Neuro Pasty

Neuro Pasty (ell of a pasty)

 

Attended a conference about PD

And heard my best hope was Neuro pasty

Unable to believe how lucky could be.

Living in Cornwall the home of pasties

 

I would find a Neuro Pasty with search

Out my front door I set off with a lurch

Ran to the bakers got there and did pant

My heavy breathing caused baker to rant

 

Had never heard of  this gastronomy

Steak and stilton his speciality

In the next was met with bemused smiles

No luck though with Barnecutts or Niles

 

Ran to the next to continue my quest

Never heard of it assistant professed

Bacon and leak or how about curry

Lamb and mint. Not now I have to hurry

 

Again and again I failed to find

This wonder pasty so I did rewind

An L of a pasty was what I heard

Yes neuroplasty a different word

 

Protect yourself join in some intense sport

Neuroprotection from fitness purports

My bakers sprint though so inadvertent

Served right purpose although by accident

 

 

At the recent Insight the online Parkinson’s conference one contributor made the point that over the years  our bodies evolved to cope with different circumstances. One of the main ones was food shortages. He even suggested that creativity and imagination was linked to needing food with those qualities helping with ideas for hunting or new tools for farming. Maybe I am just a throwback.

Anyway his point was that we who are well fed regularly every day are rarely active enough to burn the fat in our bodies and without us doing that on a regular basis our body limits the variety of its energy sources. Fasting may cause us to use fat and that particular change of metabolism could be neuroprotective.

Sorry I was digressing I will get back to the concept of Neuroplasty which suggests the brain has a certain amount of flexibility and adaptability. In some circumstances it can be retrained. This concept provides a basis for Exercise as Medicine idea. Exercise and movement is one way of retraining the brain.

In effect the movements recalibrate the brain but to do this successfully the training programs use simultaneous cognitive exercises as well. As we run through our life it is rare for our bodies to do tasks in isolation so our training needs to reflect that.

The other important factor is intensity. There needs to be a tough regular challenging element to get the full neuroprotective benefits.

 

There is now agreement from all over the world that exercise can hold back the effects of Parkinson’s Disease   and I would be a fool to ignore that so at the moment I am taking stock. I will update in my blog in the near future.

Thank you for reading

Take care

Jon

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World Parkinson’s Day

Today is a day where organisations all over the world band together to raise awareness of Parkinson’s. One of the messages is that activity and exercise really matter So to do my part I give you the PD Rap

 

Parkinson’s Rap

 

Put some wax on the trax and slide on onta here
Hane hane hane hane hane

Come out of the corner listen all round Improve to the groove get down to the sound
Active and free it’s time to move Get on down to the  PD groove

Liberte, egalite, au jourd’hui c’est tres tres tres
Voici l’opportunite nous Incroyables

You got to move they got to prove Exercise I said and they all approved
Bad vibes akimbo on the shelf
Bit of a rap thing going for myself

A passive life makes no sense at all
It only matters when you have a ball
Parkinson’s had some great   men
Let’s start that rapping thing again:

Michael, Billy, The great Ali, Bob Hoskins and yours truly
Frozen in the North and tremors in the South
We’re all shaking active for health Frozen in the North and tremors in the South
We’re all shaking active for health Active for health
So tired of those looking down on me
Don’t need their lack of empathy They stare and say, “just look at him!”
As long as you don’t stare at them
So many years of drugs I blink

I thought the time had come to think
About standing up and saying that
It’s time to move that’s where it’s at

I’m standing here inspired by them Let’s start that rapping thing again:

Michael, Billy, The great Ali, Bob Hoskins and yours truly
Frozen in the North and tremors in the South
We’re all shaking active for health Frozen in the North and tremors in the South
We’re all shaking active for health Active for health

These happy feet are all we need
Summoned the Gods and they all agreed
These feet won’t stop they’re in such a hurry
Stay in the groove in my head and I won’t worry Just staying fit can be neat
Get drunk on life with happy feet
Keep on trying to hold me down

Smile inside if I frown.

 

I’m standing here inspired by them  Let’s start that rapping thing again:

Michael, Billy, The great Ali, Bob Hoskins and yours truly
Frozen in the North and tremors in the South
We’re all shaking active for health Frozen in the North and tremors in the South
We’re all shaking active for health Active for health

Active for health

Active for health

Thank you Adam Ant as I used his song Ant rap as a template for this

Thank you for reading

Jon

 

Creative Writing

One of the activities I have suggested to maintain cognitive ability is writing poetry. This is an activity with much to offer and in fact seems very popular with People with Parkinson’s

I have used my creative writing as a sort of cognitive therapy. The most bizarre thing was however when I started I had no idea I was doing it.

