Soundtrack of Smiles

My blogs have become scarce but not yet extinct. On Friday I travelled to Bristol with my daughter Shan to see Gangstagrass. To make this more interesting the RMT Union called a National Rail Strike. Our journey to Bristol still looked possible but the following day rail return was not. Contingency plans in place I set out in new trousers and headed for Shan’s to begin our journey..

The gig was to be held at the Thekla. A unique venue, a ship moored in Bristol Harbour and the ideal location for my first time at a Gangstagrass gig. A bluegrass hiphop band with a pedigree band as singular as its host ship. Harmony in their music reflects in their lyrics which surge with positivity and promotes co-operation over division.

The support act joined the stage with two acoustic guitars and played them together. My thoughts contrasted my difficulties co-ordinating my legs just to stand and watch, with the seemingly effortless ease he played his guitars. After his set I found somewhere to sit down hoping that would be enough rest my knees and be ready for the main set. Shannon bought herself a two pint cocktail, both hand clutched it to keep it safe. We bought Gangstagrass tshirts and rather than carry mine I put it over the one I was wearing. Unfortunately, my Parkinson’s awkwardness decided to introduce itself and the shirt was somehow twisted at the back. Luckily I had Shan to help otherwise I might still have been getting it on when the gig finished.

Gangstagrass hit the stage with instant harmonies on, “Do better” a common sense message combined with a slice of optimism before the invite “Ride with you” to face problems together. The energy was immediately apparent, but it was more than that. Even a sad song “Never go home,” was joyous.

The sound was excellent Shan said she could clearly hear the individual’s instruments and she was particularly impressed with the impish Brian Farrow on fiddle. About 4 years ago Shan completely lost her hearing and although she has a cochlear implant the consultant could not confirm how music would sound to her. Sometimes sounds merge and splurge out of speakers with nuances completely lost. Covid stopped her exploring live music. This was not the first band she has seen recently but it the first I have accompanied her where enjoying herself had clearly taken over from trying to listen. Perhaps the unusual venue helped as she could feel the music in its vibration.

The songs kept coming interrupted only by a shout out by the band for me. My legs had forgotten their dismay at supporting my weight and paused their complaints. The songs kept coming with a consistent flow of excellence, the apparent disparate elements blended effortlessly. Raps and a banjo seemed to compliment each other so well I wondered why nobody else was doing it

 The performance was excellent but what for me made this a night I will always remember was the excited smile of my daughter that lit up the room. The music I worried had been taken from her was still there.

Thank you for reading


The Return -Poem for 5 March 2022 St Piran’s Day

My Cornish childhood is embedded in my existence.

The Return


A house that was a home

Familiar foundation no longer my oasis

Carport shelters modern interloper

Casting a shadow in the sunlight

On my reminiscence

Side by side with my fathers workshop

Concrete castle centre of creativity

Long ago abandoned by his tools

His willing accomplices of craft

His vice and lifelong addiction


I halt adjacent to a former neighbour’s drive

Where I paused, for paws on four loyal legs

My sidekick explorer ever ready for expedition

Part collie but all my best friend

Raq a yearning flurry of tail and tongue

Announced with bounce my presence

To his master who lent me his lead

Raq’s nose twitched, limbering up

To sniff the fresh scents of the countryside

I recall his wet nose nuzzling my hand eager to walk.


Retracing childhood footsteps

Trainers squelch in muddy passage of time

Following in my own footprints

I walk the path of my former adventures

Amidst a world of woods and fields

Scattered landmarks of my imagination

Castles and watchtowers defended

With courage and honour

My lands my kingdom my realm

Stretched far as my younger legs strode


More than a playground my first workplace

Tooled up with bow saw and axe

A windfall of branches gathered

I saw the wood amongst the trees

Chopped to trim before I take a bough

Dragged through the forest across the road

To be seated on a wooden horse

Where kindling not sourced from Amazon

Teeth bite sawdust blows in the wind

I log on, to fuel the warmth of the fireplace


Waterfalls, waterwheels, caves and ponds.

