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“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

Inspiring a brighter future for residents

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A neuro-rehab provider which opened its first facility in Worcester shortly before the first lockdown has succeeded against the odds – and now has plans to expand in 2021, as NR Times reports.

Inspire Neurocare provides support for people with a variety of neurological conditions, offering rehabilitation, respite and palliative care.

The firm opened its first specialist care centre in Worcester in February 2020, and this will be followed by further facilities in Basingstoke and Southampton in 2021/22. Inspire prides itself on a novel model of care that has “no limitations on the possibility of recovery,” all led by director of clinical excellence Michelle Kudhail.

A key element of the centre’s approach is the team’s commitment to understanding that every patient, and the circumstances that led them there, is different.

Whether this means enabling people to leave high dependency hospital units and develop their independence in a modern, home-from-home environment, or providing long-term support or end-of-life care, the service is designed to work around the needs of each patient.

Michelle’s background means she is the ideal person to head up the Inspire team, having worked as a neuro physiotherapist in the NHS until 2010, before moving into the private sector.

Michelle Kudhail, director of clinical excellence at Inspire Neurocare.

She takes an holistic approach to patient care, which has led to the creation of a team of life skills
facilitators and therapists at the provider, who develop their care around the needs of everyone.

“The life skills facilitators support and assist the residents to do as much as they can for themselves,” she explains.

“As the name suggests, their role is more than a carer; it is to facilitate the residents in all aspects of their care, whether that’s helping them get their breakfast, choosing what they are going to wear, or taking their medication.

“Their skills are broad because we want them to be involved in all aspects of the residents’ care; and because we want to provide what they need at the time that they need it.

“Roles such as this also enable us to evaluate the outcome of any action. If a resident has been given pain medication, a facilitator can assess whether it’s been effective, rather than a nurse giving the medication and then not seeing them until the next round.

“We also know from a therapy perspective that some patients don’t respond well to having therapy at a fixed time on a particular day; they simply might not feel like doing it. Our facilitators mean we can best provide interventions for the resident when they want them.”

Alongside this role, the facility also employs a wellbeing and lifestyle coach, focussing on the health and emotional needs of both residents and their relatives, particularly during a time when COVID has caused a lot of uncertainty.

Michelle says: “We wanted somebody that had relevant experience in working with residents, particularly with neurological conditions but also with a well-rounded experience so that they would not just focus on one aspect.

“The idea is to have somebody who can offer support in all areas, whether it be psychological, emotional or physical.”

Staff are overseen by experienced rehabilitation consultant Dr Damon Hoad, who shares his clinical oversight with the interdisciplinary team and supports patients on their journeys.

The rest of the clinical team have a wealth of experience within neuro services in and around the region.

The design of the Worcester facility draws on Michelle’s years of experience, and she had the opportunity to use her skills to help develop the purpose-built home.

She says: “We’ve had a lot of involvement all the way through from knocking down the pub that was there, to seeing it grow. Having the opportunity to be involved from the ground up was fantastic.

“Within the build itself we try to consider the needs of younger people, and so the inside of the home is very much a contemporary design and a lot of research has gone into its development to ensure it has the correct, up to date, equipment.”

Adding to the sense of autonomy staff are keen to foster, is the independent living flat, which staff are able to support via environmental controls.

With soundproofed rooms, residents can enjoy listening to music or watching films without disturbing others.

In common with all care facilities, the impact of COVID means that a lot of thought has had to go into the long-term plans for the property. The recently-built visitation suite – known as the ‘family and friends lounge’ – allows visitors to meet their loved ones in a safe and COVID-compliant way.

The suite includes separate access for visitors from outside, and features a large transparent Perspex screen separating each side of the suite, while an intercom enables contact-free communication.

As well as creating an infection barrier, the screen also assists when it comes to residents who may struggle to understand that they are unable to hug their relatives, while still allowing them to communicate and see each other up close.

After each visit, the room is cleaned and decontaminated in preparation for the next visit.

As Michelle explains, human contact is essential for emotional wellbeing, adding: “We’ve tried to create an environment that is as safe as possible, because we know how important visits are to the residents but, more particularly, to their relatives.

