Write of Passage

For a writer whether poetry , non- fiction or fiction it is an ambition to be read . Not just read but appreciated for the communication of information or feelings. Publication becomes the holy grail for some writers.

Just over a year ago I finished writing Silverlinings  the story of my first eight years with Parkinson’s. In October last year a colleague and I produced an illustrated children’s book Sweet Dream’s for Jago. I have been seeking publishers for both of them. Submitting for publishing is another writing skill. For this you need to be able to write a  marketing  plan varying it for each company. Although I have had some nice feedback I have had no publishing deal. I am still looking to get publishers for those books but I still felt it was time to explore self publishing.

I chose a German company with an English and a German website. I had used the English one for printing books and was happy with their quality and the upfront fee was minimal. After uploading files having sample books sent to me  I pressed ahead. Six or seven ago I self-published a collection of poetry called Hope and Inspiration. I waited for this to appear in the UK and US  listings on Amazon. It never happened the German company decided to close their English side of the operation but did not say upfront. Instead they put the book through their German processes and it appeared on the German Amazon but only the German one.

Elation became deflation but I was not defeated. I trawled other websites and decided to use Amazons own and yesterday it appeared on  the Amazon UK website at

https://www.amazon.co.uk/dp/1521124973

and in the US at

US https://www.amazon.com/dp/1521124973

I believe it can also be found in the French, German, Spanish, Italian and Japanese Amazon sites.

So please have a look and if it appeals then pleases buy it .

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Off Peake Award

Poetry Competition for People with Parkinson’s

I am calling all Parkinson’s poets to invite you to submit a poem to my poetry competition. Usually Parkinson’s UK run the Mervyn Peake Awards Art Competition but they have paused it this year. So to help fill the gap I offer you the Off Peake Award.

The Off Peake Award is a poetry competition for anyone anywhere diagnosed with Parkinson’s who has written a poem they would like to submit. Full details of how to submit are given below.

After 30 June  2017 the submission deadline the winner will be chosen and will be sent a copy of Michael H Lester’s poetry book Notes from the Commode- volume 1 , an entertaining collection of good humoured poetry. It can be found on Amazon at the following link.

https://www.amazon.co.uk/Notes-Commode-Michael-H-Lester/dp/1540820270/ref=sr_1_1?ie=UTF8&qid=1490057252&sr=8-1&keywords=Notes+from+a+Commode

The entry fee is a minimum £2 donation to Parkinson’s UK to be made via my Justgiving site at:-

https://www.justgiving.com/fundraising/Jon-Best1Offpeake

I would like to wish all entrants good luck. Please ensure you read the submissions guidelines below as any entries not following the rules for this competition may be disqualified.

 

Submission Guidelines –

The Off Peake Award is a poetry competition for people diagnosed with Parkinson’s

All submissions must be your original work and be unpublished.

Only one entry is allowed per person.

Poems can be submitted from anywhere in the world but  the poem must be in the English Language

Submissions may take any poetic form but competition organiser Jon Best has the right to the decide if any piece is not poetry and exclude it from the competition

Deadline for inclusion in the Off Peake Award is Friday, June  30, 2017(12midnight UK time)

The winner will receive the first prize as advertised

An entry fee of a donation of at least £2 should be made to Parkinson’s UK via the just giving site

https://www.justgiving.com/fundraising/Jon-Best1Offpeake

The poem should be submitted by email to jonbest323@gmail.comfrom the email address provided with the donation to ensure submission and donation can be matched.

Please include your name, email address, city, state, and country in the body of the email when you submit the poem

Your subject line should read “Off Peake Award- [your full name]”

Submissions will be considered by the judges appointed by Jon

Winner will be announced by 30 September 2017

Subject to limited re-publication rights, all rights revert to the author on1 October 2018.

You must be at least 18 years old to submit

Thank god for the C word people.

If  any of the content seems offensive please read through to the end  and if read in context it should all make sense. If you are also wondering why three blogs in a week, I haves posted more than usual to mark Parkinson’s awareness week in the UK.

Carers? What does that mean to you? This is not intended to decry those loved ones and family members who provide so much love and support.

The people who help us(those with Parkinson’s) don’t aspire to be carers. They do it as wife, daughter, mother, husband ,son, father friend. My Mum is an example. I am separated and have no partner and my Mum(85 this year) comes over every  Saturday. When she arrives she always resumes her fundamental  avoidance  of my armchairs and sniffs out the opiate of undone housework with all the efficiency of the police sniffer dogs. Okay I will admit that if a blind person gave their guide  dog time for a nap then the blind person could probably find things that need doing without the guide dogs assistance. My Mum irons shirts leaving them mostly done up so I can just pull it over my head when I put it on. She prepares veg for the dinner and we often do extra portion or the freezer. She does more but you get the idea .She is being my Mum not a carer. In many relationships the Parkinson’s person may have help and can’t offer the same in return but often do co-operate and take part. I thank everyone who gives help I just don’t want to call them carers.

