Puzzled

 

This seems to be my default look. I remember the comments of my latin teacher years ago. For most of my first year with him he thought I didn’t understand then was surprised at my good marks in the end of year exam.

With Parkinson’s your face can become less expressive  and people can make assumptions. Look a bit confused if so life can act as a confusion multiplier and make it worse. I went to the cinema recently and just before the film I took a comfort break  and as I returned to the film I must have looked puzzled, because as I tried to re-enter the film the attendant stopped me and said I was going  back to  the wrong screen. Confused I tried to reply but all I managed to say was “Murder” and luckily she realised that was me trying to tell her which film I was seeing and not a threat. She apologised and I continued along to the right film

So why did I mention this? Well we all judge by appearance. Our brains are trained to make assumptions so we don’t try to assess everything,  Our brains put things in groups so we recognise generic information. It is pretty automatic and it can be hard to get away from preconceptions. If nothing else misunderstandings can be  a learning opportunity. So have faith changing mindsets can be a slow process but it is worthwhile.

A short blog this time so here is a recent facebook posting of mine to flesh it out a bit.

A new craze is sweeping the nation its called Xmas present Treasure Hunt. Anyone can play just order something on line and see if it turns up.You too can come home to an email saying it has been delivered and Guess what- Oh no it hasn’t but they tell you Oh yes it has- It is pantomime season. So you check around the outside of the house ask the neighbours. Then you decide to email a friend or a friendly customer service rep at the parcel compay for a round of you signed for it- you already know how this goes-Oh yes you did , Oh no I didn’t -as they show you a strange signature that almost looks like No 10 but I live at number 202. After failing to work out the clue you wait until the next day and hey presto outside your backdoor is your own parcel. They have crushed your box-cue Kenneth Williams OOoooh Matron but thankfully its contents are undamaged, Probably an inappropriate attempt at using the catflap So watchout because you too may get to play Xmas present treasure hunt.

 

Thanks for reading.

Best wishes

Jon

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Who needs catnip when you have catnap?

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t’s a good life being a cat you can sleep when you want, where you want how you want. With Parkinson’s not so simple. Daytime tiredness due to meds, not sleeping at night due to Parkinson’s combined with fatigue and you have Parkinson’s unholy trinity. You too can be a daytime zombie but without the immortality(thankfully also without the biting}.

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I have been there done that and slept in the Tshirt. There seems like there is nothing you can do and in the daytime at work you snooze you do lose. You lose trust and respect and nobody understands the strength of mind it takes to be that tired and be there. Nobody understands what is like to spend a whole meeting keeping yourself awake despite being continuously on the cusp of sleep. Again I have been there and done that.    

Something has changed I am sleeping better at night and am less tired in the day. Not sorted yet but I think it can still get better. What changed? I changed my meds. I decided what I wanted and went for it. Yes I did obtain agreement from my consultant.  It took ages and the main reason was poor co-ordination between the different roles involved in my medical care. However the silverlining was the availability of a new drug Opicapone which boosts the performance of the Cobeneldopa. This has so far eliminated my off time. My medication gives me the support I need but the situation is more complex in that the sleep helps the medication work better.

So life is now less a battle but also I am more aware of how I was struggling. Not having a partner, I had no one who could give me a heads up. I would urge all of you with a partner to use their feedback to understand the status of their condition.

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Next steps.

Next I need to increase my activity and exercise. Tonight whilst watching Simon Pegg in Run Fat Boy Run I performed Cycle Fat Boy Cycle. So I am making a start but that is something I will cover in a future blog.

Thanks for reading

Jon

 

Trick or Treat

We have reached Halloween again but I carved my pumpkin little too early and it hasn’t quite made it .It has been quite a week though. Thankfully  I have avoided the nefarious plot of buses to run me over.  This came to light when a second friend warned me I could get run over by a bus it seems too much of a coincidence.face fellpicLast Thursday I visited the cinema to see the snowman. Not the Raymond Briggs happy Xmas film but the Jo Nesbo  serial killer story. Not as good as the book but Michael Fassbender is great in the lead role and well worth a look if it is your type of thing.IMG_20171028_152340[1]On Saturday I took the train to Falmouth and booked into a Pub for bed and breakfast. I wandered about taking some photographs before heading to a nearby hotel for a Wedding Reception for the marriage of two of my friends and colleagues. A beautiful evening with old friends and colleagues as well as the happy couple.IMG_20171028_152451[1]After the reception I walked with tired legs for about a mile and a half to my accommodation. An interesting walk as Falmouth  a small town but with a University emptied its nightclubs of costumed revellers enjoying the proximity of Halloween. Some lively and others the worse for wear but all good natured.with mandy

