World Poetry Day

World Poetry Day

I am just an unknown amateur poet. There are many more skilled and more inspired. I write to entertain you, make you smile and share emotions.  I write to educate, comfort, engage and sometimes to disagree. I write to express myself and I write because I want to change the world.


Spring is when life is reborn

Time to let go the things we mourn

Hope is like a butterfly

Beautiful but vulnerable flutters by

Butterfly blown off course by wind

Tries again and wont rescind

Life survives and life renews

Life continues and life ensues

That butterfly will lay its eggs

Hope will grow with caterpillar legs

Hope when ready will transform and fly

Hope continues another butterfly

All seems quiet all seems dark

But hope will overcome when life is stark

Hope seems lost but can be found

Your life can turn around.

Do not let your fears blind

See the beauty keep in mind

There is always a butterfly of hope for you

Give you strength and see you through


I see ghosts

I see ghosts everywhere

Haunted by death

Haunted by Life

Some ghosts are just echoes

Or reflections

Haunting only one

Invisible to others

The ghost of

My former fitness

Invades my mind

Reminding of former glory

Joined by

the Ghost of my marriage

Bringing thoughts of

Happy family days

I could banish them

With the holy water

Of amnesia

And push them away


My own personal


Are surplus to



These memories

Are part of me

Make me smile

No regrets


Embrace your ghosts

They remind us

By ghostly comparison

Why we live



We hunger for hope

Kill with chemicals

Data brings death

Empathy absent

Corporate cogs

Manmade machines

People the parts

Human resources

Technical hostages

Slaves to our machines

Social media

Breeds human AI

Plague of cataracts

We turn the blind eye

As we disconnect

But what can we do?


Believe in yourself

Have faith in others

Invest in mankind

As kindness prospers



One Eye


With one eye half open

Shadows play through curtains

Creatures born of the dark

Need the light to frolic


Echoes within my mind

Recall the day long past

When hope and care bound two

A knot of gentle love

Swells my heart full of pride


Smiling as I recall

How two became three

Trinity of daughters

Dad’s delights Dad’s weakness

Years pass, smiles last


A hand shakes karma quakes

A tremor I can’t quell

Fear comes so near

Joins as I try to bear

The weight my curse imposes


Unlike the shadows blend

Duality can’t mend

My strength is no comfort

To those scared of its loss

Maybes, disguised worries


Smooth pebbles on a beach

Sound calm as tide rattles

Belies attrition

Remorseless over time

Pebbles of love erode



Two now snared as one

Feelings and memories

Tangled like fairy lights

Some bulbs broken parted

Sadness broken hearted


Rebuilt refresh renew

Start again loping on

Not future, knot the past

Anniversary day

Fades in the new dawns light


Echoes echo softly

Echoes always with me

Eyes are open for hope

New echoes created

As I climb out my bed


Over a barrel



One word

One purpose

Can we get a handle on it

Some will cry freedom

Some cry for those ,lost

As they roll out the barrel

Bullet in a china shop

Ricochet randomly kills

Trigger finger points to death

Tool with a hammer to fall

Cocked as a rite. Right to life?

Men claim for self protection

Butt can they holster egos

Or find the range to target

Not fake news the headlines fire

Full content of magazine

Emptied as gun salutes murder

One purpose

One word




Armadillo on my pillow

I couldn’t sleep
Open eyes peep
On my pillow
Was an Armadillo
I said no
You have to go
He just sighed
And then replied
Stay awake
For my sake
Because you snore
All the more
Close your eyes
And my sleep dies
I turned away
What do I say
Under the moon
Me it did spoon
As i slept
It still kept
Body next to me
Like cutlery
The armadillo
On my pillow



Soul Cradle

My soul cradled in the love
of those close to me
Rocked gently
by their blessing

Soothed by their warmth
Strengthened by their faith
Nourished by their hope
My souls burden lightened
by their good wishes

My soul cradled in the love
of those close to me
Never alone

Thank you for reading. Please feel free to leave comments.
Best Wishes

How to be me? (Part 3)

Part 3

My Conclusions

I ended part 2 by saying my love for my family, my sense of humour, my kindness all remain. I am still me. 

My personality may change as my life moves on. It is important to see past the Parkinson’s to the person as perspective can be as important as reality. I have spoken to many people with Parkinson’s who struggle with apathy. It is hard to understand if this hasn’t affected you, but the key word here is struggle. I struggle with apathy because I don’t accept it. It can affect my behaviour but it doesn’t define me. It is part of my life and part of Parkinson’s but it is not part of my personality.