I have my reasons for this and it stems from the wheelchair principle. This is where the person pushing the wheelchair automatically gets more respect. Despite most people being aware of this pitfall we often fail to address this. The same sort of unconscious bias seems to exist when you designate someone as a carer.

I not only have a perspective as a person with a condition but also see the other side. My 21 year old daughter has a rare autoimmune condition which is likely to have a more damaging  effect on her life than Parkinson’s does on mine. The condition is rare so there is less knowledge and support available to her than there is for me. Her Mum and I both help but she would not think of us as carers because she is an adult who runs her own life.

This will be my third and final awareness week blog . I would just like to thank everyone who made a contribution to this week and wish any still undertaking events the best of luck.

 

Take care

Metaphor

In my last blog I discussed the importance of James Parkinson’s work and how he began the move forward to treatment, understanding and support.

It is interesting that 200 years later we are still naming Parkinson’s. We are doing more than giving him a name. We are making him a conscious entity. Looking at my own work I have used many metaphors.

My will

Spectre who hovers over me

Seeking to annoint wth his name

He whispers to my unruly limbs

Hissing poison as they listen

Shakes me to taunt me its puppet

Biding its time to tie more strings

Punch and Judy but not today

No Thats not the wayto do it

Sleeping shrinking rest not assurred

Drowsy autopilot unfit

To halt reprogramming as the

Apparitions Avatar

Spectral reality strengthens

With each new physical conquest

Its controls forming day by day

Its substance filling night by night

Yet I look into a mirror

Shocked that its face is my face

It has no will and no intent

Remorseless yes cognitive no

Yet I need a foe to fight with

To focus and have a battle

To celebrate my victories

Frankenstein I have to become

Create the monster in my mind

Worthy cunning adversary

Who can only exist with my leave

I will be here until the end

Whatever Parkinson’s will bring

It may restrict me with limits

Identity, memory, my self

Will always remain by my will

 

 

I noticed that I was not alone in using metaphors. It is a common practice amongst the Parkinson’s poets. I found the same thing with those who write blogs. More interesting is that many who do not consider themselves writers also use this approach. Many posts online refer to an unpleasant individual called Mr P.

The metaphors usually involve a creature with an awareness, a being who is conscious of what it does and has a choice. As the mechanism for Parkinson’s is not fully understood we face a process we don’t know how to influence. Yet remaining positive is kind of the holy grail. If you don’t you shut yourself down and the more you lose in terms of fitness ,the harder it becomes. So by animating Parkinson’s as a character you can influence it for the good.

Exercise and any therapy which helps only maintains and cannot show the benefits on a day to day basis the only proof is to stop and deteriorate.So faith and hope is important. When we animate Parkinson’s it is as a monster as this aids our motivation. I think of it in a comparable way to propaganda where we have created monsters of our enemies. This type of  thought process happens but I have never seen it discussed so I wanted to explore it. Thank you for reading and would love to see your comments .

James Parkinson

James Parkinson

Today is a significant date. 11 April 1755 was the birth date of James Parkinson.  James the son of an apothecary and surgeon published “An Essay on the Shaking Palsy” in 1817 establishing Parkinson’s as a recognised medical condition.

James was the author of many political pamphlets highly critical of the system of the day and advocated reform.

 

It is now 200 years since the publication of his essay and an appropriate day to celebrate his achievements.  Can you imagine what living with Parkinson’s in those days. No treatments, no understanding no support. Three not so wise monkeys, on the backs of those affected.

 

Today things are very different. There are treatments, understanding and support but we are not there yet. We still need more research for cure. So if anyone reading could spare a donation please use this link to Parkinson’s UK

https://www.parkinsons.org.uk/content/invest-our-research

Please share this with as many others as possible.

 

The Key

Groundbreaking

Innovation

Genetic

Information

Deep Brain

Stimulation

Levadopa

Destination

Stemcell

Generation

Research key

innovation

Breed hope by

Donation

 

If you can donate any money you give is more than just a donation. It is message of hope.

Thank you.

Tomfoolery

Tomfoolery

DSCN8540

Tom my cat has had an undignified couple of days. The vet recommended he had his right eye removed. He had no sight in the eye and   it had been injured in an earlier point in his life before he had been known to my friend who took him in and then passed him on to me. I had him for 6 months and the vet warned me that this type of injury could lead to a tumour. Six months later something seems to have put pressure on the eye and displaced the pupil.

Wednesday night I had to take his food bowl  away.and since then he has not had aa good time.

