Making A Mark
You've heard it all before… Subject: female, 42, Journalist and PR. Presenting symptoms: insomnia, stress tremor, occassional limp, recurring frozen shoulder. Usual pathway – friends beginning to notice her symptoms. Goes to the GP. GP unsure, thinks/hopes it's probably stress but refers on to a neurologist. Pushed and prodded until "Parkinson's disease" the neurologist says. Usual stunned silence. Usual tears. Usual platitudes "we are in it together". Usual responses from friends - "but you're too young to have Parkinson's". DATscan says otherwise - young onset Parkinson’s disease. It even has its own acronym YOPD. Her ‘diagnosis buddy’, brought along for emotional support, you know, "just in case you're needed" drives her home. Prangs the car. The day can't get much worse. They head for the pub.
It doesn't really matter how the journey starts. It's where you take it and where it takes you. Read on.
With a training in journalism, the path was clear enough to Gaynor. There was a story here and, like all good stories, it needed research. She went online, not to fill her head with terrors as many do, but to find out where the story begins. She started with the two main charities in the UK – Parkinson's UK and the Cure Parkinson's Trust. One was focused on care of patients, the other on curing them. After a series of email exchanges with both she had a clearer picture of where she stood and what she could expect. The more she read, the more she felt that YOPD patients, being only one in 20 of all those diagnosed, did not often get addressed separately. Often their needs differ from those of older PD patients. Attendance at a local PD meeting confirmed this. "Apart from one other person who looked like a rabbit in the headlights, there was nobody my age present".
For the most part the needs of YOPD patients are different; different personality types, young families, money problems, even different drugs and different symptoms. It all points to a group that is small enough to slip under the radar but large enough to merit special consideration.
Somebody needed to represent younger patients, to understand their specific needs and to campaign on their behalf. It needed a rallying point for information, understanding and lobbying. The big charities, she felt, had to focus on their own agendas which meant that YOPD patients were being, in essence, sold short. Somebody needed to draw them out of the shadows and shine the spotlight on them. So she started a charity. As you do. And guess what she called it?
Spotlight YOPD.
It would be nice to say that the charity sprung to life more or less instantaneously, like daffodils before Easter, but nothing could be further from the truth. The sheer volume of paperwork and legalese tests even the most determined and dogged to the limits of their endurance. And probably just as well... but there was a goal in sight... As a registered charity Spotlight YOPD could become an official partner of the World Parkinson’s Coalition and literally take stand at the WPC in Portland that summer.
Her neurologist had already thrust a flyer previewing the event in her direction, at both of her two latest consultations. Around 3000 delegates from all aspects of the Parkinson's community, umpteen plenaries, symposia, workshops, posters and so on. This must surely be the place to learn the landscape. A crash course in YOPD. The only snag – it was in Portland, Oregon, half a world away.
There is an old proverb – probably Chinese, most of them are - which runs "ignorance of knowledge is weakness but knowledge of ignorance is strength". She needed knowledge and the WPC fitted the bill perfectly. This was where Gaynor would gather the resources needed for the charity – people, knowledge, networks and organisations. Even if she had to fund it herself, she was determined that Cinderella would go to the ball!
And what a ball it was…
She funded herself to attend the meeting, determined to suck the marrow out of everything it had to offer. Looking back she said “I described it (WPC) to others as ‘a mind-altering experience in the most positive way’.”
She very quickly got a feeling for the young onset community. “There is a sense of urgency, frustration and desperation in those newly diagnosed YOPD. By default they approach the leading charity when diagnosed only for so many to find there is little there for them. Many come away feeling sidelined and disenfranchised but at the WPC there are so many of us you feel that you have found your people”.
Above all, she learnt that everyone had their own flavour of advocacy. Some were scientists masquerading as patients (who can you possibly mean, Gaynor?) Others operated best at ground zero, scooping up the newly diagnosed and allaying their fears.
“At Portland I met a load of the old guard and I think that was hugely enlightening. So many newly diagnosed people ask ‘why has no one done this before?’ ... Of course they have and I’m very keen that the baton be passed rather than everyone start from scratch. It’s more about progressing and building on successes and learning from mistakes.
“I met Ryan (Tripp) - now sadly no longer with us, back then a WPC ambassador - at Portland. He wasn’t doing the science thing, he just made friends with everyone - he was a prolific networker. Ryan showed how to be a significant player in this world without having to fall down the rabbit hole of spending 24/7 reading research papers”.
WPC 4 was the making of Gaynor. She came to Portland with an embryonic charity and a thirst for knowledge and understanding. She left with a bulging contact book of people who wanted to help. And let’s not forget the dozens of people she temporarily “tattooed” with the words “Parkie Power.” Much more memorable than business cards which everyone loses anyway… and surprisingly resilient to soap and water - as many of us found out.
“Portland was for me a very much ‘feel the fear and do it anyway’ moment. By the end of day one I felt so welcomed and completely accepted. By day four I was in tears - overwhelmed by the whole scale of it. I had found my people. ”
Gaynor came to Portland as an unknown. By the end of the four days, everybody knew her. Along with the tattoos, she had made her mark.