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Brain injury

‘Do we listen to the Government or NHS on vaccinations?’

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People with a range of health conditions have been left confused over where they stand with the vaccine rollout

A recent poll by Calvert Reconnections indicated that the majority (61%) of case managers are unclear about where brain injury sits in relation to the COVID-19 vaccination programme and the high risk (clinically extremely vulnerable) and moderate risk (clinically vulnerable) categories.

Lorna Mulholland, registered manager at Calvert Reconnections, says there are clear contradictions between the Government, who fund the vaccination programme, and the NHS who are delivering it.

“With more than 1 in 3 adults in the UK now vaccinated against COVID-19 one question remains unanswered. Where does acquired brain injury (ABI) sit in relation to the vaccination programme?

According to NHS Guidance, those who have a condition that affects the brain or nerves come under the heading of moderate risk (clinically vulnerable). Also included in this group are those with heart disease, individuals taking steroids, people with diabetes, lung, heart, kidney and liver disease. Similarly, people with a high risk of getting infections, obesity and pregnancy are incorporated.

This moderate risk group is advised that they will not receive a letter for their vaccination and need to continue to follow social distancing guidelines.

As the NHS is implementing the vaccination, should this guidance be listened to, or should Government advice take priority?

Contrary to NHS guidance, the Government states that chronic neurological conditions are considered as high risk and are a priority for the vaccination programme. This publication states that severe neurological disability, conditions similar to motor neurone disease (MND) and epilepsy are just a few of many neurological conditions that are clinically extremely vulnerable and therefore require a vaccination as soon as possible.

Individuals with an ABI are often diagnosed with secondary conditions. When a person is diagnosed with an ABI, the initial diagnosis takes precedence and there is the potential that secondary symptoms are lost in clinical notes, thus removing ailments from diagnosis statistics.

This could make it almost impossible for clinical notes to collect the information and address the need to vaccinate patients with an ABI as a priority during the vaccination rollout programme. Following the guidance from NHS England, could we be leaving a highly vulnerable section of the population to fight an illness when they are not strong enough to do so?

According to 2018 data, there were 1.4 million people living with a brain injury in England. Symptoms or subsequent complications that can be caused by the injury include cognitive deterioration, behavioural changes which can include disinhibition, psychiatric symptoms and an alteration to their level of consciousness. These are all conditions which create a susceptibility for clients with an ABI to be vulnerable to catching and transmitting COVID-19.

Professionals who work with clients that are within this category understand the increasing concerns of individuals and families.

During a time when social isolation is the prescribed route, the behavioural, emotional, and psychological effects caused by the ABI are extremely more pronounced.

One nurse has explained that some people with ABI cannot comprehend social distancing and are therefore at a higher risk of contracting COVID-19 and transmitting it. If schizophrenia and bipolar disorders are clinically extremely vulnerable due to a lack of capacity regarding distancing, those with an ABI should be too.

If chronic respiratory disease is a diagnosis that requires a vaccination to avoid mortality then persons affected by the ‘symptom’ of an inability to breathe or swallow effectively, should also be provided for. Should these clients accept NHS Guidelines?

A Professor of Neurosurgery, Peter Hutchinson, stated to one organisation that: “I encourage all brain injury survivors and carers to get vaccinated at the earliest opportunity”.

There are clearly a multitude of contradictions between the Government, who fund the vaccination programme, and the NHS who are delivering it.

With the two main bodies unable to reach agreement and follow identical guidelines, the recommended course of action for anyone with an ABI is to seek the support of their GP in order to become prioritised for vaccination.

* Lorna Mulholland is registered manager at Calvert Reconnections.

Calvert Reconnections, located on the outskirts of Keswick in the Lake District, has developed the UK’s first residential brain injury rehabilitation programme combining traditional clinical therapies with physical activity in the outdoors.