Writing poetry involves more skills than just writing.  It starts with observational skills. When I write about something that has happened I think about what happened what I did and what others did. As I think about those things I also recall thoughts and feelings. As I choose my words I think about my thoughts and feelings. This aided me in making connections between my thoughts and feelings. Feelings then become less scary.

In effect my poetry became a type of cognitive behaviour therapy. One approach to cognitive behaviour  therapy is a thought diary. We all constantly have a stream of thoughts running through our mind. They are always there but you don’t always realise it.  When you start to write them down you start to realise how active you mind is.

 You can start to see patterns and how one negative thought can lead to another. It can become clearer which thoughts underpin which feelings. It can also become blindingly obvious which thoughts and feelings are irrational.

One poem I wrote 3- 4 years ago illustrates this

Monsters come in many guises

They can be all shapes and sizes

This a story of a monster previously known as unspeakable

This is the history of a relationship that is unbreachable

 

Insidious hideous lies in the shadows

My family can’t seem to see him now

When they report the things they have done

My children mention company of all but one

 

He lurks unseen emitting malice

His intentions cruel and callous

Yet to me they cannot speak

Not one mention of the freak

 

This monster takes human form

Most real monsters that’s the norm

He can hide in plain sight

Even step out in the light

 

As I ponder my next action

Some of my faculties form a faction

Warn to be careful a fraction

.I should consider their reaction

 

I find all not as it seems

Scenario nightmare not dreams

Intuitive I sense its schemes

He threatens current regimes

 

However he is all human

Despite all my assuming

They all know he is there

Protecting me children don’t share

 

For this man is no other

Than their Mums new lover

Although I have let her go

Cant share children Never No!

 

I realise I had been weak

So my children wisdom seek

I was not their bodyguard

They protect me although its hard

 

Monster in me jealous

Had made them speechless

To avoid hurting my feelings

Realisation sent me reeling

 

I cannot exclude from their life

New relationship of wife

Though it rends me to the core

Not one male parent there is more

 

A good man with good intentions

Good influence despite my apprehension

So I have opened my eyes

To children’s need I am more wise

 

Previously known as unspeakable

Now seen not a threat at all

In the light I can see him

Just a good man just Jim.

 

  Although I had accepted a separation one of the things I found hardest to deal with was the fact that I would see the children less. That was one thing but the thought of another man taking what I regarded as mine was on another level. I have been lucky that my daughters’ Mum has always been extremely co-operative and fair. She has been supportive of my role in the girls life. If I had not found an outlet in the way I did I believe those feelings would probably have spilled out in another more harmful way.

I previously wrote that “Writing allows me to rebuild the house in my mind that shelters me from Parkinson’s. It reminds me of lessons I have learned, and things to be grateful for”  However It can be much more powerful than just helping with Parkinson’s.

 

Thank you for reading

Jon Best

 

 

 

Catnap


IMG_20180324_221608

 

One thing that cats can do well is sleep.

Sofa snoozes and snuffles
Calm cat dreams kerfuffles
Proud hunter stalks his prey
Prepare to pounce start play
Under table for ambush
Foot passes triggers onrush
Skilled hunter cannot fail
Whirling blur chasing tail
Catty snores think cat themes
In slumber plots and schemes
With claws opposable
Fridge is accessible
After meal takes dream nap
Curled up warm upon lap
Contented cat had the cream
Slumber treats in cat dreams
IMG_20180324_213440

 

 

Sleep is vital for wellbeing and with Parkinson’s we have meds that make us tired in the day symptoms that disrupt our sleep at night. Maybe we need to be more cat.IMG_20180106_234938

World Poetry Day

World Poetry Day

I am just an unknown amateur poet. There are many more skilled and more inspired. I write to entertain you, make you smile and share emotions.  I write to educate, comfort, engage and sometimes to disagree. I write to express myself and I write because I want to change the world.

Reborn

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

 

I see ghosts

I see ghosts everywhere

Haunted by death

Haunted by Life

Some ghosts are just echoes

Or reflections

Haunting only one

Invisible to others

The ghost of

My former fitness

Invades my mind

Reminding of former glory

Joined by

the Ghost of my marriage

Bringing thoughts of

Happy family days

I could banish them

With the holy water

Of amnesia

And push them away

 

My own personal

Ghostbusters

Are surplus to

Requirements

 

These memories

Are part of me

Make me smile

No regrets

 

Embrace your ghosts

They remind us

By ghostly comparison

Why we live

 

Prosper

We hunger for hope

Kill with chemicals

Data brings death

Empathy absent

Corporate cogs

Manmade machines

People the parts

Human resources

Technical hostages

Slaves to our machines

Social media

Breeds human AI

Plague of cataracts

We turn the blind eye

As we disconnect

But what can we do?

