The works on this page have been created by members of Parkinson's New Zealand.
Parkinson's Awareness by Sandie Jennins
Pardon me if I seem to glare
It’s what they call the Parkinson's stare
My face muscles don’t work as they should
I’d smile more often if only I could
There are exercises that I can do
Usually in the privacy of my loo
Not all Parky people have a shake
That’s an assumption most people make
Slowness of movement and a strange walk
Being a bit spastic with a knife and fork
Are some of the things Parky’s symptoms create
Tripping, falling and fumbling is part of our fate
Dopamine is the substance that we are lacking
It's what normal brains produce to keep us moving
We take little pills of a chemical called Levodopa
That acts like Dopomine to keep us acting proper
They can take up to an hour to work their magic
And wear off again in 3 hours which can be tragic
Parky is like your batteries getting low
Charge us up and watch us go
Trouble is the batteries start to wear completely
As the years go by even the pills act weakly
But an operation where electrodes are placed within the brain
Is an option to get us back to working again
Parky is a nuisance and can be a pain in the neck
We can get aches all over in fact, but what the heck
You don’t die of Parky, you just have to live with it
The best is to never give up what you do and keep fit
There are worse things in life than Parkinsons Disease
Compared to some people, we live with relative ease
It is a progressive disease, how quick we don’t know
We just have to make the best of life while we can still go
If you are unfortunate to discover that someone you know
Gets diagnosed with PD, while it is a terrible blow
Encourage them to continue life as they have been before
Keep them involved, don’t let them hide behind closed doors
Sandie Jennins 2016
A row of bottles by Anonymous
A row of bottles on my shelf
Caused me to analyse myself
One yellow pill I have to pop
Goes to my heart so it won’t stop
A little white one that I take
Goes to my hands so they won’t shake
The blue ones that I use a lot
Tell me I’m happy when I’m not
The purple pill goes to my brain
And tells me that I have no pain
The capsules tell me not to wheeze
Or cough or choke or even sneeze
The red one, smallest of them all
Goes to my blood so I won’t fall
The orange one, very big and bright
Prevent my leg cramps in the night
Such an array of brilliant pills
Helping cure all kind of ills
But what I’d really like to know
Is what tells each one where to go!
A Tale of Long Lost Piglets by Lyn Riley
Three years ago Auckland City Hospital was preparing for clinical trials of pig cell treatment for Parkinson’s. At that time I was one of the volunteers for this ground breaking procedure when they were ready to trial it in humans. Unfortunately for me, a routine blood test lead to further investigation which confirmed I had another medical condition (in addition to Parkinson’s) making me ineligible for the surgery. However I have since followed progress in newspapers and TV with great interest. I wrote the following poem for all involved just before the clinical trials began.
Last night as I lay dreaming, I heard the strangest sound
The Whir and Flap of many wings
Lifting off the ground.
I turned to gaze upon the sight - Winged Piglets everywhere!
They said to me “Come fly with us,
But only if you dare!”
We were joined by Kiwis, levitating with the herd
Was I hallucinating?
“Aren’t they a flightless bird?”
One piglet gazed into my eyes, he seemed to know the score
“Spokespiglet at your service ma’am,
I know the plot and morel
We need the kiwis’ GPS to guide us on today.
We’re Auckland Island porcine stock
And we don’t know the way.
We’ve tackled diabetes and now we’re on a quest
Parkinson’s is next in line
And after that, THE REST!
We’re on our PD maiden flight, and you can tag along
We’ve got our take off clearance now
How could we all go wrong?
Our mission’s high priority - we’ll give it all we’ve got
We’re off to tackle Parkinson’s
We’ll give it our best shot.”
The piglets' wings were flapping hard and to my great surprise
The kiwis joined the lift off
All heading to the skies.
I tried so hard to join them too, but earthbound I remained
I tried to run beneath them
But lost the ground I’d gained.
They faded into distant skies, intent upon their fate.
Providing cell technology
For symptoms to abate.
They fly with one man’s vision, Prof. Elliott is he
Now aided and abetted
By The Team at M.D.C!
So I am on the sideline now, new project underway
Training “Pig Cell Cheerleaders”
It’s filling up my day.
When the pigs succeed for us, we’ll have a big parade
PWP’s from everywhere
Will truly have it made.
If you don’t believe me, I assure you that it’s true
PIGS CAN FLY, l’VE SEEN IT
Now would I tell “PORKIES” to you??!!!
The Movement Disorders Clinic Team, Auckland City Hospital
Professor Bob Elliott (Living Cell Technologies NZ Ltd)
Clinical trial participants
The Auckland Island pigs
You’re all Stars!