Concealed behind bramble and nettle

Ruins ruined but, my mind resurrected

Waterwheel a skeleton of rust

Former harness of natural power

Stands aloof, with rugged charisma

A wheel reinvented as climbing frame

I took my turn, its turn long past

At the edge of the green pool caught

In a fisherman’s glare as he angled for quiet


Derelict mines and its shaft, Trolls abode

Now ringfenced by barbed wire

Beset only by badgers whose forage

Left trails in the undergrowth

Smokeless chimneys stacked high

Peer across the treetops, silent sentries

Camouflaged bound by the ivy

A patient climber that reached for the sky

Pellets of undigested prey at the base

Clues to the nocturnal hunter perched above


Outposts of my empire long since over-run

By hordes of commuting settlors

Whose self-build trafficked for profit

From the second home owners

Former School and Post Office

Converted to holiday homes

A diluted community unaware

Of the village enduring heritage

Explored and mapped in my youth

The monuments of memory lane


Seasons pass, each bear their own rewards

Secret sites juicy details known to the few

Soft sweet berries of black picked by gentle hands

Harvested from the protection of prickles

To be preserved bramble jelly jammed in a jar

Or paired with its partner in pie

Baked with the sun burnished apple

Fruit fall rescued from the orchard floor

Patrolled by the sharp sting of sugar seeking wasp

Apple of mother’s natures eye good to the core


Looking down at the surge of chill water

Shuffling urgently over the stones

On the bridge where I hooked my first trout

Its solid planks gnawed by Chronos Teeth

My recall angles for history’s echoes

The river of time flows in one direction

Remorselessly carrying us downstream

Eroding its banks choosing its own course

I hold on to my cartography

My source still plotted in my heart and mind


Footstep by footstep I return to my origin

What I wouldn’t give  to juxtapose

As the clock calls loved ones to assemble

To the Saturday family dinner table

Welcomed by the heart-warming aroma

Freshly baked steak filled pastry delight

Crimped by my Mother’s diligent digits

Washed down by family small talk

I stand outside the haven of my youth

Taking stock, I mingle in my memories.

Deaf or Hard of Hearing

Deaf or hard of hearing.

Last year many people were amazed by Rose Ayling-Ellis on Strictly. She showed us what can be achieved Deaf or hard of hearing people have a range of levels of hearing and different people use different strategies to cope. Hard of hearing is an apt term for a this as it can make communication very difficult.

Please try to read the paragraphs with the words missing before moving on to the next part of the article.

One xx xx daughters xxxxxxxxxx lost xxx xxxxxxx almost x years xxx. Xxx xx xxxxx xxxxxx because she xxx a cochlear xxxxxxx fitted. This is xxx x xxxxxxx aid. Xx does not xxxxxxx xxxxxx. Xxxxxx it xxxxx xxx sounds xxxx x xxxxxxxxxx xxx uses xxxxxxxxxx xx stimulate xxx xxxxxxxx nerve.

The pandemic xxx xxxx xxxx for her xx xxxxxxxx have xxxxx xx xx the xxxxx xxx xxxxxx have xxxx xxxxx. This xxx xxxx xx harder xx xxxxxxxxxxx because in these xxxxxxxxxxxxx it xxxx xxx lipreading.

One of xx daughters xxxxxxxxxx lost her xxxxxxx almost 4 years xxx. Xxx is lucky xxxxxx because she xxx a cochlear xxxxxxx fitted. This is not a hearing aid. Xx does not xxxxxxx xxxxxx. Xxxxxx it takes the xxx sounds from a microphone and uses xxxxxxxxxx to stimulate xxx xxxxxxxx nerve.

The pandemic has been xxxx for her xx xxxxxxxx  have moved on to the phone and people have xxxx xxxxx. This has made it harder to xxxxxxxxxxx because in these xxxxxxxxxxxxx it xxxx  her lipreading.

One of my daughters completely lost her hearing almost 4 years ago. She is lucky those because she has a cochlear implant fitted. This is not a hearing aid it does not amplify sounds. Instead it takes the sounds from a microphone and uses el ectrodes to stimulate her auditory nerve.

The pandemic has been hard for her as services have moved on to the phone and people have worn masks. This has made it harder to communicate because in these circumstances it stops her lipreading.

I cannot replicate exactly what it is like to be deaf but I hope this has given you some insight The implant does give her hearing but it does not replace the range and nuance of natural hearing. She has been tested and with lip reading she can understand about 80% of the words said without lipreading it is only about 40%. To give you an idea of what this means. I repeated the last two paragraphs using them 3 times. The first with only 40% of the words. then with 80% and then finally the complete paragraphs. How easy are they to understand?

