Sarah Coughlin experienced the horror of her head facing backwards after sustaining a brain injury. Here she shares her recovery journey with NR Times.
“I was wondering why my windscreen had black lines across it – until I realised I was looking out of my back window.”
Sarah Coughlin recalls the horrific moment she realised her head had turned 180 degrees to face backwards, due to brain trauma she had suffered after sustaining a head injury.
In the immediate aftermath of the injury, Sarah recalls little seemed wrong aside from a persistent headache.
But five days later, when she woke up late and rushed out to her car, the extent of what had happened became all too clear.
“I could feel this searing pain through my shoulders and my back,” says Sarah, as she realised her head had turned around to look out of her rear windscreen.
“It was quite difficult to turn my head back around and keep there but after a while I managed it, though the pain did not go away.
“I thought I had just slept funny and once I had properly woken up the sore neck would probably calm down. But when I got to work I still felt awful.”
This began the long process of diagnosis, which took years to achieve.
“I went to A&E every week for three months because the pain wouldn’t go away and I was still getting neck spasms,” she remembers.
“I was told it could have been a slipped disc, a muscle injury or having slept awkwardly. It changed each time.
“I was in agony constantly, but I still wasn’t diagnosed for at least another two years.”
At first only Sarah’s neck and walking were affected, but over the course of a year she developed spasms, optical neuralgia, pressure on the occipital nerve which runs through the neck up into the scalp, causing tremors, fits, paralysis and fatigue.
Eventually, she was diagnosed with dystonia – a condition which causes involuntary muscle spasms and was the cause of her head rotating.
Doctors also told her she had a Functional Neurological Disorder (FND), a variety of medically unexplained neurological symptoms which appear to be caused by problems in the nervous system.
After her injury in 2014 and its consequences, Sarah could no longer drive, do her job as a teaching assistant – a role she loved – or take part in the same social activities as before.
She also lost touch with many of her friends and hardly left the house as she was scared of people staring at her and judging her for the way she walked and moved.
The 37-year-old, from Fazakerley, Liverpool, says: “I used to be quite fiercely independent – so to go from doing so much to not being able to do anything was the hardest transition.
“I felt a real sense of loss for the life I had when I was first diagnosed.”
In 2017, Sarah discovered The Brain Charity, a national charity based in Liverpool which provides practical help, counselling and social activities for people with all forms of neurological condition.
She made new friends by joining the charity’s craft club and received help getting carers allowance for her partner John and with finding a new home as she could not use stairs safely anymore.
One night in Autumn 2019, John woke up to find she had turned blue and stopped breathing as a spasm had caused Sarah’s neck to contort, closing her throat and airways.
The only solution was a specialist bed which cost £10,000, which was achieved through fundraising and grant funding. She managed to raise the money last year, and now has a bed which uses deep massage cyclo-therapy to improve circulation and reduce her symptoms.
Sarah is now a passionate supporter of The Brain Injury Charity for the assistance it has given, and is keen to encourage people to donate. The charity’s resources are currently under unprecedented pressure as a result of the COVID-19 pandemic, with a 70 per cent increase in referrals met with a huge decrease in fundraising.
“There’s lots of things I can’t do anymore but The Brain Charity has freed me from staring at four walls,” says Sarah.
“They helped me achieve goals that without them I wouldn’t have been able to do.
“It seems obvious, but the more money people donate, the more people the charity can give the vital support I found so important.
“I want other people to have that place that is safe and secure, in an environment with people who have had similar experiences.
“The Brain Charity has given me such incredible support and I’m so grateful for it.”
More Delicious Innovations from Wiltshire Farm Foods
The latest Softer Foods creation from Wiltshire Farm Foods features an innovation which is entirely unique to the market: the shaping of a Level 5 Minced meal.
The company’s development team decided to incorporate this particular feature to enhance the visual element of its new Minced Cod in Parsley Sauce to further support those with swallowing difficulties in ensuring they receive the nutrition they need.
