What’s The Point Of Spotlight?
Spotlight YOPD was founded because Young Onset Parkinson’s had somehow slipped through the net, certainly in the UK – with a perception that it’s a condition of the elderly.
We hope to give those with YOPD the information, support and confidence to get the help they need for their own (very individual) life with PD. Our aim is to be an umbrella site for the best resources relevant for PD – and to work alongside and complement the other Parkie presence out there – from bloggers to networks, to the big boy charities.
Because many are chasing the same pool of money, charities can traditionally be a bit insular. They have overheads, wages to pay and a head office to maintain. We are just a website with a few quirky ideas to get the cause noticed.
NB. We said ‘the cause’ not ‘the charity’ – awareness and better treatment for those with YOPD. Publicity for the charity or the brand ‘Spotlight YOPD’ is incidental – the bigger picture is Young Onset PD.
There are some running costs for Spotlight YOPD – which we hope will be covered by donations and sponsorship. Any money over will be gifted to The Cure Parkinson’s Trust. Simply because they are trying very hard to do exactly what it says on the tin – a cure is always the end goal.
This site is a work in progress – and any site is only as good as its content. This is just the start. We will be linking to all charities, bloggers and resources out there. There is no obligation for them to link back (although it would be nice) and should they choose not to be listed or included – we’ll pop in a line saying they are out there and were approached.
We desperately need more Parkie (Man- and Woman-) Power to make this charity and website all it could and should be. We need good writers, fitness and diet experts, video footage and admin support.
What we’d really like is for those with PD – at any stage – to use us as a positive distraction, a cause and opportunity. They are the ones who know first hand what’s needed and where the problems are. Being positive is great, but a bit of channelled anger is good too. We even have a button especially for such outpourings – ‘The Good, The Bad and The Ugly’. We intend to use it wisely.
If you want to get involved – please get in touch. Ideas, suggestion and constructive feedback all welcome.
Stand Up And Be Counted
Spotlight YOPD takes its lead from the ethos of the WPC (World Parkinson Coalition) – of which we are proud to be a partner. We believe that better treatment and the cure can only be the result of greater communication and the sharing of knowledge. The insider perspective of the Parkie is as vital and relevant as the research of the neuroscientist. Putting these groups together is vital, as is encouraging each to have access to the other’s understanding of the condition. We invite young Parkies to come forward with their own stories, experiences and ideas – to share with others their knowledge, symptoms, way of managing and more.
One of the main aims of this site and the charity is to raise awareness of PD to the media and the public at large. If they know that Young Onset Parkies tend not to be tremor-based, commonly suffer depression and insomnia and often initially present with such initial symptoms as a ‘frozen shoulder’ – perhaps fewer will have unnecessary shoulder operations and more will be referred to a neurologist. No one understands the condition better than those living with it – with an awareness from the inside out. This message can be conveyed in many ways – words, audio, video. We don’t care if you want to convey your message through mime or modern interpretive dance, so long as it gets out there and is understood.
Those with press-worthy stories who are happy to talk to the media – please get in contact. We are happy to act as the press agent for YOPD and will match journalists with Parkies happy to court publicity.
Spotlight YOPD is all about shining a light on the condition and specifically how the impact is very different for young onset as opposed to the age more traditionally associated with the condition. We – those diagnosed with PD earlier in life – have longer to live with the condition. We have a greater need to therefore live as well as we can – by knowing and understanding treatments and symptoms, asking questions, requesting Physiotherapy, speech therapy, counselling – or anything else which may be helpful in each case. We also need more options available as advance therapies for when the oral medications stop working. Certainly we can’t have these choices taken off the menu or be subject to a postcode lottery.
Progress will only come by Parkies (politely) demanding more and helping their neurologists to understand the condition better. We also believe that two hundred years since ‘The Shaking Palsy’ was first written about a little bit of Parkie politics is in order.
Stand Up And Be Counted – Why Not Step Into The Spotlight?
The Ground Rules – A Cuddly Approach
Firstly, let’s just cover off some ground rules – in case anyone is offended already… in which case, we’re probably not for you.
Parkinson’s Disease (PD) is quite a long name and possibly confusing. We don’t want to scare anyone by them thinking it’s contagious. That’s the one thing we do know about PD – anyone can get it but you can’t catch it.