Today I said goodbye to a colleague retiring after thirty six years.  The end of an era for one as others start the married happiness of the rest of their lives. This blog is about Halloween but also about life. Life involves highlights sometimes ours sometimes other peoples. I sometimes wonder if I will have another relationship. I was captioning the photo “Beauty and the Be(a)st”. I don’t like the way I look at the moment in two ways my stomach seems to be trying to grow large enough to live as a separate entity and my expression can be lacking awareness. I know that some differences are visible, shown by peoples consideration, standing so I may sit, checking how I am. Sometimes I would like to be able to disguise Parkinsons more but that is difficult when my posture is also changed.  I also wonder how many years do I have before I retire.IMG_20171029_092214[1]Then I remember none of us have any answers. No answers but we have talents and things to offer If I can only see the negatives how will anyone see past them. Like Halloween when we open doors there could be surprise tricks or treats but that is life. Whatever life holds, I want my share.

Jon

 

Memories

Memories

Memories are a key building block in our personal identity. They are so much more than a lifeless  picture of the past. They form an active part of our personality. They provide a huge resource that we call on to learn from but much more than that they provide us with resilience and emotional support.

 

There are many poems I have written based on my memories. Some are about the comfort provided by my record collection or books. Today however my thoughts of memory are driven by a visit of my oldest daughter who now lives and works abroad. Her visit has brought me new memories and we have shared some of our past memories.

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On Monday we went to Respryn for a walk in a pretty woodland area.  A place for me that has a happy history not just with my children but also with my Mum and Dad.  We walked with smiles as Rhi played with strangers dogs, kicked leaves with her boyfriend and climbed trees.  She shared memories of her past with her boyfriend both by demonstration and explanation.  To see her grown up but retaining her inner child was momentous.  New memories fueled by old As we walked along in the wind brought by the passing of Hurricane Ophelia I could see something here that I have not seen before. I have never felt any confidence that her previous relationships could herald a future. Is that the biased judgement of a protective parent? I don’t think so  but just the benefit of life experience.  This is different. She is with someone that as a couple provides every possibility of a future of happiness. It is upto them and there is never any guarantees.

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We went to Jail without passing go. No monopoly but a former jail  as a tourist attraction with a restaurant where I was treated to lunch. Later that day I scanned my photographs on my phone . They were actually quite poor. But it doesn’t matter as they are prompts to powerful memories.

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They have returned to Lanzarote but as  I write and reflect it brings me strength.  It has been a privilege to see her sharing memories and her identity with her Spanish boyfriend . To have a place in someone elses identity is an honour.

I have three daughters so different yet all so precious and seeing them together is a joy. The sisterly wars of childhood reached a permanent ceasefire. Competition outlived by solidarity.

Jon

 

Relaunch

I would like to apologise because my blogs have been irregular recently  due to having so much going on. It has been quite a summer.

I wanted to kick start the blogs again with a reminder of why I do it. I was diagnosed almost  eleven years ago  At that time I found stories of people with Parkinson’s  to be daunting and intimidating. This was largely  because the stories were of brave people fighting adversity and not from those who were muddling on doing okay. So my blog is to show as well as Parkinson’s I have a life.  Also there will be various gratuitous posting of cat pictures as I found that people get bored of my words long before losing interest in pictures of my cat Tom.

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As I was saying it has been quite a summer. Highs such as going to London with my daughter . Truth is I came into this summer jaded. My employer changed my job changed, some of my family were challenged by their own issues and my medication needed changing. Agreeing and carrying out changes to my medication were cumbersome and slow with less co-ordination between my Consultant , Parkinson’s Nurse and General Practitioner than there should have been.  All of this took it’s toll.

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Despite this my summer was packed with many triumphs.  I mentioned the London trip with my daughter.  Although we marvelled at the sight of the magnificent  but impatient mass queueing behaviour  outside the Natural History Museum we didn’t see the wonders inside. The butterfly exhibition on the gardens outside was excellent though.Tate Britain full of a vast heritage of English Art had much to see. Highlights often included my children such as a lovely day out with Shannon and Ilona at Heligan Gardens.

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So many highlights including meeting Heidi Reynolds of the Facebook Group Start living today PD. Not just a meeting of minds but  also a meeting of sense of humours. A brewery tour at Skinners brewery provided a good evening and a team challenge in a puzzle room with colleagues led to a great afternoon. So many good things.

I also released my secondbook on Amazonwhich despite its cheapness is not selling so please buy a copy from the link to Amazon below.

https://www.amazon.co.uk/dp/1549752162

Time for a gratuitous cat picture.

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As usual life added a few bumps to the road. Having to replace my car engine was no fun, neither was telling my neighbour about his cat being killed by a dog. Negative events that could happen to any of us.

At the start of the blog I mentioned changing my medication. One change is an extra drug from a research trial that increases the amount of co-beneldopa . I have been taking opicapone for just over a month and it is successfully eliminating my offtime between doses of Madopar(that supplies co-beneldopa making life easier.

