Welcome to ‘The Inside of Brain Injury’
For the millions of people around the world affected by different types of Acquired Brain Injury (ABI), either directly, as a ‘survivor,’ or indirectly, as a family member or carer, there are often gaps in health service provision or information. Because of this, people are left to grapple with situations that they really shouldn’t have to.
No one should have to struggle alone.
For those living with the outcomes of trauma to the brain, the path towards recovery is bewildering and often daunting. It is especially so for those who are without the help of specialist services. For many people, there is frequently no path ahead; there is no structure. People are left battling from one moment to the next.
Everyone who is struggling or in pain deserves to have hope. We aim to bring helpful information to you that will enable you to improve your health and brain environment, which, in turn, will alleviate symptoms and enhance thinking space furthering executive improvements. The science-backed help you need to understand what is happening, and how to get better, is here!
We have always believed that together, we can change the recovery experience for those who are without medical support.
However long it is since your original diagnosis, please ask your doctor for a referral to a neuropsychologist if you haven’t had a neurological assessment.
What we do
A brain injury can make life very difficult to navigate.
We understand this. We have been raising awareness and supporting others since 2010.
‘You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.‘ Eleanor Roosevelt
A brain injury changes everything in varying degrees of subtlety for everyone it touches. Each medical insult is unique, though there are many similarities in the ways people experience outcomes and symptoms – whatever the cause.
Probably the most meaningful thing we do is help you understand why you feel the way you do and offer different ways of thinking. The symptoms of brain injury are ‘intelligent biochemical messages’ which help you know what you need to do. Symptoms are not outcomes – they are indications that something is awry.
There are lots of things you can do
Because we are all unique, what works for one person may not be effective for another. There are no defined health pathways that work for everyone. However, by alleviating symptoms, it is possible to improve the brain environment and create a better personal understanding of the extent of neurological damage. We provide suggestions which you work through at your own pace, in your own time and make all your own choices.
By learning about your specific changes, you can learn what to focus on, enabling you to be more independent and take on more responsibility for your recovery. The more you can understand, the more you will be empowered to make choices you may not have considered. Understanding just how much you can do to help and heal yourself, will motivate you to naturally make the changes you need to make – for life.
Many pages have a summary at the top, so if you struggle with reading and absorbing information, this should be enough for you to be able to start bringing the pieces of the puzzle together. If you are struggling and need something explained differently, please do get in touch. We are always more than happy to help you fill your gaps. Don’t battle through your recovery on your own, or allow yourself to believe this is too much for you.
The information and suggestions made on this site can make a really noticeable difference. Use audio tools if you struggle with reading, and always remember there is no rush.
The ripple effect – families
While the effects of brain injury can be confusing and difficult to understand, problems intensify when doctors dismiss their patients due to a lack of understanding. As no one is guaranteed specialist help, even those who have severe visible outcomes may find themselves on a waiting list or may be sent home into the care of an unprepared family. Sometimes the lack of medical support can lead people to believe that brain injury does not have severe consequences, and many families will assume that things will work themselves out on their own. When things don’t get better, people sometimes think that the injured person is malingering. These false suppositions can be incredibly harmful to relationships.
In many areas, there is a shortage of specialist help, and sometimes people have to fight to find services. The ‘fight’ doesn’t end there though, and there can be numerous practicalities to address, and a lack of medical care can increase the difficulties people have with accessing other services and benefits as well as causing problems with insurance claims. Families often find that they are called upon to manage or oversee the affairs of their loved one.
Everyone will need the on-going strength and support of the wider family, friends and from those professionals involved in providing treatment, management of services or legal support, especially those with a loved one who is severely injured. Grief, ambiguous loss and stress can take its toll on any member of the family. Many feelings, such as shame or guilt, can be complicated to understand and deal with, especially when people are emotionally overwhelmed and dealing with multiple life changes.
Speak to your doctor
Many general practitioners are now aware of plasticity recognising progress is made even years after a brain injury and will refer patients to specialists, such as a neuropsychologist, at any stage.
There are specialist services available, although you may have to wait for an appointment.
If you were diagnosed, but have never received specialist help, you need to ask your doctor for a referral – no matter how much time has elapsed. You may need to be persistent: you may need to take information with you to show your doctor.
Discuss any changes you want to make with your doctor – especially with diet or supplements that may affect treatments or medications you are already on. Always speak to your doctor if you are pregnant or breast-feeding.
