Our Approach…

My name is Tom, I am 25 years old and I am the survivor of an Acquired Brain Injury. Getting settled in at home is an important part of leaving hospital after suffering a brain injury. As I said in the last post, comfort, consistency in the environment the patient is in plays a vital part to any recovery attempt that is being made. However, there are different approaches to the recovery and each different approach has its own positives and negatives. I am going to talk through some of the approaches I went through in the hope you will see what could be gained from it.

The “Military” Approach

I will start off by talking about what it was we chose to avoid. After a brain injury, a patient will most likely be suffering from impaired cognitive function. There are different ways to approach this and one of those ways is to have repetitive, regimented, practice over and over, until those cognitive functions return to (not full which is nearly impossible after a severe brain injury) an improved capacity.

After my parents did some research, we chose to avoid the strict, regimented, routine. They found that many of the patients suffered greatly both in terms of their self-confidence: due to a continued attempt to do something that they simply could not do any more. It is bad enough to realise that you can not do certain things you used to be able to do perfectly well, but it must be even worse to be forced to attempt that thing over and over again even though you can’t do it. It must bring so much anger, sadness, frustration, not to mention resentment towards those that are trying to impose this “military-esque” (for lack of a better term) approach to trying to do something almost impossible: return a patient to the same state they were in pre-brain injury.

The second aspect where the regimented routine could cause difficulties was simply in the dynamic between carer and patient. Now this is definitely linked to the first issue and to comments I have made in earlier posts. It is crucial to maintain a good relationship between patient and carer. If the patient is under pressure and being forced to attempt things that are simply beyond them, they will begin to think that there is something they are doing wrong. It is essential that in the approach to the recovery, the carer should not necessarily understand (understanding a brain injury is pretty much impossible unless you have been through it) but empathise with the patient. It is critical that you do not make them feel as though it their fault, that you are angry or frustrated with them. For any carers out there, positive reinforcement and attempting to instill confidence in the patient as they approach, even, what may seem like a fairly routine activity is important to building up confidence so that they can move on to more ambitious tasks further down the road of recovery.

What We Did: Our ABI Recovery Approach

There were certain things that I had to do in my recovery for very specific and important reasons. I had to keep up with basic mental exercises (i.e. Sudoku puzzles, word searches, cross words, spot the difference etc.) to try and improve my cognitive function. I also had to do physical exercise as well, however I was slightly limited in this, as I had always enjoyed contact sports, which were then impossible due to my fragile skull (they are not impossible now but still have an element of risk to them). One of the things I really did do was eat. I ate a lot. I had lost 4 Stone (64 lb.’s) while in hospital so I needed to put some weight back on to make me a touch healthier.

These were certain things that I had to adhere to. However my parents had been doing their research on how to approach this kind of thing, we decided to go in the opposite direction of the type of the recovery mentioned on the first page of this entry. We decided to use a method of very basic routine. Times I got up, times I ate meals, times I would walk into town were all relatively routine and at specific times of the day. It was my spare time that was for me to decide. It was basically a way for me to use my spare time in a way that benefitted me most at that time, on that day. If I needed to sleep, I would sleep. If I needed a snack, I would have a snack. If I wanted to get out of the house, I would go out.

Having spoken to my parents about this though, I cannot truthfully tell you that this was some ingenious or innovative approach to tackling the aftermath of an ABI. It seems to me as though this approach was both as a result of not really being given that much information from Brain Injury Services where we lived, meaning we were left in the dark somewhat. I also have heard her say that this liberal approach to my recovery was something of an attempt to deny the truth. My mum has said to me that she thought when I came home from hospital everything would, after a while, go back to normal. To try and keep things going as normal seems to have been an attempt to deny the truth its inevitable victory. I think that there is, especially around where I live, a lack of support and assessment for carers (and brain injury services as a whole if you ask me!). I cannot say what those services are like in other areas of the country but here, we were somewhat left in the dark, to figure it out ourselves. I would be very surprised if it is not a similar case all over the country due to the enigmatic nature of ABI’s. It seems you can never really tell what will be permanent and what won’t, what will improve and what won’t, if you will be able to do certain things again or whether you won’t. So it may be that in approaching an ABI recovery for any carers out there, you may be left to fend for yourselves and figure out what is best for the patient. This can obviously work out well in some ways as you know the patient better than a doctor or a psychologist. It is about finding the balance; knowing when the doctor is telling you something that is very important that must be done, and even then, if there is a way you can approach that task that will ultimately suit the patient better than the way a doctor has suggested then try it your way as well. You need to be willing to think outside the box to get the best possible results for the patient.

