Mental Health Awareness Week is for everyone

We all take part in the lottery of life but we don’t get to choose our own ticket. We only get the one and like it or not we have to accept the balls that are drawn for us. We all have individual circumstances and during the course of life we all have the potential to face a myriad of health issues(both physical and mental). It is not as simple as those mentally healthy and those with mental illness. Often all it takes is different circumstances to change the issues we face. Instead of two groups we are perhaps one spectrum and many of us move up and down that spectrum.

 We tend to use language and imagery that creates the idea of a binary situation and polarises issues. Good and bad, strong and weak, healthy and unhealthy. People generally do not stay permanently in the same state and can also both or somewhere in between. Often our circumstances fluctuate throughout our life.

It is easy to judge others and I have previously written about instinct in Parkinson’s is Indignity(the example uses Parkinson’s but the point is general). We often evaluate others on limited information. We recognise the condition but fail to spot the individual behind it. We see the difficulties and miss the strength and determination that it takes to surmount them.

This is not a them and us situation. There are no separate communities of victims and victimisers, We all could be either. If we recognise our own behaviour, we will find things to be proud of and situations we could learn from. To build a society that allows people to be open and supported, we need participation and understanding. Life is interaction. Mental health awareness week is not just for those dealing with mental health issues but for everyone.    

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Calling all Parkinson’s Poets

Last night I was listening to the news whilst discussing our poetry on messenger with Neil Benny another poet with Parkinson’s. Simon Armitage was announced as the new Poet Laureate. Some of his words caught my attention when he discussed how he might use his stipend.
“something in the field of climate change” – either a prize or an event. “It just seems to me that it’s the obligation of all of us and every art form to be responding to this issue,” he said. “It shades into all our politics, so I want to find a way of recording and encouraging poetry’s response to that situation.”
This has been a subject that I feel passionately about and I was stunned by the necessity of our need to be prompted by Greta Thunberg. A young girl who has showed more conviction in a short life than most of us in our considerably longer ones.
I read with interest the poetry of others with Parkinson’s and I have seen a group of writers of honesty, who write with emotion and sometimes a rawness that make their poetry very personal. Some stick to raising awareness and communicating about Parkinson’s while some write on a more general basis.
I would like to ask you to join me to take Simon’s challenge. Together we can produce a collection of climate change and environmental poetry. We can use our collective voice to send our poetic message and add to the people already seeking for our planet to be treated with more restraint and respect.
Everyone who has raised money for Parkinson’s with poetry will know how hard it is to sell poetry. If we band together on this issue we can sell it on a wider basis and perhaps create more interest in our other works.
I would like to ask any people with Parkinson’s to send me poems on climate change and the environment, that they would like me to include. Please send up to four poems per poet by the deadline of 31 August 2019. This leaves some time if anyone wants to start writing some new work.
I will compile the poems and edit the book. Poems will not be changed (If there are spelling mistakes I will ask permission to correct them)but I will decide which ones to include. I will self publish on Amazon.to ensure availability worldwide. All royalties will go to Parkinson’s UK.
Please email any poems to me on a word document to jonbest13@gmail.com. Send with the poems a paragraph of upto 100 words about yourself(if you wish to have your poem included anonymously you needn’t do that). However I need permission to include it in the book and identity details to make that permission valid. If anyone has a poem but can’t submit it in the way I have asked please contact me and we will find a way.
Hopefully to provide some inspiration I have included a couple of my poems. The first is about Greta Thunbergs visit to the UK.

The Quest for the Phoenix

A winter song migrates across the world
Melody charms but warns of the albatross
Whose shadow looms above a coming menace
Ever closer with every wingbeat a base line

Fledgeling choir unites voices of the unschooled
Striking out to raise alarm, as world snoozes
Snooze you lose as they duck, billing platitudes
Song mistaken for clucking Chicken Licken

And yet the song is not a solo of youth
But duets with the voice of the wise old bird
An early bird who opened a can of worms
To polite applause but thoughts of what a hoot

The angry birds pause and pose for a selfie
Preening their feathers as they coo on message
Before flocking together flapping onwards
Vying for position to lead to the storm

The media has recently discussed solutions to plastic bag pollution as though that is the only issue. We need to address all our waste issues. I wanted to highlight another aspect

