Catastrophic injuries have an ugly habit of robbing survivors of their dreams and ambitions.
Bucket list items like dancing with tribal warriors or eyeballing sharks in the deep can suddenly seem unattainable.
Even less exotic desires, such as skiing or sur ng, may be lost in the looming shadow of the fateful event.
Yet reviving these written-o wishes can have a dramatic and long-lasting impact on the rehab journey, says case management expert Maggie Sargent.
Maggie is co-director of Community Case Management Services (CCMS) and runs her own expert witness reports business.
Among people with disabilities and challenges caused by severe injuries or other factors, however, she is perhaps better known as an instigator of global adventures.
Skiing, surfing and safaris are all part of her efforts to encourage clients and their families to do things they had either given up on – or never thought were possible.
A popular fixture is a regular children’s ski trip, with 50 to 70 people including parents, siblings, support staff and volunteers jetting o to the slopes every year.
“I insist they bring their siblings as it’s so important that the whole family are involved. Also, if they are in a wheelchair [and therefore ‘sit-skiing’] it’s the one thing that they are probably faster at than their brothers and sisters.”
Another recent trip was a group holiday to Africa which took clients from ocean depths loaded with tropical fish to the reside of a remote tribe; and many places in between.
But the trips offer much more to clients than merely a week or so of fun and escapism, says Maggie.
“It gives them something to work towards in their rehab; a tangible goal.”
This involves a planning process which may encourage the client to think about how
the holiday will be funded.
Money from the individual’s allocated care resources may be used, but often the client will need to take a lead on raising charitable funds or saving for the trip.
Wrapped up in the holiday are several vital elements of rehab, says Maggie.
“We are giving them physio, speech and occupational therapy. In terms of physio, we’re looking to get the best possible physical benefits from whatever activity they are going to do.
“In planning and organising the trip, you are using OT skills, trying to be as independent as possible. Are there communication needs ahead of the trip?
“Speech therapy could include new languages or just looking at how the client is going to communicate. Mobile phones, radios, bleep systems and assistive technology are all things we might use.
“Also there is a psychological element. How are they going to get on with other people? What are they going to be doing on the trip?
“Half the fun of going on holiday is imagining what it will be like. This can be quite difficult if you are [disabled] and your last holiday may have been when you were an able- bodied 18-year-old, for example.”
The lure of an upcoming overseas adventure can inspire dramatic change in the individual’s outlook and motivation.
Often, it also forces families and loved ones to think differently and break out of the safe house they have built around the client.
“It reminds them that this individual is the same person they were before their accident or incident.
“This can be quite hard for the family to accept because the individual has been living in the cocoon of being a patient, looked after and not getting out there.
“It’s easy to hide from reality and so these trips can be a big reality check for families as well as clients.”
Understandably if their son or daughter has suffered a catastrophic injury, some parents require reassurances if they are consenting to something potentially risky like skiing. Videos play an important role here.
“For example, you may have someone catastrophically injured with quadriplegia and communication problems but bags of awareness.
“You can immediately see the feedback on the client’s face and how they respond. We sometimes record this and send films to families to show them how things are going. We might also take them to a dry ski slope beforehand to show what we’re suggesting is possible.”
The trips are not designed to feel like a once-in-a-lifetime opportunity to the client. Instead they are organised with the aim of creating a new, more positive sense
of normal, with less limitations and more possibilities.
“Unfortunately, so many people with a brain injury living with residential support just don’t have many people to go out with socially, to spend time with, go shopping with and so on. We are building up a tolerance to these activities.
“It’s also about getting back to normal experiences. A lot of young people have skied or surfed before and have been camping and travelled.
“But after their injury their world becomes narrow. Our whole idea is to make the trip feel as normal as possible.
“We include people who want to volunteer and those who want to come on holiday as a professional, so everyone is part of an interesting group of people. It’s about making sure the clients are given space to do an activity where they are supported but are not over-supervised and there is an element of normality about it.”
An important ingredient of the trips is the consistent stimulation they offer. This comes not only from flying down ski slopes or swimming with deadly predators, however.
It also thrives in the smaller things that make up a holiday. Fresh experiences can be found relaxing in the hotel pool, chatting with new-found friends over breakfast or marvelling at strange sights and sounds through a minibus window.
A common change in clients as a result, is greater engagement with others. Maggie recalls one brain injured 30-something who began initiating conversations after several group trips – having previously remained silent in social situations.
In another case, a young disabled man unable to communicate other than by making a few gestures, had a life-changing experience on a ski trip.
“He met another brain injured individual who’d been communicating with his own form of sign language for some years and was a real character.
“Within a week he had taught the young man hundreds of signs and he was able to communicate so much better than before. He was absolutely locked into this other man and the two spent hours after skiing communicating.
“He was desperate to start communicating after seeing someone else with a brain injury doing it. We took a physiotherapist with him and she was able to act as a conduit, helping him to work out how to make the signs.”
This case sums up what Maggie calls “the greatest force” of the holidays; the willingness and capacity of clients to help each other out.
A common goal, examples of other people overcoming challenges and a situation which takes people out of their comfort zone all encourage great camaraderie and teamwork, she says.
“What is surprising is the tolerance there can be between clients in wheelchairs and those that aren’t. There is a mutual admiration between people facing different challenges.
“People with brain injuries that are able-bodied tend to help those that aren’t as physically able, and vice versa.
“There’s a respect between members of the group who are doing a certain activity together and enjoying each other’s company with an open mind.”
This open-mindedness extends to Maggie and her team. When a brain injured young man expressed an interest in going skiing – they had the vision to see past the ventilator keeping him alive.
It took six support staff and five ski instructors, but the fact that he was up at 4am in the hotel, the first one down for breakfast and “the last man on the mountain” at the end of the day, suggests it was well worth the effort.
“When he was in Canada on a gap year training to be a ski instructor he’d had meningitis. He was later paralysed and became totally dependent. I promised we could get him back on a ski slope but had to fight very hard for him.”
With around 30 years in case management under her belt, Maggie has experienced the field’s growth from a fledgling profession to a vast sector.
As it continues to evolve, she believes exciting group trips will play an ever-more important role in the case manager’s job in future.
“For some reason, as case managers, we are all very nervous about getting clients together. We tend to keep them boxed off from each other.
“But case management has grown and become mainstream, which it wasn’t 25 years ago. We must move with the times and mustn’t get left behind.
“This includes increasing what we offer. Because of their own constraints, the client may not be able to plan these trips themselves. I think this is where case management needs to be looking in the future.”
Maggie advises anyone organising group or individual excursions with potential risk factors to use the valuable support of charities and organisations with special expertise.
With brain injured clients in particular, organisers should also consider how to pace itineraries accordingly.
“Travelling can be tiring. Sometimes you have to educate overseas organisers about brain injuries and the fact that, although clients may look able-bodied, you need to take things one at a time at the right pace.”
Ultimately, just about any challenge can be overcome in pursuit of a potentially life- changing trip, says Maggie. “Sometimes you just have to be big and brave and say ‘we’re doing it!’”
It’s an approach that’s certainly worked for Maggie and her clients.
Making the shift from victim to survivor
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.
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.
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.”
“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.
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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