“Supporting the residents through this time is vital. We have residents that are used to going out and doing things in the community and we have had to adjust by being creative in the ways in which they can still access things that they enjoy and still communicate with their families.”

And while the pandemic has certainly delivered some challenges, Michelle and the Inspire team have been able to look at some positive outcomes.

She explains: “One of the positives for us is that it gave the team and the residents the opportunity to really get to know each other.

“We could also develop the life skills facilitator role to its truest form, because everybody was very much working together dealing with the crisis, supporting each other and supporting the residents.

“It was a testing time but it actually it brought the team together, bearing in mind the facility opened literally as everything was going into lockdown.”

The creation of the COVID-secure visitation suite is just one example of the creativity with which all at Inspire approach care, Michelle says.

By looking to build collaborations with other organisations, Michelle also hopes to share her hard-won knowledge, potentially becoming involved in research and training in the future.

Despite the upheaval of its first few months, the Inspire team has already achieved some successful patient outcomes.

One such success story is the case of Adrian, who came to the centre for specialist neuro-rehab following a car accident in which he suffered a severe brain injury. In the months that followed, Adrian’s journey enabled him to walk out of the service and return home to his wife and children.

(See Adrian’s story below – and read more here).

While the coming months may bring more challenges, as COVID lingers and vaccinations are rolled out, the Inspire team seemingly has the skills, approach and dedication to rise to whatever the future holds.

www.inspireneurocare.co.uk

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Interviews

‘My brain trauma caused my head to turn 180 degrees’

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Sarah Coughlin

Sarah Coughlin experienced the horror of her head facing backwards after sustaining a brain injury. Here she shares her recovery journey with NR Times.

“I was wondering why my windscreen had black lines across it – until I realised I was looking out of my back window.”

Sarah Coughlin recalls the horrific moment she realised her head had turned 180 degrees to face backwards, due to brain trauma she had suffered after sustaining a head injury.

In the immediate aftermath of the injury, Sarah recalls little seemed wrong aside from a persistent headache.

But five days later, when she woke up late and rushed out to her car, the extent of what had happened became all too clear.

“I could feel this searing pain through my shoulders and my back,” says Sarah, as she realised her head had turned around to look out of her rear windscreen.

“It was quite difficult to turn my head back around and keep there but after a while I managed it, though the pain did not go away.

“I thought I had just slept funny and once I had properly woken up the sore neck would probably calm down. But when I got to work I still felt awful.”

This began the long process of diagnosis, which took years to achieve.

“I went to A&E every week for three months because the pain wouldn’t go away and I was still getting neck spasms,” she remembers.

“I was told it could have been a slipped disc, a muscle injury or having slept awkwardly. It changed each time.

“I was in agony constantly, but I still wasn’t diagnosed for at least another two years.”

At first only Sarah’s neck and walking were affected, but over the course of a year she developed spasms, optical neuralgia, pressure on the occipital nerve which runs through the neck up into the scalp, causing tremors, fits, paralysis and fatigue.

Eventually, she was diagnosed with dystonia – a condition which causes involuntary muscle spasms and was the cause of her head rotating.

Doctors also told her she had a Functional Neurological Disorder (FND), a variety of medically unexplained neurological symptoms which appear to be caused by problems in the nervous system.

After her injury in 2014 and its consequences, Sarah could no longer drive, do her job as a teaching assistant – a role she loved – or take part in the same social activities as before.

She also lost touch with many of her friends and hardly left the house as she was scared of people staring at her and judging her for the way she walked and moved.

The 37-year-old, from Fazakerley, Liverpool, says: “I used to be quite fiercely independent – so to go from doing so much to not being able to do anything was the hardest transition.

“I felt a real sense of loss for the life I had when I was first diagnosed.”

In 2017, Sarah discovered The Brain Charity, a national charity based in Liverpool which provides practical help, counselling and social activities for people with all forms of neurological condition.

She made new friends by joining the charity’s craft club and received help getting carers allowance for her partner John and with finding a new home as she could not use stairs safely anymore.

One night in Autumn 2019, John woke up to find she had turned blue and stopped breathing as a spasm had caused Sarah’s neck to contort, closing her throat and airways.

