When Michael J Fox was diagnosed with Parkinson’s Disease aged only 29, the world was shocked to see a high-profile celebrity struck down with such a cruel condition.

At the time, few probably realised that Parkinson’s could affect someone so young. Again, when Muhammad Ali revealed he had the condition, diagnosed aged 42, there was widespread anguish at his plight at being diagnosed at such a young age.

But the harsh reality is that, while these two cases attracted huge attention, this is happening to people around the world every day. Figures from Parkinson’s UK suggest a rising population with the condition  – currently standing at 145,000, with 1,757 people aged under 50 living with the disease.

These are known as Young Onset Parkinson’s Disease (YOPD) cases. Although they officially represent 1.2 per cent of cases, misdiagnosis is common due to the persisting misbelief that people are simply ‘too young’ to have the condition. While symptoms are broadly the same as with Parkinson’s, around 30 per cent of people with Parkinson’s never present a tremor – viewed by many as a definitive sign.

Gaynor Edwards was 42 when she  was diagnosed. The charismatic owner of a PR and marketing firm in Tunbridge Wells went to her GP after two incidents which made her think she should seek medical attention – but Parkinson’s was still not immediately seriously considered because of her age.

“I had a frozen left shoulder, then things started to happen which I thought ‘that’s not right’. I drove an automatic car, so never had to worry about operating a gear stick, but on one occasion a friend parked my car for me and I couldn’t get the handbrake off,” she recalls.

“Then I was in a work meeting with a local councillor, which is something I’ve done many times and doesn’t faze me. All of a sudden my left hand started shaking like the clappers. I wasn’t nervous, certainly not to make me shake like that anyway, I just didn’t know what was going on. But of course in young onset, people don’t always display the tremor that is so associated with Parkinson’s, it is more commonly sparked by anxiety.

“I went to my GP, who was just about to retire and had seen it all before. While he did raise the possibility of Parkinson’s, he said my reflexes were too good for it to be Parkinson’s. I then went to a neurologist, who also said my reflexes were too good for it to be Parkinson’s. The nurses who were there were saying ‘It won’t be Parkinson’s, you’re far too young’ but nine months later, following a DAT brain scan, I was given the diagnosis. Needless to say, the bottom fell out of my world.”

Shocked by the lack of specific support given to young people with Parkinson’s, with no counselling or real support offered, just a “huge unfriendly folder of information targeted at older people”.

Gaynor was further troubled by the response from some quarters when she announced her diagnosis via her company’s Christmas newsletter.

“Some of my clients were great, but others dropped me like a stone. I presume they no longer thought I could do a great job for them. But the truth was I still had a living to make, I wasn’t about to drop dead – Parkinson’s doesn’t really impact on life expectancy – I wasn’t about to lose my mind, and of course I was still able back then to continue working. I was left questioning whether I should have told people or should have kept my diagnosis to myself. And that is not right,” she says.

Channelling her marketing and publicity expertise and frustration at the situation towards bringing about change, Gaynor created Spotlight YOPD, a UK-based charity with a global reach specifically for people with YOPD, to offer them the support and information they need to have confidence in themselves and their futures and their ‘Parkie Power’.

Since officially launching in January 2016, it has helped to support people of all ages, genders and professions. Among those working with Gaynor is 24-yearold Jordan Webb, who holds a Masters degree in psychology and is currently the youngest known case of YOPD in the UK. Another is Vicki Dillon, who took part in the recent GDNF trial and was featured in the BBC TV documentary on the pioneering brain treatment that aims to restore damaged neurons in Parkinson’s cases.

“One thing we all want people to understand is that we don’t have Parkinson’s, we have YOPD, and that’s very important. We don’t want to be seen as having this ‘elderly condition’ as we have to live with this for the next 30, 40, 50 years or more. The stigma needs to change, and not being seen to have an ‘old people’s disease’ will help with that. This is a hidden and sidelined community, there are no organisations really looking after us, so many feel abandoned,” says Gaynor.