Committed to creating meals as delicious as they are visually appealing, Wiltshire Farm Foods understands how the aesthetic appeal of a plate of food can impact the appetite. Giving its customers the ability to eat independently with meals that look enticing ensures dignity in dining; something the company is passionate about.
Emily Stuart is the registered dietitian for the company and comments on importance of texture when it comes to those with swallowing difficulties:
“The texture of the main meal component has been designed in line with the requirements for an IDDSI Level 5 meal, in an extremely thick sauce. A Level 5 meal should require little to no chewing, ensuring a safe consistency for those on a Minced and Moist diet.
“All our Minced meals come ready-prepared, delivered directly to customers’ doors, to eliminate the risk that often accompanies home-blending. There are numerous challenges in creating safe, compliant meals via home blending with the process being both time consuming for carers and potentially hazardous for patients.”
Stroke survivor, Kate Allatt, knows first-hand how debilitating living with dysphagia can be, having experienced social isolation and embarrassment around mealtimes when friend and family were eating solid food that she was unable to consume herself:
To view the full Softer Foods range from Wiltshire Farm Foods along with more information on the latest Minced meals visit: specialistnutrition.com
Forget brain regions, it’s all about networks in neuroscience
Having worked for some of the biggest media outlets in the science industry, Dr Ginny Smith has been making brain science accessible for several years. With the release of her first solo book, she sits down with NR Times to discuss the ever-changing world of neuroscience.
The neurotransmitters in our brains and the chemicals that go with them continue to puzzle scientists and academics.
Making sense of it all is Dr Ginny Smith with the release of her new book.
Overloaded: How Every Aspect of Your Life is Influenced by Your Brain Chemicals explores how chemicals control what we do, from basic survival instincts to more complex processes, like forming relationships.
Recognised by New Scientist as one of the top science books in 2021, Overloaded was two years in the making.
One of its central themes is the brain working within networks which are all connected, rather than the traditional notion of individual regions performing specific tasks.
Speaking to NR Times, Dr Smith – who has produced science programmes for the BBC, Cosmic Shambles and the Naked Scientist – explained how changes in technology have brought about different interpretations of how the brain works.
“This idea of regions of the brain that do X or Y is starting to feel a bit outdated,” she said. “Talking to neuroscientists now, it’s all about networks and combinations of regions that talk to each other.”
And this shift in our understanding of the brain could shape new treatments in future.
“The drugs we have at the moment are the best thing that we have, but boosting things everywhere is a bit of a blunt instrument in something so precise as the brain.
“It’s not about if you need something to function, then having more of that is good. No, it’s all about finding that Goldilocks spot.
“One of the things I’m quite excited about for the future is the idea that we might be able to get more granular as to which areas of the brain are actually affected, perhaps on a person-by-person basis.
“It may be that at some point in the future, if you go to your doctor experiencing depression or anxiety, they could scan your brain to find out which area is actually affected and somehow target drugs specifically to that area.”
Overloaded brings together over 30 experts to give a clearer insight into how molecules like adrenaline, dopamine and serotonin work.
These chemicals may sound familiar but they often bring a lot of confusion around what they actually do – something Dr Smith was keen to address.
She explained how the misrepresentation of these substances in the media motivated her to set the record straight with the book.
“I started seeing a lot of mentions of these various brain chemicals. But they were often really oversimplified; like this idea that serotonin is the ‘happiness chemical’.
“It was stuff that takes a kernel of truth from real neuroscience, but simplifies it to the point where it no longer makes any sense at all.
“So I thought that it would be quite interesting to delve into a bit more complexity and find out what is actually going on and how much do we actually know about these chemicals?”
Although now hugely passionate about neuroscience, Dr Smith admitted that she fell into the subject after initially applying to study chemistry at the University of Cambridge.
“The way I’d encountered it before had been much more at the social psychology end of things, but the way it was taught here was like it was it was a real science where you did experiments.
“The complexity of the subject attracted me to it and I like a challenge. But also that the questions around it seemed so important to me. They seem like such vital questions to answer.”
