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“Surely I wasn’t the only one who felt like this”

How a freak accident and a subsequently delayed diagnosis of brain injury changed Michelle Munt’s life forever.

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High above the M25, a buzzard cuts through the December sky. Scanning the tarmac below, it spots something edible and begins its rapid descent.

At ground level, Michelle Munt is driving her smart car, completely unaware that her life is about to change forever.

Traffic ahead suddenly slows. She takes her foot off the gas.

The lorry behind should be slowing too. But in those crucial seconds of reaction, the buzzard has smashed beak-first into its windscreen.

The driver can’t see the road, or Michelle, and sends her relative tin can of a car flying into the crash barrier.

“I can’t remember much about it,” says Michelle of her accident in 2014.

“I was conscious when the paramedics came but I don’t think I was making any sense. They quickly decided they needed to airlift me to a London hospital and had to knock me out for the flight as I was getting agitated.”

A fellow motorist noticed the company signage on her car and called her colleagues at the London Hairdresser Apprenticeship Academy; who notified her partner James.

“The first thing I remember is someone asking me if I knew who James was. They were asking where I lived and where I worked and I couldn’t answer.

“I was in hospital for 10 days. Every day they would do an assessment, asking me to remember the words red, horse, velvet and church and not once did I get it right.

“It was coming up to Christmas and they did another assessment to see if I was able to cope at home. This involves making a cup of tea. Initially I didn’t even notice I hadn’t put the kettle on properly.

“Then once I did make the teas, the woman assessing me had asked for a black tea and I’d put milk in it but I blamed her, rather than taking responsibility. I said ‘nobody has black tea so it’s a stupid thing to ask for’.

“To me there were a few things that showed my thinking process wasn’t quite right – the fact that I was so defensive and aggressive about the cup of tea, just wasn’t me. I would normally have said ‘Oh my God, I’m sorry.”

Despite feeling unprepared to go home, Michelle was discharged. It wasn’t until six months later than an MRI picked up her diffuse axonal injury.

Before then, she struggled to make sense of her post-accident self.

“I had foot-drop, weakness in my left side and they had just about managed to get me up and walking, but I was apparently fine to go home. When I first left hospital, there was no mention of a brain injury.

“Obviously, I had been in the neuro department so there was some idea, but we were left to assume that perhaps I had concussion.

“They kept saying that ‘we don’t really know what is causing these symptoms but it will probably get better on its own’. They didn’t really explain why I was struggling cognitively.”

In the months before diagnosis, Michelle struggled to read and write and it took several weeks for rehabilitation helping her to stand and walk to take effect.

Partner James noted that she had become a completely different person, describing her as ‘incredibly vacant’. The diagnosis came as part of Michelle’s legal case and was the catalyst for Michelle’s new role as a brain injury crusader.

“I always thought my case couldn’t be that unique because it was a car accident and it wasn’t that bad. If you saw the car afterwards, you wouldn’t think that the driver had sustained a brain injury.

“I started blogging about brain injury and found lots of other brain injury survivors were connecting with me. They were saying things like ‘I’ve been looking for the words to help to describe this and how to talk about it. Thank you so much’.”

This was the starting point for Michelle’s enterprise, Jumbled Brain, which now coaches brain injury survivors and carers across the globe. Part of this is a six-week self-study course featuring videos and online content.

Her website asks fellow brain injury survivors: ’Do you feel like something is missing? Everyone says you’re doing great and you should be thankful, and you are. But what if I told you that you don’t have to settle for the way you feel?

She also runs one-to-one consultations shaped by her own experiences, and oversees a closed Facebook group; enabling thousands of users to share their hopes and fears with people going through the same experiences.

“It’s a very talkative group with a lot of activity all the time. It’s great because members don’t have to worry about anything they say being shared all over the internet.”

Michelle also draws on a previous career in recruitment to help brain injury survivors back into the workplace. Her ‘Ace the interview masterclass’ and other videos on ‘nailing the interview’ aim to revive careers lost in the collateral of brain injuries.

“The interview process is scary for most people anyway. But with a brain injury, you might feel you’ve got something weighing heavily on you, or be worried that you’ve got a gap on your CV.

“You might also think that the interviewer is going to discriminate against you because of the brain injury.

“There is also a piece about what employers can ask you and what they shouldn’t ask you, what to tell them and when to tell them.

“You don’t want to get a job and then turn up on day one and say ‘oh by the way I can’t do this because I’ve got a brain injury’, but also you don’t want to be in a position where the employer gets absolutely terrified and turns you down as brain injury is such a big term.

“For me, when I had to give up my job and I lost my career, I lost my identity. You almost feel like you need a new purpose again.

“When you have a brain injury there is a disconnect between what your life feels like and where you want to be. You quite easily end up over-criticising yourself and you just lose all of your confidence.

“So I am helping them with that too. I help them to think about what their goals really are and try to find a way towards them. Especially when you have symptoms like brain fog, it is really difficult to think clearly and to put action plans together.

“I work with clients on thinking processes and how they can really take charge of their lives again, because when this has happened to you it feels a lot like everyone else has a role; the doctor, the physio and so on, but you are just someone who is doing what you’re told.

“Whereas I help them to regain some of that control over their own lives.”

Michelle finds much of her following in the US.

“Obviously, being online enables me to access a bigger audience than just the UK. What I like about being online is that if you do sessions which are pre-recorded, you can download them when they’re ready.

“Quite often when you’ve got a brain injury and you’re struggling with fatigue or you can’t concentrate, someone giving you appointments to say ‘we are going to talk about this right now’ might not work for you.

“Individuals need to be able to engage with it when they feel they can take it on board.”

Sometimes Michelle’s work is ad-hoc – a quick blog or video dispersed into the brain injury network. Often James is mentioned.

“We’ve been together for 11 years and for four of them I had a brain injury. A lot of people are interested in James because, for a lot of other survivors, their support structure fails. Family and friends turn away from them, so a lot of them do like to use James as an example that it doesn’t have to be like that.

“In relationships it can be difficult to have conversations, especially if you are talking to someone who hasn’t got a great memory. They might say the same things again and again and it gets difficult for others who don’t quite know what they should or shouldn’t say. It’s really hard on so many levels.

“I know I was sometimes a nightmare and for a lot of people that is a type of pressure that they just can’t deal with and need to walk away from. The more that such relationships can be protected, the better the outcome.”

www.jumbledbrain.com

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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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