Virtual Arch to Arc for Parkinson’s UK

This blog has always been dedicated to raising awareness of heart conditions, but this week we are raising the focus of Parkinson’s. Parkinson’s is a progressive neurological condition which means that it causes problems in the brain and worsens over time. There is no cure!

My father had a Parkinsonism condition called progressive supernuclear palsy. It was a beast of a condition which robbed him of his ability to speak, walk and swallow yet even more cruel in the sense that he retained capacity and was aware of everything that he was being subjected to. He died in 2017, 10 years after diagnosis. This year marks the fifth anniversary of his death. Therefore both cardiac conditions and Parkinson’s are close to heart.

Dad! Circa 2011

As a result, I will be joining Parkinson’s UK in a sponsored “virtual arch to arc” alongside their chair of trustees, Gary Shaughnessy who will be completing a gruelling 83 mile run from London to Dover, a 21 mile row across the Channel and a 186 miles to Paris. Wow! Right?! Those completing the virtual arch to arc will together look to notch up the 300 miles of the triathlon at the same time with individuals contributing to the overall total in any way they can.

I have elected to attempt to cycle 50 miles (in the gym) as part of my mini challenge. However, as maybe ‘pathetic’ as that sounds in the light of the amazing efforts of others and in a world that pushes the bounds constantly in social media, for me it will be a major challenge. My fitness levels have crashed this year having struggled massively with my condition in recent months. Alongside the PoTS which I have written about in my bio, I suffer with atrial fibrillation, a surprisingly common condition whereby the heart ticks out of rhythm and at rates that can sometimes be eye wateringly high. It renders me fatigued and dizzy. However, for AF sufferers, there has been a lot of newsworthy attention on lifestyle modification in recent years encouraging people to maintain an exercise regime, very much the same as we encourage people with Parkinson’s to keep exercising. But when you have a chronic condition of any sort, it’s hard work and takes perseverance.

Dad and Me, 2015 (our last holiday in Cornwall)

Walking distance is out for me but using the recumbent bike in the gym should be possible. Therefore the 50 miles in the gym will be carried out in small bite size chunks over a time that allows me to safely complete the challenge. The main outcome though will hopefully be to raise funds for Parkinson’s UK who support patients, like my Dad, to live well with their condition through a dedicated information and support service as well as championing research in a quest to find a cure.

A cure can’t wait! It didn’t come in time for Dad but we are getting closer all the time. However, can you help?

If you would like to sponsor me, please go to https://events.parkinsons.org.uk/fundraisers/ginidellow?fbclid=IwAR0d_H1eun93iyZfe5cVPF0rp0VsF882myLwRjLGa61d43UNRMYF0P0cnPc

Every penny makes a difference.

Thank you

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Just Sit And Be …

Just sit and be

Beyond my four walls

I don’t think you can ever get bored looking out of a window. The scene changes minute on minute from the lighting to the colours to the moods. An ever changing gallery when we stop to look past the familiar to the wonders around us and enjoy every observation. So good for the soul.

Beyond my four walls

A Prayer

The Elephant in the Room

There’s an elephant in the room
No one will mention it
He sits with ears flapping about
And makes us all look twits
For each one knows he”s there
But dare not say a word
In case of waking up the beast
Or finding there’s a herd
Of pachyderms instead of just
This single elephant
Like opening a can of worms
What a predicament!

So Dumbo sits there, never moves
In the way of everyone
For to disrupt this elephant
May bring an end to fun
Or would it rather clear a space
In which to live and breathe
If this mammoth weren’t in the way
So much could be achieved
And life might be a tad better
Freed up to simply be
Happy, content, and unimpinged
In fact much more healthy

Elephant in the Room

Time To Change

It rapes the kindest soul
Tampering with truth
Ripping at the heart of reality
Laced in fear
Deluded
Lost
In a miasma of confusion
That depletes relationships
Tears apart self
Deprives the spirit
As a mask on the world
A cloak of psychosis
Where many are too afraid
To ask for help
In a world where stigma
Still wears a thorny crown
And shackles lives
In a mantra of lies
Under the guise of ignorance
Yet still how I pray
That chinks of light
Will break through these clouds
These fumes of misunderstanding
This fog of discrimination
Bias. Prejudice.
So that change will come
And come soon
For now is the time
Time to change
Now!

The Mirage In The Mist

Can you hear them? Can you see them?
The people in his head
That persecute his every move
And haunt the road he treads

Illusions in neural pathways
Apparitions of his mind
The ignis fatuus that burns
So bright he swears you’re blind

Can you gain the insights he believes
He has much like a gift
Yet which evade your reckoning
In stark paradigm shifts

For though to him these things are real
In your reality
They’re figments of imaginings
That you and I can’t see

But does that support or uphold
Him on this path he leads
Abused by all who laugh and mock
As slowly his heart bleeds

And is it right we judge and scorn
This man whom God has made
Leaving him in his wilderness
Confused; alone; afraid?

For though his thoughts seem abstract and
Beyond perceptual grasp
Let’s more so offer compassion
Give him a hand to clasp

Let’s see the man behind the mask
The person who exists
And with cognisance burn away
The mirage in the mist