A Grand Investment
Advocate and UK charity CEO Gaynor Edwards celebrates the WPC - which she first experienced in 2016 in Portland.
More than a decade ago I was diagnosed YOPD. In my case it was a correct diagnosis and I’ve been lucky to have slow progression - and a fabulous NHS neurologist. In the early days my new Parkie friends saw little evidence of symptoms - speculating as to whether I had the condition or not. Still now many haven’t seen me in an ‘off’ state - but then I’ve kept my smile and in the last few years most networking has been done from the neck up - on screen.
At the time of my diagnosis I was living with a close friend. He was then five years through his own disease journey - in his case cancer. It was painful for us both to endure. I’m aware I became more emotionally detached in an attempt at self-preservation. His two-year prognosis became seven years of joyless existence.
When my YOPD diagnosis came - I used it as my ‘get out of jail free’ card. Judge me if you must. My darkest hour had been and gone; I had contemplated what I would need to throw down my throat - in a house filled with controlled medications - to end my situation… permanently.
What stopped me was the little dog that I had just adopted. He was in situ by the time I was diagnosed. Now 15 years old, he’s been my main support throughout - both personal trainer and counselor - with oxytocin to spare. It’s one of the things I recommend to newly dx - ‘get a dog’.
To escape my then all-too-stark reality, I relocated to the nearest bit of coastline where I walked the dog on the beach, found a counsellor who ‘got me’ and managed my own working hours as a freelancer. We (dog and I) kept in close contact with our poorly friend but I can’t pretend it wasn’t a relief to stop waiting for death.
In 2015 my poorly friend finally passed - just three months after my dad. Between them they left me enough to bankroll the charity - Spotlight YOPD - in the early days. There was enough also to self-fund a trip in order to take up our free partner table at the WPC Portland in summer 2016.
It’s the best grand I’ve ever spent. I met a lot of people - great people, positive people, Parkie people, advocates, researchers, clinicians and charity workers… Many became friends; most still are. Parkinson’s takes its toll and none of us know what the future holds. A few I’ve lost touch with – some were misdiagnosed, others fought their condition until the very end.
As we now know - contrary to what we had been told for many years - PD is something you die from not just with. All have left their mark on me as a person and a Parkie. I tried to leave my mark on them too… I spent four days at the conference planting ‘Parkie Power’ temporary tattoos on my peers. I’m slightly embarrassed to admit that left a mark that many struggled to shift.
As a result of that first experience of the global community, Spotlight YOPD has always considered the bigger picture - the need to address young onset PD on an international stage. We aspire to a future where our various Parkinson disorders have been identified, understood, halted in their tracks, reversed (possibly) and certainly prevented in the next generation.
The World Parkinson Congress is the only neurological conference globally that allows patients to attend. Effectively giving them access to the best brains in the business. At the very end of the last WPC in Kyoto a room full of angry young men and women shared many opinions but one over-arching question – ‘why was so little being done for those with young onset Parkinson’s?’
Four years later, Spotlight YOPD is making its third trip to the WPC. As part of the YOPD working group, we can be found at the YOPD village - the first time Young Onset has had its own dedicated space.
We’re bringing a graffiti wall with us and asking - this time - for the YOPD visitors to the stand to leave their mark - writ large (or small - micro graffiti is welcome too) for a global audience to read. It’s a space where patients can communicate their thoughts, concerns, ideas and suggestions. Many comments will jump from the wall to social media platforms - to an audience beyond the conference center.
Visitors to WPC Barcelona please visit the stand - and communicate with the global community. Whether your intended audience is researchers, the Pharma industry or other organizations you are invited to put it in black and white. The days of YOPD being sidelined are over, we have come of age. To any ‘dinosaurs’ playing catch up there is one clear message - the writing’s on the wall.
Gaynor Edwards is the CEO of Spotlight YOPD & Co-Chair of YOPD Leadership Group at the World Parkinson’s Congress. Spotlight YOPD, is a charity representing those diagnosed with Parkinson’s under the age of 50. She founded the charity in January 2016, just a little over three years after her own diagnosis at the age of 42.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®