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“She’s just highly strung or emotional” – how female brain injuries are going undetected

Mounting evidence shows that women are more likely to sustain concussions than men – but official medical bodies are not responding…

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Various studies suggest that women and girls sustain more concussions, at a higher rate than their male counterparts in the same sports.

A recent National Collegiate Athletic Association (NCAA) Injury Surveillance Program study, for example, shows the rate of concussion per 1000 athlete-exposures in football is 6.3 in females versus 3.4 in males. Similar differences were noted in basketball (6.0 in females versus 3.9 in males) and baseball/softball (3.3 versus 0.9).

Women are also known to experience more severe symptoms, and take longer to recover.

A study published in 2017 (Neidecker et al) compared the medical records of 110 male athletes and 102 female athletes, all of whom had endured a single sports-related concussion. Female athletes had symptoms for an average of 28 days, versus 11 in males.

In fact, multiple research studies have found in sports with similar rules between females and males, that rates of concussion are higher in women (Gessel, Fields, Collins, Dick, & Comstock, 2007; Hootman, Dick, & Agel, 2007; A E Lincoln et al., 2012).

But in-depth research specifically on the female brain injury experience is limited. Meanwhile, no female-specific brain injury guidelines exist in the sporting, military or healthcare arenas. Protocols and educational resources are also in short supply.

“I think some of it is misogyny,” says Katherine Price Snedaker, founder of Pink Concussions, the world’s first non-profit organisation for women and girls living with a brain injury.

Katherine was a social worker helping children with concussion when she started to notice differences between how parents of boys and girls responded to injuries.

“The girls’ parents were calling me weeks or months after the incident, yet with the boys’ parents it was within hours or days. I just kept seeing this pattern,” she says.

Katherine, who has three sons, initially put this down to bad parenting; but now blames widespread lack of awareness about female brain injury.

“If you don’t know what a concussion is, you’re going to be less likely to get the help in the time that it takes.

“People might have some of these symptoms, like headaches and nausea, anyway. If you don’t know what you’re feeling, you can’t know what to look for.”


Katherine (pictured above spreading the word about Pink Concussions) began looking for research on the differences between brain injuries in males and females, and while there was information out there, it was always in the small print, never the focus of the study itself.

She wanted to create a platform that would bring all of this information together, and so Pink Concussions was born.

That was in 2013 and, two years later, the organisation had enough support behind it to become an official non-profit.

Since then it has held seven international medical summits and scientific conferences and built up an advisory board of over 80 experts from around the world.

It also routinely works with major US health organisations, including the Centre for Disease Control and Prevention and NIH (National Institutes of Health); and provides support groups for more than 4,000 women and caregivers.

“My greatest goal is to work with the UN. We’re a small organisation and we’re all volunteers. The annual number of donations we take in is probably smaller than most school sports teams do, but we’re the only ones who do what we do.”

Pink Concussions is working to close the gap in research and awareness of female brain injury, through education, training and support. It also conducts its own research studies, exploring both sex and gender differences in brain injury.

As noted on its website, scientific research shows that female and male brains differ in more than 100 ways in structure, activity, chemistry, and blood flow.

Other potentially relevant sex differences include hormone levels, neck strength and head size.

Differences in gender – a social construct which is often but not always concordant with biological sex – include what Pink Concussions calls the “controversial explanation” that women are perceived as being more likely to report injuries.

Statistically, there are higher numbers of brain injuries in men than women, which goes someway to explaining why the vast majority of research has been studied from a male perspective.

It is increasingly evidenced, however, that women have more symptoms, feel them more intensely, take longer to recover and are more likely to experience post-concussion syndrome.

The lack of knowledge and awareness of female brain injuries, among women themselves, and in wider society, can have serious consequences.

If a woman’s recovery speed or symptoms don’t match expectations, this can lead to doubt, isolation and anxiety, beyond any she may already be experiencing, says Katherine. Women are therefore not prepared to cope with their injury.

“I think for many years, people just said it’s because women aren’t as tough as men. Women are weaker and complain more.