My behaviour is influenced by external and internal factors. I can behave differently to cope with limitations including my Parkinson’s. It is important that we with Parkinson’s do not blame ourselves by integrating effects we can’t control into our personality. If we can think through the position we are in we can remind ourselves who we are. It will easier for others to see us rather than Parkinson’s if we can see it ourselves.

The future may offer further changes to my personality but I believe the core of my personality will continue to survive and evolve, If we recognise the factors affecting us there will be some we can affect.

We can’t freeze our personalities in their pre-diagnosis state but we can look to understand where we have choices because there is much that is not preordained.

Thank you for reading. I welcome comments so if you have any thoughts please leave them here.

Best wishes




How to be me (part 2)


Part 2

My story


I was diagnosed 11 years ago and have had some of the issues listed in the introduction.  Parkinson’s is a complex condition and we don’t all experience all the symptoms.

Personality is not a fixed situation we do change as we experience life and changes may happen anyway. My father as diagnosed with cancer and at the time I felt he had changed. In his younger life he had seen terminal cancer in his family and seen loved ones suffer. His diagnosis brought his experiences of cancer to the surface and naturally he reacted to them. This is an extreme example but one that demonstrates these sort of changes are not exclusive to Parkinson’s. 

Anyway back to me and this will be from my perspective. When I was diagnosed I felt I was hurting my family this was not a conscious thought but I felt somehow at fault. This changed my goals a little, with me wanting to prepare my family for a time where I could do less for them. I don’t see this as personality change as it arose from my love for my family and any other threat to my future could have produced the same impact. At odds with preparing them to manage without me I wanted to do things for them while I could. 

Role change also had an impact. Parkinson’s can change your role but it is more complex. It’s not only your role but your perspective of it. I will go farther as others perspective is impacted too. In the period before my marriage broke up my step daughter was diagnosed with an autoimmune condition that is as serious as my Parkinson’s . It must have seemed an incredible weight on my wife shoulders facing a future with two close family members with health conditions. It was a couple of months later that I felt perceptions of me had changed. For example my driving was an issue. I could accept it changed but was horrified when it was suggested that my different opinion on my safety was reflecting a lack of care for our children’s safety. My driving behaviour was different more less confidant but my care for our children had not changed. 

The biggest personality/behaviour change came after my marital separation. Emotionally I withdrew. I became less reliable at work as the apathy set in. I suffered compulsive behaviours. Some of these issues I would have had without Parkinson’s. Some were worse because of it. The compulsive behaviours were not complete changes but I was not capable of applying the same level of control to behaviours I was prone to.

Again, perception played a part. Smaller factors like my quieter voice, not smiling as much, not talking as much whilst driving the car suggests I was less engaged but actually they were all physical symptoms. Tiredness was the worst physical symptom robbing me of the ability to respond to the situations with any meaningful determination.

I got through that and now after changes in my medication things are different. I’ve changed again and different to the person I was before Parkinson’s but most of the important things are the same. These include my love for my family, my sense of humour, my kindness. I am still me. 

How to be me?

Part 1

The Introduction

This is the introduction, the first of three blog posts on” How to be me?” The second will contain my story and the third my conclusions.

One of the biggest fears of having Parkinson’s is losing yourself. The thought that Parkinson’s can change you has crossed my mind and it’s a scary thought. Parkinson’s makes changes in the brain, the medications act on the brain.

It is perhaps unreasonable for us or those close to us to expect that we can somehow refuse these changes in a way that we can’t with physical symptoms. I believe however that we can, like physical symptoms, at least minimise the impact and the fear by being realistic and understanding some of the things that happen to us.

As well as physical changes, there are what we call non- motor symptoms and these are non- movement related symptoms. This includes depression which affects mood and can change behaviour. Another possible effect is anxiety.  Whilst loss of confidence can accompany physical symptoms too, non- motor symptoms can exacerbate this in some cases, in turn making you less decisive and outgoing.  Apathy affects the motivation to get on with or initiate tasks. The final non -motor I want to mention is a decline for some in cognitive function, I’m talking short term memory, inability to call up words or names, plan or even multi task.

If you combine these issues with medication side effects such as impulsive behaviour, hallucinations or lack of sleep. The combination must have an impact.

