Raising the bar part 2

In an earlier blog I explained how using a poetry forum had benefitted my poetry and I introduced the work of Grant Hayes. I would like to expand on that, this time introducing Michael H. Lester

Michael produces his poetry in a range of styles but the key element for me is entertainment.

Dinosaurs and Dead Stars

A point of light

May not exist

In the present

Yet we see it

By telescope

As it appeared

Some one-hundred

Million years past

  ….

Inhabitants

Of that same star

By telescope

Pointed at us

If strong enough

Could possibly

See dinosaurs

Walking the Earth

 

Dinosaurs and Dead Stars shows the value of an interesting title and a thoughtful concept. The poem demonstrates how a complex thought can be not only contained in a simple structure, but can also enhance it. One of the influences Michael’s poems have had on my own is the encouragement to try different formats.  Michael masters the brevity of the haiku,  and many other forms, including much longer rhyming stories. I have learnt from writing haiku (a form I have yet to master) that strong emotions can be powerfully portrayed with sparse wording. This can give the reader the space to feel the emotion.

The above poem is just a small sample of his poetry contained in his book Notes from a Commode – Volume I, an eclectic mix of entertaining poetry that I fully recommend. It can be found at Amazon, on the following link:-

 

Michael will soon publish Notes from a Commode – Volume II, and is editor, co-founder, and art director of the cherita: your storybook journal (www.thecherita.com/).

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Missing Mervyn

Missing Mervyn

Parkinson’s UK run an annual arts competition called the  Mervyn Peake Awards. This  year they have paused it and but has left a bit of a gap. I wrote some poems that were my potential entry.

Here is one of them –

Echoes

 

Spying on the new day

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

 

It seems such a shame that I have decided to hold a poetry competition called the Of Peake Award.

The details will be available by Parkinson’s awareness week but I can say now it will be a competition for people with Parkinson’s. There will be no theme and only one entry will be allowed per  person. There will probably be a nominal charge that will go to Parkinson’s UK.

So watch out for details of the Off Peak ward

 

Jon Best

Independence

I recently wrote a poem about remaining independent.

My finances however face several hurdles. I have loans to pay that are the cost of my separation. I won’t get a pay rise for three years as the department I just moved to has a lower pay scale than my previous one. I will lose my DLA(disability living allowance) with a strong possibility that I will not be awarded a Personal Independence Payment I have 7 to 8 years of mortgage still to pay.

I don’t feel I can take overtime so what do Ido? I need to  do something as my finances are too stretched.

Looking at my talents I decided to try and get something back for my writing. Poetry does not sell well. It tends to sell only in small numbers. So in the next week or so I will be publishing my first book of poetry which will be available on Amazon.

 

handi

I am trying to find publishers for my childrens book Sweet Dreams for Jago and my Parkinson’s book Silverlinings but I may not achieve that so I have to explore selfpublishing. Hope and Inspirations is a set of poems connected by a thread of hope and positivity. There are no Parkinson’s poems as I will compile them for a future volume if this proves a success. I also think I have a viable collection of poems under the theme Cornish Reflections.

Within the next week to a fortnight Hopes and Inspirations will appear on Amazon. so if anyone would like it then lease help me make it a success. Success for selfpublished books depends on finding customers. Anyone who can help with that will be very much appreciated.

In the book it says

A leap

With Faith

Sets youfree

Builds belief

Proves hope is well placed

Inspires success

Can you help me leap?

 

 

 

 

Ropinarole and Sleep

Hi Everyone

I promised an update on what I was doing with the information  I gathered from those taking Ropinarole. I have to be honest and say there are no definite conclusions I can draw due to differences in dosage, time taken, other medication taken, effects reported.  No conclusions but it does suggest it might affect sleep and that is not a listed side effect so I have forwarded my questions via a research contact. I will let you have any further information when/if it becomes available.

 

Hi Camille

I am seeking your advice on where to find some information regarding research and realise that there may not be any available answers to my questions.  I will be as clear as I can as I promised to feedback to others who talked to me about their issues. My intention is not to teach you to suck eggs but to make this self explanatory to a range of people.

There are three things we(those with Parkinson’) can do to make our lives better and they are exercise, better diet and sleep.

Daytime sleepiness caused by ropinarole is worse if you don’t sleep at night. Sleep is a very complex problem affected by both the medications and the condition The complexity means that no one solution will solve everyone’s problems or even allow the causes of the problems to be easily identified. However we should keep chipping away because even small improvements can accumulate

 

Indications are from anecdotal evidence that Ropinarole may be causing disruption to sleep in say 20% of those who take it. In reality because of the different doses, different times, other medication I have no acceptable proof of this.

So I have questions

  • Is there any research available into whether ropinarole disrupts night time sleep?
  • If so does it affect the sleep direct or cause compulsive behaviours that avoid sleep?
  • Does the prolonged release cause disruption to sleep?
  • Are people more prone to compulsive behaviours at night?(this could be due to tiredness or more opportunity as less people to observe it)

 

These are important questions because I have seen people with Parkinson’s make light of lack of sleep focussing only on the medication causing daytime tiredness. Sleep disruption is not a listed side effect so there is no reason to warn people before they start this medication. Avoiding sleep is not an expected compulsion so that would make it harder to identify, particularly with the number of other potential causes  If there are issues that can be identified it may be that at least for some we can devise better sleep strategies.

 

Jon Best

A meeting of absent mnds

A meeting of absent minds?