If I were to be asked, “what is the best approach to a full recovery?” I would have to say that my answer would be that there is no full recovery, that’s how I would start anyway. What I would go on to say is that the path towards recovery is dependent on the individual; their strengths, weaknesses, likes, dislikes, their mental toughness and determination all play a significant part. The best approach would be to try and tailor the recovery towards the patient and what works for them. But one of the key aspects I would say to any carers out there would be to use your common sense and try to empathise with the patient as much as possible. Put yourself in the patients shoes, think of what they have lost, what they are coming to terms with, and what it would be like for your brain to be working fine one day, and then at ½ speed the next. The best advice I can give to any people looking after an ABI patient out there is to put yourself in their shoes and remember everything that happens along the way. Treat any difficulties or mistakes as a learning experience, not as a failure. Learn, adapt and adjust for the benefit of the patient.

If you want to follow me on here and leave some feedback that would be great as I welcome any constructive criticism. Also, if you want to get in touch and hear about upcoming posts, follow me on my Twitter handle @ABIblogger or follow me on WordPress to get email updates on a new post. Thanks everyone! Please share/retweet/read and whatever else you can do to raise brain injury awareness!

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Coming out of the Induced Coma, Post-traumatic Amnesia and the immediate aftermath of an ABI…

My Name is Tom and I am the survivor of an ABI. I have covered all the basic medical, science type stuff that will hopefully provide you some with knowledge as to why I suffered from the after effects that I did. You will hopefully notice a change in the tone of my writing as I am no longer repeating facts I have found out from a book, my medical notes or the www, I am speaking from the heart. What I aim to do now is get on with telling you my story and about my experiences, in other words the more useful stuff.

Anyway, where were we? Right, I had come out of surgery; I was hanging on to life by my fingernails and had been placed in an induced coma to allow my brain time to rest following the injury. A section of my skull had been removed to reduce my high level of ICP and was being carefully stored beneath the skin of my stomach to ensure it had the blood supply it required to stay alive. My family was in bits (just as much as my skull was) and nobody knew what was going to happen next.

I had been in the coma for only a few days with my ICP dropping steadily over that period until it stabilized. Doctor’s were astounded at how quickly this was happening. A patient coming in to the hospital with the injuries I had suffered, with a Glasgow Coma Scale score of 3 and recovering at this speed was unprecedented. Such was the rapidity of my recovery that they attempted to bring me out of the coma on the fifth day. However, a severe case of projectile vomiting during this attempt discouraged them. The risk of me choking on the vomit was too great, apparently (not because they were afraid of getting covered in sick). So I was sedated and sent back to my local hospital in Dorset within a few days.

Here, the attempts to bring me round would continue. My mother says how much of a struggle the whole thing was. I did not know what was happening or where I was. I was confused and distressed at the situation. I would thrash around as they tried to wake me up, I was pulling out tubes and pipes, and lashing out (I even pulled out my catheter the second time they tried to bring me round. For anyone that doesn’t know, a catheter is the pipe that goes up your urethra so you can pee!). It was about ten days after I had been put in the coma that I finally was brought out of it. I was awake! I was Awake but I was certainly not myself. I’ve been told I could recognize people and occasionally acknowledge their presence, but I was aware of little to nothing that was going on around me.

The truth was that I was suffering from Post-traumatic Amnesia. PTA is a state of disorientation and confusion that occurs after a massive head trauma that causes a patient to forget events that have happened after the injury. If I were to say anything to the families of people with PTA, it is that it will pass. From our experience as a family, we found that the presence of people that the patient knows and recognised was helpful, as was the presence of memory cues posted on the walls of my room (telling me basic information such as where I was, time of day, days of the week etc.). Honestly, from our experience, the sound of a parent’s voice and their presence was invaluable. It may not be medical fact that we are working from, but it can only do a patient good to hear a voice of comfort when they are in such a distressing situation, surely? It’s difficult to put into words,I think this part is somewhere between human instinct, in the way the patient recognises the voice of a parent, a partner, or sibling, and empathising  with the patient. Wouldn’t you want people there for you, in that situation, talking to you and telling you it would be ok?