I’ve seen some really great sports doctors say ‘oh, she’s just highly strung, or she’s just emotional’.”

It’s only very recently that researchers have started to study brain injury specifically in women, after years of men doing research on men, says Katherine.

“In brain injury, it’s been men doing research on men or male animals. When they use female animals it’s messy. If a lab rat goes through its menstrual cycle every six days, that really throws off results, so it’s pretty uniform that they don’t do research on female animals.”

Also, the majority of brain injury research has been conducted on athletes, and the sports with the highest risk of concussion, such as American football, rugby and boxing, are male-dominated.

“If you want to see a bunch of guys with a brain injury where do you go? The (American) football field. Football has always worked out well in providing men to be studied.

“The researchers need them as lab rats as much as they want the researchers. The two are  entrenched in each other.”

But a study by the American Medical Society for Sports Medicine found that women are 12 per cent more likely to sustain a concussion than men in matched sports. Yet unlike in the men’s game, often these are not noticed or reported to medical professionals at the time of injury.

“Usually women’s sports are underfunded, and traditionally they have fewer medical staff on the pitch or the field.”

But it’s not just the sporting world which is neglecting to address the issue in women. In the military, safety and training equipment is often designed for men, says Katherine, and women are less likely to speak out about an injury for fear of being judged as “not tough enough”.

“Women are trying to operate and train on equipment that’s not necessarily made for them. A woman who might be the only female in her platoon, may be less likely to come forward if she’s injured, because she doesn’t want to be the one being pointed out,” she says.

Beyond the sporting world, those keen to study female concussion and chronic traumatic encephalopathy (CTE), would find a high volume of cases among domestic violence survivors, research suggest.

Blows to the head, face and neck combined with asphyxiation from strangulation, common in intimate partner violence (IPV), can lead to many women living with undiagnosed brain injuries.

In one of the first research studies into traumatic brain injury (TBI) in survivors of intimate partner violence, Pink Concussions board member Dr Eve Valera found that three quarters of the women she interviewed had sustained at least one mild TBI from their partners.

Eve, an assistant professor in psychiatry at Harvard Medical School, is now working on a new study, replicating many of those which have been conducted on male athletes, exploring the long-term effects of these brain injuries for women.

“If we’re talking about neurodegeneration in women we really know nothing. I call it an international public health epidemic. We have all these resources and money and studies on male athletes and there’s nothing like that with respect to women experiencing IPV.

“There’s a disjoint between what people are learning from sports or military data, where we see most repetitive head injury research, and what a woman may think is going on with her.

“There’s an awareness that playing football can lead to injuries that can have long-term neurodegenerative consequences but for the most part, there’s no public awareness that, if you’ve been in a physically abusive situation and you’re getting these types of blows to the head, you may have a long-term neurodegenerative disease.”

The lack of studies for women often means that survivors who do wish to speak up about their injuries find they have nowhere to turn. Eve has been contacted by women who have been turned away by researchers who cannot study them because of their sex.

“These women are left with no one. They call me and they’re desperate,” she says. “Where as male athletes feel like they have a place to go if they’re concerned about CTE, if you are an IPV survivor you don’t have anywhere to turn.”

Pink Concussions launched its campaign the ‘Pink Brain Pledge’ for this very reason. By partnering with several brain banks around the world, it is encouraging women to ‘take the Pink Brain Pledge’ and donate their brain to science. So far, 450 women have done just that.

“Any woman can pledge her brain for our programme. As much as we need women with brain injuries, we also need women without, for controls.”

Katherine believes studying these brains could lead to huge developments in brain injury research – and the key could be in looking at how hormone levels affect outcomes.

“We’ve proven the same thing over and over again, that there are differences. Now we’re trying to push the research to the next point. Let’s figure out why these things are happening.

“We look at what hormones people were born with, what hormones they are taking, and if you were born male, and you’re taking female hormones, how does that affect things?

“If hormones can control the outcome, then how can we take that and make an antidote or something that’s preventative or at least lowers your rate? We’re not there yet, but that’s my hope.”