Deaf people use different strategies to aid their understanding ie phone app, reading body language, having it written down etc. The best practice is to ask the person who is deaf or hard of hearing and be guided by their needs. This whole process can require intense concentration.

I hope this post has helped provide some insight.

Thank you for reading


Reach Out -We are here for you

Sunday 10 October is World Mental Health Day and I believe everyone at some point in their life will have a mental health issue to deal with. My main message today is you do not have to face this alone. Please if you have something troubling you share it and share the burden in anyway you are comfortable with.

Talking to someone is the obvious choice but for me writing provides additional self-therapy. Much of my writing is 100% visible and in public but not all. The majority is positive but like everyone I have my downs as well as ups. I have been looking through old drafts on the computer and found a journal entry I have included below. This is a factual account about 7 years after my Parkinson’s diagnosis. We were in the time just before Liz moved out and had bought a second-hand fridge freezer for her. Unfortunately, it did not work so after getting a refund it needed to be disposed of.

Journal Entry

Liz is working again this time doing a cleaning job making it difficult to know when I have free time but I did have more time off with my daughter. I decided to get the old broken fridge freezer to the dump. It was bigger than me and I started a battle. Liz had told me I wouldn’t be able to shift it on my own as it took three people to bring it in. So it was going I had no choice. I borrowed her car and had to get it outside to the gate and up the steps before getting it in the car.

I started to move it with a trolley but because of the confined space we had left it in against a wall. bookcase one side, another fridge-freezer the other, door in the way I couldn’t just pull it out. This combined with its feet having gone through the lino which would rip and catch if I tried to drag it. So for 15 minutes I used the trolley making small movements to move the fridge-freezer about 50 cm, I had to balance it using my strong hand on the trolley and my weak one just to guide the fridge freezers movement. Knackered already but the only casualties being three photo clip frames broken I prepared for the next stage.

I used the trolley to get it to the back door but had to be able to get out of the door and tip it out onto its side through the door. Sounds easy but I had to be under it as i lowered it downward and had no decent grip. I did this slowly and carefully and it worked perfectly, and I should now be able to just slide the remainder through the backdoor, but the trolley had not slid out, off the other end as planned and was now jammed at one corner of the fridge freezer . All I needed were three hands. two to lift the fridge-freezer slightly and one to push the trolley back but at last count I had two. As well as much perspiration I also had a little inspiration using an iron bar from the shed for leverage and pushing a block under I took the weight off the trolley and removed it. The fridge-freezer slid out of the back door. The easy part was over.

Next, I had to upright it and get it through the back gate. When it was brought in, it was lifted over a wall as through the back gate was not even considered an option. The steps the other side of the gate, and the side of the house left no room to manoeuvre it was as tight as a duck’s ass. It would not slide through as the first step although small encroached on the passageway. I used the trolley to place it in the gateway and proceeded to push it through inch by inch until it was a whole two thirds of the way there and with nothing to brace myself against that would be it. I pushed for another five minutes to no effect so dripping with sweat and wet from the rain I paused. The step was tilting the top of the fridge-freezer into the wall of the house and the feet catching on the step. So I tried the next logical step letting out my temper I kicked and shoulder charged it after three shoulder charges and believe me I had bruises you would envy, it had moved about a couple of mm. That was enough though it was not completely stuck . I rocked it, pushed it, levered it promising myself tea only when it was through the gate in front of the steps.

Unfortunately stopping for tea also brought home the point that I was knackered and still had to get it up the steps into the car. Like any sensible person I realised the need to call for reinforcements. Common sense lacking, I continued on my own tilting the fridge freezer onto the steps sliding it one by one up the steps bracing myself against the wall of the house I was almost there on first attempt but not quite I had to let it slide back almost to the bottom. The next ten minutes were spent pushing it up one step at a time and then bracing myself and holding before the next. The last three steps were the hardest as I had nothing to push back against, so I jammed it diagonally against the wall alongside the steps gave myself a breather before the final push. This time I did it but fuck it how was I actually going to get it in the car.

I stood it on its end tilted it and lowered the top onto the edge of the car. Now I needed to lift the end on the floor and push but as usual had nowhere to grip. Feeling weak and spent I lifted one more time and put all my weight first positioning the car so when I pushed, I was braced against the yard wall my grip was starting to slip but I was there. I had a fridge Freezer in the back of the estate car. Well, all but about six inches sticking out.