The centre is currently taking referrals in advance of its opening later this year.

www.calvertreconnections.org.uk

Brain injury

‘I’m sorry for handling the steering wheel with buttered fingers’

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As he continues to come to terms with the loss of his ‘ex life’ and learns to celebrate the 21st birthday of his new self, The Brain Damaged Baron reflects on the comfort blanket of support from those close to him, while struggling with the loss of vanishing friends

 

Let’s get straight down to business.  The salient truth is that one day, the life I once knew came to an end. Yep, gone, cheerio, toodle pip.

It is an ex-life. It has ceased to be, I trotted off this mortal coil in order to push up some buttercups. Is it buttercups? I forget. 

It was so very difficult, sometimes impossible, to comprehend that all I knew had gone. That sentiment only increased over the years and there have been 21 of them. Twenty-one long years.  My new life has matured and is now old enough…

To vote – when it remembers to.

To drive – it can’t, partial blindness caused by the brain injury would make driving an absolute lottery.  That and the complete lack of spatial awareness. After all, I can’t walk down the street without colliding with lampposts. I wouldn’t be safe in a bubble wrapped bumper car. I’m not sure the roads of the UK are ready for me just yet.

To drink alcohol – it can’t, epilepsy denied that pleasure. Due to medication, I feel half-drunk most of the time anyway. Without alcohol, I have the memory of a goldfish with Alzheimer’s disease. I hardly need the odd libation to wipe what recall I do have. 

To have sex – if I can stay awake long enough. I’ll say no more. It was all I could do to prevent myself typing ‘stay up’ long enough. Ooh-er, Mrs!

And it’s now old enough to know what the hell happened to me.  And is still happening right up to this very day.

That’s the nature of a bang on the bonce; confusion.  

Massive disorder in my mind, incomprehension shadows me like the gloomiest raincloud preparing to unleash a deluge of perplexity. I know it’s there, it’s always there. The monkey on my back, the albatross overhead, the angry weasel with a chip on its shoulder.   learnt to live with it. 

That and the ability to invent nonsensical idioms. It’s a gift.

However.

Back in the day, long before I became 21 again, it began.  The curtains were closed, slammed shut. Well, to be fair, they were curtains, not so much ‘slammed’, but more ‘flopped’.  They needed opening, I had to let the day begin.  And commence it did, as the flaccid curtains were swept aside and the hard graft started.

While I was hurting, while I was struggling, while I was learning, there were other people around. There still are, every day. It’s just a question of tenses really.  

Watching, witnessing, feeling my pain. Either on the side-lines or directly involved, family, friends, all observing the effects. Mostly it was no spectator sport, it was grim viewing, if I am honest. And still they remained, standing by with a collective arm outstretched.  

Twenty-one years later and it’s still there. A comfort blanket, a safety net cushioning the unavoidable falls.

It’s a whole new world out there, and that world has a habit of biting back. Sometimes it is just a nip, although occasionally, it’s like a bite from a hungry shark. And those nibbles come thick and fast. Each bite eroded away my former self and ate away, no pun intended, at the life that had sadly departed.  All the while…

Watching, witnessing, feeling my pain…

There are so many bites that they all seem to merge into one. Remembering can be exhausting beyond belief. I had never thought it possible to get so drained, so shattered simply from attempting to recall what the day is.  

Another aspect of my life that my previous self had taken for granted. There was never any reason not to. I was a 25-year-old man and it didn’t seem a lot to ask to remember where I kept my keys. It was never a conundrum.  

However, after the injury, I could then forget where I kept my pants and socks, let alone my keys. Not when I was wearing them, obviously; my pants and socks that is, not my keys.  

And with the exertion of something as basic to a human being as ‘thought’ came the inevitable headaches. The first to strike shook me to my very core. It smarted, just a tad.  They continue to this day, bless ‘em. 

