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The MS secret that sparked a movement

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“It’s not the cards you’re dealt that matters, it’s how you play them that counts.”

For Jessie Ace, this is a mantra that inspires her every day.

It has helped her overcome her career dreams and confidence being shattered by her multiple sclerosis (MS) diagnosis, and underpins the positivity that now enables her to inspire so many others with chronic illness around the world.

Through her DISabled to ENabled podcast, Jessie has built a global following of people who turn to her for inspiration, after turning around her life and outlook since being told she had MS at 22.

When the news was delivered, she had just graduated from university, was embarking on a career as an illustrator and had even clinched a book deal.

“I suddenly felt I had lost my purpose,” she says. “I had a degree that meant nothing, the business I’d spent two years painstakingly building up was gone, and I couldn’t be an illustrator which was my dream and what I had loved doing since I was a little girl.

“At first I woke up one morning paralysed down my left side, completely out of the blue, but then later I lost use of my right hand too.

“It was the worst time of my life. As a student, I had these ideas that great things were going to happen, but then it was all over.”

Then came the bewildering search for answers.

“The worst part was not knowing where to turn, or who to turn to. The lack of information about MS in general was really bad, but there was nothing for young people, nothing for a young person to relate to who had just been given this devastating news.

“I knew nothing about MS and the doctor who gave me my diagnosis just told me to Google it.

“There wasn’t even a leaflet, or any advice, recommendations on who to speak to, nothing.

“As you can imagine, I found every negative story there was through my searches online and it was very scary.”

Finding other young people experiencing what she was going through also seemed impossible.

“There are local MS support groups out there, but that did not feel like the place for a 22-year-old to be.

“Everyone else there was much further along in their MS journey, people were in their 50s and some were in wheelchairs, and the outlook immediately became really scary.

“The idea of what I thought my future would be really freaked me out and I became really depressed about it.”

Determined to get on with her life, Jessie took a job as a glass collector in a local club, then went back to university as a student ambassador, before finding a job as a graphic designer in fashion. But all the while, she kept her MS totally to herself.

​“I didn’t tell anyone. You would look at me and think there’s nothing wrong with me as I don’t look ill. That is the thing with hidden illnesses like mine.

“I didn’t want to be pitied, or for people to make judgements, or to say ‘don’t lift that chair’. I just wanted to be me.

“I realised that the five people closest to you can shape your outlook and those around me gave me the support I needed.

“When you have a bad day, to have people close to you telling you that you can do this, you can get through it, tomorrow will be better, is so important.

“I also came across a book called ‘The Miracle Morning’, which helped me to build a positive mindset. My whole perspective on life began to shift.”

Spurred on by her wish to help support young people in her position, and with her new-found positive approach, Jessie began to share her experiences online.

“The way I got started building my confidence was by sharing my story on Facebook Live videos about four years after my diagnosis, while working on a wedding business. I’d never told anyone really about my diagnosis, so that was a scary thing for me.

“I mentioned on a video one day that I had MS and the response astounded me.

“Brides-to-be started asking for my advice for how they could navigate their wedding day with an invisible illness, how they could ‘pretty up’ their wheelchair or even how they could disguise their oxygen tank into their wedding dress.

“Before I knew it, people began reaching out to tell me about their illnesses.

“They said they had not shared their stories with anyone before, because they thought people wouldn’t get it. It gave me an opportunity to help others and helped me come to terms with my own illnesses.

“That was when I realised that my story was bigger than me and that my experiences could help people.” From there, Jessie’s podcast was born, alongside a Facebook group inspirationally-titled ENabled Warriors, which helps newly diagnosed people and provides a forum for those who don’t feel like they fit in with traditional groups.

Through its uplifting approach, thought-provoking content and often celebrity guests, the DISabled to ENabled podcast has become a hugely popular outlet for people young and old, with a loyal and growing following across the world.

