**
The special ones who study years to try to make us free**
Of aches and pains and horrid ills that have no place to be**
Among us on the earth when all we want to do is try**
To live our lives, knowing**
With certainty, as each day we strive**

Tomorrow we will thrive.**
(This was written while awaiting a cancer diagnosis, which was received in September 2018).***

This one says it all about having Parkinsons or other afflictions and then seeing friends disappear before your eyes…

WE MUST CATCH UP**

Was there ever a sentence so lost in the mire**
Of smug, self importance and manners so dire**
That all sense or humanity has now fled the room**

To be replaced with ‘let’s catch up’ and said with such verve**
That it makes you quite breathless to consider the nerve**
Of the person behind this mask of insanity**
Trotting out all this rubbish amid personal vanity**

When all it would take if she could just see**
That people like her are just people like me but less so,**
Because they are missing**
That chip of real kindness that shows in the face**
Of those who extend it**
With warmth and with grace to those who may need it**
Much more than you know…**

So don’t ‘catch up’, treat me with respect**
Sit with me, talk to me**
Be more select**

Then we won’t need to catch anything but our breath**

And lastly, this one says it all too, about people who sometimes can treat us too casually, cruelly (perhaps without knowing it) when we are no longer the same in their eyes.

WAS IT SOMETHING I SAID?**

Do you think there’s something in the water?
Does the weather get you down?
I wonder if you’d come around the next time you’re in town

The fact is though
You don’t come round any more
And I don’t know why
We’ve been friends a long, long time and I thought that guaranteed a position of importance and not this lack of need

Entirely it would seem
You just don’t seem to care
Where I am or what I am
Or what I do when I’m there

It cuts me to the core, I don’t think you can know
How much this grieves my heart
For it appears to need you, so
If you’ve voted with your feet as they say (so throwaway)
Then I find I really don’t know how to act or what to say

Except

Was it something that I said?

I have tried to explain
How the way my mind behaves these days can often times betray
My body

As it gamely soldiers on, acting like it’s still ok
When you know damn well it isn’t because I trip along the way

You have another friend these days and this has dealt a blow
To pride
It’s all I have some days and that’s a fact, but you wouldn’t know
Or care, for you have moved along my friend

When things no longer suited you, in the end
And you and I both know, so don’t pretend
The two of you are having fun and getting out

Doing things we did

And you don’t miss me for a minute
I’m sure of this, I have no doubt
But my heart feels ripped out from my chest

I don’t think you can know
We could never be the same again
Even if you wished it so

But you won’t, we’re done
The pain of this has cut me deep
I’ll always miss and but the memories I will keep

Have fun with your friend
And don’t look back
Because I won’t be here
Not me, this sad old sack
I’ve had enough of hearing lies and waiting for a phone to ring

And I bet one day you’ll be sad for us too, old thing…

There’s lots more and some are actually funny !! But I really hope you liked these.
Michelle

17

Hi,

I would love to contribute - what a great idea.

Poetry continues to be my saving grace - ever since 5th November 2015 - when I committed to writing at least one poem a day (of varying qualities and on very diverse subjects).

Poetry is my daily cognitive exercise - not sure if it is working on that level long-term, but it works in many other ways to give me purpose with this disease.

My aim is to complete 10,000 poems - and then stop - my work in progress is here:
www.mikebellpoems.com
So far about 1,300, with a few published in the UK & USA.

I attend and give poetry readings - great for voice control and self-esteem - as well as contribute to various publications.

I do have an entire lump of my writing ‘about’ Parkinson’s - HERE - but other subjects are covered too - which have been touched by my changed world.