The only solution was a specialist bed which cost £10,000, which was achieved through fundraising and grant funding. She managed to raise the money last year, and now has a bed which uses deep massage cyclo-therapy to improve circulation and reduce her symptoms.

Sarah is now a passionate supporter of The Brain Injury Charity for the assistance it has given, and is keen to encourage people to donate. The charity’s resources are currently under unprecedented pressure as a result of the COVID-19 pandemic, with a 70 per cent increase in referrals met with a huge decrease in fundraising.

“There’s lots of things I can’t do anymore but The Brain Charity has freed me from staring at four walls,” says Sarah.

“They helped me achieve goals that without them I wouldn’t have been able to do.

“It seems obvious, but the more money people donate, the more people the charity can give the vital support I found so important.

“I want other people to have that place that is safe and secure, in an environment with people who have had similar experiences.

“The Brain Charity has given me such incredible support and I’m so grateful for it.”

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Case management

‘I’d never imagined using Zoom as part of my physio placement’

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Tabitha Pridham is a third year student at Keele University. 

Every aspect of neurophysiotherapy has had to adapt with the onset of COVID-19, including how students prepare for a career in the profession. Here, student Tabitha Pridham discusses her experience of a pandemic placement.

Prior to the COVID-19 pandemic, the concept of physiotherapists routinely holding sessions with clients remotely was quite  unlikely.

While used to some degree in a small number of practices nationally, telerehab, as it has now become widely known, was not on the agenda of many.

But due to its seismic rise during the past few months, with physios realising the potential of digital and virtual means to see clients when meeting in person isn’t possible, it seems telerehab is here to stay. 

While it was never part of the studies of aspiring physiotherapists, they are now having to adapt to something that will most likely be part of their future careers.

“The very nature of physiotherapy is that it is hands on, so it seemed really strange to me at first that we would be using Zoom to do online physiotherapy,” says Tabitha Pridham, a third year student at Keele University.

“But I have seen how useful it can be, particularly for those patients who are very advanced in their recovery and maybe can take part in a few classes a week remotely. I think it can be valuable in addition to face to face treatment.

“I do believe it will carry on into the future, particularly in private practice, so have accepted that telerehab will be something I will be using in the longer term.”

For Tabitha, currently on a placement with neurological physio specialist PhysioFunction, telerehab is not the only big change from her expectations pre-pandemic.

“The use of PPE is something I have had to adapt to,” she admits.

“Every time you see a patient in person, you have to change gloves and thoroughly wash down equipment, to be compliant with the very high hygiene standards.

“This can be time consuming, and when you have back to back appointments I’ve found it can be quite stressful to ensure you’re doing everything you need to do in addition to your work with patients, but that’s something I’m learning as I go.

“Wearing a mask and visor isn’t always ideal for communication, but that’s something else I am finding gets better with time and use. Although it can be quite a juggle when you’re trying to treat a patient with one hand, and trying to stop your visor falling off with the other!”

Tabitha is based in the clinic four days a week, but has to work from home one day a week due to the need for a regular COVID-19 test, to ensure the safety of clients and colleagues alike.

“I have my COVID test every Monday, so I carry out consultations by Zoom that day, and providing my test comes back negative, I see patients in person Tuesday to Friday,” she says.

“I find the mix of telerehab and practical experience is really useful, especially as we are going to be using Zoom and the likes in the long term.”

Having had a previous placement cut short in April due to the pandemic, Tabitha is grateful she is able to get such experience, which accounts for vital clinical hours training for her degree course.

“Some of my year group were taken off their placements and have had to do everything virtually, so I’m lucky that I have been able to continue in a clinic,” she says.

“I’m still getting the same training, as aside from the PPE and new rules around social distancing, clients get the treatment they always have done so the practical work is the same.”

Tabitha is set to graduate in summer 2021 and has the experience of her studies, supported by three years of placements, to help her build a career in physiotherapy.

“In some ways this has been a really weird time to be working in physio, but in others it has been a very good time. This kind of experience prepares you for anything and everything, and the use of telerehab has shown me what it will be like in the future,” she adds.

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