“It absolutely makes my day to hear from someone that the podcast has helped them. I have been where many of them are, where they feel it is the end of everything, but sometimes it is just knowing that someone understands, and is there, that can make all the difference.

“Most podcasts like this are American, and I know a lot of people like that we are in the UK.

“Changing the support available for young people with MS is something I feel very strongly about, and we do have a lot of young people who interact with
us, but also a lot of older people too.

“I think for older people they perhaps haven’t had the chance to access something like this, so I know it has been welcomed.

“I want to help people have the confidence and the voice to share their experiences and their stories in the right way, as I know from my own experience how much this can help.”

Jessie, 29, is also teaching people how to make their own podcasts and plans to create a course which helps people to express themselves through writing, social media and the global online community.

She is also about to launch a book for people to use as a diary and planner, to keep a record of relevant information for themselves and medical professionals.

“I’ve created this for people to keep track of how they feel, their medication, hydration and the exercise they’ve done and there are daily sheets to complete.

“This can be really valuable to take to hospital appointments or your healthcare practitioner, instead of having to remember what you did on this specific date, you can have a record of it. It will hopefully lead to more productive appointments and outcomes,” she says.

“I have also taken inspiration from the book that helped me so much, The Miracle Morning. You can visualise how you want your day to go and the person you want to be.

“There are a series of ‘I am’ statements which can help shape your whole outlook for the day – to keep in mind that ‘I am confident’ or ‘I am full of energy’ can help you adapt mentality and give you a renewed focus, instead of thinking you are tired or today isn’t quite what you’d hoped.”

Having established herself as a prominent MS campaigner, Jessie has also become a writer and illustrator – reviving the dream she thought was lost – for many of the world’s biggest MS charities including the National MS Society, MS Society UK, Shift.MS and MS-UK.

She has also illustrated for Momentum magazine, MS Matters and New Pathways. From the dark days of her diagnosis, for Jessie, the future is full of positivity.

“When I was first diagnosed, I didn’t cope. I believed my life was gone. But now, it does feel great to be able to share my experiences with people who are just as scared as I was, and show them there is a way through, you can do this.

“Anyone who knows me will tell you I love quotes, and one that really resonates is ‘It’s not the cards you’re dealt that matters, it’s how you play them that counts.’ I think that’s really important.

“Having MS is not the end of anything, although it may seem it, and you are still capable of doing absolutely anything in life. Sometimes you just have to be a little more creative to learn how to do it. Once you get past that, don’t take ‘no’ for an answer.

“Never let anything stop you from what you want to do.”

Listen to Jessie’s podcasts at https://mmini.me/dtepodcast. Her book and planner will also be available via the website https://mmini.me/blog following its launch in April.

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Interviews

Making the shift from victim to survivor

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After having a stroke two years ago at the age of 39, former international swimmer Craig Pankhurst founded the charity Stroke of Luck to support stroke survivors through activity and exercise. Jessica Brown reports.

“Stroke survivors are in one of two places – they either see themselves as a victim, with a not very positive outlook,” Pankhurst says.

“Or they see their stroke as a bump in the road, but that no one will stop them from having a fulfilled life, just one that’s different to the one they were leading before.

“We put in a halfway line to move people from the victim to survivor mentality.”

Pankhurst wanted to build the charity’s website to enable interaction between stroke survivors and experts in neuropsychology and personal trainers trained to work with special population groups.

When the coronavirus pandemic hit the UK in March, Pankhurst decided to do live sessions on social media, where he brought in guests and spoke about his experience and the charity he’s set up – and says he got good interaction with viewers.

His efforts caught the attention of the World Stroke Organisation, which partnered with Pankhurst to create videos for stroke survivors for what they can do to aid their recovery safely at home, with the help of specialist physiotherapists.

The videos are uploaded by both Stroke of Luck and the World Stroke Organisation.

