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What You Need to Know About Brain Injury

There is a multitude of gaps people fall into following an injury to the brain.

Here we share the most common challenges people face. We believe that talking about these helps people be more prepared and change the public perception of what to expect. 

Information you may miss

overwhelmed doctor Doctors are always very busy in an emergency room or in practice. They may not have the information you need for you to take away or have time to discuss all your concerns. So, what do you need to know?

Be aware of worsening symptoms:

Everyone needs to be aware of the signs of worsening symptoms as these may indicate a slow brain bleed or that further assessment is necessary. Symptoms may be subtle and may not appear until days or weeks after an injury.

Please refer to the checklist (navigate from the side menu) for help for those who live alone.

For children, please see the Child Brain Injury Trust factsheet.

Who to call for advice:

Start with your doctor. Print this to take with you – Brain Injury A Guide for General Practitioners – Click To Print / Download

Many countries have brain injury organisations you can call. The easiest way to find a group near you is to search on your browser. Type in ‘brain injury support group near me.’ If you have any problems, please contact us. We will be more than happy to assist.

Finding other people to talk to:

man discussing with open hands There are many online support groups and forums. We recommend Traumatic Brain Injury Healing and Recovery Support Group; you can find them on Facebook.

No two brain injuries are the same, so if you do chat with other people to share experiences, be mindful of comparing symptoms and outcomes. You will find that you share similarities with many people, and talking about these can be useful if you bear in mind that your journey is particular to you. Read The Comparison Trap by Wendy Lustbader M.S.W.

Many factors influence recovery, including age, health, diet and lifestyle. For example, two people of a similar age may find differences in their symptoms and outcomes because one may be sedentary and another a sports and health enthusiast. Many people find strength and feel supported, knowing they are not alone.

Every single brain injury is unique.

Understanding prognosis

Because every brain injury is unique, it can be difficult for doctors to predict outcomes. People want to know what to expect and can feel at a loss when answers are not readily available. Also, diagnosis may not always be clear to the patient or family. For example, a ‘mild’ traumatic brain injury does not indicate that the damage is not acute; the definition means that there was no loss of consciousness or that, if apparent, it was minimal in length.

Any kind of concussion is classified as a head injury or traumatic brain injury (TBI); both are ABIs. 

wooden foot bridge with the words what lies aheadRecovery outcomes depend on many factors adding to clinicians’ difficulties in giving a prognosis. Over the first months, your doctor or specialist can better indicate what to expect. Treatment and how immediately this starts will also make a difference. There is a six-month ‘golden window’ of opportunity in which the injured brain is most able to recover spontaneously.

When symptoms and outcomes persist, speak to your doctor and ask about a referral to a neuropsychologist who will devise and guide a treatment plan.

You can do a lot to help yourself, such as getting plenty of daylight and fresh air. See our ‘Positive Health’ section for more information.

Recovery is always on-going

The provision of inadequate information can persist. Sometimes people are still told that healing does not continue after two years. However, this opinion is very much outdated. The brain is capable of rewiring indefinitely after injury. It helps people to understand this at the onset because false expectations can have a psychological impact which can interfere with rehabilitation.

sunset sky with chain with broken end and birds flying freeYou may also hear that a brain injury is ‘for life,’ and this can frighten some people and cause them to believe that how things are will never change. It is vital to get a perspective on this in the early stages. While the person may never regain the same level of skill they had previously, the brain is always rewiring, and with patience, gentle feedback, support from a neuropsychologist or other experts, plus repetition of learning, people can and do overcome impairments.

Some functions are replaced by learning coping or compensatory strategies taught by a neurological specialist, usually a neurological occupational therapist. To start with, doing things differently from previously ingrained habits can be challenging for some people; however, as time passes, people start to realise the benefits of using new strategies. In many cases, skills will become ‘automatic’ and habitual again. The time it takes will depend on the severity of the injury and the level and quality of professional support, and the involvement of family and friends in the recovery process.

If you check out our ‘Partner Projects‘ page, you will find various recommended apps to use at different recovery stages. 

We have further strategies and tools you can use in our ‘Self-regulated Learning‘ section.

The other common misconception is that brain injury permanently changes personality. The core personality remains, so intentions and motivations remain true to a person’s character. As these sponsoring intentions plus our reactions make their way through the damaged neurological circuits, they become broken and twisted, resulting in evident changes in behaviour. The same person is still inside, although damage to the frontal lobes affects how we use personality from an executive commands point of view and also affects how we can appraise the emotional significance of events, analyse our environment and incoming information, and much more. 

Unfortunately, ignorance can also still persist. Some people are abandoned by their families because they believe that brain injury has caused them to become ‘retarded.’ Brain injury does not affect intelligence; it changes the way people can accomplish tasks with neurological damage. With help and support, people can rewire their brains and eventually make significant improvements.

Brain injury is not a psychiatric illness either. There can be many changes in emotional response and control. However, these tend to balance back out, and in time, people regain their ability to manage their thoughts and feelings.