One for now …

Zero Four Thirty

For a man who has done his natural duty,
death is as natural as sleep. GS

Here we meet again
you no longer a friend
you jolt – a waking itch
this drugged portend

This unnatural discontent
which sleep is for me
it is a sickly thing

It is as if rest itself
is my disease

It is as if my register
of a simple expectation
of a longed-for sopor
no more allows it to admit

Yet we will drift in daytime’s
impolite light
with eyelids weighted
by the night
just enough to stop me seeing things

This puzzle of so many pieces
which darkness has become
You – my new foe –
my agonist – my bedlam

Mx

18

Oops! Missed out poem before! Parky’s head?

PARKINSON’S IS -

  • LOSS OF IDENTITY

I AM ME

‘They’ are described as one and the same.

I am not one of ‘them’.

I am me,

just me,

one of many, but not one of ‘them’.

I am a cog

in a big wheel,

performing a task,

the same task as millions more,

making the world go round.

I am an ant

working so hard

completing a job,

a job undertaken by

ants everywhere, so industrious.

I am a book

an open book,

there for all to see,

an easy read for most,

one book in a public library.

I am like you,

a real person,

a human being

like so many others,

making my way through this life.

‘They’, they described as one and the same,

they have the same complaint.

I have too;

but I,

one of many, am not one of ‘them’.

PARKINSON’S IS -

  • SADNESS

SAD

Feeling so sad…

How deep is sad?

So deep you cannot reach its end

So deep it hurts, it cannot mend.

It penetrates all around,

And suffocates, gone to ground.

Always there, it waits its chance,

Follows you, about to pounce.

Can you fight its deadly gas,

Floating by you as it has?

Does it leave you in a trance,

Hurting in your heart perchance?

It is too deep for a measure,

The lack of it - priceless treasure.

PARKINSON’S IS -

  • TIREDNESS

TIREDNESS

Tiredness beyond belief, outwith the land of make believe

Resources pulled, to and fro, sure to make this tiredness go

Its strength, its depth, power too, prevent defeat- kind of voodoo

It seeps into empty head, possesses it; head goes where led.

Tiredness, you are unkind, to treat me like I’m slow of mind

To render me of no more use ,but fair bait for some abuse

To cause me such time to lose, my head can’t think, full of ooze

To finish me then as I sing, and dance and strut joy to bring.

Tiredness, you know me well, I run, I jump, a story tell

I read a book, study hard, play games and try to be a bard

Until you come, on me prey, and I fall right down by the way

My life on hold while I rest, recov’ring from unwanted guest.

PARKINSON’S IS -

  • A BURDEN

A HEAVYWEIGHT

Parkinson’s is for me -

The sum of many little things,

That grow and grow, until it brings

A weight too heavy to withstand,

A weight you cannot understand.

Little things grow in size…

No longer can I smell the scent

Of springtime flowers so recent,

Or aromas from food just cooked…

Now country smells are overlooked.

Parkinson’s is for me -

Not being heard with voice so weak,

Cannot converse, feel like a freak.

Can walk quite well, but not so far,

Must lift legs high, struggle out of car.

So it is all the time…

Get into bed, but getting out?

The same with bath; what’s it about?

Take care with walking lest I fall,

It does not seem much at all.

Parkinson’s is for me -

Another burden on life’s way,

To be dealt with every day,

One I know will always be there,

Forever and ever there t’ scare.

Not a tremor as for some folk,

But a long lasting cruel joke,

That pulls the chair from out behind

And leaves me there just to unwind.

Parkinson’s is unkind…

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19 
 This place

Though we all suffer some terrible woes
There is always someone there who knows
Exactly what,s needed when you find things hard
They will always play the right card
They speak from the heart and help you out
This is what this place is all about
They lift your soul when you feel down
So when you sign off you,ve lost your frown
So you pick yourself up and dust yourself down
It,s onwards and upwards minus the frown
I feel so much better i may hit the town
You never leave here still feeling down

Petec

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20

Great poem Peter

Babsx

21

Thanks babs hope you and Phil are well had a problem today struggled to hold cup even with 2 hands glad finally found Keith, s problem now at least they can now get him right meds mam heard from chest clinic needs another cat scan end of May before attending clinic
Pete and mam