The reality is, with PTA, that after a head injury, the short-term memory in the brain is not being processed into long-term memory. Think of it this way, if I may give a simple example. You have your lunch, say a cheese sandwich, normally this will go into the short term memory before being processed and placed in the appropriate drawer of the filing cabinet to be retrieved and looked at a few hours later. In the case of PTA, the piece of information is not being transferred from the short -term memory to the long-term memory; hence it cannot be retrieved and looked at later on. To help with this process my parents had pictures, written memory cues and so on, posted all over my room.

During this stage, the only advice I can really give anyone is to be there as much as possible, to talk to the patient and give gentle reminders while being patient. It’s perhaps better also if the carer or family can perform the memory tests on the patient (which is essentially the patient being presented with sheets of pictures or to countdown from twenty backwards). The reason I say this, is that a carer or family member who is around the patient for long periods of time is more likely to spot periods of time where doing the test is best for the patient (when they aren’t tired, when they haven’t just woken up etc.) as opposed to when it is better for the doctors/nurses. What we found, essentially, is that the presence of family or carers is so important!

The last of the pseudo-science…

My Name is Tom and I am the survivor of an ABI.

In the last post, I covered the injuries to the brain that I suffered (as I understand them in layman’s terms). In this post, I will be looking at the different sections of the brain, what they do (again, as I understand it), and that will lead us on to the next few weeks where I will discuss the problems I had when waking from my induced coma. Trust me, I am doing my best to get away from the medical stuff, the neurology, and move quickly on to my experiences and the real meat of this blog.

From the research I did through my medical notes, it seems that most of the damage was done to the temporal lobe, the occipital lobe, and some minor damage to the frontal lobes (and I’m sure other places suffered some minor damage due to the midline shift/increased ICP). Now, finding out the function of the different parts (or lobes) of the brain has been interesting to me as it has allowed me to put the after effects I still suffer from in some kind of context. I had done little to no research prior to this blog on what effect the damage to different parts of my brain has had on me. It is much easier to not address it: to live in denial of something is a lot easier than accepting it and taking steps to address and overcome it. After all, it is only really in the last year to eighteen months where I have started to truly accept my ABI and what it has done to me.

Now, the different lobes of the brain and what they do. This is how I understand it and the picture below should give some clarity on the locations of the different lobes.

Colour coded and labelled picture indicating the different lobes of the human brain.
Colour coded and labelled picture indicating the different lobes of the human brain.

The main section of the brain is called the cerebrum and provides the tools for thinking that we use in every day life. It is divided into right and left hemispheres: The left hemisphere is responsible for the logical side of thinking, numbers, words, lists, logic, sequence, linearity etc. and controls the right side of your body. Whereas the right hemisphere controls the left side of your body and is responsible for the more creative endeavors such as rhythm, spatial awareness, colour, imagination and daydreaming. The cerebrum is then split into four different lobes, each of which has a different function.

  1. The Frontal Lobe – The frontal lobe controls so many different aspects of what we do and what our brain does. To include just a few, it controls creative thought, problem solving, intellect, judgement, behaviour, attention, physical reactions, muscle movements, smell and personality.
  2. The Parietal Lobe – The Parietal Lobe mainly focuses on comprehension, monitoring things such as language, reading, visual functions, internal stimuli and sensory comprehension. It is also home to the Sensory Cortex and the Motor Cortex. The Sensory Cortex receives information from the spinal cord regarding the position of our many body parts and how we are moving those body parts. The Motor Cortex helps to check and control the movement of the body.
  3. The Temporal Lobe – The Temporal Lobe controls our visual and audio memories. Located here are sections that help us with speech and language as well as hearing. It also has an effect on some of our behavioural factors. The Temporal Lobe also houses Wernicke’s Area. Little is known about this area by even the best doctors but it is known to help us formulate/understand speech.
  4. The Occipital Lobe – located at the back of the head, it helps to control vision. The Occipital Lobe also houses Broca’s Area, the area of the brain that controls the facial neurons as well as our understanding of speech and language.