That’s where I ll end. Thank you for reading this catch up

Take care

Best Wishes

Jon.

Raising the bar- Cherita

This is another post for any budding poets.

Cherita is the Malay word for story or tale. A Cherita consists of a single stanza of a one-line verse, followed by a two-line verse, and then finishing with a three-line verse. It can either be written solo or with up to three partners.

The Cherita tells a story. It was created by ai li on the 22 June 1997 in memory of her grandparents who were raconteurs extraordinaire.

Although the Cherita is straight forward in concept it is harder to write well than it might appear.  I have provided a few examples of my own below.

The first of my poems included in an online Journal. is a Cherita and is included in the journal Where the river bends Page 68. If you are interested in the Cherita then looking on this site is a must

http://www.thecherita.com/vol3/

A whisper of contempt

Cast upon the waters of consternation

Ripples that become waves

Hate not given the finger

But helps it on it’s way

When the finger points

Hark at the moon, hear its silence

Bark at the moon share your madness

Lark for the moon share your joy

Stark is the moon austere with tears

Dark is the moon yet sees in the night

Hark at the moon its silence says it all

Tock Tock Tock Tock Tock Tock

The watch rested on his palm with its back off

As he watched the cogs slow to a standstill

Back on and spring wound steadily and patiently

He listened to it start its monotony

With a sigh, “You tock too much.”

Mouth waters with the pangs of passion

Tastebuds tremble and await

Another bite of ultimate sweetness

The flavour of victory succulent addiction

Yet as his gloves are tied tight the boxer knows

He must one day swallow the bitter taste of defeat

To write a good Cherita you need to focus on the concept of the poem  and the word choices. Less is more Just to illustrate that.I have included a short poem I wrote and a cherita version.

 

Stained fingers

Scratched arms

Sun ripens

Berry’s charms

Purple lips

Hint of sample

Tongue dyed

Proof Ample

Sun tanned

Fruit harvest

Bramble jelly

Preserve sweetest

The cherita version

Stained fingers scratched arms

Hint of sample on lips

Purple proof on tongue

Fruit harvest

Bramble jelly

Preserves sweet summer

 

I don’t usually compose cherita in this way but felt this would help illustrate that much of it’s power comes from its economy of words. Less is more can be a good lesson for any form of poetry.

Thank you for reading and please  I would love to see any poems inspired by this post.

 

Jon

Off Peake Poetry Award Winner 2017

I have judged the entries to the poetry competition for people with Parkinson’s and can announce the winner.

First a few things I would like to say. We raised £59 for Parkinson’s Uk. There were 7 people who entered but only six submitted poems(by this I mean one person did not manage to send in their poem, no entries were refused). Every poem was enjoyable and there is talent here. Thank you to everyone who submitted a poem. One poem was a step ahead. It was based on an interesting premise, it was intelligently written and read well having a good flow.

The winning entry is A Moment by Lilian M Taylor.

A Moment

 

She stood there on the bridge, believed that she could fly,

Threw back her head and looked above, saw nothing but the sky.

With graceful turn, she moved again, eyes gazing down below,

Witnessing the turbulence, the water ebb and flow.

 

With arms outstretched and head held high, she took a step or two,

Pirouetted on the bridge, oblivious to the view.

The stillness of the moment wrapped her up into its arms,

Cradling her from dangers, protecting her from harm.

 

Of a sudden she whipped around, cut the air like a sword,

As she changed her tune , marched off without a word.

Forward back she strutted, with indecision in her bearing

Until, bereft and lost, she came to a halt, eyes staring.

 

She sensed someone behind her, or was it by her side,

Just standing there , a statue, unable to decide

Should she join her fellow human and dance here up on high,

Or disappear out of sight, forget the moment, just pass by.

 

That someone would not leave her, danced with her round and round,

Wherever she went it went, a shadow on the ground.

Faster moved her footsteps, to test her new friend’s mettle,

Who followed every twist and turn, dancing, flying, a rose petal.

 

She stopped to gather breath, in her mad state of elation,

Slumped down in a heap, a poor specimen of creation.

Her companion had disappeared, had gone, was not about,

So here she was once again, alone, but for the seed of doubt.

Thank you Lilian a trophy and the prize Notes from a Commode Volume 1 by Michael H Lester are currently on their way

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Michaels book is available on Amazon at  https://www.amazon.co.uk/Notes-Commode-Michael-H-Lester/dp/1540820270/ref=sr_1_1?ie=UTF8&qid=1502002751&sr=8-1&keywords=michael+h+lester.

I am currently finalising my compilation of Parkinson’s poetry which should be available soon but my first poetry book Hope and Inspiration can be found at 

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