Dr Smith switched her focus to neuropsychology and from here worked part-time in a lab. Due to her self-admitted short attention span, however, she found herself more drawn to the communication aspect of the field.
“I’ve been talking about the brain to anyone who will listen since then,” she said.
Her ability to make neurochemistry coherent was the catalyst for Braintastic! Science, the platform she founded to educate young people about how their brain works.
“Psychology and neuroscience aren’t sciences you necessarily meet at school. But one of the things I like is them explaining that there’s this whole other branch of science that they might not come across.
“It’s important to have a basic understanding of the brain. It can be so useful in so many ways.”
Indeed, a good understanding of the brain is something Dr Smith would liked to have had as a youngster.
“I wish that when I’d been a teenager, I had known a bit more about how a teenager’s brain works. I think it would have made life so much easier.
“Parents also understanding more about how young people’s brains develop would help them understand and relate to them.”
In fact, greater brain knowledge across the board in wider society would be beneficial, she believes.
“I think everyone can benefit from knowing a little bit more about how their brains and how other people’s brains work. I think it would make us a kinder, more tolerant society.”
While covering big neuroscience topics, the book is characterised by personal experiences and stories.
“One of the things I really like when I’m talking to scientists is hearing their passion and their stories for why they got into doing what they do.
“It also shows how science relates back to everyday life. That’s the thing about neuroscience and psychology, it’s all about us.
“I can’t tell you everything about the brain in one book, but I hope it sparks readers’ curiosity, and makes them want to go out and find out more about their brain.”
How the C-Brace is opening up a new world of possibilities
The C-Brace is big news in the progression of Orthotic treatment for neurological conditions. The integration of microprocessor technology into a carbon fibre Knee Ankle Foot Orthosis (KAFO’s) opens up a whole new world of possibilities and mobility for patients dependent on full leg support to stand and walk.
As standard, KAFO users are supplied with locked knee KAFOs. This is where the knee is locked in a straight position throughout their gait cycle, but manually unlocked to allow the user to sit down with their knee flexed. The use of a locked KAFO brings about stability of the knee for users with reduced lower leg muscles strength, when walking on level ground.
However, it also results in the development of multiple gait compensations for the user to progress through the gait cycle with a locked knee. Compensations include; hip hitching on the contralateral side, circumduction during swing phase, and vaulting of the contralateral ankle.
Gait can therefore be slower, require more metabolic energy and increase mechanical stress on the sound leg. Walking on slopes and stairs with a locked knee joint is very difficult and often situations avoided by KAFO users.
An alternative option to the locked KAFO is a Stance Control Orthosis (SCO). In a similar way to the locked KAFO, the knee joint is locked straight during stance phase, but unlocks at terminal stance to allow the knee to flex through swing phase, providing a more natural gait pattern and reduction in compensatory motions to achieve ground clearance.
SCOs require considerable confidence from the user, a consistent step length and are again limited on slopes, stairs and uneven ground. In order to prevent accidental disengagement of the knee lock on challenging surfaces, the user often manually locks the SCO.
Where the C-Brace comes into its own is the significant control available in both stance and swing phase of gait. The system provides stability for the foot and ankle, and stabilises the knee in the sagittal plane with the hydraulic unit replicating the eccentric and isometric muscle contraction of the quadriceps and hamstrings.
It controls both the stance and swing phases of gait with microprocessor sensor technology that can adapt to everyday situations in real time. The technology normalises gait by allowing controlled knee flexion during weight bearing, giving patients the ability to safely navigate quick stops, walk on uneven terrain, and descend slopes, curbs and stairs step over step.
The C-Brace calculates the orientation and movement of the system in space in three dimensions, using this information to control the flexion and extension valves of a hydraulic unit that provide varying levels of resistance to knee flexion. In turn, this allows for physiological knee flexion during loading response, absorbing the shock of weight transfer during heel strike.