Please make sure you read the disclaimer before proceeding
Navigating the complexities
Whether you are new to brain injury or have been struggling along without much help, there are always questions that people usually ask and things they want to understand.
Some questions may take precedence above understanding the complex changes. For example, people want to know if they will get better, how long it will take, and whether or not they will get their life back. Families ask these questions too, and they also want to know what they can do to help.
Answering these questions isn’t always straightforward. A neurological assessment is crucial for understanding the depth and breadth of outcomes. For those without professional support and treatment very often, the best way to really understand what is going on is to find out as much as you can about what you are experiencing. For example, is your recovery complicated by unresolved grief or anger? Is continuing stress adding to inflammation and exacerbating your symptoms? Are your symptoms being prolonged by your diet and environmental toxins?
Many things cloud understanding, and one of these can be the effects of the brain injury itself. For example, you may recognise that sometimes you feel sad or angry, but you may not be aware of the cause, or, you may know the reason, but can’t stop your brain from ruminating even though it doesn’t provide any answers. For other people, there can be a complete lack of awareness about their feelings or behaviours, so no one solution is right for everyone.
What is known is that the brain itself is tenacious and never stops rewiring and rebuilding itself. It does this best if it has a ‘calm’ inner environment.
We will explore all these issues, and more!
How information is shared
People living with brain injury outcomes can really struggle with identifying what aspects of impairment are causing them the most problems. Being told that you have memory or behavioural issues, for example, often doesn’t necessarily convey any meaning.
However, if someone describes to you what living with these outcomes is actually like, this can spark recognition and really help the ball to start rolling. With practice, the penny will fall into the slot, and it is this process that helps people start to become consciously aware of differences in executive skills and cognition.
These fuller descriptions can also help families and friends. They familiarise us with how to understand the behaviours being observed and experienced. Again, being told that someone you love is behaving a certain way because their executive functioning is no longer working, doesn’t really help – we understand you may need more than this.
Treating the causes – and not just the symptoms and outcomes
Understanding brain injury in better ways is about starting in the right place.
You need to understand the primary and secondary outcomes and symptoms, and the resultant effects before you go to ‘Healing Your Brain.’ A competent overall view will help you navigate your way through your recovery.
The path is different for everyone
When we understand why something is happening, we are automatically motivated to make the changes we need to make. We support suggestions with science. We are going to explain why we all need to know about the causes of our symptoms and outcomes, why we need to understand more about what has happened, and how we can improve our daily lives.
When we understand more and make the necessary changes, we are motivated to keep going, and the changes we choose to make become permanent because of personal involvement. If you are ‘told’ something – you are likely to dismiss it. If you are ‘taught’ something, you will use it.
We understand that the amount and depth of information needed will differ for everyone. Management of Brain Injury will take you through some quick video tutorials to help you know what you need to do to improve your symptoms. You will be able to understand why you struggle with the outcomes that you do. Importantly, your family and friends will also be able to understand. Understanding negates assumption and best guesses that can cause all kinds of mayhem.
This all helps…
The First Thing to Do
Many of the symptoms of brain injury, such as anxiety, brain fog, fatigue, depression, and headaches, are often caused by the biochemical cascade that happens immediately after any trauma to the brain. If we can reduce inflammation, oxidative stress, and the other harmful effects of the biochemical loop, we can also reduce the associated symptoms. Researchers are still investigating when we should start to tackle these issues and how best to do this.
If you are here because you have an on-going brain injury there is some worthwhile information located under ‘Important Information’ that everyone needs to read – namely, ‘What happens to the Injured Brain,’ and, ‘Dangers of Stress and Cortisol.’
Depending on the severity of your brain injury, you may need help with moving through this site. For others, you may find that you need to read things more than once. Take your time, nothing on this site is about a quick fix – it is about bringing you a process to follow at your own pace and in your own time.
We are continually updating and improving this site and welcome all feedback. If we can make something better for you – we will. Just let us know.
If you are tempted to go straight to ‘Healing Your Brain,’ you may find that the guidance there is not only harder to follow – but, likely, you won’t make all the connections about why we are suggesting certain things. Think of it this way; if a home appliance broke down, you would need to know the cause so that you could fix it – the same process happens with the brain. A considerable part of the design of this site is about helping your mind understand what has happened. Jumping ahead will make things much harder – this isn’t a book where all the answers are at the end – they are all part of the process.
Just in case: If you do jump ahead, there is a possibility that your brain won’t understand what you are doing or why. What we believe, from what we understand, plays a crucial role in how well we will heal. Take your time; follow the menu.
Before proceeding –