Wiki says: The term ‘disease’ broadly refers to any condition that impairs normal function, and is therefore associated with dysfunction of normal homeostasis. Commonly, the term disease is used to refer specifically to infectious diseases.
We don’t feel that last bit is useful to our cause – so we will be most commonly referring to PD as a ‘condition’.
Also loathe to be seen as ‘victims’, ‘patients’ or ‘sufferers’ – we’ll be using the default PWP (People with Parkinson’s) or the altogether more cuddly word ‘Parkies’.
PD is different for everyone, which makes it fascinating but often tricky to diagnose. The content we put ‘out there’ will be checked for accuracy. When and where we run personal stories, we will always make it clear that it is written from the individual’s perspective.
It’s human nature to want to talk to your peer group and get a personal recommendation. While that may be useful for recommending a hotel or getting a new mobile phone contract – your body and brain is bespoke and we all respond differently to different drugs. Opinions and experience is fine – but they are just that, and specific to the individual.
Help and advice is out there – and if it’s no right for you or you find it lacking, go back, ask for something more, something different. Seek out the professional support you need and want. The internet makes it a small world – and Spotlight YOPD hopes to help you open the door on it.
Enter the search term ‘Parkinson’s’ into Google images – and what does it display?
There are a few infographics, several diagrams of the brain, lots of dubious illustrations of elderly people with stooped posture… Then, of course, there’s the omnipresent photograph of aged hands – the ‘go-to image’ for every publication that’s ever written anything on the condition.
Now imagine that you are 32 years old, finally making strides in your career, recently married, paying off your mortgage, expecting your first child… Life is on track.
Then suddenly you hit the buffers. Three words delivered in a neurologists office: ‘You have Parkinson’s.’
Surely, you’re too young – even the nurse who preped you for the DaTscan told you that. Every news story a nd image you’ve ever seen about PD reiterated that message – Parkinson’s is an old person’s disease.
You don’t identify with these images or this perception. You don’t want people thinking you are ‘old’ or ‘broken’. You’re still young. You don’t look any different. No one need know. Let’s ignore it – it’ll go away.
A staggering number of younger people keep their PD diagnosis a secret – for any one of a number of reasons. Down the line ten years or so, this is often one of their biggest regrets. Stress and PD really don’t sit well together, and there are few things as stressful as keeping a secret. You can put your head in the sand, but with a condition where it’s very individual and there are still so many ‘unknowns’, knowledge is power. To get the best you can from life with PD and source the right treatment, a collaborative approach – working with your neurologist and PD nurse is advisable.
Like superheroes Young Parkies tend to have hidden identities – their Parkie alter-egos; their secret undetected by many of those around them. Some are more secretive then others – keeping their PD reality a secret from their friends, neighbours, kids, siblings, parents – even spouses.
We Could Be Heroes
Whether registered charities, bloggers or just Parkies with passion, the internet has given us global access to the PD community. We want to work with those already out there – promoting their activities and directing Parkies to the right resource for them.
We then hope to fill any gaps re: services required and introduce our own initiatives and campaigns. ‘Superheroes’ is our first campaign. We hope young Parkie community will embrace it – because who wouldn’t want to sign up to be a superhero?
Of course, behind every superhero there tends to be a genius doctor – even a neuroscientist or two.
OUR VISION IS THAT YOPD WILL HAVE UNIVERSAL RECOGNITION TO COUNTER THE STIGMA AND BETTER ADDRESS THE SPECIFICS OF A YOUNGER PARKINSON’S DIAGNOSIS.
Our five key aims working towards this vision are:
1. To have YOPD recognised globally by those diagnosed, their families, clinicians, researchers, pharma, and the general public as a separate rare syndrome – with many cases being genetic.
2. To promote whole-genome analysis of all those with YOPD in the hope of identifying both type and cause of the condition – enabling the sharing of knowledge on likely symptoms, side effects, and most effective treatments, according to the type.
3. To campaign politically and plug the gaps socially – helping those with YOPD gain access to not only treatments but also the benefits and support required whether emotional, practical, or financial.
4. To have YOPD understood as a long-term condition – with emphasis on a holistic approach to exercise, diet, counseling, better treatment options, and support – in order to produce dedicated NICE guidelines, outlining specific symptoms, treatment, and life challenges.
5. To accelerate diagnosis and give those diagnosed, and those around them, the strength and support to take control of their own condition.