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Interviews

“Yes I have Parkinson’s, but I’m no geriatric”

Gaynor Edwards, founder of Spotlight YOPD, on her mission to change perceptions and awareness of the condition – and why the stigma has to go.

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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.

Parkinson’s is a key area of focus in NR Times. We cover the latest research breakthroughs, insight and personal stories related to this and other neurological conditions. Our readers include both professionals and families seeking the inside track on progress in tackling and better managing these conditions. Get your copy, filled with exclusive print-first content, every quarter for just £24.99 per year.

 

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Interviews

The couples therapist who rehabilitates love after brain injury

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Trained couple’s therapist and neuropsychologist Giles Yeates helps support couples and families and their connection and intimacy after a brain injury. He talks to NR Times about how couples can resume their sex lives after brain injury.

“It’s about reconnecting that sense of closeness and connection, I’m trying to rehabilitate love,” he says.

“After a brain injury, the focus is on the injury and regaining independence, rather than interdependence, but many families ask for this.

“When people talk about personality changes, saying the person is different and the connection feels damaged or wrong, couples therapy is way to help them find their way back to each other.”

But it isn’t the standard to offer couples therapy in the care pathway following a brain injury, Yeates says.

Many couple’s therapists who don’t work with neurological conditions don’t have the skills or understanding of the impact of a brain injury on a couple’s relationship and the heartbreak, he says. This is why Yeates focuses on a specific type of therapy that prioritises emotion.

“Emotionally focused couple’s therapy ticks the boxes straight away. It works on slowing people down. It’s about what happens in the sessions between couples.

“It’s neuro-friendly from the beginning, getting people out of their heads, to notice and communicate their emotional needs of each other that doesn’t engender further conflict, in a way that supports connection. It’s not a panacea, but it’s given as an option for couples to try,” he says.

Research, Yeates says, shows that the mental health of the brain injury survivor and their partner, and the strains on their relationship, all worsens from two to five years after the injury.

“Someone had a life-changing event and is in hospital, they lived, and they start to make improvements. Then, it’s only when they’re back home and the dust is settled do couples realise it doesn’t feel the same anymore.

“Or maybe the partner has to do a lot of physical care that has challenged the intimacy between them, that shows the emotional connection isn’t the same.”

It’s at this point, Yeates says, couples often decide they need help. But services may have fallen away by the time they reach this point.

“Often, services have fallen away by the time these needs show themselves. It depends on the availability of the community team or third sector organisation as to what support they can offer, which varies on the postcode lottery.”

Some people might reach out to a general couple’s therapist, Yeates says, who has no experience of working with people with neurological conditions, or a neuropsychologist who isn’t trained as a couple’s therapist.

“There are unique challenges here to consider, but accessing the right type of support is difficult.”

Yeates has found, from general feedback, that people would like to be asked more often by clinicals about their sex and intimate live.

“In the services I work in, I always ask people, and most people are relieved to be asked about their sexuality after a brain injury. For a survivor, sex after a stroke can be affected in so many different ways, in the same way people’s memories can be affected.

“People describe the experience of their sexual identity changing, of what turns them on being different, now, a sense of what feels possible to express themselves sexually is different now.

Perhaps they have cognitive difficulties that mean sex can’t be spontaneous anymore, for example, Yeates adds.

“From a couple’s point of view, it’s complicated, because a breakdown in sexuality can often be reflective of an emotional breakdown between them.

“Having therapy on how to do things differently in the bedroom might not be a priority for them, they might not feel emotionally safe or supported with their partner right now, and maybe this needs addressing first.”

When the emotional side of the relationship is good, Yeates says, couples should find ways to be supported to resume intimacy together.

“If someone is paralysed on one side, it’s about finding new ways to explore different positions, for example, or using physical aids, discussing ideas of how to express themselves and enjoy sexual contact in different ways.”

Yeates is happy to have noticed the uprising of a disabled sexuality movement outside of the brain injury area.

“The movement is saying that people with disabilities have the right to an exciting sex life, as much as anyone else.”

But this conversation is important for brain injury survivors, too, he says, as it’s important to think creatively and challenging norms to think outside the box of what sex is, Yeates says.

“This part of life after a brain injury gets overlooked and doesn’t get the attention it deserves. But for a survivor or a couple, it has loads of payoffs with mental health, wellbeing and connection.”

