Parkinson's has opened a poetic part of my brain I didn't know I had! I literally wake up some days with a poem in my head and write it down. Most are personal reflections of life or inspired by my experience with learning to live with Parkinson's. I try to keep a positive approach to my style and write as I feel.
Family and friends have encouraged me to share these and so in June 2020, during the pandemic lockdown, I produced a small booklet of poems called 'Crazy little thing called LIFE!' and raised over £800 for the local Swindon branch of Parkinson's UK. If you would be interested in a copy please contact me at ParkiesPals@outlook.com
Here are some samples of my thoughts and ramblings of just what does go on in my head!
I've written this in April 2021 for World Parkinson's Awareness to try and give a feeling of what it real feels like on a daily basis!
Shuffle in My Shoes
It’s World Parkinson’s Awareness week
So I’m asking all of you,
To just think about a Parkies day,
To shuffle in my shoes!
I wake up stiff and rigid
Until meds kick me out of bed.
I stretch, I cycle to make legs move.
I clear the dreams out of my head.
My day is made up of 4 hourly bites,
Between the ringing of meds alarm,
Mornings are best to get things done,
When movement smoother and more calm.
Evenings are more difficult
Carpet worn with shuffling walk,
A glass of wine sure helps me to relax,
And goes with my slurred and quiet talk!
Some days I can move freely,
Smiling wide and hold conversation.
Other days I could curl up and sleep,
Struggling with sheer frustration.
So don’t judge the stumbling walker
Or the slow person in the queue.
They may be Parkies People
So take a step in their shuffling shoe.
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Wrote this for World Parkinson's Awareness Day 2021
Parkies Pals poetry in slow motion
When Parkinson’s enter into our lives
It effects every moment of every day,
It effects every movement in our body,
It effects every thought and word we say.
Parkinson’s is no respecter
Of the hopes held in our heart
It doesn’t care what dreams we have,
It tries to rule us from the start.
It takes us down the slow lane,
Sometimes freezing us in our tracks!
Makes simple tasks so ruddy difficult,
And we can’t remember simple facts!
But what we do have is our Parkies Pals,
We understand and really care,
A group of friendship and support,
You are never alone, we’re always there.
_____________________________________________________________________
Wrote this in January 2021 after being introduced to online scrabble!
Something’s keeping me from sleeping.
Its 5am I’m wide awake
What IS wrong with my brain?
Somethings keeping me from sleeping
It’s driving me insane.
I block my mind , count fields of sheep
Recite the alphabetic table!
Somethings keeping me from sleeping,
I’m sure I’d doze if I were able.
I try to exercise in the day,
Both physically and in mind,
Somethings keeping me from sleeping,
It’s becoming a real bind.
My skin looks tired, my hairs a mess
I’m sure I’m aging years!
Something keeping me from sleeping
Perhaps growing old is my fear?
I make a list of jobs and reminders,
To try and clear my head.
Somethings keeping me from sleeping
Despite a lovely comfy bed.
So I’ll stop late night online Scrabble,
Have hot milk instead of tea!
I think the something that is keeping me from sleeping
Could possibly be ME !!
_______________________________________________________________________
Family and friendship are most important in my life.
True Friendship
True Friendship is precious with no price tag attached.
True Friendship is timeless and cannot be matched.
Such Friendship is earned through respect, love and care.
Such Friendship is lifelong, with experiences to share.
Through good times and bad, through laughter and tears.
Always there with a hug and great listening ears.
True Friends support never judge; know if it needs coffee or wine!
I am so ever grateful for such True Friends of mine.
___________________________________________________________
I wrote this in the early days of my diagnosis when I was still trying to work out just what I had and how to live with Parkinson’s
Life Behind the mask
Where does Parkinsons come from
And why did it come for me?
I don’t smoke, do drugs, I try to keep fit!
Enjoy a wine or the odd G&T!
Parkinson’s does not discriminate
Doesn’t care about race, sex or age
It switches off your happy cells
Makes your face freeze like a blank page.
It slows down all your movements
Brain says run but your body says walk
Some have the joy of tremors
Loss of smell and slurred talk.
No cure yet just a gradual decline
Not a killer, so thankful for that.
But a condition you do have to live with
Reliant on meds and Neurologist chat!
I try to be a positive ‘Parkie’
Take my meds, keep mobile and fit
A sense of humour is truly essential
And basically I just try to get on with it
Life in the slow lane does takes some adaption
With family and friends helping keep up the pace
There are worse things out there that can get you.
So I try to enjoy life and keep a smile on my face
_________________________________________________________
Exercise is key to managing Parkinson’s. Essential for health and mobility.
Exercise the PD Way
Exercise is good for you, you hear everybody say.
Exercise is medicine and should be taken every day.
Exercise IS good for you, of that there is no doubt,
But exercise the PD way needs a bit more clout!
So take that step, reach for the sky
Walk it, cycle, swim it, run,
Just remember to tell your brain
That you are really having fun!
You don’t have to run a marathon
You don’t have to run at all
Cycle, swim, dance those steps
Or join local walking foot ball!
So let’s motivate each other
To stand when we could sit
Look PD right in the eye -
We may be slow but boy we’re fit!!
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Update on life with Parkinson’s 2020 (3 years since diagnosis)
Parkies Progress
Sometimes I despair at my lack of courage and brain!
I just can’t find the words that truly explain
Just how I feel in my lost dopamine world
Where shuffling is the way with joints inwardly curled.
Where thoughts and actions are laborious and slow,
When your body stiffens to stop but your head says ‘go’!
When you stumble along with staggered pace,
When you try to smile with a frozen face.
Emotions run high, irrational thoughts fill your head,
The meds can cause obsessive behaviour it’s said.
You get sympathetic looks as you carry a tray,
When walks that took minutes almost fill the day!
Hanging clothes up is another slow frustrating task,
Making beds up, a joke, I know friends would help if I ask.
I try to keep positive thoughts, keep healthy and fit,
I try to find silver linings, keeping a sense of humour and wit.
I find music a real solace, walk to the beat,
Headphones and trainers and step it out on the street.
One comforting fact is I am not coping alone
There are far worse things out there I really should not moan!
I’ve met other Parkies who live near and far
I’ve a great group of ‘Pals’, you know who you are.
So despite my anxious moments and sloth like way
I do try and make the most of each and every day.
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I wrote this in memory of my amazing mum in November 2017
Dear Mum …
Dear Mum I hope you can hear me?
As I feel you each day in my heart.
I try to do things you’d be proud of,
As in my life you play such a big part.
I miss your comforting counsel
I am missing your listening ears
But most of all mum I miss those big hugs
And the love that we all hold so dear.
I am proud to call you my mother
My mentor and friend through and through,
I hope I can pass on your values
Of what life, family and friends meant to you.
I try to keep a positive attitude
A smile on my face from the start,
Dear Mum I know you can hear me
As I feel you each day in my heart.
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