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.

IMG_20170910_190814[1]

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.

flutterby

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.

heli

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.

IMG_20170930_041539[1]

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.

Advertisements

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

DSCN9279 

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

Underpants and Reunions

Finished work last Wednesday for just over a fortnight. Immediately on Thursday morning went to an event filled with toilet humour and silly ness. Not the school reunion but Captain Underpants the Movie. Childish insanity reigned and it was good

Later that day I had a last minute email telling me Brigitte Handley was playing Crinnis Beach the following day .Brigitte is the talented singer guitarists with the Australian band the Dark Shadows. This was something I had to see as Crinnis Beach was not only the place my Mum took me to the beach when I was little. It was also the past location of the Colosseum .where I had seen Siouxsie and the Banshees amongst others. Site of many great memories. Also the site had included Gossips  Nightclub where despite many attempts I failed to fuel any gossip of my own.  I did infrequently hear the words “Did you hear about Jon at Gossips usually to remind me Jon was a popular name.

DSCN9231[1]

Friday morning I marked the submissions for the Off Peake poetry award and there was a clear winner I had not looked closely at any poems before this day as I didn’t want to give any one an advantage. Reading them all through once then again but outloud. Then  a final time scrutinising their structure and any poetic devices  used. They were all good but one was better.  My daughter then read the poems for me immediately coming to the same conclusion. I ordered an engraved trophy and plan to announce the winner next weekend after the trophy arrives.

 

Anyway Friday night and Ilona and I went to the latest entertainment complex   or more commonly known as a shack. A shack with a bar that could contain no more than a dozen people. An intimate performance and nice to chat to Brigitte afterwards.

Saturday brought the new details of a trial of a new Parkinson’s drug which I would take with my present drugs. I would be reducing the dose of one of my current medications. The aim is it makes another of my current drug more effective so I don’t have gaps between its effectiveness.

Saturday was the night of the school  reunion two years ago they had about 70 people, last year about half  and this year would be my first time. I walked into the pub saw no one I recognised so I asked the barman and he pointed to 8 people I still didn’t recognise. Then came Martin ,Nick, Graham, Steve  people L remembered who remembered me. I had a good evening with too much drink and little intelligent conversation.

Too much thinking not enough drinking. On Saturday at the school reunion.-is the glass half full or half empty? Does it matter? There is still the same amount of beer. A bit like life with Parkinson’sYou have a life with Parkinson’s whether you are positive or negative about it. However if you face it and try to take control you are less likely to spill any of that life. If you stay positive you may even be able to top it up with exercise, writing etc.

 

Usually we all claim to have kept in touch with those we wanted to however for me the best part of the evening was making new friends with  schoolmates I never knew 32 years after we left school.

Take care and poetry winner will be announced soon.

Taking the plunge in clown feet

Always sort your plumbing out first thing in the morning, seems like good advice. So after sorting my plumbing ,I sorted the plumbing. The bathroom sink kept blocking so the night before I put bleach down and the plughole and then after  ablutions I was ready with the plunger.

DSCN9208[1]

I digress but never mind. I bought the plunger a few months ago and left it in the downstairs spare room. Hearing some conversation from my daughter and one of her friends I was puzzled. Thoughts occurred  to me. Did Bilbo have a brother?  So I asked and received a gleeful explanation. My plunger apparently looked like a black dildo..Aaarrrrrgggggg my daughter knew about sex toys. Knew enough to perhaps  mention something that would sound completely inappropriate to a friends parent. Any. parent out there will understand why that makes me cringe.

Back to yesterday.

After unblocking the sink, I checked my email finding a refund for a car engine had not been repaid. A message telling me I had one day to return it. My car had recently broken down and needed a new engine but the first I bought wasn’t in a fit state to use.so I retuned it. I couldn’t really afford  the repairs anyway but they had to be done. Having to buy a second engine complicated my finances needlessly.

Originally they sent me a Royal Mail label. I could just stick it on and get on with it just slip the engine  down to the local post office. So I emailed the seller detailing some practicalities and they sent a courier .One problem I can’t report it as dispatched as I don’t have the shipping number . Needing to go to work but needing to address this first I was late for work.

Not only late for work but in trainers rather than shoes which breaks the dress code. My work shoes falling apart and my spare pairs too small.If you put on weight fat doesn’t stop at the ankles. With the help of gravity it gets down to your feet too. So in my lunchbreak I visited the shoeshop. Although everything that was about to happen was completely predictable I was not expecting this to be complicated.

I checked out the shoes in the sale and took a right shoe and asked for the left to try it on. It was a size 11 bigger than I had before. The assistant asked me to try the right one on first. At the moment I am a little under medicated making me stiffer than normal and when I bend to put shoes on I get out of breath. I had anticipated trying the left first but instead started a display which looked as though I had no idea how to put on a shoe. The assistant decided to help equipped with good intentions and a shoe horn neither of which was she sure how to use. Anyway we get the shoe on and having made a show of myself it is time for the encore with the left foot but it is a much quicker process.

DSCN9211[1]

I look down and answer question for the shop assistant. “Yes they are comfortable “, “yes this bigger size fits.” Yes I have clown feet. Luckily this was not said out loud. As I walk back to my office it sems my toes now race my belly to be there first. On the brightside if it snows I have skis and if it floods I have my own pair of canoes.