“I spoke to the World Stroke Organisation over a number of weeks and we agreed to collaborate to create story-specific exercise and activity videos for stroke survivors, to start releasing over 12 weeks, to see if they get good engagement.

“Then we’ll carry on, and do some more,” he says.

The videos are now organised into a library, colour-coordinated into red, amber and green, depending on the viewer’s ability. The library also includes specific videos for carers.

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Interviews

The man who couldn’t see numbers

The unusual case of a man who can’t see numbers has led researchers to argue that the brain can process things without a person being aware of what they’re looking at.

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Researchers from Johns Hopkins University studied a 60-year-old man known as RFS, who has a rare degenerative brain disease that prevents him from seeing numbers two to nine.

He would describe seeing one of these numbers as a tangle of black lines that changed every time he looked at it. He had otherwise normal vision, and had no problem identifying letters and other symbols.

The problem would happen before he knew which number he was looking at, which meant his brain had to at least know that numbers were in the same category before something could then go wrong; study author Mike McCloskey tells NR Times.

“It didn’t matter how we presented digits to him, they were always distorted,” says McCloskey, a researcher in the Cognitive Science Department at Johns Hopkins University.

The researchers didn’t know what they were looking for when they started working with RFS, as this specific pattern has never been recorded before. The closest recorded cases are of patients who see distorted faces.

The researchers, whose findings were published in the journal, ‘Proceedings of the National Academy of Sciences,’ also found that RFS couldn’t recognise anything placed near or on top of a number.

They recorded RFS’s brainwaves while he looked at a number with a face embedded on it, and found that his brain detected the face, even though he was unaware of it.

“In one experiment, we showed him a big digit with a face on top of it and recorded EEG signals to see how his brain responded to the face.

“Even though he couldn’t see the face at all, we could pick up a response in the brain 170 milliseconds after the face was presented.

“We saw a perfectly normal brain response to the face, which told us his brain unconsciously identified the face as a face, even though he wasn’t aware of it at all.”

In another experiment, they put words next to the numbers and told him a target word. When he saw the target word, his brain had a bigger response even though he said he couldn’t see the word. They also did tests where they placed a number in front of RFS and asked him to guess what a number was, to test implicit knowledge.

“Sometimes, blind people say they can’t see a light, but can often point to it accurately when forced to make a guess,” McCloskey says.

“We did that with him and saw absolutely no indication he had any implicit knowledge. He couldn’t tell us if numbers were the same or different, odd or even – yet the EEG showed his brain was responding.

The reason it could just be numbers that are affected, he says, is because evidence suggests the brain treats categories of things differently.

“Furniture, fruit and vegetables, for example, may be treated separately, so it’s possible for some areas to be affected and some not.”

The findings demonstrated that the complex processing needed to detect words, numbers and other visual stimuli isn’t enough to make a person aware of what they’re seeing.

“We can draw conclusions about what’s necessary for you to be aware of what you’re seeing. You’d think that, if the brain has done enough work on something to know it’s a face or a particular word, you’d be aware of it.

“These results tell us the brain can do an awful lot of processing on something you’re looking at without you being aware of it at all,” McCloskey says.

“Something else needs to happen after the brain has identified what it’s looking at before you become aware of it at all. ”

And the reason these findings apply to everyone else is because the researchers assumed RFS’s brain was the same as anyone else’s, except for this one thing that went wrong.

“In order to become aware of something, you have to do more than processing to allow you to identify what you see – we think this is true for everyone.”

As for RFS, who was a geological engineer, the story has a happy ending.

“Because RFS couldn’t see regular digits, this was a real problem for him. We created a new set of symbols for him for digits, to see if he could use those,” McCloskey says, as well as a calculator on his phone using the digits.

“He learned them very easily – we wondered if they’d get distorted for him but fortunately, they didn’t. He says he’s been using the symbols ever since – he uses them in his daily life and stayed in his job two years longer than he would’ve otherwise, because of them.”