This is not just a women’s issue. While females remain at the heart of Pink Concussions, the work the organisation is doing could help to improve education and medical care for all those living with a brain injury.

“Slowly we’re spreading out and women are learning more about brain injury. But I’m hoping that the gains we make in female brain injury we can apply to men too.”

For more information visit https://www.pinkconcussions.org

(Photos provided by the Schulich School of Medicine & Dentistry, Western University, Canada.)


Neuro Rehab Times is the magazine for all professionals involved in the care and rehabilitation of people with neurological conditions and severe injuries. Get your copy, filled with exclusive print-first content, every quarter for just £24.99 in the UK or £34.99 internationally (price includes postage and packaging).

 

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Brain injury case study: Simon’s story

Simon’s story demonstrates that consistent support from a small, specialist team can maximize quality of life and reduce barriers to discharge home.

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In August 2019, Simon was admitted to the Coach House in Northampton, a specialist residential care home for adults with acquired brain injury. He was the first service user in a brand new service from experienced care provider, Richardson Care.

He had sustained a hypoxic brain injury in 2015 following cardiac arrest, and had resided in a number of care environments following his discharge from acute rehabilitation.

He was referred to Richardson Care due to an increase in unsettled and challenging behaviours and as his current placement was no longer best-placed to meet his needs.

Simon had been increasingly isolating himself from the rest of the care home and would only engage in very limited activity with 1:1 support. He would frequently make complaints about his placement.

Goal for Placement

On admission to the Coach House, the overarching goal was to enable a safe discharge home for Simon. To enable this, further exposure to more independence would be required to appropriately risk assess and inform future care provision once at home.

This would provide information as to whether his previous environmental restrictions within care homes were preventing his progression or whether his needs were more enduring.

Intervention and Support

Following an initial assessment of his needs it was evident that Simon struggled with flexibility of thinking and that unsettled behaviours would present when his expectations were not met.  This could then manifest itself in paranoid behaviours, which he would then perseverate and allow to dictate his day.

Simon was provided with a structured programme to assist him in managing his expectations: a programme which he devised with the support of his Keyworker, Gareth.

By adopting a person-centred approach to the formulation of his programme, Simon felt in control of his day and less reliant on others to initiate activity for him. Simon was able to manage his own expectations of how his day would look.

He became increasingly able to manage deviations from this if he was informed of the purpose of these changes. Whilst Simon still presented with some agitation on such occasions, the structure and the relationship he had built with his key staff enabled him to become more receptive to feedback.

Simon became more flexible in other ways and was more willing to take on new challenges. His initial engagement in food preparation was short lived, but his willingness to at least ‘have a go’ was a marked difference from his previous compliance. He started to eat different meals at lunch time and take interest in his nutritional intake.

He joined the gym and set goals around his personal fitness. Whilst Simon was still largely dependent on others for some activities of daily living, he had developed new interests which significantly and positively impacted on his quality of life and mood.

Whilst Simon remained resistive to face-to-face therapy, he benefitted from oversight from the clinical team who would assess and inform future interventions and support. Simon gained some insight into the limitations imposed on him by his brain injury and focused on realistic goals, rather than shutting down at the suggestion of anything new. In brief, Simon started to enjoy his life.

Discharge Planning

Simon’s placement, in part, was to assess whether plans for future independent living were a viable option. During the year of his placement, on-going risk assessments were completed and observations made to inform future care needs on discharge home.

Close liaison with his case manager enabled remote planning during the Covid-19 pandemic, using technology to ensure that Simon could make decisions and choices regarding his future adaptations and environment. An occupational therapist from the team assessed Simon’s future home and made recommendations.

The team at Richardson Care also made recommendations on how a care package should look and Simon was involved in drawing up a person specification for the role of his personal assistant. In August 2020, almost a year since his admission, Simon discharged to his own home.

What did Simon say about the Coach House?

He felt that the staff treated him with dignity and respect and listened to him.

Simon said: “I like the room at the Coach House, I can’t complain.”

“I was only disappointed once during my stay.”

What did his case manager say about the Coach House?