I pay for the shoes and head back to work. I guess I just need to put my best foot forward.

Thanks for reading

Best wishes

Jon

Cars

Just a brief note today.

I have heard it said that people often have cars like themselves. Needs a new engine, has appetite for a lot of fuel, makes strange noises, body work no longer immaculate and its sporty days are in the past. I have no idea where they get that from that is nothing like me.

My car is off the road at the moment awaiting a new engine. I broke down about three weeks ago. The car stall at traffic lights on a main road when I was turning right.at the busiest time of day. Yes my car had all the timing of a spurned ex lover awaiting the besttime to kick you when you are down.

Luckily  the lorry driver behind me realises I have a problem and helps me with a push taking me clear of the main road and blocking a busy company drive. The car too heavy for me to push while steering so I go into a community hall on the other side of the road. I have seen people dressed in fitness gear but as I approach I realise this is some sort of “recovery” exercise class with not a fit person in sight. On explaining my problem a volunteer says he can help and thankfully we together move the car onto the pavement.

IP stumble up the road to the garage who tell me later in the day I need a new engine. Three weeks later after an engine returned to Asda I await another. It has been the hardest of periods, journeys take longer, less convenient and consequently less freedom. I am so lucky that people have given me a lot of help. I can’t wait to be driving again though.

Walking

Six years ago I trekked to Machu Picchu in the mountains. Five years ago I walked 26 miles in a day on a sponsored walk.
Since then I put on 4 stone in weight and become much less active. My car broke down recently and needs a new engine.Despite others help it is a difficult period.I bought a new engine for the car but it is no good and needs returned. I have return labels to take to the garage so I will leave early from work.
I do an office job and although I move about can be quite stiff when first moving. I leave work at3.30 with rucksack on my back and start to walk through the town.The initial part of the walk s uphill. I walk stiffly with slight Parkinsons shuffle legs almost immediatly weary. I trudge on. My left hip aching as I walk feeling embarassed by my slowness just taking one step after another stopping twice for a brief pause on my way up the hill. The discomfort persists until I reach the top of the hill.I have only shuffled a quarter of a mile of a 2 mile journey to the garage but most of it is level or downhill.I keep going my legs loosening up but still walking slowly but feeling less tired. This takes me for maybe half a mile passing a butchers that sells very good Cornish Pasties(-one tip if you want to have a good Cornish Pasty Butchers are often better than bakers because they use better meat.)
I decide to have a pasty. I decide not have a pasty. I decide to have a pasty if they have any left. None are visible and usually they would be sold out by this time in the afternoon. So I ask if any are left and yes there is a large steak pasty the butcher retrieves from the back. I havea pasty and it is not my fault fate conspired against me. No small or medium pasties just a large. I have always found attaching the words small or medium to a pasty to be offensive. I would probably campaign against Brexit if EU laws said all pasties must be large Small pasties are morally wrong leading a person down the road of needing more than one.
If you haven’t already guessed my overweight stature has a link to overeating and I am currently on a program of reducing my main Parkinson’s medication to help me gain some control over this. I over eat particularly in an evening or at night. I discovered about a month ago on putting new batteries in the scales I was over 17 stone and removing layers of clothing would not take me under it. Despite my pasty I believe I am starting to see more resistance to my compulsivre eating since reducing the meds responsible for the side effect of compulsive behaviour.
I walked on eating my pasty. Walked at a normal pace shuffle gone. The pasty became my early dinner and did boost my energy level. It was another half mile at least until my legs again felt tired but more than halfway to the garage I steadily continued. At one point I coughed so deeply I almost  gave myself a groin strain. Getting closer now but having to cross at busy junction and watch traffic from four directions. I performed a maneouvre weaving through traffic that deserved the Red Arrows trademark coloured smoke trail left behind but was not a contender for a road safety award.
I finished my journey to the garage knowing it was about a further approimately 2.25-2.5 miles home but I could call a taxi. After 15 minutes my legs feeling normal I strode down the road.bizarrely my legs completely loosened up by walking did not feel tired. Now on plan B there are 3 potential stops where I can get a taxi if i can’t continue. After a half mile of downhill I face my first small incline. My arthritic left knee starts to protest so I lead with theother leg my Parkinson’s side pulling me up the hill.It works pain in my knee abates. I keep going for almost a mile. The last ile starts with about 0.4 mile steep uphill, o.1 mile flat and the final half a mile downhill. I stop 3 times on the firs half ofthe hill. My walking dferently to appease my knee seems to be upsetting my hip. Legs now very tired steps shortened to half stride I get to the top of the hill.After walking past the final pub on route another Prkinsons problem rears its head. Bladder urgency. I realise that it comes in waves. My next thought is don’t think water I may think of fountains or taps next.Too late to stop a thought but I mentally tie my bladder up averting disaster. My final step on tired legs take me home thankfully making it to my bathroom.
There nmust e somebody wondering why didn’t I get a taxi. My walking time since leaving wrk was 2 hours. Afew years ago I could have done this easily in an hour and a quarter. If you have read this far you must have a concept of endurance. Fitness does not follow a linear downward path. I walked to remind myself I can. I may not ever get back to being able to do 26 miles walking in a day. but so what?, fitness can be influenced and improved by making the right choices. I walked to remind myself that.
Thanks for reading
Take care
Jon