Personality and behaviour are related but have different meanings. Behaviour is what we do but personality is who we are. There are many definitions of personality some definitions include habitual behaviours. It is important to consider not only what we do but why we do it. Parkinson’s is a complex condition so there are many factors that can impact. If we can recognise the factors we can see past Parkinson’s to the person behind.

In part 2 I will use my own story to illustrate the effects these factors can have.


Jon Best

Unfinished Business

Some of my blogs feature poetry and today I would like to show you a couple of poems by Michael Topa. Michael is a poet who like myself posts on a site called Rhymezone. Michael’s poems often have a spiritual aspect that is thought provoking. It can lead to poems containing big ideas but yet are engagingly intimate.

The following poem Gratitude comes from his book Unfinished Business.


We must not forget the first photons who
Emblazon elsewhere toward eternity or

Our atmosphere’s frail cocoon sheltering
Us from catastrophic harm yet each breath

We take contains its own architecture of
Great hopefulness for all life remains a sacred

Blessing that casts its mysterious net between
Sentient creatures we must give thanks

For a chance to put down our diurnal wares
To unearth words in careful scriptural exegesis

Let two luminous lives construct a simple
Dwelling wherein love has found its sanctuary

I am not going to try a detailed analysis. It is not my strong point and I would rather you
concentrated on the poems themselves as your own first hand views are worth every bit as much as mine.

The Beginning of Life on Earth

In your touch
I relive the havoc of meteor showers
Striking the nascent earth

In your kisses
I feel the fragile atmosphere set ajar
By sudden lightning storms

From volcanic depths
Torrents of Methane Carbon Dioxide
Hydrogen Sulfide
Blanketing the sky then
Water vapour
Coalesced drifting down

To gently accumulate in craters
In the crevice of your love
I am consumed by a joy
That does not lend itself easily to speech
Mysterious as first life on earth
Looked back at from afar

This is another poem from Michaels book. Michael’ s poems tend to be hugely personal expressing his own awe. His poems have played a part in my own development as a poet. He has taught me that there are no themes too big for poetry.

Jon Best

Parkinson’s Jigsaw



I recently wrote a post for the Start Living Today PD group called Parkinson’s Jigsaw. The point being that if you were troubled with cognitive issues there were a whole range of factors that could make up the puzzle.

My interest began when I became one of the contributors to Parkinson’s UK creative writing toolkit. The aim was to encourage engagement and improve the quality of life. I am a member of a couple of Parkinson’s closed Facebook groups as well as using the creative corner on Parkinson’s UK forum. Writing blogs, short stories and poetry is used to communicate and share. It provides a mechanism for engagement -reading other’s work leads to a feeling of sharing and understanding. It allows the processing of difficult Parkinson’s issues.

This led to me thinking about whether you could help cognitive performance by staying mentally active. Using it so you don’t lose it. There was no research to support it but anecdotal evidence suggested this may be a  good approach. So I became the co-ordinatoor of Start thinking today PD(a part of SLTPD).

I started to encourage cognitive actities but like the physical side of PD there is a wide spectrum of symptoms and I quickly discovered one size didn.t fit all.

So I started to explore the cognitive tests. These are the tests used to diagnose if there is a cognitive problem and what area of thought it affects.

The cognitive tests usually show a correlation with how far the person went in education and this is a generalisation I have asked about this and the response I had was that achievement was in line with the ability to use mental strategies and problem solving. The thought being that those who learned strategies in earlier life have more tools to use their cognitive abilities.

Going a step farther have those who have cognitive issues the ability to relearn. The answer is maybe. If someone has forgotten the alphabet they may be able to relearn it by singing it. It is possible writing helps by increasing neural pathways giving more links and providing a stronger base for retaining word knowledge.

It has become clear to me that anyone who has/ or thinks they may already have cognitive issues needs to ask their GP/consultant to arrange the tests. Without that nobody can advise what the needs are.

.Another cognitive factor is tiredness and how “off” they are. Cognitive achievements are higher when we are at our best. This is important because if someone has cognitive difficulties if they can align tasks with feeling at their best they will achieve more. This could be doubly important because as soon as we believe something is beyond us it is.. So retaining confidence and self belief is also important.

This takes me to another point as our cognitive abilities can be affected by such as depression( or anxiety both common in those with PD. The ability to initiate can be affected with feelings of apathy or perhaps the inability to know how to start a task. Behaviour can change sometimes due to impulsive behaviour caused by medication. There is a range of factors that are interconnected.