Almost a year after the old brain took its battering and continued to fight the good fight, epilepsy was thrust into my life. The unwanted gate crasher causing havoc with every appearance. A lightning bolt from the deepest blue. Body spasms, unconsciousness, confusion, memory lapses, post seizure headaches that make the usual head pains seem like old friends.  Well, it keeps me on my toes.  And still…

Watching, witnessing, still feeling my pain. The outstretched arm remained, absorbing the anger and feeling my frustration. 

Fatigue and apathy soon entered the fray. More undesirable visitors cluttering an already overloaded brain. They pushed aside my old friends ‘eagerness’ and ‘concentration’ as ‘alertness’ looked on with all the subtlety of a slightly annoyed bricklayer wielding a sledgehammer. Oh, he had anger issues too.

The passage of time was a cruel mistress. Particularly when my addled brain was struggling to establish some form of normality… whatever that may be.  

My life in its entirety had altered beyond recognition. Epilepsy could now strike without warning at any given moment, throwing the day into chaos. Fatigue that plagued almost every aspect of my life began to throw up barricades.  

It was hard to live with what I had become.  To live in the present and not rely on the past.

And still they watched, witnessed, felt my pain. And for some, it was too much, too difficult, too much like hard work. 

Relationships ended and friendships broke down. Ultimately, people vanished. They had their reasons, I was never told what they were, but I’m sure they had them. Occasionally I had the courtesy of an invented tissue of lies that possibly salved their own conscience, but only served to batter my own into submission.

Relationships with everyone in my life, friends, new acquaintances, and even the odd member of my family, seem to be based on the flip of a coin. 

Should a ‘Head’ land on terra firma and whatever my brain throws into the mix, they’ll hang around. Should a ‘Tail’ drop gracefully to the ground and they’ll turn that tail and run for the hills.  And that’s how it’s been since the day I landed on my cranium with one hell of a thud.  But wait a moment here…

I like to think I’m not a stupid man, I pride myself on it in fact. I’m 46-years-old now, time is marching on relentlessly like a runaway train with only one destination.  

I’m married to my best friend, a couple of children have their place in my life and I’m still learning more about my own limitations and abilities. Only one thing has remained constant throughout the journey that became my second shot at this rollercoaster we call ‘Life’. That damn scar on my brain still throws its weight around whenever it fancies a bit of a giggle. And thus…

I still forget things with frightening regularity.

I can’t control my emotions like I should.

Background noise irritates me to the point of exasperation.

I still invent idioms like a ferocious aardvark with a knuckleduster.

I may have a seizure with varying degrees of severity at any given moment.

Fatigue is a pest that simply won’t leave me be. And sleep is my panacea.

I can’t socialise like I once could.

I can’t drink, I can’t drive.

I am no longer the ‘me’ I once was. And do you know what? I no longer care. I wouldn’t change one God damned thing.

I throw out these statements with gay abandon, almost on a whim.  The fact remains that while I was coming to terms with the throwaway facts, those people close to me WERE watching, they WERE witnessing and they WERE feeling my pain.  

For instance, let’s start at the very beginning. I was in a coma in hospital. Essentially, I was asleep, just for a smidgeon longer than usual. I always was a lazy sod. While I slept, my family and friends sat at my hospital bedside wondering whether I would live or die. I had it easy, I really did. I still do.

The first epileptic seizure and every single one since sees my good self disappear into another world for however long, while whoever is there can only watch, wait, and worry.  Again, I repeat, I have it easy.

I have a wife I adore. The lady who came along and turned out to be the missing piece in my jigsaw. Who knew? The rock to my roll, the milk on my cornflakes. Much like my friends and family who were there long before that missing piece arrived, she tolerates the moods and the headaches.  She lives with the forgetfulness, the now thankfully muted anger, the annoyances, etc. They’re all part of just another day.

Twenty years of watching and worry. Good grief, I’m so sorry for putting you all through this journey, none of you asked to be passengers, you really didn’t. You still don’t, you never so much as complain. I certainly didn’t want to be the driver and I’m sorry for handling the steering wheel with buttered fingers…

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Brain injury

Sleep problems ‘can be worse with mild TBI’

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Sleep disorders are more prevalent among people with mild traumatic brain injuries (TBI) in comparison to those with more a severe diagnosis, new research has revealed. 

