Putting the F word into Parkinson’s

 

This was the title of Parkinson’s UK Joint Education Day. Not a reference to the possible use of cannabis for people with Parkinson’s but recognition of an event brought into being by two branches of Parkinson’s UK. The Mid Cornwall and the West Cornwall and Isles of Scilly branches brought us a day that focussed on Friendship, Fellowship and Fun.

The conference moved through the introductions to the first session. Standup comedy by Maggy Whitehouse a comedienne. This was a good idea and a response to feedback from previous events that it could be a bit heavy. Unfortunately, it didn’t quite come off. The vicar wasn’t vicarious enough for us.(we didn’t live her experiences ). She didn’t manage to connect with us.and we responded passive and polite.

She was followed by Dr Christine Schofield and Julie with a request for participants in a research trial connected to the smell of Parkinson’.s. I was next with a 5 minute slot to promote two of my books Park Climate Change and Laughter the 2nd Best Medicine.

The next session involved a choice from an impressive selection of five workshops. These were singing, benefits, hypnotherapy, pilates and food tasting. Lunch was followed by a set of six workshops. These were boxing, Cornwall Carers, mental images to motivate, gt creative, active plus, and container planting. The number and variety of the sessions was highly impressive and I personally found the boxing session extremely useful.

The final session, an open session with a cream tea allowed for networking and mingling.

This was the latest in a line of well organised Education Day whose success has been built on a foundation of hard work and dedication of two local Parkinson’s UK branches. I would also like to mention the caterers who I felt were very attentive to participants needs.

Thank you to everyone involved.

Jon Best

Amazon links to the two books I promoted are

https://www.amazon.co.uk/dp/1093153172

https://www.amazon.co.uk/dp/169127478X

Tea and a Chat

 

In the UK drinking tea is an institution but perhaps .an important factor is the company who you drink with. This week is Mental Health Awareness Week and one way of helping someone who is struggling, is having the time to chat and listen. What better way to do it than over a tea or coffee?

I have a couple of friends who I meet every now and again in my lunchbreak from work just to chat and catch-up. This means a lot to me. Knowing that there are friends interested in my life that I can talk to when I need helps to give me the confidence to face issues.

 

Tea and Empathy

 

The waitress brings your coffee and my tea

As I stir the pot the rich aroma of the coffee

Wafts upwards and its warmth reaches out to me

 

I breathe it in. and inhale your smile anew

I stir and squeeze to encourage the brew

We chat and catch up and you listen too

 

I sip and swallow as conversation follows

Truth exchanged and some chat shallow

Wit found, laughter given, nothing borrowed

 

A mug of coffee and a china cup of tea

A perfect balance without any symmetry

Strengthen wellbeing resilient destiny

 

You can’t fix other peoples mental help issues, but you can listen and give them the space to talk if they wish. You can offer friendship and support, letting them know you are on their side.

Time for tea why not make that tea for two.

 

I have included two further poems that both come from my first poetry book Hope and Inspiration.

 

Only the moon

It was a crisp cold winters night

The clouds had departed for slumber

To allow the last vestiges of solar heat

To depart leaving a chill in my bones

 

Only the moon remained as awake as I

Revelling in its opportunity to shine

leaving eerie shadows around me

Befitting my sombre mood

 

As I look around in the gloom

Colour and beauty subdued

Night has stolen the glory

Night has taken away the joy

 

My gaze is drawn to a solitary streetlight

Its artificial halo marks its territory

The beauty bathed in the surrounding glow

Is merely dormant camouflaged by darkness

 

Just as my soul as black as night

Still contains the goodness I felt in the daytime

The loneliness of the night will pass

The sun will warm my body and soul

 

Only the moon still as awake as I

As it looks down with understanding

Only the moon more awake than I

Will watch over as I finally sleep

 

 

Butterfly of hope

 

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

 

Hope and Inspiration can be found on Amazon at

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

What is Pride? – The Poems

The rain bowed with pride

As the poets built bridges

With a rhyme and reason

In a dome of Eden

.

Straight but could be less narrow

Home truths I may have to swallow

Would I bi or leave on the shelf

Learn about others or of myself

.

Testicles can be two by two

Ovaries can pair to be true

Understanding is a condition

Of starting a new tradition

.

Conform an expectation

Normal’s false foundation

Majority is just number

Condemns progress to slumber

.

Compromise not the key

Can’t dilute sexuality

Parody of your own feelings

It’s your soul they are stealing

.

Bradley or Rachel Stevens

Question of S club seven

Answer is individual

No one answer suits us all

.

Chris followed by MC Spoken

Cornish Chick is not a token

Rap and poems thoughts awoken

Not afraid to be outspoken

.

Kats got a tongue

Sharpened on wetstone

Cuts to the bone

But I like its tone

.