The recycling centre although within 2 miles away had about half a mile of steep uphill road on the route. Not wanting to kill someone on the way by fridgicide (other people here invent words so why can’t I) I got the ropes out.  My ropework isn’t pretty but is functional and will take an age to undo. When I finished the back of the car looked like a spider’s web. When I got to the recycling centre and parked the car got out a worker appeared took one look at my wet and dishevelled state standing there in a t-shirt in the rain and started to undo the knots. He asked if we could lift the fridge-freezer together or if he should get a trolley and looking at me again decided he could rely more on the trolley.

That was a difficult time for me, my confidence had taken a knock from our break-up and this combined with doubts about my physical capabilities led me to sometimes test myself. I originally posted the journal entry in an adult website. I did that because I did not want to worry my children and I knew that was somewhere they would not see it. It was a time my body started to be less reliable, and I was losing some of my strength. More than that, I felt weaker. I have never defined myself on strength alone, but my physicality was part of my identity. It is now about 7 years since I took the fridge-freezer for recycling. I am no longer capable of what I did that day.

My Parkinson’s moves on but slowly at a speed that has allowed me to respond to change. It has diminished my physicality and affected how I feel about my masculinity. I find having to get some things done by others that I could previously do myself, very frustrating. I am older now though and hopefully wiser. We all face physical changes and it not our physical capabilities that define our worth. As a person I am not diminished, the true strength is within. My writing has helped me to establish this.

If you are struggling, please reach out in whatever way you can. You maybe surprised how many are listening. Opening up can shine a light on the dark. It is never too late to ask for help. Let others help it is what we are here for.

Thank you for reading


One Big Thank you

One Big Thank You (One BBC1 7pm 29/07/2021)

This blog is unusual in that I am not the central character in this story. It is a taster hopefully without being a spoiler. I hope you will watch the One Show 7pm 29/07/2021 on BBC1 to see the Tribute to a lady who is truly inspirational. Her contribution to the Parkinson’s communities in Cornwall and beyond is incredible.

On Monday this week I received an email. The start of more than two dozen about arrangements for the celebration of my friend. We watch these presentations with little thought for the complications of delivering a tribute to a lead character unaware of her role surrounded by a cast of unknown talents. We have all heard the theatrical maxim advising not to work with children and animals but compared to this it is child’s play.

The producer has to  plan the surprise and assemble his cast without attracting the attention of the person best qualified to assist. The plan is Darwinian in nature evolving as location is explored, weather considered, light, tides and logistics. In tandem with these considerations, they also must identify key individuals who can set up covert lines of communication to the thank you recipient’s family and social circle.

Add to that the fact that many of the participants like myself have Parkinson’s. Many of us rely on routine to manage our conditions and some of us do not respond well to short notice change. We achieve knowing our own limitations and strategies. Short-notice change, puts pressure on these adjustments and can cause us stress.

So many complications and I have not mentioned covid. Any change has the potential to cause  a chain of knock-on effects. Despite all this a tribute has been produced. Please watch it if you can let us share the inspiration we receive, with you.

I have not included any photographs as I would rather you see the visuals on the broadcast but I will finish with a poem to hopefully further wet your appetite.

One Big Thank You

No more heroes anymore

Yet One Show calls for encore

One big thank you is broadcast

Extra Myles was forecast

In Looe drew line in the sand

Beach art message was so grand

At Daisy’s formed breakfast chain

BBC pied piper led the train

On track to the interview

Social distance two by two

Move closer better vantage

Thank you clear in language

Watchers hands combine to clap

Applause recorded no mishap

Big screen message from Alex

Nominations are up next

Praise for hero played on screen

The big picture can be seen

Scope of hero Sue Whipp’s aid

Network group foundations laid

Interviews and stories told

Filled in gaps and made it whole

Await tribute, Jenkins cut

For next Thursday with no but

Arrangements that ebb and flow

Somehow the producer knows

How elements will combine

A Dr Who of timeline

Dr What, Why, Where, When How?