Yeates says there isn’t enough awareness among doctors, either. For example, he says, a person with a brain injury might experience side-effects of medication including loss of libido or erectile dysfunction, which can then lead to depression or low mood, but they often can get passed from a neurologist to a urologist, and no one speaks about things from the perspective of the person’s sexuality.

Yeates also works with brain injury survivors who aren’t in relationships, who want to develop the sexual component in their lives.

“I support people to use escorts a lot in my work, which is a contentious issue. There’s a lot of discomfort on the part of professionals, which is leaving service users high and dry to that dimension of their lives.”

But for those going to see escorts, the pandemic, particularly the lockdown, made it more difficult.

“In the lockdown, people can’t access sexual services in the same way. One client was able to resume going to a massage parlour and get intimate care, but the massage therapist was wearing a facemask and nothing else – if it wasn’t complicated enough already, this has added to it.”

Yeates has co-written a series of leaflets with Headway on relationships and sexuality, and a series of videos for Different Strokes on sex after a stroke, which can be viewed here.

 

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Interviews

The light and shade of brain injury recovery

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When comic artist Wallis Eates saw an ad from Headway East London looking for an artist in residence for the charity’s art studio, she knew she had to apply…

Headway’s East London studio provides a place for members, who all have acquired brain injuries, to create artwork.

Eates’ own line of work leading up to this included autobiographical comics, and digital storytelling with prisoners.

“I’d been looking for ways to help others share their stories or collaborate on story-sharing,” she tells NR Times.

Eates applied for the artist in residency, outlining in her application that she’d like to do comics of Headway members and incorporate their work into them. Eates’s application was successful, and she spent six weeks going into the studio three times a week.

“I was allowed to mill about, sit at the desk and ask what they were up to. They’d share their work with me, and I’d tell them about my project,” she says.

“They’d share experiences with me that I’d remember when I was looking at their work online, later, to see how I could combine it all.”

Eates says the experience made her feel inspired, and she came away with a strong feeling of the sense of community she saw in the studio.

“It was such a vibrant atmosphere,” she says. “I knew everyone was managing all kinds of stuff in their lives, stuff connected with their brain injury, and they were coming to the studio and creating incredible pieces of artwork.

“It reminded me of when I was in school when we did art and I wasn’t precious with it, I was doing it for the love of it. That’s what they were doing in the studio.”

The experience made Eates think about the individual and the collective, and she wanted to explore the dynamic between the two via shared experience.

Eates was taken up by Unbound, a publishing platform that supports people to crowdfund the funds to publish books. She’s currently halfway through her crowdfunding, before her finished book, Like an Orange, is published.

She says the name of the book came from several inspirations.

“One of the members I spoke with, who’d fallen down the stairs, said the brain surgeon he worked with said that the head is like an orange. That’s all he told me, but I assume he meant the elasticity, the texture.

“I later spoke to someone else who said the surgeon told her her brain was growing tumours like Saville grows oranges.”

 

Eates didn’t know anything about brain injuries before going into the project – and she’s learnt several lessons she hopes to pass on to readers of Like an Orange.

“I kind of knew brain injuries would affect everyone differently, and I went in with that agenda, ensuring the uniqueness of each member comes through.

“The biggest lesson I learnt was when we went on a daytrip to the Tate museum and I saw how invisible disabilities can be. Some of the members had nothing visible about them that suggested they were having a challenge walking down the road, but I knew they were,” she said.

“That really brought home to me how, when we go out onto the streets, we don’t know who we’ll be sharing that space with, we don’t know what’s going on with anyone who’s around us.”

“One chap kept going in front of the road or walking in front of people. At any time, we could be walking down the street and passing someone with a brain injury.”

Eates was also surprised to see such a positive atmosphere in Headway’s studio.

“Two members said they wouldn’t go back to life before their bran injuries,” she says, “because the lessons they’ve learnt have been more valuable since before then. It was extraordinary – I want to share these things in the book.”

Eates is looking forward to the members seeing their work in the final book.

“Most of them didn’t work autobiographically, they did artwork for the pleasure it, for escapism, focused concentration, and the joy of applying colour,” she says.

“It will be interesting for them to see how their artwork and their stories have inspired others.”