I remember you Ali by Gordon McTavish
I remember you Ali
I remember when you beat Liston, I was young then
and I knew you only as Cassius Clay
I did not know that we would fight
the same opponent one day
I knew nothing of your struggles
with prejudice, bigotry and racism
but I know all too well the struggles
you faced with Parkinsonism
then I entered the ring with you
not as an opponent, but as a fellow fighter
in a fight to the death with Parkinson's
That contender with no fatal flaw not even a glass jaw
We can only spar with this insidious degenerate
block his punches, ducking, weaving and shuffle with fast feet
To go the full 12 rounds with that beast is the best we could hope
And a split point's decision against you is the best you can get
But you were the greatest,
you fouught the good fight
Until the last bell
you never threw in the towel
And gave us all reason to fight
your daughter Rashida came to deliver a message
for those in our corner;
family, caregivers and most of all our children
to better understand this brutish opponent
we all face in the bout of our life
I don't know the words which you might use
But here in New Zealand we say
Kia Kaha--be strong
You have given us strength
you were the greatest you still are the greatest
You were the champion of the world
you are still champion of my world.
Gordon McTavish 2016
Living with Levodopa by Fran Allcock
It's Parkinson's Awareness Week
and I wanted you to know
what it's like to be the host
of my personal Parknison's Show...
It's like taking a delinquent with me
everywhere I go
and even if I plan things well,
he'll still sabotage the show.
Some of the tricks he likes to play
are clear for you to see
but like the tip of an iceberg
there's far more under the sea...
My gait becomes uneven
and I start to drag my feet
He'll make me spill my coffee
or drop my food when I try to eat
Sometimes I could expire
from my increased body heat
for my thermostat's been broken
to make my misery complete!
I might begin to slur my words
or forget them when I talk
And if I go to turn around
I'll inevitably balk
Sometimes he gets into my eyes
and steals away their twinkle
Sometimes he sneaks into my face
and steals my smile's crinkle!
He'll make my writng tiny
till it's a squiggle on a page
and he's no respect for anyone
anybody, any age
He likes to take my muscles
and screw them in a ball
He likes to push me over
just to see if I will fall
He shakes me like a washing machine
with an out-of-balance load
and there are times when he's in control
and I hit the shut-down mode.
So I take him everywhere I go
...and try not to take him home!
And I've told him many times
'just bugger off and leave me alone'!!
I've become a dopamine junkie
to try and keep him at bay
and I take my levodopa
several times each day
But there's a dyskinetic secret
to my levodopa high
and I can't control these movements
no matter how hard I try
So I'm swinging and I'm swaying
and dancing out of control
and flinging myself around the room
like a dyskinetic rag doll
Oh, when I think of how I used to be
and how my life has changed...
if you saw me without knowing this
you'd probably think I was deranged!
So know you know a little more
about this Parkinson's joker
and it's like for those of us
who are living with levodopa!!!
Fran Allcock 2015
Nicola Levens submitted this work:
The pic shows a person with early onset Parkinson's and them thinking about what lays ahead for them with having early onset Parkinson's.
Nicola Levens submitted this work called Aspirations.
Having early onset Parkinson's, I am still the same person with aspirations and dreams. My goal now is to encourage more people to learn about early onset Parkinson's.
This is a poem by Beverley Fraser (see also below)
The Parkinson's Path
We are travelling on our path through life
No two of us alike
We’ll have our different twists and turns
It’s more than just a hike
We all have different loads to bear
And often have to rest
Weighed down by all our grief and pain
The journey’s harder than we guessed
Sometimes a light surprises
As we turn around a bend
And find there is a change in view
With the warm clasp of a friend
Just as the clouds can hide the sun
We know it’s always there
So too our Lord and Saviour
Who’s borne far more than we could bear
We wish we knew His healing power
In our hour of pain
We wish He’d lift this heavy load
And set us free again
But we know He walks beside us
Willing to share our load
We simply have to take His hand
He’ll lead us down the road
When the sun upon us smiles
With courage we’ll rise high
We’ll reach out with a hand of love
To those who cannot fly
The path goes on and so do we
We take each bend where're it goes
Where there’s a choice we only have
To ask the One who knows
This poem was written by a member from South Canterbury
Walking home from church I fell in the gutter
On picking myself up I was heard to mutter
'Why don't you lift your feet instead of shuffling along'
Swing your arms and get with the throng
Then Parkinsons was diagnosed as the dreaded disease
As my daughter declared I could shake the cocktails with ease.
Writing is getting more difficult day by day,
Instead of the neat script I used to display
I now have a tiny scrawl that no one can read,
Even myself has a lot of trouble it seems
While a magnifying glass might be of some use
If it wasn't for my computer my writing would be of no use
I'll not let this beat me 'oh no',
I'll carry on forever even though I am really slow,
I've taken on painting which brings comfort and joy
and I have found a passion for painting old homesteads
that would have been someone else’s old pride and joy
Card making, embroidery and gardening are my escape
I can even see paintings out in the landscape
I have learnt to laugh at myself and have fun
I will not let this beat me as I sit in the sun.
I have a lot of living to do, conquering
dressmaking, gardening and embroidery to name but a few
and with three little grandsons to encourage along the way
Hopefully they’ll find a cure in my day
For now I'll make the most of each day and live it to the full.
It's not going to beat me 'oh no'. I'M NO FOOL.
Gwenda Morris 2012
Let’s Rock ‘n Roll