From the devastation of Luke Parry’s brain injury has come Neumind, a solution which is set to support countless families across the world in living and coping with neurological illnesses and injuries.
Neumind has been created to improve access to specialist neurorehabilitation and support people with Acquired Brain Injury (ABI) in the practicalities of their everyday lives.
Through Alfred – a mobile app which takes its name from Batman’s assistant – a host of therapies and resources can be accessed to support the recovery and independence of brain injury survivors, while connecting and educating loved-ones in helping them achieve this.
And while now in its final development stages and heading for trial with survivors and their families in the UK, the creation of revolutionary Alfred has been enabled by its chief product tester – Luke.
It was in 2012 when Luke, then a student at Oxford University, was seriously injured after a fall from height. Sustaining a serious brain injury, the initial prognosis was that he was unlikely to ever walk or talk again.
“I call that time the ‘dark days’. I don’t remember much, but from the photos and my diary, I know it was a really tough period for me and my family,” he recalls.
Happily, Luke has defied all expectations – and is even in the development squad for the 2024 Paralympics, which gives an indication to the extent he has overcome his initial prognosis – but his recovery has not been without significant trauma for both him and his family in adapting to their new lives, compounded by a realisation of the lack of access to specialist resources.
“Soon after someone you love has experienced this kind of injury, as a family you realise everything has been turned upside down. It takes a while to understand the new dynamics and how you can contribute as a caregiver and family member,” says Dr Ellis Parry, Luke’s identical twin brother and CEO of Neumind.
“While you’re adapting to that, you realise what support is and isn’t available for both your loved-one and for your family. Statistics indicate that 70 per cent of people with ABI don’t get adequate inpatient rehab, and actually, inpatient is the best rehab that we provide.
“So following that initial rehab, you’re in the community pathway, which now because of COVID, can have a waiting list of up to a year. The average we’re seeing is eight months, which is just crazy. And that’s really when someone needs input, but it tends to be one session a month, and there’s no way anything is going to land in that one hour session. People are desperate, confused, and feel let down by our healthcare system.
“And with the caregivers, who are so critical to achieving the long-term outcomes, they don’t really receive a lot of guidance, training or support.
“So we wanted to explore how we could combine cognitive assistive technology with long-term, low touch support from specialists.”
It was while Luke was an inpatient in the internationally-renowned Oliver Zangwill Centre that Dr Parry began to fully realise the benefits top-class specialist neurorehabilitation could have.
“We had to campaign hard to get Luke in there, because there are only a few NHS spots, but it really opened my eyes to what was possible in rehabilitation and what was missing from the standard pathway. If he didn’t have that, I think we would all be in a very different place to where we are now,” says Dr Parry.
“While he was there, Luke was using a device called Neuropage, which was basically a paging device from the 1990s. It would send practical reminders, while reinforcing certain things that Luke was doing at the centre.
“We realised that was super important for someone with a brain injury, to have constant practice and taking the therapies and concepts into their daily lives.”
From there came the desire to create ‘Neuropage 2.0’ which could build on the principle of the outdated technology and harness the power of modern day technology to create a tool to help survivors get the support they need to adapt to their new lives.
Dr Parry, an Oxford engineering graduate who achieved his PhD in 2020, assembled an equally expert team to help create the memorably-named Alfred.
“Alfred was a code name between Luke and I at first, but it stuck,” he says.
“I think anyone who has survived a TBI goes on a bit of a superhero journey in many ways. You go through that dark period and then find yourself rising from the ashes.”
The multi-faceted app offers a range of resources primarily to the survivor, but also delivers benefits to families and caregivers, alongside healthcare professionals.
Taking the concept of Neuropage to the next level, Alfred uses ‘smart prompts’ – personalised multimedia messages that can be either practical or therapeutic. This versatility means Alfred can be used to support a wide range of cognitive impairments, practically supporting daily-living, as well as stimulating neural pathways associated with memory.
Tackling the issue of access to specialist rehabilitation directly, Neumind are creating a growing library of verified exercises and strategies, which resemble real-life activities and enable re-adjustment to daily life.
Through advanced analytics, Alfred can determine what individuals respond best to, helping to guide the best possible outcomes.
The app enables a person to connect with others, such as caregivers or therapists, who can provide collective support and help them in their progress.
While still a work in progress, Neumind is looking at ways to introduce access to specialists as part of Alfred’s offering, something which is often prevented by cost.
“It can be up to £120 an hour to see a senior psychologist or a senior occupational therapist, and outside of the medico-legal world, most people just can’t pay that much money,” says Dr Parry.
“And in order to get any benefit, you need to do a lot of sessions. And those sessions, if you’re not properly supported cognitively, can go in one ear and out the other.
