The aim of Spotlight YOPD is two fold:

• To raise awareness of Parkinson’s as a condition that affects the young (under 50s) as well as the elderly – in a bid to get better treatment (whatever the postcode).
• To give the newly diagnosed the strength and support to stand up, be counted and help themselves – by working with their neurologist, PD nurse and GP.
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The Benefits of Exercise

Love That Racket

PD, by its very nature, is unpredictable. Julie Walker uses that ‘element of surprise’ to her advantage on the tennis court, having taken up the sport – almost by accident – post diagnosis. Here she serves her first article for Spotlight YOPD.

Julie on court

I was diagnosed with early onset Parkinson’s at 44 in November 2012.   I have a walking stick and a blue badge and you might not want me as a tennis partner. On the tennis court: I am slow, I am clumsy, I shuffle. This may not come as a surprise, after all I have just told you I have a degenerative neurological condition, which affects movement.

On the tennis court I am an oxymoron: I can run, I change direction, I have co-ordination. If your ideal tennis partner is someone tidy and helpful with a sassy walk then don’t pick me. If however, you want a tennis partner who plays twice a week, is competitive and quite often confuses the opponents into miss hits, then choose me.

On the tennis court, the game is not the problem; it’s picking up the ball, walking between ends, tidying up and walking to the car park. I obviously need a racket to play, but could also do with a walking stick to change ends.

When I play tennis I don’t have PD.

(more…)

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News The Good, The Bad & The Ugly

The Sticky Subject of Alpha Synuclein

pic credit : Thomas Splettstoesser (www.scistyle.com)

Lisa V tries to keep it simple and explains the deal with alpha-synuclein. Originally published online a couple of years ago when a-SYN was still new to the PD community, this article has been updated in the light of more recent research. All evidence from then and now points to this sticky substance being the cause of Parkinson’s.

Let’s gets a couple of abbreviations and definitions out of the way first:
a-SYN is Alpha-Synucein.
PD is Parkinson’s (if you couldn’t work that one out, you’re really in trouble).
Aggregates are basically debris or detritus; organic matter produced by the decomposition of organisms.
Alpha-Synuclein is a sticky protein found throughout the body, but the motherlode is in the brain.

Ideally, the a-SYN protein appears to function in the loading of vesicles; small spherical bits of membrane that carry neurotransmitter molecules to the pre-synaptic end of a neuron. This, in turn, bumps into the business end of another neuron, allowing for the neurotransmitters in the vesicles to be released into the synapse.

The top is the presynaptic neuron; the bottom, postsynaptic. They are both separate neurons in this relay event, passing the baton. In Parkinson’s and otherspecific neurodegenerative diseases, it’s been found that a-SYN proteins are ‘misfolding’, creating clumps or aggregates. Like almost all proteins, after a-SYN is synthesised by the cellular machinery (i.e. ribosomes – they build long chains of amino acids, one at a time – exhausting!), it is supposed to fold in a certain way; the entire function of a-SYN is dependent on proper folding. If the folding goes wrong; the protein fails to function. The fall-out of this wayward behaviour is aggregation – crap everywhere that ‘gums up’ the works.

(more…)

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News

Clocking In for Young Onset PD

The above video launches our campaign marking the bicentenary of James Parkinson’s discovery of The Shaking Palsy – later named after him as Parkinson’s Disease. Please watch and share… We are asking that everyone – whether or not they have any contact with anyone with this neurologic condition – posts a picture of a clock on Twitter to indicate that our wait for a cure continues. Please use the hashtag #YOPD200.

You can post it any time this year – it doesn’t have to be this month… we’ll wait.

This campaign from @SpotlightYOPD is intended to highlight YOPD – Young Onset Parkinson’s which impacts on the lives of an estimated 6,500 people in the UK, diagnosed in their 20s, 30s and 40s. It also, inevitably, takes a significant toll of their families and friends.

Those diagnosed at a younger than expected age have longer to live with this degenerative chronic condition; longer to potentially wait in hope for a cure. Better treatment, care and information early after diagnosis will lead to a better quality of life with the condition. People with PD will be able to play an active role and stay in work for longer – benefitting society, their community and the economy.

On Tuesday 11 April 2017 – International Parkinson’s Awareness Day – we’ll be asking people to paste a screengrab of their smartphone clock set at 17 minutes past 6 or, ideally 18:17 in the 24 hour clock – to mark the 200 year wait. Please RT, spread the word and get involved. Please use #YOPD200.

 

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News

Politician’s Parkie Park Run

We thought MP for Torfaen, Nick Thomas-Symonds had already achieved a ‘personal best’ by getting Young Onset Parkinson’s debated and on record in Hansard – but, in fact, he’s going the extra mile (and then some)… This Saturday, 8th April – three days ahead of International Parkinson’s Awareness Day – Nick will be running the Pontypool Park Run to raise awareness of Young Onset Parkinson’s Disease and hopefully a few coffers for Spotlight YOPD.

(above) Nick in his bespoke Spotlight T-shirt

Since becoming a Member of Parliament in 2015, Nick has raised several issues relating to Parkinson’s, culminating in last month’s Adjournment Debate in the House of Commons. Focussing specifically on young-onset Parkinson’s, he name-checked SpotlightYOPD throughout the debate; further discussion – involving both sides of the house is imminent.

With an estimated 6,500 people under 50 in the UK with the condition – including those in England paying prescription charges – Young Onset PD is a very different condition with a different set of challenges for those trying to run a busy family life and further their career. Impacting on not just  them but their family, friends, employers and colleagues it impacts on many aspect of daily life. Often younger people with the condition feel confused, isolated, sometimes even stigmatised. They can feel as if they have slipped through the net – struggling to be diagnosed correctly in the first place and to get both a neurologist and specialist nurse in place, irrelevant of recommendations in NICE guidelines which can be a bit of a postcode lottery.

As well as tremor, rigidity, and slowness of movement, issues such as pain, cognitive impairment, sleep problems and depression can have a major impact on the lives of people affected. Hayley Huxley, a constituent of Nick’s and an ambassador for Spotlight YOPD, has provided a valuable insite into YOPD. Now 30, Hayley, mother of two, was diagnosed five years ago aged 25. Nick referred specifically to Hayley in the recent Adjournment Debate that he secured. He also praised the work of local Parkinson’s UK Branch Chair Len Burbidge. (more…)

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