Life is good! Life is inspirational!

Posts tagged ‘Parkinsons’

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

Disability

When you have a disability
And a ‘hidden’ one at that
It’s not so much what you can’t do
That leaves you feeling flat
But the attitudes of others who
Just twist and turn the knife
With jibes and nasty comments that
Can ail and add more strife

The lack of understanding and
The fear to comprehend
The void of pure compassion or
Aversion to befriend
The cowering from all contact lest
The blame – indignity
The failure to see past the mask
Of disability

But those who stand out from the crowd
Who smile and take the time
To say hello or shake a hand
Tap out a different rhyme
That uplifts and renews all faith
In pure humanity
For smallest feats make largest steps
And mean the most you see!

English: A collection of pictograms. Three of ...

English: A collection of pictograms. Three of them used by the United States National Park Service. A package containing those three and all NPS symbols is available at the Open Icon Library (Photo credit: Wikipedia)