How to be me?

Part 1

The Introduction

This is the introduction, the first of three blog posts on” How to be me?” The second will contain my story and the third my conclusions.

One of the biggest fears of having Parkinson’s is losing yourself. The thought that Parkinson’s can change you has crossed my mind and it’s a scary thought. Parkinson’s makes changes in the brain, the medications act on the brain.

It is perhaps unreasonable for us or those close to us to expect that we can somehow refuse these changes in a way that we can’t with physical symptoms. I believe however that we can, like physical symptoms, at least minimise the impact and the fear by being realistic and understanding some of the things that happen to us.

As well as physical changes, there are what we call non- motor symptoms and these are non- movement related symptoms. This includes depression which affects mood and can change behaviour. Another possible effect is anxiety.  Whilst loss of confidence can accompany physical symptoms too, non- motor symptoms can exacerbate this in some cases, in turn making you less decisive and outgoing.  Apathy affects the motivation to get on with or initiate tasks. The final non -motor I want to mention is a decline for some in cognitive function, I’m talking short term memory, inability to call up words or names, plan or even multi task.

If you combine these issues with medication side effects such as impulsive behaviour, hallucinations or lack of sleep. The combination must have an impact.

Personality and behaviour are related but have different meanings. Behaviour is what we do but personality is who we are. There are many definitions of personality some definitions include habitual behaviours. It is important to consider not only what we do but why we do it. Parkinson’s is a complex condition so there are many factors that can impact. If we can recognise the factors we can see past Parkinson’s to the person behind.

In part 2 I will use my own story to illustrate the effects these factors can have.

 

Jon Best

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Unfinished Business

Some of my blogs feature poetry and today I would like to show you a couple of poems by Michael Topa. Michael is a poet who like myself posts on a site called Rhymezone. Michael’s poems often have a spiritual aspect that is thought provoking. It can lead to poems containing big ideas but yet are engagingly intimate.

The following poem Gratitude comes from his book Unfinished Business.

Gratitude

We must not forget the first photons who
Emblazon elsewhere toward eternity or

Our atmosphere’s frail cocoon sheltering
Us from catastrophic harm yet each breath

We take contains its own architecture of
Great hopefulness for all life remains a sacred

Blessing that casts its mysterious net between
Sentient creatures we must give thanks

For a chance to put down our diurnal wares
To unearth words in careful scriptural exegesis

Let two luminous lives construct a simple
Dwelling wherein love has found its sanctuary

I am not going to try a detailed analysis. It is not my strong point and I would rather you
concentrated on the poems themselves as your own first hand views are worth every bit as much as mine.

The Beginning of Life on Earth

In your touch
I relive the havoc of meteor showers
Striking the nascent earth

In your kisses
I feel the fragile atmosphere set ajar
By sudden lightning storms

From volcanic depths
Torrents of Methane Carbon Dioxide
Hydrogen Sulfide
Blanketing the sky then
Water vapour
Coalesced drifting down

To gently accumulate in craters
In the crevice of your love
I am consumed by a joy
That does not lend itself easily to speech
Mysterious as first life on earth
Looked back at from afar

This is another poem from Michaels book. Michael’ s poems tend to be hugely personal expressing his own awe. His poems have played a part in my own development as a poet. He has taught me that there are no themes too big for poetry.

Jon Best

Parkinson’s Jigsaw

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I recently wrote a post for the Start Living Today PD group called Parkinson’s Jigsaw. The point being that if you were troubled with cognitive issues there were a whole range of factors that could make up the puzzle.

My interest began when I became one of the contributors to Parkinson’s UK creative writing toolkit. The aim was to encourage engagement and improve the quality of life. I am a member of a couple of Parkinson’s closed Facebook groups as well as using the creative corner on Parkinson’s UK forum. Writing blogs, short stories and poetry is used to communicate and share. It provides a mechanism for engagement -reading other’s work leads to a feeling of sharing and understanding. It allows the processing of difficult Parkinson’s issues.