Is it magic? Take a bow

BBC surprises a hero

And somehow delivers a show

Thank you for reading

Jon Best

One Big Thank You (One BBC1 7pm 29/07/2021)

Half Moon

I went outside into the cool air. The gentle breeze a pleasure after the oven of the day. I looked up at the pink wisp.of cloud. The last evidence of a sunset obscured by the houses in my line of sight. I turned around to see the moon  but not a full moon, just a half moon. Was it a moon half full or half empty?

Moon half full?

Half-assed, half-baked? I think Boris is following the science but the path he has chosen seems to be signposted as chaos theory. Tomorrow is Freedom Day but free from what? The virus is still here and multiplying. Usually, the devil is in the detail but in this case, he is in the guidance.

What does it all mean? Truth is I do not know. We all face decisions.

Do I wear a mask and if so when?

Do I hug people?

Do I social distance?

Do I return to the office?

How do I behave when I meet people?

What do I if others fail to observe the same care as I try to?

So what do we do? It matters not if the moon is half-full or half empty? Although the sunset was hidden, I know it was there. Even if we cannot see the big picture it does not mean there is not one.

There are still clinically vulnerable people and masks protect others. The potential effects of changes are not yet visible. All we can do is act with care and compassion and temper our decisions with kindness.

Time will show us the whole of the moon.


From the Past to the Future

This feels like a pivotal moment. It is just over three weeks since I had my second jab but where do I go from here? This week has also seen the ten year anniversary of my trek to Machu Picchu which was a past event of huge importance. Not a moment but a culmination. A year of success of training and fundraising leading to a sunrise over Machu Picchu. When I was diagnosed with Parkinson’s I could only see a downhill journey. Machu Picchu showed me that life was alive and kicking. It gave me belief that opportunities were still there for the taking.

There are lessons there. I could not take on a challenge like Machu Picchu but I could be fitter than I am. I have missed people over the last year. The lockdown has unpicked the thread of some of my activities. I still live in one of the worlds most beautiful locations. During the lockdown I replaced my unpredictable Mazda for a reliable and cheaper Kia Picanto. Nothing is stopping me from reconnecting with the county I love. My small circles can expand all I have to do is do it.

If I assess the past 12 months I can see that I have done more than I thought. As well as replacing my car I have consolidated my finances. Working from home has allowed me to do more overtime. It has helped keep my family safe. I have also added diversity and inclusion duties to my role at work.

I have also started work on a personal project to provide positive portrayal of diverse families in my poetry and will attempt to find a way to publish. In September I have tickets to see Gangstagrass in Bristol in September. Shan is going with me to see her first concert since losing her hearing and having a cochlear implant.

Parkinson’s does progress but my life goes on. In a years time, what will I have to lookback on? I can’t predict the future but I won’t forget I have one.

Thank you for reading


Echo Beach far away in time

I have borrowed the title from Martha and the Muffins as it fits better than any original thoughts that I had. Today I visited Echo Beach or Carlyon Bay as it is a little more widely known. I walked down the hill from the car park buffeted by the wind. Already able to smell the sea. I looked at the clouds trying to determine whether they would rain or pass to reveal the sun.

My earliest memories of the beach were visits with my Mum. We would walk the 1.5 -2 miles to the beach, carrying our packed lunch(often containing one of my Mums home made pasties). It was a time of patience from my Mum whose calm was unshakeable despite my enthusiasm for the water only being matched by my inability to swim. This was not one of the safest of beaches, one step and you could suddenly be out of your depth.

I looked down on the aptly named Shack on the beach, facilities that do not hint at the entertainment hub based here in my youth. The Cornwall Colosseum was a concert venue, Roller Disco and nightclub. At the time it was a hugely important with a capacity of about 3300 until the arrival of Plymouth Pavilions which took over its role as the premier South West Concert Hall. In my childhood I watched the Radio One Roadshow in the carpark there. In my teens and early twenties I saw Iron Maiden, Meatloaf, Suede, Siouxsie and the Banshees, Carter the Unstopable Sex Machine, The Cure, The Mission, The Cult amongst others.

I walked across the beach contemplating Gossips Nightclub and gathering on Weekend Evenings at the heaving Holmbush Inn. I have never been a Nightclub person but at that time I repeatedly followed the flock often wondering why. I walked towards the far end of the beach where I could see a man with a camera and long lens photographing birds. At one time that end of the beach was the nudists section and the brazen flaunting of such a long lens would have been frowned upon.

