Understanding Brain Injury
*Dysexecutive Syndrome and the disablement of previous skills
*Walking and talking – the invisible injury
*The effects of brain injuries ripple out
*Communication and understanding
There is an extraordinary amount of information on the internet about brain injury, but it isn’t always easy to understand or easy to associate for those living with a brain injury.
Facts can be difficult for people living with brain injury outcomes to interpret – they often remain stored as facts with no entanglement being made with other data. It is a bit like watching specks of dust in the sunlight. It isn’t until they settle on a surface that they start to form a ‘solid.’ It is this ‘surface’ for things to settle on that is often missing after a brain injury because memories, and the routes to them, have been lost or disrupted.
Sometimes all we want to know is what is going on and why – in uncomplicated and straightforward terms.
The impacts of brain injury
As well as the difficulties people have with associating their experiences to information, people can also struggle to find information about the things that they are struggling with because there is often a strong tendency for people to explain how they feel clearly.
People want to know how they can be better understood, how to understand themselves better, find out what is broken, and learn how to fix it. Often there is so much to try and understand, especially in the early stages, that people often don’t realise how their brain injury impacts others.
People also need to know how to manage physical symptoms, such as headaches and fatigue. When symptoms are alleviated by addressing their cause, rather than treating each symptom separately, it is easier to work your way through a structured process of learning and understanding.
The typical physical symptoms of brain injury, such as migraine, light and noise sensitivity, brain fog, and insomnia, can be just as debilitating for many people as the cognitive, behavioural, and emotional outcomes and consequences. Symptoms, such as headache and feeling overwhelmed, are related to the secondary outcomes of brain injury.
If we can understand what has happened to the brain, we can start to break down the outcomes into manageable pieces and address them one at a time.
Dysexecutive Syndrome (DES)
Many people are unaware of why they are struggling so much, and this is especially so when there has been no medical intervention. However, it can help people to break down the individual outcomes and effects if they have access to useful information.
Because these cognitive, behavioural, and emotional outcomes often happen together, there can be a lot of confusion about the overlap – from both the inside and the outside. The thing is to resist worrying too much about the exact route of a problem and think instead in terms of questions. For example:-
- Cognitive – Am I having trouble working out how to do something? Do people try and show me how to do things?
- Behavioural – Are people telling me that I have changed and don’t behave in the same ways; or, am I aware after consideration that the way I approach things is different?
- Emotional – Are people telling me that I am more sensitive, more easily upset, or that I react in a different way to how I would have done before? Do I feel out-of-control?
We will address each of these areas in lots of detail explaining how it may feel to the injured person, and also the frequent observations made by families and friends. Most importantly, we will cover what is genuinely going on to increase understanding.
If you want to know more about the technicalities, there is an excellent description of Dysexecutive Syndrome on Wikipedia that is straightforward and explains why the terminology was changed from ‘Frontal Lobe Syndrome.’ The latter diagnostic descriptive refers to an area of the brain, rather than the symptoms and outcomes. Often these outcomes do not manifest just from the damage to the frontal lobes, and so the diagnostic descriptive was changed to Dysexecutive Syndrome.
Walking and Talking
For many people, once you are walking and talking medical help and support can often dwindle; depending of course if you had any specialist therapy in the first place. Many people don’t get any help at all – but everyone should – and it is available — more in a minute on this.
There is also a lot of new science and understanding, but it will be a long time before it becomes clinical practice and, in the meantime, brain injuries continue to disable functioning and peoples lives. This is not acceptable.
Lack of support and treatment
Although having said this, there is a much better general understanding of ‘plasticity’ now, and there are doctors who are aware that medical treatments and therapies can help even years after the initial insult. It is worth speaking to your doctor about being referred to a neuropsychiatrist before embarking on any self-help programmes – including the methods offered on this site.
Many people struggle with medical costs and issues with insurance companies, and this is very much part of the reason this site exists.
You may be invisible to the rest of the world, but this doesn’t mean that you are not understood and have to go without helpful information and support.
The most important thing to recognise is that every brain injury is unique. Having said this, the way people describe the consequences of brain injury can be very similar – whatever the cause.
Most people now recognise that what is happening to them may not be happening in the same way to someone else, but might be being experienced in similar ways. These shared experiences enable profound understanding and empathy – amongst everyone affected.
Outcomes ripple out
One of the biggest causes of misunderstanding between people living with the outcomes of brain injury and their families and friends is due to the lack of information given at the outset. Many families are torn apart by the ensuing stress caused in relationships.
Also, a lot of people don’t realise how much information there is, and yet, when found, it often still doesn’t get to the real crux of the matter because a lot of this data is given as fact, rather than from insightful experience making it difficult to apply any knowledge to everyday experiences and living.
Even when families find helpful information they can still struggle with sharing this – especially when a loved one is in denial or now lacks the self-awareness to be able to understand anything about the effects brain injury have had on them.
One of the reasons for this, is language. It is almost as though there needs to be a ‘brain injury dictionary’ giving descriptors of the words people are using to try and describe how they are feeling. Language can also stand in the way of people being able to make associations.
For example, someone may say that they feel overwhelmed, however, what they are really feeling has very little similarity to those experiences a non-brain injured person would feel.
For someone living with a brain injury feelings of being overwhelmed are very often entirely persistent and pervasive in every waking moment. Feeling overwhelmed is usually transient for uninjured people. Their cognitive skills kick in, and these quickly start to organise incoming information into manageable pieces.
These processes no longer work the same following a brain injury and often the skills of filtering incoming information, being able to break this down, process and understand it, can take a long time to rebuild.
It is precisely these kinds of functions, that once lost, may never completely return to what we would understand as ‘normal’ functionality. Even when someone is aware of their deficits, this doesn’t mean they can do anything about it. Knowing that a skill has been lost doesn’t mean that you can include its use; it doesn’t work this way. You have to rewire, and this takes a lot of dedication, stamina, and repetition.
For family members, being told that there may be difficulties with communication isn’t always enough. Many want to understand the facts so that they can understand, avoid frustration, and be able to support and help the people they love.
When understanding the consequences of brain injury, there are many other serious outcomes, some of which can result in coma, vegetative state or severe physical disability. These more severe consequences of brain injury are not addressed on this site, but we may write articles about the information we find.