One Man’s Treasure

 

One man’s treasure

Fills his leisure

Gadget pleasure

 

A device for every task

An idea we didn’t have

A machine we didn’t need

A fashion that we must have

 

Shiny toys newer model

Apped devices are so smart

Short life span or obsolete

Technology forever

 

We fill our life with new desires

Casting aside our former pride

Out of our sight out of our mind

To a graveyard in another land

 

Whether broken, boring or bad ideas

Born of man’s own industry

Children of our factories

Transported across the oceans

 

One man’s treasure

With alchemy becomes debris

Yet components destiny

Another man’s treasure

 

Scoured and sifted for chance

That science can reanimate

Components reincarnate

Prophets recycle for profits

 

A land filled burnished under the sun

Bones bleached bluster laid bare

Electronic carcases remains piled

Parts cannibalised for reanimation

 

Ingenuity, entrepreneurs earns

Tiny tycoons trade in toxic city

A mercurial market of materials

Led to leadlined in fortunes quest

 

Rushed in roulette

One man’s treasure

Another’s poison

Thank you for reading

Jon

Shopping by Venn Diagram

 

As I stare into the mirror, the finely tuned, rugged, muscular, slender, athletic, Adonis is a sentence full of words that don’t apply.  Instead I am sentenced to a bodily tribute to the god of fun, beachball shaped, but with less bounce. The fittest part my belly because where ever I go it gets there first.  So why do I ponder my iconic shape?   I need a suit and nothing in my wardrobe fits. I have an invitation to a Royal Garden Party and a week ago I started my search for a suit whilst Tom my unconcerned cat slept in the window.

IMG_20190421_113104

 

Shopping by Venn Diagram

 

On that day it all began

The need for a masterplan

For a suit to look my best

There began a clothing quest

 

On that day invitation

With  dress code stipulation

I must wear a smart lounge suit

Would need new shoes can’t wear boots

 

After a brief wardrobe check

Discovered as I expect

Clothing of my past stories

Too small for future glories

 

Careful now not to take chances

My account lacks but balances

Made to measure not my route

Suit you Sir, the point is moot

 

Off the peg and from the shops

Department store my first shop

Before I try the trousers

Amongst jackets a browser

 

I implement my new plan

To shop by Venn diagram

Divide the suits into sets

From the middle I would get

 

Took suit buying elements

Consider what could be spent

Try on the suits for the fit

Did I like them final bit

 

Three things that must overlap

X marks that spot on venn map

This will help me to success

Find a suit that will impress

 

Those I like just didn’t fit

Belly too large just a bit

Slimfit not my strategy

Ones that fit were not for me

 

Didn’t like what I could afford

Came to a final accord

A new plan must stop and think

My large physique I would shrink

 

Like Arnie I would be back

Suits less tight create more slack

Venn diagram was a fail

Next time algebra avails

 

I decided to wait 2-3 weeks and see if I could become less beachball. So I will update you when I purchase my suit

 

Thanks for reading

Ps if you enjoyed this please consider my latest poetry compilation “Laughter the 2nd Best Medicine” a book full of light hearted poetry that I have written.  A book that I hope will share your smile. All my royalties will go to Parkinson’s UK.

https://www.amazon.co.uk/dp/1093153172

https://www.amazon.com/dp/1093153172

Take care

Best wishes

Jon

 

 

 

 

 

Parkinson’s is Indignity

The human body is a wonder. An achievement of nature we are yet to match. With all our knowledge and technology we could not produce similar complexity with all its nuances and capabilities. We cannot duplicate its’ movements and we still don’t fully understand our own thoughts processes.

We are learning all the time both individually and as a race. Yet sometimes we need to slow the race and look more closely. We need to apply active thought rather than automatically process the information.

I have Parkinson’s and Parkinson’s UK are running a campaign where People with Parkinson’s say ‘Parkinson’s is’ and describe what it means to them. Today I would like to discuss Parkinson’s is indignity.

We all get judged but sometimes people make harsh unfair judgements because of my Parkinson’s. One example is the impatience shown by people behind me at a till.  