Five weeks after admission:

“It was really lovely to visit yesterday and to see how well Simon is doing at the Coach House. It was particularly encouraging to hear that he is engaging with eating at the Coach House and not spending fortunes on going to a restaurant every day anymore! It was genuinely heart-warming to see the enthusiasm and satisfaction on his face, describing the steak lunch he had just bought, helped prepare and eaten.

Simon seems a great deal more relaxed in his new surroundings and it is abundantly clear that he has a great team around him, who understand his needs and are pro-active with him. He has not experienced that before, so it is all very pleasing! Many thanks.

After Simon’s discharge

“Could not have managed yesterday (or the past year!) without yours and especially Gareth’s support. He was an absolute legend yesterday – he really is a credit to himself and the Coach House. He did not relent in his efforts to help Simon settle in. He even put a ton of DVDs away on shelves after driving down and unloading the van in that heat. The man is a tank!

“I will make sure our paths cross again the next time I have a suitable candidate – I’ve really enjoyed working with you and your team too. You helped transform Simon’s life!

Chris Dindar RGN, Associate Case Manager at Brain Injury Services Ltd

Richardson Care is an independent family business and has a proven track record over more than 30 years. It has six specialist residential care homes in Northampton, three of which provide care for adults with acquired brain injury. The remaining specialise in supporting adults with learning disabilities. Its focus is on providing an inclusive family environment in which service users develop daily living skills, increasing their independence and well-being.

www.richardsoncares.co.uk.

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Expanding the horizon of neuro patients

With AlterG Anti-Gravity Treadmills.

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A wide range of patients are now benefiting from the use of AlterG Anti-Gravity Treadmills throughout clinics across the UK.

Patients with a wide range of neurological conditions are gaining confidence within a fall-safe environment which allows for high intensity repetitions along with increasing motor learning early on in the rehabilitation stage.

Originally designed for NASA, the AlterG uses patented Differential Air Pressure Technology to unweight patients from 100% down to 20% of their bodyweight in precise 1% increments.

AlterG started in Professional Sport assisting with rehabilitation from ACL and Ankle injuries, moving onto MSK Physiotherapy Clinics. However multiple research papers and case studies have now been carried out to show the benefits of use with multiple neurological conditions including Stroke, Multiple Sclerosis, Parkinson’s, Functional neurological disorder, Brain Injuries & Incomplete Spinal Cord Injuries.

Developing the technology further, along with a precise partial weight bearing environment, AlterG has liaised with multiple Neurological Physiotherapists and Surgeons and added new features to enhance the experience on the machine and enable patients to gain as much as possible from each session.

The machines are now available with basic Gait Analytics (Stance Time, Step Length and Weight Bearing Symmetries and Cadence), Pain scales, pre- programmed exercises and camera for live video monitoring allowing patients to see their feet whilst walking.

Multiple case studies have been carried out, one of which is Brainstem Cerebrovascular Accidents (CVA) or Strokes. In conjunction with AlterG, Kate Haugen from Great Moves Physical Therapy (Colorado, USA) wrote a great case study with regards to a 42-year-old runner and university tennis coach. The individual presented two strokes resulting in right sided weakness and significant balance deficits from the first stroke and almost complete paralysis on his left side for 8 days following a second CVA.

“Weightbearing exercises caused medial tibiofemoral joint line pain and swelling. The patient was unsuccessful with a stationary bike and elliptical trainer. AlterG allowed for more controlled loading progression for returning to Full Weight Bearing.”

After multiple weeks of rehabilitation, the patient can now step over objects and change direction quickly. In addition, there are no limitations with the distance the patient is able to walk, and they are not limited by fatigue.

Along with a range of case studies, various research papers are available online showing how the treadmill can be an effective intervention for those who have experienced a stroke or other neurological conditions.

“The AlterG enables Neuro patients to experience what they thought they could never do again – be it walking, jogging or running. We have had some very encouraging results – even with clients who had trialled some of others rehabilitation technologies, including a conventional partial-weightbearing treadmill. Any neuro patient who can achieve an assisted step to transfer into the AlterG can benefit.

