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.
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.
“I am determined to champion the needs of all those who suffer from Parkinson’s disease, whether it be in the House of Commons or by running 5k,” says Nick. “I was keen to put on my running shoes to help raise awareness for Young Onset Parkinson’s and funds for Spotlight YOPD. Running in the beautiful surroundings of Pontypool Park is, of course, a bonus.
“I would encourage Torfaen residents to get involved in a local Park Run; both Cwmbran and Pontypool have excellent events every weekend,” he continues. “They are a great opportunity to start running in a relaxed environment. I want to thank all of the wonderful volunteers who give up their time to make them possible.”
The benefit of exercise to PD is well documented. Spotlight YOPD encourages all ‘young Parkies’ to get out there and get moving, if they are able to. It’s the best way of telling your Parkinson’s to ‘jog on’. We would also ask anyone in that part of Wales to please go along and show Nick some support.
Anyone interested can sponsor Nick or make a donation via his MyDonate page – click on the button below. Alternatively old school types can send a cheque, made payable to ‘Spotlight YOPD’.