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Interviews

“Assume brain injury” after domestic violence, researcher urges

Domestic violence survivors in hospital should automatically be tested for traumatic brain injury (TBI) because they, and doctors, may not be aware of the symptoms.

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That is according to researcher Jonathan Lifshitz, director of the Translational Neurotrauma Research Programme at the University of Arizona’s college of medicine.

When a patient goes to the doctor with a cough, they’re tested for numerous diseases to rule them out, but with intimate partner violence (IPV), Lifshitz says, we should “flip the script”.

He tells NR Times: “If the individual doesn’t have encyclopaedic knowledge of what TBI is, they may not offer all the symptoms up to their healthcare provider.”

Similarly, the brain injury itself may prevent the patient from being able to detect their symptoms.

Instead, practitioners should suspect that victims of IPV have a head injury, so they can be tested.

“If we tested all people experiencing intimate partner violence for TBI, and are able to screen them using objective tests, we’re going to have far fewer people who experienced intimate partner violence and go untreated,” he says.

In one study, Lifshitz found that 62 per cent of people subject to IPV and diagnosed with TBI were unaware of their TBI when they sought treatment.

While it’s a challenge to determine that someone has TBI, the risk of missing something, Lifshitz says, is much greater. And while increased testing would incur more cost, due to additional testing, Lifshitz says it would save money.

“An individual may be able to hold down a job better, be less dependent on services and won’t need healthcare services as much in the long run,” he says.

Lifshitz is involved in the Maricopa County Collaboration on Concussion from Domestic Violence (MC3DV), a county-wide collaboration in Arizona. It aims to increase the suspicion of head injury by analysing health data for patterns and problems that can be targeted with a county-wide approach.

It educates police officers to recognise symptoms, social workers to better identify abusive relationships, emergency services to profile forensic evidence and clinical partners to assess and treat symptoms of TBI and concussion.

Also, prosecutors through the Maricopa Country attorney’s office are supported in being able to build their case against the assailant; while scientists and process developers also help to bring everything together.

Meanwhile, social workers and nurses are educated on the signs and symptoms of TBI, proposing an objective measure where head injury is implied.

Hospitals are a key area of focus for MC3DV, where one challenge is rebuilding trust between medical practitioners and patients who have previously suffered discrimination, and as a result have a lack of trust.

“It would be easier to implement this change in one crisis shelter or emergency department, when we have the opportunity to regulate and control the organisation we’re working with and we can put in new policies and procedures,” Lifshitz says.

“When trying to coordinate multiple systems in multiple organisations, it’s much more challenging.

“While everyone is receptive to the topic, the problem is having enough resources to do it.”

MC3DV is also hoping to replicate state-wide efforts made in 2012 to better detect evidence of strangulation.

As a result, Maricopa County prosecutors attributed the rise in domestic violence prosecution and decrease in domestic violence deaths to this change.

“Arizona recently changed the way the legal system deals with strangulation, in terms of how it sees evidence,” Lifshitz says.

“Prosecution is much more rapid and severe; it’s unburdened the legal system because many more cases are starting as guilty.”

Lifshitz hopes better testing and evidence gathering will act as a deterrent for abusers, and provide additional motivation for victims to step forward, although, he concedes, psychological, emotional and financial controls an intimate partner has over their victim complicates this scenario.

“A patient wanting to seek treatment is very different from the ability to seek treatment,” he says.

Lifshitz hopes there will be some real changes to come out of the research programme.

“I’ve always needed a bigger social driving force to keep me motivated. It’s unconscionable to know about this and not do anything about it.

“This programme helps to bridge the gap between social work, police work and biomedical research, to attack this problem from multiple angles.

“The majority of the work we do is stepping back, looking at what healthcare data we might have, and asking very specific questions.

“We sit around the table not necessarily with the smartest people, but with the most passionate people. It’s not any one person doing the work, but relying on a community of providers to support the victims and warn abusers.”

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