The AlterG allows a physio to challenge neurological patients in a safe manner and in a cost-efficient manner without the need for an additional therapist or assistant”.
– Jon Graham, Physiofunction.

Trevor Donald, Managing Director of SportsMed Products Ltd (the UK distributor) stated “it is great to see research coming through about the huge benefits the AlterG can have for individuals suffering with neurological conditions. The patient stories emerging from our customers at neurological physiotherapy clinics has been incredible”

Not only does the AlterG aid walking but it can be used simply in a partial weight bearing environment to carry out exercises such as single hand throwing and catching, squats and hopping.

If you would like further information on the papers and case studies carried out along with clinical protocols please feel free to contact AlterG’s UK distributor, SportsMed Products Ltd.

https://sports-medical.co.uk/case-studies/

sales@sports-medical.co.uk

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The family experience of brain injury

After a person acquires a brain injury, the impact on the whole family can often be life changing as they adjust to a new reality and relationships come under intense pressure…

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Karen Ledger (KL): When brain injury occurs, it’s like a bomb going off in the family. Life will never be the same again for any of the members of that family.

People will be shocked, bewildered and overwhelmed, and they then have to go through a complicated process of adjustment, and people reach that adjustment at different stages.

The person with the brain injury will generally have a neuropsychologist assigned to support them. Most will pay attention to people’s feelings and emotions, but the rest of the family may not have any psychological support.

This situation doesn’t get better of itself without professional input, it can get worse and people’s mental health can and often does spiral down.

Louise Jenkins (LJ): It’s a particular challenge if you’ve got someone with little or no insight. They often won’t recognise the need for or be willing to engage with neuropsychological treatment until much further down the line, by which stage, the family may have entered a more advanced stage of crisis and their whole family unit may be at risk of breakdown. There are complex emotions involved in the adjustment process following trauma which include shock, guilt and loss.

KL: That’s a scenario we see a lot. The client’s relationships may get to an advanced stage of deterioration and as Louise says, crisis, before they’re able to accept help. This is often because there is an immense amount to absorb from their new world of injury, rehabilitation and the medico-legal process and clients do not have the psychological space to consider how they are, never mind undertake the rehabilitation.

LJ: That’s where some of the challenges come in from the legal perspective. The compensation claim process is quite rigid in that generally speaking, only the injured person can claim for financial losses and for professional support, but we maintain that as the underpinning principle for compensation claims is to restore someone to their former lifestyle, you have to consider them both as an individual and as part of the family unit. We try to build into the claim some therapy sessions not only for the injured person but also for their spouse and their children.

Some defendants (compensators) say they’re happy to support that because, if the family unit breaks down and the uninjured spouse has been providing a lot of the day-to-day support, prompting and encouragement that the injured person needs, the cost of commercial care to replace that support is significantly more expensive than the amounts you can recover in a claim for support provided by a family member. It is also about embracing the spirit of the Rehabilitation Code and Serious Injury Guide in looking at the wider family need.

KL: Often, people can’t work anymore; they feel their work is taken away from them. People get their sense of identity out of work, as well as from being a spouse or a partner, a father or a mother. And if they lose their ability to earn and their relationships start to deteriorate these are often perceived as more failure and thereby serve to reduce a client’s confidence and self-worth.

LJ: It is akin to a bereavement process for the uninjured partner, yet the person is still there with you.

KL: People don’t have to have a death to experience loss, and loss can activate a bereavement process. So they’re grieving for the person they once knew, and now they’ve got this new person which makes adjustment to the injury complicated. And the thing about brain injuries is they’re hidden. The person looks the same but behaves differently to how they did before. It understandably takes a long time for clients and family members to really grasp the effects of brain injury, because they’re often traumatised, angry, discombobulated and distressed.

The family that includes somebody with a brain injury goes through a process of understanding, just as the client hopefully does.  It’s a complex situation trying to comprehend what a brain injury means whilst feeling bereaved.