Last Saturday I was excited  I was due to meet that Parkinson’s guru Heidi Reynolds but why was I excited ? I had recently learned from Heidi she suffers all the stiffness, lack of sleep that the rest of us due. I think she admitted to an asbo. Don’t let her know I told you but she is banned from being.in talking distance of any donkey sanctuaries.  The hind leg injuries just can’t be risked.  I digress.  Heidi started the closed Facebook group Start Living Today PD. Thanks to her talents it has grown to above 900 members within its first year.

I was excited because the vulnerabilities are part of the point. We may perspire more than we used to, but can still aspire. Heidi practices a lifestyle that allows her to get the most from life. She recognizes she has to challenge Parkinson’s but also needs to ensure she takes care of herself.  This in my view is what she seeks for others, an opportunity to get the most they can out of life.

We planned our meeting with military precision. Un fortunately the military model we followed was pure Dads Army. I set off pretty close to being on time, got to roundabout near Falmouth University and saw the Trebah Gardens signs saying to go towards Falmouth but I knew better and took the Mabe Burnthouse turning instead. After ten minutes and no signs I decided this may not be a shortcut so I turned back, followed he signs

This made me twenty minutes late so I quickly parked and rushed off to the reception at Trebah Gardens but no sign of Heidi. So I asked if the reception desk had seen any ladies who might have been waiting for someone. They looked at me slightly perplexed. I asked if I could go back through the entrance but then hesitated as a woman in a pink top hove into view. I hovered hoping she would turn around. After what seemed like an age she turned and yes it was, somebody else.The ladies at recepion were very sympathetic and then I realised that the way I described it it must have sounded like a blind date.

After rechecking the carpark I had a cup of tea in the canteen. Trebah is a beautiful Garden so I wouldn’t waste the trip I will go and take some photographs. As soon as I went outside it started to rain and I was halfway down the garden before it stopped. I reached for my camera and couldn’t use it. The batteries were flat. I took out my phone and the charge was low I walked on stopping at the beach at the end of the garden. Sun was out and it was beautiful so I resolved to walk back to the shop and buy some AA batteries. Guess what they only had AAA.

It was time to call it a day but as I came out from the shop I looked into the canteen and our eyes met. It was quite a moment as I squinted and pulled a face that may have won a prize in a gurning completion trying to see if it was Heidi. Heidi had broken down on the way(her car) and had been trying to send me Facebook messages but although I have a smart phone I did not have smart fingers so I don’t use the internet on my phone.  My first thought as here was a woman I could look up to. Nobody had told me she was so tall.

On a more serious note the meeting was worth the wait. Not only did she buy me cake but she was charming, enthusiastic, intelligent and a great example  for International Women’s Day(8/03/17).

Heidi saw a need and thanks to her and the members of the closed group on Facebook many more people with Parkinson’s feel more supported and understood. Seeing a need is something a lot of people do. Filling that need is something few achieve.

I am not going to say too much about the content of our meeting but please keep an eye out for an activity from me that will celebrate the talents of those with PD

 

Bye for now

Jon

PS I can assure everyone no  donkeys were hurt by our meeting

Support Parkinson’s UK with Poetry

Support Parkinson’s Uk

This week I have been thinking of my personal gratitude to Parkinson’s UK. Parkinson’s Uk is an excellent charity that delivers much to help. It funds Parkinson’s Nurses, Research, Raises Awareness provides advice with helplines and information officers, lobbies the Government. There is more but these are the main things. I can sum it up by saying it seeks to improve the quality of life for people with Parkinson’s.

On the Start Living today PD Facebook page they had a PD Positive request asking for details of PD related issues  I believe Parkinson’s UK to be one of the biggest PD Positves.

I would like you all to put on your thinking caps on and imagine Parkinson’s was rare and affected only on average 2 people in a million. This probably seems a strange thing to ask you to think about but please bear with me. There would be no Parkinson’s UK ,no Parkinson’s Nurse, no awareness of Parkinson’s , no fundraising, nobody you could meet up with who has the same as you.

We are lucky to have Parkinson’s UK. I have a stepdaughter who has a rare auto immune condition that over her lifetime will disrupt her life more than Parkinson’s does mine. There is no equivalent of the Parkinson’s nurse .Where we have Parkinson’s UK she has a vacuum. Can you imagine that? My family situation gives me a unique perspective and I join with Parkinson’s UK to fundraise and improve awareness. More recently I played my part in helping to produce a creative writing toolkit.

As with any charity marketing is tricky. Do you aim for maximum fundraising and scare the pants off anyone newly diagnosed or try for realistic awareness but lose the urgency needed for fundraising. There is a third option try and use a phrase that covers both circumstances which

This leaves Parkinson’s UK ,with a very hard task every year. Finding a slogan/strapline is not as easy as it seems.  One  excellent one from the past is “No-one has to face Parkinson’s alone” and another I liked was “Find a cure”

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 127,000 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

 

I used the term slogan or strapline. Everybody knows what a slogan is but does everyone know what a strapline is? One definition is:-

a short, easily remembered phrase used by an organization so that people will recognize it or its products:

Another is:-

A memorable slogan attached to a commercial brand

Parkinson’s UK this year have “We won’t wait,” and for me it doesn’t strongly fulfil the definitions above. Although it works fine in the intended context, which is about our determination for a breakthrough. It is not self explanatory . It is also not clear what it asking people to take part in. I personally don’t believe it will inspire people to support us and for these reasons I have emailed Parkinson’s UK asking to be involved with their marketing.

I would like to issue a challenge here. Who can write a poem for this year’s awareness week(10-16 April 2017) with  the strapline “We won’t wait” as the theme?

Let us show Parkinson’s UK what we can offer. In terms of creativity. Please post the poems in the comments to this blog. Poems welcome from anyone whether they are connected to Parkinsons or not