I stopped and watched the watched the waves crashing into the shore my reflections battered by the wind and my knees aching from trudging through the sand. I took a few photographs trying to hold the camera still then walked back to the other end of the beach past the Shack on the Beach. The last time I came here to see some music was a couple of years ago when I in a crowd of less than ten, saw Australian singer Brigitte Handley. How times have changed?

With trainers full of sand I headed up the hill looking back a couple of times as the sun made a brief appearance as I left. Not the place I remember but the echoes still remain.

Thank you for reading


Happy Birthday

I have been lucky. I have not lost anybody close to me in the pandemic. I have written poems in tribute to Captain Tom and others who have inspired. It is such a tough time to lose someone. It is always tough but restrictions on meeting people make it harder to share grief.

It would have been my Dad’s 91st  Birthday on the Saturday of the weekend just gone. and although he passed away 27 years ago, I still wanted to give him my best wishes. Before I go any further, I just want to forewarn you that my maudlin has been misplaced and left behind ineffable calm. This is not a sad blog.

I have just used a measuring tape that was his. Dad. Many of the tools I have belonged to him and he is with me when I use them. Although he is possibly shaking his head at my lack of DIY skills. Sometimes less DIWHY and more DIWTF. Possessions give him a physical place in my life but there is much more to it than that. He is still with me and he is still part of me. Memories are not just past events that I can rewind and play as though they are repeats on TV. They form part of who I am.

This was harder to see at an earlier age. It was easier then to just focus on the differences such as bigoted views he learned from his surroundings. I am a Diversity and Inclusion Representative as part of my employment duties but the first time in my life I felt a passion for this was in my teenage years as I argued with my Dad often to little avail.

When I think about him I think about how hard he worked to support his family. The small times in his life when he was unemployed were an anathema to him. As a family man he was the real deal. Loving, caring and hard working. I always felt he related to my brother more another practical man but I know he had immense pride when I graduated from Portsmouth with a Physics. Degree.

The toughest times for him were when he was unable to work due to heart problems. At other times when he was unemployed, he could do some work on the house or garden etc but the restrictions led him to spend a lot of time inactive. He was a little compulsive and I found his repositioning of items others had just touched maddening. At that time, I felt mortified every time one of my fellow classmates sang the line “just another burden on the welfare state,” at me. This was a line from a song by the Specials. My Mum still worked and as a family we were not anyone’s burden.

I have often recognised I shared qualities with my Mum but, actually some of them such as kindness I shared with them both. I am now the family man and my family comes before everything and despite the challenges it sometimes brings, it comes complete with the greatest rewards.

I am sorry if you have lost someone who was a large part of your life. I know that words offer little comfort, but those who were close to us stay with us not just as memories but part of who we are.

A couple of days ago I took my Dad some daffodils and said Happy Birthday. It has been several years but I think I finally realised what he meant to me


Spring Forward Fall Back

A phrase used to remember which way to adjust the clocks when we change them but also describes my experience of Covid. Last week it was a spring forward with the vaccine, but it was followed by falling back when I got the letter adding me to the clinically vulnerable list. My life seems to be a Yin Yang of balance. My job is secure but close family members are not so lucky. I have tried to apply some elasticity to my finances but they remain frustratingly rigid. For me the pandemic has been a sort of weird hokey cokey where anything I put in has to come out again. The Parkinson’s takes care of shaking it all about.

Usually at this point I would clarify my metaphors, but these are not normal times. Instead, I will ask you to go with the flow, because in times like these no-one can have control and sometimes it is all we can do. There is a duality on the news reports at the moment either they discuss with optimism the vaccine roll-out or worry about new variants. We can have little influence on either of these issues, but we can still play our part. Individually we may seem insignificant but our combined actions matter.

Silent Announcement

The silent trumpets herald Spring as they sway

Their gentle motion blessed by the breeze

Swans on patrol duty vigilant on the water

Glide across the pond to intercept interlopers

Geese in pairs keep a low profile as the hoover

Crusts floating on the surface before others notice

Ducks sleep standing beaks cosseted behind

Pondlife bask in the sun pondering springs onset

This afternoon seems to confirm winter has Marched on but it probably will not retreat without a fight. There are usually some rearguard actions. but natures promised new life is destined to arrive  New life, in a new year that brings hope.