My cat has to wear a collar

I can hear his mind holler

The vests was an indignity

Let me out I want to be free

Back to the start of this tale

Tom cat had eye op couldn’t fail

Would not get into the pet carrier

it became quite a barrier

From night before had been starved

No meat treats had been carved

Food in bowl his hallucination

Put in carrier for following in

Half way in he did brace

So with effort on my face

Shove from behind hard i did

Across the floor his carrier slid

Until it reached a wall

As I prepared to give my all

Knelt by mistake on his tale

Yelped and inside didn’t fail

Tom has an eye for the vet

No sight in it so no regret

Vet had started the rumour

It might start a tumour

Without it he did not stress

But hang on i most digress

Because the collar went on

Gymnastic floor show bring it on

He twisted turned and whirled

Still around his neck curled

He walked several times

It clung a s though a crime

So poor Tom must wait

Until wound sealed it is fate

Hard to walk,wash,sleep and eat

Collared Tom won’t taste defeat

DSCN8544

 

So why have I written about this today? Tom’s collar restricts his movement by catching on things, make it difficult t clean, eat and rest.  Not good when h doesn’t know what has happened and why. I wonder how he feels? When I was diagnosed with Parkinson’s ten years ago before diagnosis I thought something was happening to my body but didn’t know what. So being told I had Parkinson’s brought a cloud into my life. That cloud had a silver lining because knowing I had Parkinson’s meant I could be treated. It may only help with the symptoms but it is better than being like Tom frustrated and confused. That is why the book I have written about my first eight years after diagnosis is titled Silverlinings and also explains the title of my blog.

DSCN8535

Cover is blown

Today is a good day for a Parkinson’s blog. April Fools Day. Parkinson’s is the jester in the court of my life His jokes at my expense often ironic sometimes lack humour. A fool who pops up all over the place  Today I am going to get in first with my pinch and a punch for the first of the month. Sorry am just waffling, I will now get to the real point of today’s blog.

 

Today as I reflect on the last week I think back to Sunday. After playing badminton I shuffled along returning home from posting some letters, I passed a stranger who asked if I was ok. Accepting my single word “yes” reply he carried on. I thought that was sort of nice but realised non disclosure is no longer a choice.

 

I have a choice of silly walks but when I am tired I tend to drag my right foot a bit and my stride is shorter. Add this to the lack of swing in my arm as I walk, tremor, voice weak when tired and sometimes looking a bit vacant. This can leave a number of tell tale signs of my Parkinson’s.

It is not just the gait but a whole gamut of indicators. Thinking back to three to four years after diagnosis, I had a phone conversation with the local Parkinson’s Information officer, where she struggled to accept I had PD. She was all old school friend and we both had children in the same Brownie pack and our paths had crossed several times but the Parkinson’s wasn’t evident to her. Today that is not a choice although there are times when it is not obvious there are too many giveaways for me to go under cover.

 

Parkinson-James Parkinson

I have been a secret agent

But have had to relent

Too often it’s plain to see

I am shadowed by PD

I started with a secret hand shake

My arm swing I had to fake

Shaken but not stirred

PD the secret password

Licensed to chill(actually to freeze)

Restaurant booby trapped with peas

Blunt knife take away finesse

Smell a rat but not with ease

Undercover with PD

Bladder phone rings urgently

Voice quiet to keep secret

Tablet to ensure no regret

Movements slow can’t out run

Permanent bug hasn’t won

Out in the open, My cover blown

Understanding never alone

 

So what does it matter? I don’t want to pretend I haven’t got Parkinson’s. People treat you differently though and how they treat you depends on what they know. If they know little assumptions can be    made that I am drunk. Some people go in to parental mode and start to treat me like a child. When I am dating some ladies run a mile. If I tell someone I have Parkinson’s very early it can seem as though Parkinson’s rules my life.

I am more self conscious than I used to be. Eating in public can be embarrassing. Finding it hard to cut up food, clumsiness with the fork, clumsiness with putting it into my mouth, compulsive eating due to medication. I never used to feel this way. I do my best to eat in a seemingly civilised manner but beating myself up over it is pointless.

There is no definitive answer. In truth, who knows about the Parkinson’s and what people see is out of my control. Judgements are made about people without Parkinson’s. So all I can do is correct any false impressions I see and concentrate on me. There is no point trying to control everything I can’t. I may not like how I sometimes appear to others but that is life. I have much to be proud of and will keep my head high, because I know the people who have the information to judge value and respect me.

I would advise others don’t fight battles you can’t win. Save your energy Try not to worry about others views, your own is more important. Tell people when you are ready you decide.

Thank you for reading

Jon

Ps there will be another blog very soon within the next couple of days. An update on Tom and also shortly after a post to launch a poetry competition. The Off Peake Award. So please follow if you can

Take Care