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Posts tagged ‘PoTS’

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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Clouding of Consciousness

A neural mist descends
A heavy weight on mind
A plague of obstacles progress
Inhibiting in kind

A nebula that masks all thoughts
Miasmic effluent
That overwhelms and suffocates
Without release; relent

A haze within the brain
A vapored smog depress
To kidnap and take hostage life
Clouding of consciousness

This blog is dedicated to raising awareness of www.stars.org.uk who diligently support all those suffering from conditions that result in unexplained blackout.  The clouding of consciousness (also known as brain fog) is a nasty symptom of many of these conditions.  To find out more please contact Stars who can help ensure that anyone presenting with unexplained loss of consciousness receives the correct diagnosis, the appropriate treatment, informed support and sign posting to the appropriate medical professional.

Heavy mist

Heavy mist (Photo credit: Wikipedia)

 

 

Poetry

Today marks the first anniversary of Ginz&Tonic.  A year ago I pledged to post at least one poem a day for a year to raise awareness of the work of stars.org.uk.  You can read more here.  It’s been a fabulous year and 550 poems I remain so very grateful for all the support that you have all given and of course, remain, thankful for the work of stars.org.uk who continue to be such a valuable service for those who experience unexplained loss of consciousness.  If you would like to know more – why not check them out.

Poetry

The essence of my heart
True dreams, beliefs and more
The past, the now and future paths`
Expressions open door

Words paving through the banks of time
Emotions rolling tide
The tempest finding harmony
For calmness to reside

The soul dancing on open page
The eyes all gleaming bright
And harbinger of sentiment
Sensations perfect sight

Evoking feelings’ passion
Imagination’s fire
Aesthetic voice that weaves as one
Notions that might inspire

Extending past the stanza to
Paint pictures; imagery
Drawing in letters, rhymes and verse
A little bit of me

GinzandTonic

Brain Fog

The sun shines brilliantly
Enlightening the shadows
With a sheer luminosity
Glimmering rays of clarity
In the warmth of a summer’s day

And yet a mist is swirling
A miasma of the mind
A hazed clouding of consciousness
With depleted transparency
Held in the grips of a brain fog

A life encased in fatigue
Buried in oblivion
Where time disorientated
Impairs all conscious cognition
In the midst of a confused world

Heavy mist

Heavy mist (Photo credit: Wikipedia)

PoTS

We take it so for granted
When we jump up from a chair
And stand without a second thought
Or walk right over there

We take it so for granted
That our brain can turn about
Our heart beats and our blood flow
So that we simply don’t black out

We take it so for granted
When we can think with clarity
So our focus isn’t compromised
And our eyes can see clearly

We take it so for granted
When we’re revved up for the day
Bursting and full of energy
That will last in every way

We take it so for granted
Homeostatic stability
The simple things of everyday
Without disability

Yet many aren’t so lucky
For them life is just PoTS †
And a dysfunctional A-N-S*
Makes easy – oh so not!

For this condition sees the heart beat
Rise thirty beats or more
With palpitations on arising
That risk a colllision with the floor

Where life’s daily chores become a struggle
Where fatigue can be a pain!
And where the heart and brain in stand off
Result in PoTS: a constant drain!

Postural Tachycardia Syndrome

 

† Postural Tachycardia Syndrome
* Autonomic Nervous System

For More Information:

If you would like to know more about this condition please visit www.stars.org.uk