Family and children’s therapy is relevant too. Children often get missed because they deal with loss and trauma in different ways to adults. Children tend to get on with their lives, as if it’s not happening, so they need particular attention. They won’t be talking about it so much, but they’ll be experiencing it. The sooner that’s managed by specialists, the better it will be for children in the longer term, giving children the best chance of allowing normal development to take place.

LJ: It’s difficult because there’s a significant investment of time and energy put into implementing a rehabilitation programme and support around the injured person. This is integral to the claims process. The spouse can feel as if all the focus is on the injured person and they’ve been left out.

From a legal perspective, we try to involve the uninjured spouse as much as possible in discussing what we’re doing and why we’re doing it. We try to weave in that therapy support for the uninjured spouse so they come along the journey with us rather than becoming a disrupter to the rehabilitation programme because they feel excluded and unsupported. If securing interim payments through the claim to fund support is challenging at an early stage, our in-house team of client liaison managers, all of whom have a healthcare background, can provide time and input in discussing the challenges and in signposting for support both for the uninjured spouse and children as well as for the injured client. There are some really valuable resources for children, for example, which explain some of the problems that can arise in a parent who has sustained a brain injury to help them to understand and come to terms with changes in the family dynamics.

KL: People affected by brain injury can feel deserted by their partner and like a single parent.  This is because they’ve lost their partner’s contribution to childcare and work in the home. The complexity and challenges of living in these circumstances should never be underestimated.

LJ: At the point of injury, they are in shock and just want to be there for the person who’s injured.  I’ve worked with a number of people where the grief and adjustment process is very substantially delayed. These delays extend to weeks, months or even years.

They’re in a fight/flight/freeze situation. They’re managing a situation that’s about life and death initially in the most serious cases. When the acute stage is over and they have some space to start thinking about themselves, rather than the person who’s injured, they can start reflecting. It’s an emerging awareness that it’s never going to be the same again, that some degree of permanence will remain with the injuries, that this is how it will be in the longer term and a realisation that you need support to adjust to the new normal.

KL: It takes a while for that realisation to come in. I am often working with partners who are in that process of adjustment and what initially attracted them to the person pre-injury has been lost post injury, for example agile thinking and intelligence.  Moreover they now find themselves in a caring role and one where many strangers are entering their home and talking to them in alien language!  It’s not surprising that for many people this is often too challenging for them to manage and why therapy is needed as soon as possible for clients to regain their own personal power as soon as possible. They will have a private listening, respectful and tender place for them when the rest of their lives are so exposed.

LJ: They don’t know where that injured person is going to land with their recovery in the longer term. There’s a natural recovery process of a minimum of two years following brain injury, often longer, and they don’t know how much recovery the person’s going to make. They’re living with that uncertainty for a long time before being able to understand and adjust to what the long term will look like, often with significant physical, cognitive and behavioural changes which place great strain on sustaining relationships. Independent family law and financial advice is often essential to protect both parties in the event that the relationship does break down.

KL: I believe that acquired head injury is usually devastating to the person and those around them.  However, in my experience, people are often amazing in how they find the strength to establish new ways of being and making their life work for them.  Therapy can often speed up that process because clients feel heard, respected and understood, a powerful combination for a restorative process particularly when they are so often feeling powerless.  This process can help families stay together or decide to go their separate ways and with support they are more likely to do this without acrimony and additional trauma.  Observing and supporting clients and their loved ones to dig deep to find the strength and commitment to establish a new life is such an amazing privilege and honour for me.

LJ : When the claims process is managed by expert serious injury lawyers, early access to specialist rehabilitation and support will enable an injured claimant to restore their life to the best possible position and allow them to maximise their potential for the long term, restoring a sense of control and positivity for the future. Working together with therapists like Karen is essential to ensure that a multi-disciplinary network of support can be put in place in order to support an injured person to achieve their goals and rebuild their life as an individual and as part of a family unit after a life changing injury.

Louise Jenkins is a partner at Irwin Mitchell and leads the serious injury team at the firm’s Sheffield office. Karen Ledger is managing director of KSL Consulting and a therapist, counsellor and supervisor with over 30 years of experience.

 

 

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