This led to me thinking about whether you could help cognitive performance by staying mentally active. Using it so you don’t lose it. There was no research to support it but anecdotal evidence suggested this may be a  good approach. So I became the co-ordinatoor of Start thinking today PD(a part of SLTPD).

I started to encourage cognitive actities but like the physical side of PD there is a wide spectrum of symptoms and I quickly discovered one size didn.t fit all.

So I started to explore the cognitive tests. These are the tests used to diagnose if there is a cognitive problem and what area of thought it affects.

The cognitive tests usually show a correlation with how far the person went in education and this is a generalisation I have asked about this and the response I had was that achievement was in line with the ability to use mental strategies and problem solving. The thought being that those who learned strategies in earlier life have more tools to use their cognitive abilities.

Going a step farther have those who have cognitive issues the ability to relearn. The answer is maybe. If someone has forgotten the alphabet they may be able to relearn it by singing it. It is possible writing helps by increasing neural pathways giving more links and providing a stronger base for retaining word knowledge.

It has become clear to me that anyone who has/ or thinks they may already have cognitive issues needs to ask their GP/consultant to arrange the tests. Without that nobody can advise what the needs are.

.Another cognitive factor is tiredness and how “off” they are. Cognitive achievements are higher when we are at our best. This is important because if someone has cognitive difficulties if they can align tasks with feeling at their best they will achieve more. This could be doubly important because as soon as we believe something is beyond us it is.. So retaining confidence and self belief is also important.

This takes me to another point as our cognitive abilities can be affected by such as depression( or anxiety both common in those with PD. The ability to initiate can be affected with feelings of apathy or perhaps the inability to know how to start a task. Behaviour can change sometimes due to impulsive behaviour caused by medication. There is a range of factors that are interconnected.

I have also learnt of the struggle those suffering from cognitive abilities face. There is a lack of understanding from others and a loss of confidence.That can be very isolating so we are lucky on the SLTPD group that it’s founder Heidi has decided to publicise her own struggles and include details of the cognitive tests. It is very brave of Heidi to be public about something so personal to try and calm others fears.

I am not claiming we can hold off dementia but I do think we can perhaps maximise the effectiveness of our cognitive abilities. The results of the cognitive tests can help to pinpoint strategies that can assist. Sometimes it is small things that help. An example is it is better to ask a specific rather than a general one. Ie Do you want Indian or Chinese for dinner?, Would be easier to cope with than the open question “What would you like for dinner?

As well as strategies we need to take exercise as studies suggest it improves our cognitive as well as physical abilities. Getting the best sleep we can also help. Creative writing has much to offer if we choose to use it but nothing is better than a well balanced active life.

Where does this leave me with Start thinking today PD? I can’t promise that using cognitive abilities will stave off dementia. We can still encourage using cognitive abilities but I think we should broaden the scope to other strategies to help positivity and mental health. Mindfulness is a tool that may be useful.  We also need to encourage positivity and engagement

The best way forward is an engaged positive approach to a well balanced life. Easy for me to say harder to achieve but worth the effort.

Jon

 

The Woodcutter

The Woodcutter

In the not so distant past the woodcutter stared at the clear morning sky  before gazing across at the woodland trees bereft of their leaves in midwinter. He looked at the small woodpile realising it needed replenishing and it was best done before the weather changed.  He grabbed his hunting knife and his small axe and set off into the bleak woods his feet crunching leaves underfoot as they slowly slipped from Jack Frosts clutches.

The woodsman had already scavenged the closest woodland and would have to go farther for more windfalls He would only cut a live tree out of necessity so he scoured the undergrowth for fallen branches.  Deeper  into the wood he trod  past the cave of the hermit . Empty for years but the footprints of his presence still visible in the ravaged devastated  shelter a little further on. Torn apart by the village youth when they grew brave after his departure. The woods had once been a hub of activity  but now it’s ruined mine workings silent dilapidated and invisible overgrown by nature.  A stone tossed over the wall surrounding a disused mineshaft finally clatters to the bottom. Will it wake a sleeping dragon . Maybe not today.