“So we’ve been exploring different models of how we can provide a more cost effective, longer-term kind of support, and that is something we’re currently developing and are really excited about developing and is still ongoing.”
And the fact its development continues is something the Neumind team are keen to work on collaboratively with those who need it.
With a growing core of regular users – with Luke as “chief tester and biggest critic” – feedback from those with lived experience is crucial to Alfred being the solution Dr Parry hopes it will ultimately become.
“We want to understand the kind of problems people face at the deepest level,” he says.
“Brain injury unfortunately doesn’t get the recognition and doesn’t get the investment. In order to innovate in this area, there are no clear funding streams. It’s really difficult.
“And the diversity of people’s problems also means that the solution isn’t simple. We’ve worked with some other startups who work in, for example, tinnitus, such single symptom, single intervention applications are much smaller, much simpler to develop.
“Brain injury needs and deserves its own set of tools – but if you take a look at the NHS recommended apps, there’s 15 different categories of apps for someone with brain injury. And inside each category has maybe five or six different apps. There’s nothing for brain injury, they’re all generic apps which tackle fatigue, or memory, things in isolation.
“For most people with brain injury, they’ll probably have like several issues in these areas, which might mean they have to download 20 apps, and somehow figure out how to use them together.
“So for us, for Alfred to be exactly what people want and need, we need to continually learn from the experiences of others.
“We want to build something really special and to do this, we need passionate early users and supporters who share our mission.”
To have the opportunity of using Alfred and stay updated with its progress, visit here
- Neumind are part of the Virtually Successful conference, organised by Remote Rehab and supported by NR Times, which takes place from January 24 to 28 online. For more details and to sign up, visit here
New light shed on Brazilian Jiu-Jitsu and brain injury
Athletes may be at less risk of causing long-lasting injury than has previously been feared, new research has revealed
Brazilian Jiu-Jitsu (BJJ) athletes may be at less risk of causing long-lasting injury to the brain than has previously been feared, new research has revealed.
BJJ is a popular martial art that exposes participants to recurrent intermittent asphyxiation due to controlled application of neck chokes.
Unlike several combat sports, BJJ categorically prohibits strikes to the body, especially the head, favouring limb manipulation and neck chokes to coerce an opponent into submission.
However, concerns have been raised regarding the potential link between repetitive neck chokes, structural brain damage and implications for cognitive function.
But now, in the first study of its kind, researchers at the University of South Wales (USW) – who have previously led pioneering research to show the extent of rugby players’ cognitive decline in just one season – have shed new light on BJJ.
The team from the Neurovascular Research Laboratory at USW examined blood flow to the brain using Duplex ultrasonography and cognitive function via neuropsychological tests in elite BJJ athletes.
They found preliminary evidence that the BJJ athletes had a higher resting blood flow to the brain, alongside intact cognitive function, when compared to a control group of athletes matched by age, gender, and cardiorespiratory fitness.
Benjamin Stacey, lecturer in clinical science, said: “The popularity of BJJ is growing exponentially and is likely attributable to many people witnessing its effectiveness in Mixed Martial Arts (MMA) on promotions such as the Ultimate Fighting Championship (UFC) and Bellator.
“The inclusivity of BJJ allows for all individuals to train together, regardless of age, sex or physical ability and when compared to other combat sports, BJJ carries a lesser risk to injury.
“Our unique findings argue against the notion that BJJ predisposes an individual to greater risk of long-lasting brain damage and conversely, provides evidence for enhanced protection for the brain.
“These observations may be attributed to choke-induced pre-conditioning and/or exposure to BJJ-specific high-intensity interval training, which we know can confer protective benefits for the brain.
“These findings can help to inform much-needed follow-up research to extensively examine both the short and long-term implications of participation in the sport.”
Can VR help with sight problems after brain injury?
The development of new immersive game-based technology could help with visual neglect, researchers believe
Research is underway to discover the role virtual reality (VR) could play in the rehabilitation of sight after traumatic brain injury.
TBI can have significant impact on vision, causing impaired visual attention – also known as visual neglect – even when there is no injury to the eye.
Individuals with visual neglect lose the ability to explore the full extent of their surroundings and have difficulty reading, locating personal belongings, finding their way to destinations, and many other daily activities.
Visual neglect is caused by disconnected neural networks and has been studied extensively in stroke but remains largely unexplored in other types of brain injury.
Now, Kessler Foundation is embarking on a two-year study, A Virtual Reality (VR) Exercise for Restoring Functional Vision after Head Trauma, to look into how technology can assist.
The project uses immersive VR technology developed with the armed services and provided by Virtualware, an award-winning VR technology company based in Spain.
The to-be-developed treatment is an intensive, game-like rehabilitation program leveraging a combination of VR and eye-tracking technologies to implement an oculomotor exercise protocol based on smooth eye pursuit.