I have also learnt of the struggle those suffering from cognitive abilities face. There is a lack of understanding from others and a loss of confidence.That can be very isolating so we are lucky on the SLTPD group that it’s founder Heidi has decided to publicise her own struggles and include details of the cognitive tests. It is very brave of Heidi to be public about something so personal to try and calm others fears.

I am not claiming we can hold off dementia but I do think we can perhaps maximise the effectiveness of our cognitive abilities. The results of the cognitive tests can help to pinpoint strategies that can assist. Sometimes it is small things that help. An example is it is better to ask a specific rather than a general one. Ie Do you want Indian or Chinese for dinner?, Would be easier to cope with than the open question “What would you like for dinner?

As well as strategies we need to take exercise as studies suggest it improves our cognitive as well as physical abilities. Getting the best sleep we can also help. Creative writing has much to offer if we choose to use it but nothing is better than a well balanced active life.

Where does this leave me with Start thinking today PD? I can’t promise that using cognitive abilities will stave off dementia. We can still encourage using cognitive abilities but I think we should broaden the scope to other strategies to help positivity and mental health. Mindfulness is a tool that may be useful.  We also need to encourage positivity and engagement

The best way forward is an engaged positive approach to a well balanced life. Easy for me to say harder to achieve but worth the effort.



The Woodcutter

The Woodcutter

In the not so distant past the woodcutter stared at the clear morning sky  before gazing across at the woodland trees bereft of their leaves in midwinter. He looked at the small woodpile realising it needed replenishing and it was best done before the weather changed.  He grabbed his hunting knife and his small axe and set off into the bleak woods his feet crunching leaves underfoot as they slowly slipped from Jack Frosts clutches.

The woodsman had already scavenged the closest woodland and would have to go farther for more windfalls He would only cut a live tree out of necessity so he scoured the undergrowth for fallen branches.  Deeper  into the wood he trod  past the cave of the hermit . Empty for years but the footprints of his presence still visible in the ravaged devastated  shelter a little further on. Torn apart by the village youth when they grew brave after his departure. The woods had once been a hub of activity  but now it’s ruined mine workings silent dilapidated and invisible overgrown by nature.  A stone tossed over the wall surrounding a disused mineshaft finally clatters to the bottom. Will it wake a sleeping dragon . Maybe not today.

Patrolling his territory keeping the paths clear and  finding branches along the way trimming them with the axe to make them easier to carry home. Hearing a noise he stands surveying silently in the pose of a meerkat before hurrying on to the woods edge.  He inspects the holes deep into the hedge two of the tunnels used in the night as the Badgers forage. Marking the earth with their claws as they searched  for food.

Moving on he reaches the platform in a tree and scrambles up it.  He can see for miles across fields and woodland  all is quiet on this chilly day.  He climbs down and peels some bark  from a birch tree. Paper thin it can be used with thin twigs instead of paper to start a fire, but not today with no leaves on the trees the smoke may be visible from a distance.  So he plods back gathering a few branches dragging them home whilst watching and listening  for the monsters of the wood. He is yet to see them but he knows they are there. One day who know what could happen.

He arrives home and gets a saw and whilst cutting the wood into logs a voice calls from the house “Jonathon  where have you been?” The 9 year old boy replies” nowhere Mum just got some firewood.“


This was part of my childhood. I explored woodland , climbing not only trees but water wheels, fished in lakes and streams, lit fires, built shelters, accidentally entering abandoned clay dries, no field had a hedge that couldn’t be climbed over . Boundaries were for other people   A tractor in the field oh shit keep walking  head for the gap in to the next field.  I was rarely challenged.  I had quite a large territory  and no one knew where I was . I had freedom , no social media and no mobile phone.  I had some instances of bullying in my childhood but here I was king. I was in my own Kingdom and couldn’t be touched. Even now I sometimes retreat to quiet places where I can just drink in the  solitude.

I could never give my children quite the same freedom.  In this day and age I would have a visit from social services if I gave a child a sheath knife. Yet to me it was a tool. I could make a bow and arrow.  Although my accuracy with any bow I made was lacking.

I live in Cornwall a beautiful place and although things have changed I urge you to give your families the freedom and opportunity to be free. Children have the benefit of a sense of wonder and if you let them use it , it will always be with them. In these days of constant demands of modern life and the controlling aspects of social media. Maybe they need it more than ever.

The past few years I have posted a Xmas message and although late this is it Merry Xmas and a happy new year.

Love to all