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‘By the time we emerged from lockdown, I had learned to walk again’

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Barry Whaite was diagnosed with Guillain–Barré Syndrome (GBS)

In April last year, due to a rare neurological disorder, Barry Whaite could only move his head independently. But by the time the country emerged from the first lockdown in August, he had regained the ability to walk. Here, he shares his story.

“I had initially been suffering from a chest infection and was taking antibiotics and steroids, as prescribed by my GP. I was not improving and eventually I fell a couple of times, then on 17 February last year, I was unable to stand up.

An ambulance came and took me to the Royal Preston Hospital, where after an MRI, a CT scan and a lumbar puncture, I was diagnosed with Guillain–Barré Syndrome (GBS).

I was given an immune therapy drug to stop the illness progressing to my lungs. I was now totally helpless, needing a hoist to move me.

I was transferred to the MRU. where I underwent rehabilitation. Unfortunately, due to Coronavirus, I was put into self-isolation and was transferred to a nursing home in Preston. The staff there were not able to deal with my illness, so my wife and daughter made arrangements for me to be brought home.

The consultant from the hospital, Dr Shakespeare, came to visit me to explain that the new Sue Ryder Neurological Care Centre Lancashire was due to open, and that it would be in my best interests to take up residence there.

I agreed, although reluctantly, to go for three weeks, as I was not progressing at home. I was unable to move, and was advised that the Community Rehabilitation Team would not be able to come to the house.

When I was admitted on 29 April, the only part of my body that I could move independently was my head.

I was depressed initially and this was compounded by the fact that I could not have any visitors. My daughter came every week and left cordial and goodies for me, to keep my spirits up.

I made great progress at the centre. I was hoisted for the first few weeks, and with their care and patience of the Sue Ryder team, I was taught to roll over on the bed, put my legs over the side and sit up without falling over.

The senior physiotherapist supported me into a standing position for a few seconds, then caught me on the way down. This made me believe that I would eventually stand again and spurred me on.

They introduced me to the banana board, which I hated with a passion! Eventually I managed, with assistance, to move from the bed to the wheelchair and to the toilet.

The next episode was to the gym with my ever-trusty banana board. There the physios worked on my legs and feet, then I needed to rest in order that my muscles could recover.

In the gym, I was also shown how to stand using the plinth, which the team raised slowly, forcing me to stand up.

That day gave me hope. I learned ‘sit to stand’ and then I was introduced to a walking frame.

On my second goal-setting meeting, I celebrated my birthday and as a treat, the staff had decorated my room, made me a birthday cake and organised a new self-propelled wheelchair.

At last, I had some freedom.

My family visited on the day, and I was allowed to speak to them in person through the door, albeit two metres apart. This was the first time I had seen them, other than on FaceTime.

I slowly progressed with the help and encouragement of the rehabilitation team. They went on to show me how to deal with my personal care so I could become more independent.

I then became involved in more activities with the staff and other residents, including bingo, quizzes, Jenga and jigsaw puzzles.

Later, I had a home visit to see what equipment I would need to support me when I was discharged, such as a shower seat, internal hand rails, perching chairs and an enhanced toilet seat. All these items were provided, together with a four wheeled walker. The only difficulty I had was gaining access to, and leaving, my home through the main door due to the steps.

On my return to the Sue Ryder Neurological Care Centre Lancashire, I was offered a further three weeks’ stay, in order that I could master a few steps, as my walking ability (with the aid of the walker) had improved dramatically.

I was discharged on August 5 to a Guard of Honour, and a round of applause and the staff singing ‘Take Me Home Country Roads’!

The occupational therapist and physiotherapist brought me home and helped me settle in.

I have nothing but praise for Sue Ryder Neurological Care Centre Lancashire. Without them, and had I remained at home, I am sure that I would still be bed ridden now.”

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Neuro Convention returns next week

The event brings together neuro-rehab professionals and leading organisations from across the UK

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Neuro-rehab professionals and organisations will be attending one of the key dates in the sector calendar next week – Neuro Convention 2022. 

The event showcases the latest technology and innovations in the neurological sector, with the goal of improving patient outcomes. 

Neuro Convention, held on Wednesday and Thursday at the NEC Birmingham, will focus on four key areas – rehabilitation, mental health, diagnostics and brain and spinal injury. 

The free event includes a programme of more than 50 free CPD-accredited seminars, hosted by leading experts from across neuro-rehab, as well as interactive workshops hosted by the specialist neuro-rehab team at the University of Plymouth. 

Technology will also be showcased, with a programme of live demonstrations, to show how the latest innovation can benefit people’s lives. 

More than 50 exhibitors will also be in attendance, including the team from NR Times, who can be found on stand N-G3. 

Neuro Convention will be co-located with Naidex and UK Care Week within the NEC, highlighting the shared dedication of all three events to improve mobility and the technology introduced to support independent living.

Deborah Johnson, editor of NR Times, who will be attending Neuro Convention, said: “Neuro Convention is known as being one of the must-attend events in the neuro-rehab calendar, and 2022 looks to be another excellent event, with a packed programme of speakers and workshops and an array of leading exhibitors. 

“It’s absolutely fantastic that the opportunities for the neuro-rehab sector to come together again in person are returning, and I’m personally looking forward to meeting as many people as possible – those who are new to NR Times, others who are old friends, and those who to date we have only met via Zoom!” 

Tickets are free and to register, visit here. 