In the study, the links between TBI and sleep problems were strengthened further, with people with TBI shown to be up to 50 per cent more likely to develop insomnia, sleep apnea and other sleep disorders than people who have not been injured. 

And in a significant outcome, the association with sleep disorders was stronger amongst those with mild TBI than in the case of serious injury. 

The research also showed that the risk for sleep disorders increased for up to 14 years after a brain injury – showing the need for the impact of TBI to be assessed in the long-term, said the research team from the University of California. 

“Clinicians should ask TBI patients about their sleep and they should follow that up,” says study investigator Yue Leng, assistant professor in the university’s Department of Psychiatry and Behavioral Sciences.

Data was analysed from 98,709 Veterans Health Administration patients diagnosed with TBI, alongside an age-matched group of the same number of veterans who had not received such a diagnosis. The mean age of the participants was 49 years at baseline, and 11.7 per cent were women. Of the TBI cases, 49.6 per cent were mild.

Researchers assessed a number of sleep disorders, including insomnia, hypersomnia disorders, narcolepsy, sleep-related breathing disorders, and sleep-related movement disorders.

During a follow-up period that averaged five years but ranged as high as 14 years, 23.4 per cent of veterans with TBI and 15.8 per cent of those without TBI developed a sleep disorder.

After adjusting for age, sex, race, education and income, those who had suffered a TBI were 50 per cent more likely to develop any sleep disorder compared to those who had not had a TBI. 

The association with sleep disorders was also found to be stronger for mild TBI than for moderate to severe TBI which, say the research time, might be due to differences in the brain injury mechanism.

While the study was conducted with veterans, the research team expected to find an increase in probability of sleep problems in those with PTSD. 

“But actually we found the association was pretty similar in those with, and without, PTSD, so that was contrary to our hypothesis,” says Leng.

The researchers could not examine the trajectory of sleep problems, so it could not be concluded whether sleep problems worsen or get better over time, she adds.

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Brain injury

Women ‘more likely to have long-term issues after concussion’

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Women may be at increased risk of long-term physical and mental issues after a concussion, a new study has revealed. 

In analysis of 2,000 people who sustained a head injury, women were found to be more likely than men to still have some symptoms a year later. 

These included memory and concentration problems, alongside headaches, dizziness or fatigue. 

Women between the ages of 35 and 49 typically had worse symptoms than both younger and older women, the research found. 

The study revealed that in other traumatic injuries, men and women’s recovery times were similar – the main area of disparity was in brain injuries.

While this research cannot answer the question as to why this happens, says lead researcher Professor Harvey Levin, from Baylor College of Medicine in Houston – it is possible, he says, that chronic inflammation in the brain tissue or hormonal influences play a role.

The brain has receptors for oestrogen, and previous research has indicated that women who sustain concussion at certain times in the menstrual cycle tend to have a slower recovery.

It also builds on previous research which has also pointed to sex differences in concussion recovery. 

Writing an accompanying piece to the study, which was published in JAMA Network Open, Martina Anto-Ocrah, an assistant professor of emergency medicine and neurology at the University of Rochester Medical Center, says it strengthens the case that women’s slower recovery is related to concussion. 

“We expect most patients to recover within weeks,” Anto-Ocrah says, adding that about 90 per cent have largely recovered within three months.

But in the study, women did have higher rates of depression and anxiety diagnoses before the concussion, compared to men. And those are risk factors for prolonged concussion symptoms, Anto-Ocrah adds.

However, the researchers accounted for depression and anxiety, and those diagnoses did not seem to explain women’s more persistent symptoms.

Some women, Anto-Ocrah says, encounter scepticism when they tell their doctor they are still having concussion symptoms many months after the injury.

“This is additional proof that it’s not all in your head,” she adds.

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