“People are seen by geriatricians who don’t always necessarily understand YOPD, so aren’t always able to give the best advice. Even within the medical profession, as I found myself, you find Parkinson’s is written off as a possibility as the person seems too young to have it. But they could have YOPD, as that affects people of any age – the youngest diagnosis we know of is a two-year old in the States, while in the UK one of my YOPD friends was diagnosed at just eight. This is classed as juvenile onset so there is clearly no such thing as being too young. We need genetic testing on diagnosis to help us learn more about this.”

Gaynor believes empowering people with information – which includes people with YOPD, clinicians, researchers and the public in general – can help to bring about change. “I think when you are diagnosed with Parkinson’s, or more accurately with YOPD, you are so floored by it that it’s easy to just be accepting of your lot.

But we want to help people to have the confidence to ask for more, to say ‘this isn’t good enough’, to do their own research and find out where the best people and support are available, even if that means they have to travel beyond their local area.

“We need to say to people that no-one is going to care and understand about you and your situation more than you yourself, so get out there and find what is best for you. Check everything, if it doesn’t feel right to you then it may well not be,” she advises.

“But I think the way YOPD is viewed and the awareness there is among people in general is pitiful. I think people will presume that the same level of support is offered to us as it is to people with cancer or other conditions, but it’s sadly lacking. Counselling on diagnosis should be automatic, for both those diagnosed and their family. Depression is a symptom as well as a reaction to the diagnosis. Parkinson’s is caused by a lack of dopamine – one of the brain’s happy chemicals. On that basis, depression should not be too much of a surprising symptom.

“Suicide attempts are common in people with YOPD; mental health is a big challenge here. When you hear those words ‘You have Parkinson’s’ you cannot imagine the effect that has on people. There is no counselling being offered to help you cope. I went to my own counsellor, but I think it should be routine that there is someone there to help you process and better understand the reality of what you have to live with.

“There is no consistent diet advice, no financial advice, just an instruction to inform the DVLA, who will reward you with a three-year driving licence, and lots about palliative care – needless to say, that’s not what someone diagnosed with YOPD wants to read. Imagine you’re 26, you’ve got kids, you’ve got a mortgage to pay – you need to get your head around what has happened and you need help with that. I think many people expect we get support as standard, but we don’t, we don’t even get free prescriptions.”  Gaynor also passionately believes YOPD should be given its own NICE guidelines.

“In 2017, they put out some information which addressed pregnancy and Parkinson’s, which must have been directed at people with YOPD barring some medical miracle.

“But while they acknowledge juvenile onset, YOPD appears to be sidelined, despite being recognised as a rare disease in its own right.”

As part of her mission to secure these badly needed changes, Gaynor is a vocal advocate, also working with fellow charity The Cure Parkinson’s Trust. She has attended major events including the fifth World Parkinson’s Congress – held every three years – in Kyoto in June, as well as the European Neuro Convention at the NEC in Birmingham, along with Jordan and Vicki.

“Events are often a great way of meeting and engaging with people, and I think the World Parkinson’s Congress is fantastic. There are clinicians and neurologists there, alongside patients. It’s very rare in a neuro convention that patients are so central.

“Not everyone likes this analogy but we are the talking lab rats – why would researchers not want to hear our perspective? The humility and humour of the patients involved is just incredible, and that is helping to bring about change in itself,” she says.

“At the NEC, as with many events there is a lot of white and corporate blue, but we rocked up with YOPD in big gold letters, theatre-style, against a red satin curtain backdrop.

“Vicky and I were dressed in our 1950s dresses with big underskirts and YOPD slogan T-shirts. We want people to notice us and acknowledge us, come and talk to us and learn about YOPD and the realities of it. We sat on the floor, including Jordan who is 6’2.

“People would come over to chat to us but wouldn’t want to sit down, the most common excuse being because of their knees – but when we said we all had Parkinson’s, they joined us.

“We are committed to changing things for the benefit of people everywhere. We live with it and know the many changes that need to be made, but the main thing that we want people to take from Spotlight is that they’re not alone.”

Spotlight YOPD launched its ‘DON’T PANIC’ card at the recent NEC event. Healthcare professionals are invited to get in touch to request this resource, which can be used to offer support to their YOPD patients.

See spotlightYOPD.org for details.

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