My manual dexterity is not what it was and this can change my behaviour in small ways. When handed my change at a till as a combined handful of notes and coins it provides my hands with a challenge most people aren’t aware. I can’t hold the notes or change and put the other in my wallet. If I walk away trying to do it, I introduce another complexity.  Parkinson’s as well as making movements difficult can require us to give active thoughts to tasks we would previously have done as automatic. Adding simultaneous additional movement can disrupt that focus. That leaves me with an option of risking fumbling and dropping my money or putting my coins on the counter whilst I put the notes away.

I once caused chaos in a card shop when I fumbled coins into a card display at the till and struggled to reclaim them. Rude disrespectful mumbling sums up the reaction from the queue behind.   

Our reactions are often based not on conscious reasoning but on instinct. Our brains are wired to short cut cognitive processes and one way of doing this is by instinct. When we are born, we instinctively know that pain is bad, and our memories start to fill with experience that allows us to make decisions. There is so much sensory input sometimes we need to focus on a limited part of that and many of our functions are carried out, without conscious thought. Decisions are often needed fast so we use recognition to shortcut this process. Recognition allows us to respond to a situation based on experience. These thought processes can lead to us judging a situation on previous experience rather than fully assessing it. In other words, it is part of our standard thought processes to make assumptions.

People behind me in the queue often jump to the conclusion I am needlessly keeping them waiting whilst I put my change away. Impatience often lacks disguise and sometimes becomes openly rude behaviour.

I was asked recently if I considered the requests for more understanding of Parkinson’s and less judgements to be made because of a person having it, to be a paradox? I don’t believe that is quite what we are asking for. I believe we asking for respect as individuals but not to be prejudged on generalisations about Parkinson’s but treated with understanding for the range of issues it can cause,

That is a lot to ask but if everyone understands that reasoning can intervene in instinct that is a step in the right direction. It starts the journey from Parkinson’s is indignity to Parkinson’s is dignity and dignity is something we should all be entitled to.

Parkinson’s is Poetry

Parkinson’s UK are launching ‘Parkinson’s is’. This a campaign to increase the understanding of Parkinson’s as a serious condition. It invites people with Parkinson’s to say what Parkinson’s is to them.  On 11 April 2019 it is World Parkinson’s Day, and as someone with Parkinson’s who writes poetry, I would like to share my contribution.

Parkinson’s is Poetry

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

 

   

 

Warranty

I don’t feel guilty if I am faulty

I don’t have a warranty

but I am strong

 

I can shake just a tremble maybe dissemble

but I still resemble

A man with pride

 

Parkinson’s is with me

Brings symptoms a plenty

It does not define me

It does not confine me

I will not resign me

To give up on life

 

Future uncertain hidden behind a curtain

There is no reverting

But I won’t give in

 

Take medication,control situation

Still crave the sensation

Of living life

 

Parkinsons is with me

As is my dignity

It is not the whole me

Look past it and see me

Engage with and meet me

See my smile

 

I know my value I will not wallow

Parkinson’s I swallow

It’s my destiny

 

So come take my hand walk across the land

Life I still command

See the beauty I see

 

See the beauty I see

Hope the reality

I still remain able

I don’t need a label

Condition stable

Come sit at my table

Raise a glass to life

 

 

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

 

 

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

 

 

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 preconceive

 

If you would like to know more, information about Parkinson’s can be found at

 

http://www.parkinsons.org.uk/

 

Thank you for reading.

All shook up

I would like to tell you about a book called All Shook Up written by a lady called Sue Hammond. The book is a collection of poetry that aims to take the reader on a journey into the physical and emotional challenges faced by people with Parkinson’s.  All profits will go to Parkinson’s UK.

The Introduction Poem is a modest evocation of Sue’s intent. The book then moves on to 17 poems by Sue about her Parkinson’s. Poem’s of her struggle and determination.  Poems of honesty and bravery.

IMG_20190403_211710

This is followed by 5 poems by Sue about other subjects.  An important part of the book because everyone with Parkinson’s has more than just that in their lives. This is followed by poems from 6 people who post poetry within the Parkinson’s UK Online Forums including two of mine.

This is a well thought out, honest informative book that achieves all its intentions, Copies may be obtained from Amazon if you would like one. 