 

 

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Interviews

Scottish MP talks rehab, criminal justice and out-of-work assessments

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Interior of Scottish Parliament Building in Edinburgh

NR Times speaks with SNP MP, Lisa Cameron, about her background as a clinical psychologist and how long-term issues related to brain injuries are often overlooked.

Lisa Cameron’s attention is on countless important issues in her role as SNP MP for East Kilbride, Strathaven and Lesmahagow in Scotland, but she tells NR Times why she is particularly interested in policies relating to brain injuries. Before becoming an MP, she previously worked as a consultant clinical psychologist and is chair of the All-Party Parliamentary Group on Disability.

“When I was working as a psychologist, I was undertaking assessments of people with brain injury in relation to memory, executive function and language,” she tells NR Times.

“I’d routinely do assessments in practice, working with people on the front-line with brain injuries.”

Cameron also has second-hand experience, as her husband acquired a brain injury when he was serving in the Armed Forces. Thankfully, he received fast rehab, but the experience only highlighted to Cameron the importance of rehab and ongoing support for brain injury patients.

“I became aware from a personal point of view that these issues are often overlooked,” she says.

“Although someone might have treatment initially, often there are long-term consequences that go unnoticed, or support isn’t there over the long term and I feel it should be, particularly for veterans.”

Cameron often hears about the same pattern unfolding among her constituents, as well as problems accessing financial state support.

She has previously raised the issue of ‘inadequate’ personal independent payments (PIP) and employment and support allowance (ESA) assessments for people with brain injuries in the House of Commons.

“Someone with a physical disability has assessments with the Department for Work and Pensions to be assessed for financial support, where there’s often an underlying brain injury that may be historic on their medical records.

“But assessors don’t realise or understand that their functioning may not return to pre-morbid levels, and that there will be a residual impact on the person’s memory, potentially their language, their ability to plan and their executive functioning, and often these things aren’t picked up with benefits assessments.”

Unless someone has a really traumatic brain injury, Cameron says, they’re often not tested, despite the fact that much less severe brain injuries can often still have a massive impact on someone.

The coronavirus pandemic is exacerbating these issues, says Cameron, who is seeing diagnosis and assessments being delayed even more than usual in her constituency.

“That’s having an impact on constituents in terms of the support they have, and their access to appropriate welfare support,” she says.

Cameron has seen that, unless someone is admitted to hospital at the time of their brain injury, and undergoes extensive testing, there can be years of delay before the person is referred for assessments.

In Cameron’s constituency, there has been such a delay that a specialist service has been running outside of the NHS to alleviate pressure on the NHS for a number of years. She sees the positive and negative impacts this is having on the community.

“It’s preferable if services are conducted within the NHS, but the practicalities of things being the way they are currently mean that’s not happened, the NHS isn’t really able to manage this within the timeframe.

“For people who have been able to access it, it’s had positive benefits for them in terms of getting diagnoses, but the specialist service creates barriers where people can’t afford it, which creates inequality in the system.”

However, the service does get some referrals from the NHS to reduce patients’ waiting times.

“It’s good if people can access it from all backgrounds and it doesn’t undermine services the NHS is providing,” she says.

Away from her constituency and in Westminster, Cameron has found that, in her role as chair of the All-Party Parliamentary Group on Disability, there’s also a lack of understanding of brain injuries.

“People get confused between brain injuries and developmental disorders, spectrum disorders and mental health issues in parliament,” she says.

But Cameron has found this isn’t unique to parliament.

“When I worked in the prison service and going in to do assessments on people, there was a lot of underlying brain injuries that were unassessed. They were demonstrated in terms of impulsivity, lack of planning and poor executive functioning.

“This is a huge issue that needs to be addressed within criminal justice.”

Cameron says there should be basic training for prison officers around spotting brain injuries, and routine testing and assessments for brain injury when people are placed on remand.

When Cameron visited prisoners, she’d hear about prisoners who’d had three or four brain injuries, but no one linked it to difficulties they were having until she asked about their memory or executive functioning.

“Awareness training for prison officers and police officers would be helpful, and assessments for people on remand or in the system already, to ensure they get adequate support and any particular issues linked to their medical condition can be flagged up. This would definitely help recidivism rates.”

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