Dr Peii Chen, senior research scientist in the Center for Stroke Rehabilitation Research at Kessler Foundation, said: “Our study will fill this knowledge gap by exploring visual neglect in TBI and developing a new treatment modality.”
Smooth eye pursuit exercise is an evidence-based treatment that improves patients’ ability to move their eyes toward the neglected side of space and voluntarily pay attention to the entire workspace relevant to a given task.
This ability is fundamental to spatial explorations that are required in learning, reading, and way finding.
Conventionally, smooth eye pursuit exercise for treating visual neglect requires intensive and close supervision from therapists. VR technology combined with eye tracking can reduce therapist burden.
Research participants will experience a VR session of smooth eye pursuit exercise and share their feedback.
The study will reveal the feasibility and benefits of applying new technologies to rehabilitative treatment activities.
Research participants will also undergo functional and structural neuroimaging studies of the brain.
The study outcomes will broaden the understanding of spatial processing and visual cognition as functions of brain connectivity and advance the development of treatments targeting head trauma-related visual dysfunction.
“Knowledge gained from this clinical study will advance patient care by identifying the neural basis of visual neglect due to TBI at rest and during smooth pursuit eye exercise,” said Dr Chen.
“Reaching our goals will lead to improved visual health and quality of life for civilians, as well as active-duty military and veterans with trauma-related visual dysfunction.”
Dr Chen has been awarded a $376,109 grant from the US Department of Defense, US Army Medical Research & Development Command, Congressionally Directed Medical Research Programs (CDMRP), Vision Research Program.
Consequences of repetitive head impacts in sport laid bare
Players experience an array of consequences through the cumulative effect of impacts over a decade, new study finds
Sports players with at least ten years’ experience of contact sport are experiencing an array of health consequences as a result of repetitive head impacts, a new study has found.
While they may appear healthy, research has established that athletes have problems with inflammation, energy production and coordination.
These are as a direct result of the head impacts they experience, Northwestern Medicine and Pennsylvania State University report.
The head impacts individually may not have been severe enough to cause a clinical concussion, but show the cumulative effect of repeated blows to the head over several seasons.
The issues were found in measures that show abnormal regulation of inflammation, less coordinated movement and abnormalities in how cells produce energy, and add further to existing research showing the long-term impact of head injury in sport.
These three measures are significantly related to each other before the football season and to changes observed across the football season. They were also related to the number of head impacts a player received over the season.
“These findings support over a decade of reports about the negative effects of repetitive head impacts, along with studies of animal brain injury,” said co-senior author Dr Hans Breiter, professor of psychiatry and behavioral sciences at Northwestern University Feinberg School of Medicine.
“At this point, it appears the canary is dead in the coal mine.”
“This problem affects much of youth and professional impact sports in the US, along with training of US military personnel,” said co-senior author Dr Semyon Slobounov, professor of neurosurgery at Penn State College of Medicine.
This study – which assessed college American Football players – used measures previously found to be increased in football players before the season began and at a level similar to what is observed in individuals needing hospital treatment for a concussion.
These measures have been associated with inflammation regulation and were increased over the course of the football season. In this study, these regulatory measures of inflammation were linked with measures of energy production and coordination.
The football players’ coordination – measured as accuracy maintaining balance, speed at correcting balance and ability to remember movements – related to measures indicative of energy production issues and inflammation regulation.
Before and during the season, the higher the regulatory measures of inflammation were, the lower the coordination measures.
The study of repetitive head impacts in sport also showed abnormalities in energy production, resulting in decreased energy. These abnormalities linked abnormal inflammation regulation with reduced coordination. They also showed relationships with measured head impacts.
“A lack of energy can have significant consequences, especially in regard to brain function, raising questions of the long-term consequences,” said co-lead author Sumra Bari, a postdoctoral fellow at the department of psychiatry and behavioral sciences at Northwestern.
To perform this study, 23 athletes from a collegiate football team were enrolled who had been playing football for an average of 11 years. The athletes participated in a full season of competitive collegiate play.
Nine of them had experienced one to two concussions in prior seasons. Blood was collected and coordination was tested both before and after the football season.
The coordination tests were designed to assess balance and to test their ability to remember a virtual pathway – collectively referred to as “coordination.”
In addition, head impacts were recorded at all practices across the season using sensors which were attached to the players’ helmets.
Future research should expand to a larger cohort of athletes to confirm the findings, scientists said.
“Ultimately, the goal is to develop preventative interventions that minimise abnormal changes in the brain that have been observed in studies of contact sport athletes time and time again,” said lead author Nicole Vike, a postdoctoral fellow at the department of psychiatry and behavioral sciences at Northwestern.
“Collectively, we need to use interdisciplinary approaches, like those used here, to better quantify the unseen damage of contact sports.”
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