Brain injury can exacerbate previous personality tendencies and traits but will not cause a new personality to evolve. People rebalance themselves through learning about their brain injury and how it has affected them.

Pre-morbid conditions and existing mental health problems will affect post-brain injury outcomes. 

Alternative approaches

conventional versus traditional medicineThere are two main approaches to managing symptoms, pharmacological and neutraceuticals. It is worth spending time considering your personal preferences and also taking the time to do some research and speak to your doctor. 

Try to find a doctor who has experience in brain injury and will support you in the best way. Ask them about their experience as some doctors will have different levels of knowledge than others. Very often, people share their experiences about why you should be precautious. Because a brain injury can affect the way the whole body functions, there are benefits to working with a functional practitioner.

While many people find relief with medications, many others have strong reactions following brain injury or may develop sensitivity over time. Symptoms may worsen, or strong side effects may result from using prescription drugs to relieve physical outcomes. Working closely with a prescribing physician and discussing long-term approaches to your health is essential.

Over the last ten years or so, there has been a lot more research into supplements that support the brain, and while many neurological experts prefer to stick with medicine, there are some who will support your interest in doing what you can to help yourself.

It is essential that you speak with your doctor before taking any supplement. Some may have contra-indications to prescribed medicine, and some you may not need at all. 

Finding the balance

balancing stones with purple orchid and candlesAdvice about rest and activity following a brain injury can vary depending on the source. While doctors used to advise that people take complete rest, the current consensus is to find a balance between light activities and rest.

Depending on the severity of the injury, reactions and needs can vary.  Overstimulation can increase feeling overwhelmed and exacerbate emotional responses such as anger, irritability and frustration. For many people, making this connection between feedback from others and understanding their own emotions and feelings is difficult.  Many people feel pressured to get back to their everyday routine but should always err on the side of caution as doing too much can worsen the inflammatory response.

It is essential to listen to the guidance of your neurological expert or doctor.

You may need to find activities outside your usual comfort zone if you have problems maintaining attention. All forms of art and craft are known to be therapeutic.  If physical injuries allow, taking gentle walks in the fresh air, listening to guided meditations/practising mindfulness, or yoga/tai chi are all beneficial.

Unexpected changes

The effects of a brain injury ripple out and touch everyone. The changes can vary on a spectrum from minor to extremely severe across all aspects of health and life.  There is now more understanding about the emotional and psychological repercussions on everyone, and it is essential that wherever possible, the family are included in the therapeutic process.

dominoes in question mark shapeThe experience of living life after brain injury can vary enormously and very often will depend on the quality of care the injured person receives. The more family are included, the less likely they will become frustrated or walk away.

A brain injury’s effects can significantly impact family income, career, relationship dynamics and intimacy. The outcomes can change established roles, responsibilities and hierarchy within the home.

Adapting to these changes can be difficult and may cause anguish and fear. Sometimes these worries need to be put on the back burner because there are more immediate needs to attend to. It is vital to give these matters your practical attention as soon as possible.

When we are educated about something, we feel more able to manage it. Do all the research you can so you know what to expect. Encourage wider family and friends to read any pertinent information you find. Many people drift away because they don’t know how to help or be supportive. Allow people to learn, and they are much more likely to maintain relationships. Let them know what you need and talk about what you understand.

You can better manage expectations and outcomes by sharing knowledge and information from the many sources available, including neuro specialists, websites like this one, and support organisations and groups.

Change can be catastrophic and tragic, affecting every part of daily living. Ambiguous grief is commonplace, and feelings of emotional loss can be prevalent in everything you try and do. Grief can affect everyone and can be overwhelming. Acknowledging what has happened and getting to the point of acceptance early on can make a big difference in how anyone manages brain injury outcomes.

Many brain injuries are ‘invisible’ because there are no visual clues of disability. Very often, people look physically well and yet struggle with a myriad of complications and changes without having the cognitive functionality they need to deal with it – or explain it. Despite appearances, there will be functional loss and cognitive impairment. The degree to which someone is affected will depend on the severity of their injury. Everyone needs support and understanding.

Struggling to get help

Problems with getting help after a head injury are very common, especially for those diagnosed with concussions or mild traumatic brain injuries. 

Something not commonly known is that these aren’t the only people who ‘slip through the net’ and sometimes fail to set medical support. The terms ‘mild,’ ‘moderate,’ and ‘severe’ indicate the length of time someone was unconscious rather than being reflective of outcomes and symptoms. The ‘walking wounded’ categorised as ‘severe’ can also fail to be referred for neurological assessment.

Until protocols are implemented for everyone, it is up to the patient and their family to be assertive when symptoms and the cognitive/executive effects continue to be problematic more than one-month post-injury. For those with severe difficulties, urgent attention should be sought. If your emergency department gave you information or guidelines to return to them, these should be followed; otherwise, visit your doctor and discuss getting a referral for neurological assessment. 

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