Observation comes alive

Words woven, stories arrive

Insightful gender agenda

Simple truth wisdom renders

.

Robert Garnham’s brand of whimsy

LGBT poems amuse e

Can relate easily

As he protest breakfast tea

.

What about the all day breakfast?

Contradiction but I digress

Compelled by poems lacking title

Un-named exuberance vital.

.

Badger in his garden the word

Eastender badger sure I heard

I entitle “Sett in Albert Square”

Humour and humanity help me care

.

There is a mole in this garden dome

Undercover and not known

There is a mole in this garden dome

Undercover and not known

.

A straight man didn’t mean to hide

In plain sight I can see their pride

Courage of lions in their eyes

Kiss in public can be denied

.

.I have listened to their honesty

Surprised by lifes difficulties

Spellbound by intimate stories

Impressed by the integrity

.

 

Courage of a kiss

The courage of a kiss
That you can’t dismiss

Moment of tenderness
When lover’s lips caress
Sharing their smiles
Touching a while

Fingers, mingle, entwine
Hands together a sign
Held with warm affection
Intimate connection

Sanity unravels
You bang angers gavel
You haven’t got the right
To inflict with your might

Brief flicker of beauty
A truth that you can’t see
Nature of a PDA
Natural to display

A moment of shared bliss
Their courage in a kiss

 

What is Pride?

What is Pride?

What does it mean to you? At the end I will ask this question again and give you my answer.

Last night, was the night the rain took a bow with Pride at Eden. Last night was for me about going out not coming out. The LGBTQ event featured performance of music and the spoken word.1990’s Chris kicked off the events in the Rainforest dome. His poetry hopes to start conversations around queer identity, masculinity and class. It had an honesty and charm and I found I could relate to aspects although in a different context. One topic that chimed with me was about validation by relationship. For me the dating experience of Plenty of Fish with a health condition, has at times left me feeling validation by relationship is beyond me. These feelings for me have been temporary but It has led me to know I can be okay on my own. I can’t imagine what it was like for Chris to feel the pressures that society put on his life. Even voicing the name of his favourite member of S Club 7 failed to meet societies expectations, My pressures have come later in life when I have already known I have value as a person.

Chris was followed by MCMCSpoken a Cornish Word Artist who continued the provoking of my thoughts. Straight is a default position and society keeps asking questions with an expectation of the right answer. If your answer is different, what is it like to see societies disappointment? How does it feel for your own truth to be undermined by others doubts? Music interrupted my musings. First Lots Holloway a talented musician and songwriter in the Mediterranean dome and the local duo . A Little Twisted in the Rainforest dome.

The poetry resumed with Kat Lyons a poet with a smart wit and a good turn of phrase. As I listened, she brought her poetry to life   and I could do nothing but to listen compulsively. Kat’s talent for observation noticing the small things and then in the context of her poetry linking them to a bigger picture was one I really admired. She was followed by Robert Garnham described as bringing his own brand of whimsy and humour. Not to mention a pleasing touch of absurdity His announcing his poems with the title “poem”. left me naming them. “Badgers in the Garden and he thinks he is on Eastenders “ I titled, “Sett in Albert Square”. His poem about tea delivered with energy and a typical exuberance left me pondering, because whatever the differences in diversity there are always bridges of understanding that can be built. Robert is a very different person to me but there are still things we have in common.

The poetry in the Rainforest dome was succeeded by the excellent voice of Transgender singer songwriter Shea Freedom. I headed for the car in the pouring rain, thinking about the poets who spoke to me. I had chatted to Chris, Kat and Robert mainly about poetry, but I didn’t tell them I was straight. I admired their honesty and integrity but where was mine. I wondered if this for me was a very small brief taste of how many people there have felt A need to be guarded about sexuality. For me this was all in my head as I doubt a single person there gave a toss about my sexuality. I did not fear telling anyone I was straight just was not used to feeling part of a minority.

As I write this morning, I think I have taken a step forward in understanding the world. I had never attended a Pride event before, but I am glad that has now changed. Pride is such a good description for the event and all who attended.

So what is Pride?

There is more than one answer, but I promised you mine. A pride is a group of lions. Lions are known for courage and protecting their family. Last night I met people of courage and dignity, sharing their experiences with integrity to support others. Pride seems to capture this perfectly.

Thank you for reading.

Jon

Park Climate Change

 

 

I still want to save the world. I live in a world of awesome variety and beauty that may be very different in just a few generations. I want to believe that my descendants will enjoy the level of abundance that I do. I have recently seen increasing news reports about extreme weather and more people getting involved in this debate. Are we doing enough?

I have Parkinson’s and am involved in a community where it is not unusual to feel disenfranchised. I have joined with 9 others who contributed to a book I have called “Park Climate Change. This book adds our voices to the call to act on climate change. It comes from a section of the population not usually associated with voicing its thoughts.