So theses are the four main lobes of the brain. I promise you, that that should be that on the science jargon. But I felt it to be important to include some of the scientific/neurology stuff as it places my future experiences in a proper context. So I hope to see you here again. Would love it if I could get a few more followers on Twitter (follow me @ABIblogger) and maybe follow my blog while you’re here. I assure you I am doing this with the main aim of helping people. Any feedback I can get would be amazing! Thank you so much everyone. Stay strong!

The Injury…

The Injury…

My name is Tom and I am the survivor of an ABI.

(N.B. I am hoping that the above gallery will help with understanding some of the injuries I suffered.)

To start off with, I think the most important thing will be to cover the injury I suffered. I am trying to explain what happened in layman’s terms so it is easy to understand for you readers. I’m not sure I fully understand it myself but I have done my best. At the end of this post I am hoping that you will have a basic understanding of the injury I suffered.

On the 30th of August 2009, I was admitted to Southampton Hospital having been assaulted on a night out with friends. The night out had been to celebrate my acceptance into university, it was something of a last hurrah with my friends from my home town, a small town in Dorset in the south of England. At the end of the night, while waiting for friends outside of a take-away restaurant, two men confronted me. After a verbal altercation with one of them, the other punched me in the head, knocking me out before I hit the ground. My head smashed into the pavement with such force that it caused multiple fractures to my skull and internal damage to my brain.

I was admitted to the hospital as a 3 on the Glasgow Coma Scale, more or less the worst you can be. I had suffered a comminuted fracture of the occipital bone, a longitudinal fracture of the left petrous bone, a subdural haematoma, extensive subarachnoid blood in the basal cisterns, bilateral frontal contusions, and inferior temporal lobe contusions. These injuries also meant that my intracranial pressure (ICP) was extremely high.

This may seem like a lot of medical jargon to you (to me too, really), but I have done some research that has helped me to understand, in very basic terms, what these injuries mean.

  1. Intracranial pressure – Bleeding and swelling of the brain, causing it to push against the cranium from the inside. This puts pressure on the brain itself and damages it from within.
  2. Comminuted fracture of the occipital bone – A comminuted fracture is essentially the result of a massive impact to the skull, causing the bones to be forced inwards. These fractures are most commonly associated with assaults: the use of weapons, blunt objects, kicks to the head etc.
  3. A longitudinal fracture of the left petrous bone – The petrous bone supports the temple as well as housing the bones and vessels required for hearing. A longitudinal fracture is one where “the vertical axis of the fracture parallels the petrous ridge” (I have to say, I am not sure what this means. I will do my best to update this info so it is easier to understand).
  4. A Subdural Haematoma – Bleeding on the surface of the brain caused by the bursting of small blood vessels that bridge the subdural space, the space created by the abnormal separation of the Dura mater and the arachnoid mater. This is likely to lead to an increase in ICP.
  5. Subarachnoid blood in the basal cisterns – Bleeding into the wide gap between the two temporal lobes.
  6. Bilateral frontal contusions – This is essentially severe bruising to the frontal lobes of my brain. The force of when I hit the pavement caused the brain to rattle around inside my skull.
  7. Inferior temporal lobe contusions – Severe bruising to the inferior temporal lobe due to the way my brain moved about inside my skull at the point of impact.
  8. Midline shift – Midline shift is a shift of the brain past its centre line. Presence of a midline shift is an indicator of high ICP.

Upon arrival at Southampton hospital and the diagnosis of my injuries, my family were told to expect the worst as I was rushed into surgery where a craniectomy was performed: a procedure where a section of the skull is removed and placed under the surface of the skin in my stomach (as the skull requires the presence of blood or it shrivels and dies), to allow the brain to swell and subsequently reduce the intracranial pressure. A procedure was also performed to remove the shards of skull caused by the comminuted fracture of the occipital bone.

After the surgery, my family was informed it had been as successful as it could be given the circumstances. The doctor told them I would be placed in an induced coma to allow my brain to rest, and the waiting began.

(Please follow my progress with my ABI awareness by following me on Twitter, located on my profile but for anyone my user name is @ABIblogger)