Please email Susan Hammond at   susanworsdall29@outlook.com

One of my poems included in the book is

 

Strictly Dancing on Thin Ice

 

A new partner to dance a fandango

Legs tangle when I try to just tango

Rumba in the style of having drunk rum

Shaking away to the beat of that drum

 

Dancing on thin ice but then I just freeze

Stuck in the moment until I move my knees

Freestyle as my body bust a move

In time with the Dyskinesia groove

 

Jazz hands with an arm that does not do swing

Robotic movement turns out is my thing

The slow step has become the new quickstep

Bradykinesia brings new concept

 

So join me come and dance on the thin ice

Belly dancing I will need some advice

Take the floor with Parkinson’s, you can lead

Time to enjoy that is all that you need

The Insanity of Teabags and the Superheroes

 

 

Life is full of madness. Even my teabags are insane.  I take a new box and it says “tear here and tuck in.” With the amount of tea, I have drunk in my lifetime if tucking in to a tea bag was a good idea I would know it. Sorry I digress.

I seem to have a new symptom. I call it the 12 year itch. Twelve years ago 29 March 2007 was the day I was diagnosed with Parkinson’s. I can tell you Dr McMahon’s words.

“When I read your notes, I didn’t expect you to have Parkinson’s but now I have seen you I can confirm you have Parkinson’s. We will do some tests. I am certain though that you do have Parkinson’s.”

If not, his exact words they are close enough. Dr McMahon was the expert. An experienced and highly respected consultant. I didn’t know what to expect and left the appointment slightly disorientated. Peoples reactions were worse than the diagnosis. The closer we were the stronger the fear.

None of us have the benefit of hindsight but now I can look back with experience. I could find some statistics, but I am not a statistic I am more than that.  Experience of 12 years has taught me much. In 2015 I wrote my first book. Still unpublished, Silverlinings was the story of my first 8 years from the diagnosis. It’s title reflecting that the diagnosis was a silver lining. It was not the start of my Parkinson’s but the start of my awareness of it. The first opportunity to respond to it. My book title grew into Shakesandsilverlinings becoming this blog.

If I look back at the last 12 years, I am content. A trip to Machu Picchu, self-published poetry books, a change in job and so much more. 

If I look forward, I am not afraid. I just have this itch. A new symptom and E45 cream proves ineffective. This is no rash but a touch of impatience. I expect more success with my work, with my writing with my life. Life however comes at its own pace.  I have many opportunities for expanding my life. I will soon be self-publishing another book, “Laughter the 2nd best medicine” and this summer I am due to go to a garden party at Buckingham Palace.

 I have reached year 13, Maybe that is unlucky for some. Thirteen is also known as a baker’s dozen and maybe my reasoning is half baked because today I will celebrate. I am not celebrating Parkinson’s in anyway. I am celebrating myself.  

In this coming year I will continue to work helping people where I can, providing whatever support I can offer to others. I will continue to write seeking to improve my writing.

 Everyone faces issues of one sort or another at some point in their lives. Often all that can be done is to get on with life. Your effort and perspiration can be others inspiration. So this is for you for what you have done or what you will do. Join me today and celebrate yourself.

 

Superheroes

 

Superheroes they get everywhere

Have a power they don’t share

Without a power not so tough

We are made of stronger stuff

 

Batman against Superman

Bat can foil the superplan

Never trust a man in tights

Rod of steel could cause frights

 

Superman was a pioneer

Double bagging his idea

Sagging tights not a chance

Held in place by underpants

 

Spiderman he could do

Anything spider could do

Catching criminals no way

Fly infestations have to pay

 

Superheroes that we Marvel

Most have lost some marbles

Iron man insanity in creases

Without help pressing ceases

 

The hulk so strong goes green

Yet his superpower is not clean

Leaves a trail of devastation

Tracks of anger across nation

 

Now there is a real leg end

Somethings a foot I won’t pretend

Captain tremor is my name

New superhero yet to find fame

 

 

Wishful thinking is my power

Put things right within the hour

My power sometimes fails

Wrecks my marketing sales

 

Another talent that I can make

On my own a handshake

Actually more a supperhero

Before bed reduce larder to zero

 

Ordinary people extraordinary

No powers yet don’t tarry

Face the world with strength everyday

Reality tops fantasy come what may