What are words worth?

Words are invaluable and my writing has brought confidence to my voice and brought it to the attention of others. I wonder lonely as a clod, trampling on Wordsworth’s beauty but in my own way I build bridges with my words This time I have built bridges with 9 other people with Parkinson’s to show what our combined voices can do We are stronger together.

The intent of this book is to explain some of the processes of climate change and our environmental impact, and highlight environmental impact. It includes content all the way from Australia. Any profits will be donated to the charity Parkinson’s UK.

The book is available on Amazon in both paperback and kindle versions. Please buy the book because I doing so you will help our voice to take it place alongside others calling for change. Read it and I hope it will encourage you to also want action.

In the UK the paperback is available at the following link

https://www.amazon.co.uk/dp/169127478X

and the kindle

 

Please support this book.

 

In the US the links are

https://www.amazon.com/dp/169127478X

Opportunity

 

Opportunity

When even the furniture is telling you that, you are out of your mind you may have a problem. Thankfully I can admit I am not talking to the sofa but listening to a song from the past by a band called furniture. Recently I have pondered opportunity.

When I was diagnosed in 2007 with Parkinson’s I had no idea of the impact it would have. I carried on my family role of looking after everyone else in the family and being strong for everyone else. There was one thing, one piece of advice that just gnawed away in the back of my mind.

I was told to concentrate on the present and not think too far ahead. Good advice but for me a paradox. If I couldn’t think too far ahead where was the hope? My method of coping was to face things straight-on and it meant I had to come to terms with this. I viewed Parkinson’s as a limitation on my life that could only grow and keep growing. I saw my future narrowing before me.

DSCN0620

Three years after my diagnosis I had the opportunity to go to Machu Picchu. I grabbed it and did not let go. I had a wonderful year fundraising and getting fitter which culminated in two weeks in Peru. It was the adventure of a lifetime. I realised that although my life had changed there were still opportunities.

IMG_20190529_140220

Coming back to the present I will reach my 51st birthday within the next two weeks. As I think about the past year, I have had opportunities that I had not expected. Attending a Buckingham Palace Garden Party and holiday in Lanzarote (with my daughter to visit her older sister) immediately spring to mind. Other aspects such as learning and developing in my role at work and improving my writing have shown my life still moves forward.

IMG_20190803_173812

Within the last six months I have discovered my Parkinson’s has migrated to my left side as well. Previously on my right only but I always knew at some point it would affect both sides. This has been an emotional hurdle I have managed to leap, as my medication controls this change.

You can only play the hand that you have been dealt. It may or may not be a losing one but until the game is finished who knows what card might be hidden in the next hand. Sometimes it seems easier to mentally shut down our life rather than live it. If opportunity knocks, you will never know what it offers unless you answer the door.

I am confident that the year ahead will include the good and possibly some bad. Beauty is in the eye of the beholder so maybe the ugly is just perspective. Whatever happens it is my life I will live it and blog about it.

Rhi’s World

I have just returned from holiday at Rhi’s world, a theme park built on Lanzarote, an island of sand, sea and sun. A week that was a wicked ride of fun including beer, cocktails, shots, tapas and bonhomie. In Rhi’s world a flip flop is an item of footwear not a political contortion. Dancing Queen is, a not so guilty pleasure played by an Abba tribute band, not a Prime Ministerial humiliation.

Rhi has worked in Lanzarote for over 3 years but this has been the first time I could visit, and I was lucky to have the company of her sister my youngest daughter Ilona. The trip to Lanzarote went almost without incident but not quite. The train doors shut on me without warning, at Plymouth and the bus from the train station made Ilona feel poorly. None of that mattered as we arrived in Lanzarote and collected our baggage (once I realised that looking on the right carousel might help).

 

Although I might have the odd beer (sometimes with an odd name), cocktails and shots were not usually on my agenda. My favourite cocktail was the Hurricane, enjoyed as I sat in the calm with Rhi a one barmaid hurricane, whose energy swept through the bar in a storm of service. As well as the Hurricane, I tried other cocktails. Despite it’s promise when I followed Sex on the beach with a Screaming Orgasm that did not provide the satisfaction its name insinuates. No need to worry about escaping the rain when you have ordered a Pina Colada (usually includes a free umbrella).

 

 

The entertainment for the first night at the Irish Bailey was a quiz and Karaoke. Rhi sang two songs and one I videoed. There are usually two types of Karaoke, those who can sing and the drunk who can’t. Rhi can, and her performance of “Whats up,” was one of my highlights. Rhi had to work whilst we were there so we spent some of our time there. Derek her boss even persuaded Ilona to wash glasses and when the blarney was of no avail eventually achieved success by nagging.  I have seen Rhi work before but seeing the two of them working together was a first.