Patrolling his territory keeping the paths clear and  finding branches along the way trimming them with the axe to make them easier to carry home. Hearing a noise he stands surveying silently in the pose of a meerkat before hurrying on to the woods edge.  He inspects the holes deep into the hedge two of the tunnels used in the night as the Badgers forage. Marking the earth with their claws as they searched  for food.

Moving on he reaches the platform in a tree and scrambles up it.  He can see for miles across fields and woodland  all is quiet on this chilly day.  He climbs down and peels some bark  from a birch tree. Paper thin it can be used with thin twigs instead of paper to start a fire, but not today with no leaves on the trees the smoke may be visible from a distance.  So he plods back gathering a few branches dragging them home whilst watching and listening  for the monsters of the wood. He is yet to see them but he knows they are there. One day who know what could happen.

He arrives home and gets a saw and whilst cutting the wood into logs a voice calls from the house “Jonathon  where have you been?” The 9 year old boy replies” nowhere Mum just got some firewood.“

reflect

This was part of my childhood. I explored woodland , climbing not only trees but water wheels, fished in lakes and streams, lit fires, built shelters, accidentally entering abandoned clay dries, no field had a hedge that couldn’t be climbed over . Boundaries were for other people   A tractor in the field oh shit keep walking  head for the gap in to the next field.  I was rarely challenged.  I had quite a large territory  and no one knew where I was . I had freedom , no social media and no mobile phone.  I had some instances of bullying in my childhood but here I was king. I was in my own Kingdom and couldn’t be touched. Even now I sometimes retreat to quiet places where I can just drink in the  solitude.

I could never give my children quite the same freedom.  In this day and age I would have a visit from social services if I gave a child a sheath knife. Yet to me it was a tool. I could make a bow and arrow.  Although my accuracy with any bow I made was lacking.

I live in Cornwall a beautiful place and although things have changed I urge you to give your families the freedom and opportunity to be free. Children have the benefit of a sense of wonder and if you let them use it , it will always be with them. In these days of constant demands of modern life and the controlling aspects of social media. Maybe they need it more than ever.

The past few years I have posted a Xmas message and although late this is it Merry Xmas and a happy new year.

Love to all

Jon

 

The leg end of Brexit -Pantomime

Usually a Parkinson’s related blog but this year has been dominated by politics so here is a one off political commentary.

2017 The Year of the Pantomime

This is the year we began to replace Brussels European Circus with the good old British Pantomime. To mark the occasion it was announced a new pantomime would be written and with a view to get public support for her script- She called for a vote for the “Scripts” with the provisional title “Manifesto- The Legend of Brexit” This was based on and old myth that escaping from Europe would reveal Aladdin’s cave and while Dick Whittingtons fat cat guarded the treasure the Magic could be used to fund the health service allowing the the sick to healed whilst everyone lived happily ever after” There may be script changes but it was definitely a leg end, something was a foot.

In May the auditions were held and the public got to decide by vote after watching several performances of Oh no its not , Oh yes it is.  Jeremy Corbin won the roll of Lord Hardup the villain whose offer of sweets (payment of student loans) to the young was popular until they realised the sweets were imaginary. 

The vote led to several script changes and the strangest cast but they started to rehearse. Everyone joined in shouting he is behind you to Widow Teresa Twankey who became very dizzy from continual turning around to check.  She sent her White Knight Sir David of Davis to fight Brexit foe and win the golden future. Cunningly she gave him no sword instead gave him a pen. Everyone knows the pen is mightier than the sword and also a damn sight cheaper.  Unfortunately it was filled with invisible ink and he failed to even graffiti the other knight who merely cut off his hand when he tried to grab him by the trade deals.  After finding out his pen couldn’t even writes the fortune the fortune tellers of Brexit decreed the White Knight called for Widow Teresa Twankey. His opponent delighted by her vulnerability showed her civility whilst agreeing the ticket price so she could enter. Curtains down for act one as it is finally noticed the principle boy lacks principles. We eagerly await act two to see how the understudy performs and if the cast can dance to the same tune.

 

 

 

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

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