SHOW INFO 

Dates & Times 

Wednesday 6th July 2022 | 09:30 – 16:30

Thursday 7th July 2022 | 09:30 – 16:00 

Venue Address 

Hall 19

National Exhibition Centre (NEC)

Birmingham

B40 1NT, UK

Social links #NeuroCon

https://www.facebook.com/neuroconvention

https://twitter.com/NeuroConvention

https://www.linkedin.com/company/european-neuro-convention/

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Role of sleep in memory and learning uncovered

Research findings could aid development of assistive tools for people with neurological injury or disease

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New research into sleep may help explain how memories are formed and how learning is consolidated, and could aid the development of assistive tools for people affected by neurological injury or disease. 

Scientists previously studying laboratory animals discovered a phenomenon known as ‘replay’ that occurs during sleep – a strategy the brain uses to remember new information. 

Scientists believe that this replay of neuronal firing during sleep is how the brain practices newly-learned information, which allows a memory to be consolidated, and converted from a short-term memory to a long-term one. 

However, replay has only been convincingly shown in lab animals.

Now, a new study has investigated whether replay occurs in the human motor cortex — the brain region that governs movement — focusing on a 36-year-old man with tetraplegia who cannot move his upper and lower limbs due to a spinal cord injury. 

The man, identified in the study as T11, is a participant in a clinical trial of a brain-computer interface device that allows him to use a computer cursor and keyboard on a screen.

The investigational device being developed by the BrainGate consortium, a collaborative effort involving clinicians, neuroscientists and engineers at several institutions with the goal of creating technologies to restore communication, mobility, and independence for people with neurologic disease, injury, or limb loss.

In the study, T11 was asked to perform a memory task similar to the electronic game Simon, in which a player observes a pattern of flashing coloured lights, then has to recall and reproduce that sequence. 

He controlled the cursor on the computer screen simply by thinking about the movement of his own hand. Sensors implanted in T11’s motor cortex measured patterns of neuronal firing, which reflected his intended hand movement, allowing him to move the cursor around on the screen and click it at his desired locations. 

These brain signals were recorded and wirelessly transmitted to a computer.

That night, while T11 slept at home, activity in his motor cortex was recorded and wirelessly transmitted to a computer.

“What we found was pretty incredible,” said Dr Daniel Rubin, lead author and a neurologist at the MGH Center for Neurotechnology and Neurorecovery. 

“He was basically playing the game overnight in his sleep.

“This is the most direct evidence of replay from motor cortex that’s ever been seen during sleep in humans.”

Most of the replay detected in the study occurred during slow-wave sleep, a phase of deep slumber. 

Interestingly, replay was much less likely to be detected while T11 was in REM sleep, the phase most commonly associated with dreaming. 

The researchers see this work as a foundation for learning more about replay and its role in learning and memory in humans.

“Our hope is that we can leverage this information to help build better brain-computer interfaces and come up with paradigms that help people learn more quickly and efficiently in order to regain control after an injury,” said neurologist Dr Sydney S. Cash, co-director of the Center for Neurotechnology and Neurorecovery at MGH.

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Pioneering project could revolutionise capacity assessment

Sector-leading research is set to generate a framework of wellbeing indicators for patients

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Specialist neurological care provider PJ Care has partnered with the University of Leicester for a sector-leading research project that could revolutionise the assessment and care of residents who lack capacity.

The two have come together in a knowledge transfer partnership (KTP) to support the creation of a centralised system at PJ Care to create algorithms that will generate a framework of wellbeing indicators for those who are non-verbal as a result of their neurological condition.

So far, a review has been completed of existing research into this area, which will be published jointly by PJ Care and the University of Leicester later this year.

Leading the project is Dr Allan Perry, consultant clinical neuropsychologist and director of clinical services at fast-growing PJ Care.

“The current models for assessing the health and wellbeing of those without capacity and who cannot readily communicate their feelings and experiences are limited and don’t take advantage of the recent advances in technology and data analysis that can give us much more detailed information,” he explains.

“There is a wealth of monitoring technology that we use which allows us to collect real-time data on a number of wellbeing indicators such as a person’s oxygen levels, heart rate, fluid intake and the number of steps they take to reach a certain distance.

“We believe this data can be analysed by an algorithm to provide insights into personal wellbeing, sense of agency, independence and self-determination, that are more accurate than those offered by traditional methods. We can then apply this information to tailor our care to that individual.

“While there is plenty of information on bringing more technology into the care sector and using the data being created by it, this isn’t being married with the questions posed by a person’s capacity as yet. We don’t believe any other care provider is delivering anything like what we are proposing to.”

PJ Care is a specialist neurological care provider with three specialist care centres – the first of which has just celebrated its 21st anniversary – for more than 200 adults with progressive conditions such as young onset dementia and Huntington’s disease, and care and rehabilitation for people with acquired brain injuries.

Dr Zehra Turel holds a PhD in cognitive neuroscience from the University of Leicester and serves as KTP research associate for the project, working with Professor John Maltby and Professor Elizabeta Mukaetova-Ladinska of Leicester’s Department of Neuroscience, Psychology and Behaviour.  

She says there is an urgent need for an accurate assessment tool for those who have difficulty communicating.

“We have so far uncovered that the available wellbeing measurements neglect or fail in understanding of the clinical populations such as cognitively impaired individuals, with or without capacity,” says Dr Turel.  

“This project will provide micro and macro insights about residents’ health and wellbeing, and support decision-making at both resident and business level.

“With the increasing use of new data-driven technologies and streamlined data collection at PJ Care, this project will improve personalised care and provide more accurate and faster predictive and preventive measures, and more informed decision-making along with lowering costs and simplifying internal operations.”

“This KTP has the potential to develop resources that could not just be transformative for PJ Care and how our staff support people without capacity, but, eventually, for the whole care sector,” says Dr Perry.  

“We will be looking to market this if it proves to be as effective as we believe it will be.”

 

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