 

Believe in yourself

Have faith in others

Invest in mankind

As kindness prospers

 

 

One Eye

 

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

 

Over a barrel

 

Death

One word

One purpose

Can we get a handle on it

Some will cry freedom

Some cry for those ,lost

As they roll out the barrel

Bullet in a china shop

Ricochet randomly kills

Trigger finger points to death

Tool with a hammer to fall

Cocked as a rite. Right to life?

Men claim for self protection

Butt can they holster egos

Or find the range to target

Not fake news the headlines fire

Full content of magazine

Emptied as gun salutes murder

One purpose

One word

Death

 

 

Armadillo on my pillow

I couldn’t sleep
Open eyes peep
On my pillow
Was an Armadillo
I said no
You have to go
He just sighed
And then replied
Stay awake
For my sake
Because you snore
All the more
Close your eyes
And my sleep dies
I turned away
What do I say
Under the moon
Me it did spoon
As i slept
It still kept
Body next to me
Like cutlery
The armadillo
On my pillow

 

 

Soul Cradle

My soul cradled in the love
of those close to me
Rocked gently
by their blessing

Soothed by their warmth
Strengthened by their faith
Nourished by their hope
My souls burden lightened
by their good wishes

My soul cradled in the love
of those close to me
Never alone

Thank you for reading. Please feel free to leave comments.
Best Wishes
Jon

How to be me? (Part 3)

Part 3

My Conclusions

I ended part 2 by saying my love for my family, my sense of humour, my kindness all remain. I am still me. 

My personality may change as my life moves on. It is important to see past the Parkinson’s to the person as perspective can be as important as reality. I have spoken to many people with Parkinson’s who struggle with apathy. It is hard to understand if this hasn’t affected you, but the key word here is struggle. I struggle with apathy because I don’t accept it. It can affect my behaviour but it doesn’t define me. It is part of my life and part of Parkinson’s but it is not part of my personality.

My behaviour is influenced by external and internal factors. I can behave differently to cope with limitations including my Parkinson’s. It is important that we with Parkinson’s do not blame ourselves by integrating effects we can’t control into our personality. If we can think through the position we are in we can remind ourselves who we are. It will easier for others to see us rather than Parkinson’s if we can see it ourselves.

The future may offer further changes to my personality but I believe the core of my personality will continue to survive and evolve, If we recognise the factors affecting us there will be some we can affect.

We can’t freeze our personalities in their pre-diagnosis state but we can look to understand where we have choices because there is much that is not preordained.

Thank you for reading. I welcome comments so if you have any thoughts please leave them here.

Best wishes

Jon

 

 

How to be me (part 2)

 

Part 2

My story

 

I was diagnosed 11 years ago and have had some of the issues listed in the introduction.  Parkinson’s is a complex condition and we don’t all experience all the symptoms.

Personality is not a fixed situation we do change as we experience life and changes may happen anyway. My father as diagnosed with cancer and at the time I felt he had changed. In his younger life he had seen terminal cancer in his family and seen loved ones suffer. His diagnosis brought his experiences of cancer to the surface and naturally he reacted to them. This is an extreme example but one that demonstrates these sort of changes are not exclusive to Parkinson’s. 

Anyway back to me and this will be from my perspective. When I was diagnosed I felt I was hurting my family this was not a conscious thought but I felt somehow at fault. This changed my goals a little, with me wanting to prepare my family for a time where I could do less for them. I don’t see this as personality change as it arose from my love for my family and any other threat to my future could have produced the same impact. At odds with preparing them to manage without me I wanted to do things for them while I could. 

Role change also had an impact. Parkinson’s can change your role but it is more complex. It’s not only your role but your perspective of it. I will go farther as others perspective is impacted too. In the period before my marriage broke up my step daughter was diagnosed with an autoimmune condition that is as serious as my Parkinson’s . It must have seemed an incredible weight on my wife shoulders facing a future with two close family members with health conditions. It was a couple of months later that I felt perceptions of me had changed. For example my driving was an issue. I could accept it changed but was horrified when it was suggested that my different opinion on my safety was reflecting a lack of care for our children’s safety. My driving behaviour was different more less confidant but my care for our children had not changed. 

The biggest personality/behaviour change came after my marital separation. Emotionally I withdrew. I became less reliable at work as the apathy set in. I suffered compulsive behaviours. Some of these issues I would have had without Parkinson’s. Some were worse because of it. The compulsive behaviours were not complete changes but I was not capable of applying the same level of control to behaviours I was prone to.

Again, perception played a part. Smaller factors like my quieter voice, not smiling as much, not talking as much whilst driving the car suggests I was less engaged but actually they were all physical symptoms. Tiredness was the worst physical symptom robbing me of the ability to respond to the situations with any meaningful determination.

I got through that and now after changes in my medication things are different. I’ve changed again and different to the person I was before Parkinson’s but most of the important things are the same. These include my love for my family, my sense of humour, my kindness. I am still me.