 

A first but no thirst, as Rhi a blur of waitressing and barmaid somehow seemed to manage to cope with multitasking, including keeping me supplied. Unsurprisingly the entertainment included Irish Singers on two evenings which kept the bar lively and busy. We also watched an Abba tribute band where Rhi employed the nagging tactic to get Ilona to dance with her. The strains of Voulez vous caused many giggles as  Rhi recalled the stupid lyrics she and her other sister Shannon used to sing to that song. Seeing Rhi and Ilona laughing together was one of the things I have missed. It was made almost a perfect moment as Rhi messaged Shan, and all three were laughing even though one was back in the UK. Our varied entertainment was completed on another night by a drag act whose bra was not only a push up bra but had many other functions including pushing forward one at a time. Luckily her top was also very stretchy.

 

As well as Nat her housemate the household includes Rhi’s cat Kyra an independent feline but efficient at Lizard killing. The other pet is Nat’s dog Cooper who became my walking buddy. Usually the first awake we went for walks before the sun had fully warmed up. 8am was a time when only a handful of dog walkers and a large number of keep fit enthusiasts were up. People ran past me whilst I held one end of an extendable lead that at any moment could be deployed by Cooper as a weapon of mass trip action. Luckily no human or animals were harmed for the sake of my exercise. Not content with running one man shadow boxed and other people did press ups. I just tried to walk properly as on a couple of occasions I walked off before my medication was active. This also made clearing up after Cooper interesting as I bagged one handed whilst holding him struggling to bend over. Only on one occasion did I have the luxury of being able to tie him and use both hands.

 

Windsurfing provided some unexpected entertainment. Some manoeuvres were spectacular on the water. Manoeuvres on land brought their own challenges as wind caught sails carried through busy paths but luckily I saw no serious injuries.

I was also entertained by the street sellers whose goods were all real but always a cheaper version of well-known brands. Like the souvenir shops you get what you pay for so I checked quality as well as prices when I bought souvenirs to bring home.

 

The food was excellent, and I enjoyed Tapas and a variety of other meals. I did have a sweating incident in an Asian Restaurant but luckily, I did not completely liquidise. Overall, It was a great holiday. And I met Rhi’s new boyfriend Eddie who was a cut above some of her previous English predecessors.  It was great to be told by her friends that she talks about me and even in separate countries I am still part of her life as she is part of mine. She has a great bond with Ilona and seeing them together pulling silly faces always makes me smile. I hope that her other sister Shannon will be able to visit at some point in the future. I have always been proud to be Rhi’s Dad and it was nice to see how hard she works and the way she now runs her own life. Her grasp and use of Spanish is impressive. A trip to Rhi’s world was just what I needed, and I have so many memories that I can’t really list them all here. I have not mentioned the Zoo, shopping with Rhi, or many other things(including being trounced by Rhi at bowling but shh that doesn’t need to be mentioned).

Irish Bailey

The Irish Bailey

Of Lanzarote

Bastian of blarney

Beer and bonhomie

 

Cocktails and shots

Umbrellas the lot

Guinness they have got

Whiskey or rum tot

 

Handcut chips are neat

The menu a treat

Music does complete

Ambience so sweet

 

Best of all the staff

Derek host not half

Barmaids no riffraff

Make you smile or laugh

 

Billy Boy Rap

 

Billy Boy

Number One

Selling goods

In the sun

 

Where you from?

Oh the UK

Man Cjty

Football OK

 

Have a gift

Try a bracelet

Any Change?

You won’t regret

 

Billy Boy

Number One

Selling goods

In the sun

 

Need a watch

Try a Rolex

Hear it tick

It’s not suspect

 

You need shades

I have Rayban

You look good

It match your tan

 

Billy Boy

Number One

Selling goods

In the sun

 

Its Rayban

But says Raybon

No fake sir

I swear upon

 

Street seller

In Lanzarote

A good deal

You get from me

 

Because I’m

Billy Boy

Number One

Selling goods

In the sun

 

Remember I’m

Billy Boy

I am the best

Better than

All of the rest

 

Billy Boy

Number One

Selling goods

In the sun

 

 

 

All you can eat/All you can sweat

 

Asian Restaurant

As much food as you want

An exquisite buffet

Sweet exotic gourmet

Subtle palette tickle

Tastebuds in a pickle

Tastes trickle on the tongue

Mouth-watering upon

 

Heat hidden in it’s guise

Fiery with surprise

Temperature to melt

Pores open and damp felt

Forehead rains on the glasses

Nose runs until it passes

Mopped brow still sweat flows

Red face do they all know?

 

Windsurfer

 

Pirouettes and twirls

Avoid others as wind swirls

Sail almost blown from hand

Dangerous on dry land

On a crowded pathway

Wind makes the sail sway

Others dodge and some duck

Avoided just by luck

Glad to reach the water

No carnage or slaughter