In a locked KAFO or SCO, that shock is directly transferred to the pelvis and lumbar spine. Additionally, the C-Brace provides microprocessor swing control that adapts to the varying walking speeds of the patient. It does not require consistent step lengths to function as SCOs do.
Variable step length means a patient can increase or decrease walking speed and length of steps based on the instantaneous activity/mobility needs, making walking safer in unfamiliar or dangerous scenarios like crossing roads.
The C-Brace is also able to provide assistance descending stairs and slopes, allowing step-over-step gait, mimicking the contraction of the quadriceps for lowering the body down a stair or slope. The C-Brace considerably reduces stress to the sound limb in unilateral users, and allows bilateral users to descend stairs and slopes and ambulate on uneven terrain.
Additional features of the C-Brace include:
Stumble recovery: The microprocessor swing control of the C-Brace provides a stumble recovery feature that activates high knee flexion resistance during swing phase extension, in preparation for stance phase, allowing the patient to fully load their orthosis and stabilise the body in case of a stumble.
Intuitive Stance Function: This feature allows the patient to stand in a safe and relaxed manner with a flexed knee without the threat of knee collapse, and automatically switches back in to ambulation mode, turning off the blocked knee flexion when the patient moves. This feature allows the patient to unload the sound leg and rest while securely standing on level or non-level surfaces.
Sitting/Kneeling Function: The C-Brace assists the patient when sitting down and standing up from a chair by providing resistance to flexion or extension.
This adds an extra degree of safety and reduces stress to the upper extremities and the sound limb. The microprocessor automatically detects when the patient begins to sit down, adjusting the hydraulic resistance against bending during the transition to sitting.
Allowing the patient to sit in a controlled manner and at a controlled rate. When standing up from a seated position, the C-Brace blocks knee flexion as soon as the knee reaches a flexion angle of 45° or less, allowing the patient to reposition the foot and load the orthosis, for improved leverage to stand. The kneeling down function allows the patient to kneel down safely with controlled flexion of the knee joint, supported by increased flexion resistance.
Activity specific modes/Freeze mode: The C-Brace is programmable for activity specific needs of the patient in addition to ambulation. For instance, resistance can be reduced to a minimum for cycling, or a flexed knee joint position can be fixed for activities such as Yoga. The user, on their personal C-brace App, can control these modes.
So how can you know if the C-Brace might be right for your patient? The first stage is a thorough assessment, considering both the indications and contraindications of the system.
- Flaccid Paralysis or partial paresis of the lower limb
- Quadriceps deficiency leading to poor knee control during stance phase
The patient may present with regular ‘giving way’ of the knee, reporting stumbles or falls when walking on flat, graduated or uneven surfaces. The C-Brace may be appropriate for a number of neurological conditions, including but not limited to:
- Spinal cord injury between L1 and L5
- Multiple sclerosis
- Neuromuscular disease
- Muscular atrophy or Traumatic paresis
Essential requirements for the use of the C-Brace:
- The user must be able to stabilise their trunk and stand without support.
- The muscles strength of the hip extensors and flexors must allow the controlled swing of the affected leg, or this must be possible through compensatory hip/trunk movement.
Contraindications of the C-Brace:
- Swing phase initiation is not possible
- Insufficient trunk stability
- Severe spasticity
- Knee or hip flexion contracture of more than 10°
- Non correctable genu varus/valgus greater than 10°
- Body weight less than 40Kg or greater than 125Kg
- Height <140cm
- Leg length discrepancy >15cm
- Fluctuating Oedema or severe skin irritation that precludes the use of an orthosis
The C-Brace Dynamic Test Orthosis (DTO) is a trial orthosis, which features the C-Brace joint unit. The DTO can be set up to each individual user and programmed to their individual gait requirements, allowing users to test the function of the orthosis within the clinical setting.
The DTO can also provide valuable evidence to the function and benefits of the C-Brace for payers. The DTO can be trialled with support from the Ottobock Orthotic Academy Clinician or through Ottobock’s clinical partner Dorset Orthopaedic.
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