Rewiring The Brain (Part 2)

My name is Tom; I am 26 years old and the survivor of an acquired brain injury. On the last post, I spent time stressing the importance of setting goals throughout an ABI recovery. Whether those are simple, short term goals or a more long term, complex goal, they both play an important role in building confidence within us (the patients), it allows you (the carer) to be able to see tangible progress and gives us both the incentive to keep going in what is an adverse situation. Finally, perhaps most importantly, stimulating the brain contributes significantly to establishing and building new pathways to avoid the old damaged ones that don’t work so well anymore, and improving cognitive functions. I believe that there were some things that perhaps I didn’t cover as well as I could have when talking about rewiring the brain, in particular, specific examples of what I did to aid the rewiring process. So I will dive into this a little deeper today.

Assess The Situation

In the last post, I’m unsure whether I made it clear, the idea of goal setting is important, however it should not be undertaken immediately upon the patients return. There is a period of time where both carer and patient should spend time assessing their position, what are your targets? What do you want? What do you need? These questions need to be asked and answers firmly established, between both parties, before any goals are set. Both patient and carer need to be on the same wavelength to ensure they are both working towards the same thing. If there is a miscommunication as to what the desired outcome is, it only has the potential to cause problems in your relationship.

The concept of taking your time for things to happen is something I worked out early. In my opinion, the sooner people directly involved in situations regarding head injuries grasp this concept the smoother things will go. Time is not necessarily the enemy either. When the patient arrives home, I believe that a period of time, allowing them to test their strength (in terms of their brain power: what they can/can’t do, where they struggle, what is still strong, what causes them distress) are all key things to learn when you are aiding an ABI recovery.

It becomes even more important to emphasise the importance of taking time in the recovery process when you deeply consider the idea of brain cells and synapses repairing themselves. I’ve tried to think of an appropriate analogy and this is the best I could come up with; think of an old battered road that has been damaged. So the local council decides to build a new road, a bypass so that the battered road doesn’t have to be used. Building that bypass will take time, effort and resources. As is the case when aiming your anger at public services, it doesn’t matter how angry you get, how much you complain or how much of inconvenience it is, it will only get done in its own time and all the complaining in the world wont make a difference. The repair process of cells multiplying and attaching to the right places and making the right connections is a long and tiresome process (believe me!), you can shout and scream at the process but it wont proceed any faster as a result. Everyone is entitled to moments of despair, anger self-loathing and self pity, I’ve certainly had those moments, but it can get better. You just have to be persistent, patient and determined.

Play to Strengths and Weaknesses

All of the above information is intended to help you tailor a recovery to the patients needs. This was the method our family used: learn my strengths and weaknesses and tailor the recovery to them. This section of today’s upload will give you a few for-instances that have significantly contributed to progress in my recovery. Once you know what causes a patient distress, you can avoid situations that directly involve that cause. An example from my experience; I suffered greatly from anxiety when it came to crowds, and loud noises. As a result my parents did all they could to avoid this environment when I was out with them.

Learning this kind of information will allow you to tailor a patient’s environment, activities and daily routine in a way that will ultimately benefit them. In particular, identifying activities where a patient is strong and tailoring the recovery around those strengths can ultimately help them rewire their brain and strengthen the aspects where they are not strong, build these new roads. An example for you; when I left to go to university, even after a year of trying, I was still having a great deal of trouble with reading. While I recognized the words that were on the page, the problem I was having was with the thinking that was required in imagining the pictures that the words created, so in essence, using my brain for two simultaneous activities. The way that I overcame this obstacle was by reading comic books. A friend of mine gave me a copy of Watchmen (by Alan Moore). Being presented with a visual representation of the characters and only having to deal with dialogue in speech bubbles allowed me to strengthen, not necessarily my reading ability in the strictest sense, but strengthened my brain in the way a body builder lifts weights in a gym. As time went on, I regained my ability to read (and also obtained a love for the medium of comic books and graphic novels).

I also would say that the success I had in further education was partly down to attending a course that suited my situation regarding my cognitive abilities. My degree course was 100% coursework based with no exams. Following the improvement I had seen in my reading after the discovery of comic books, reading and writing weren’t too much of a problem. It was committing things to memory that was (and still is) a problem. The course I did, was all essays or creative work which, again, allowed me to work my brain; build up some strength again and endurance. By the time I progressed into the second year of my course, my brain had been tested significantly and strengthened by those tests.

If there Is one thing I would take from my own experiences regarding the rewiring of the brain, it would be that the brain is a muscle, use it! I realise that this is something of a cliché but it is the best I could come up with. The more you work the brain, at the same time ensuring you do not neglect the essentials such as plenty of rest, good diet and exercise, the stronger you physically, and the brain cognitively, will get over time. It was only when I went back for the second year of university (something that had to be very thoroughly discussed and assessed to see if it was a sensible thing for me at the time) could I say that I felt as though things were improving for me, and that about two years. It does take time, but ambitions are achievable and progress can be made.

Thank you for reading. Please follow me on WordPress to keep up to date with my blog work. Also for anyone wanting to, I am on Twitter and accessible on there, my name is @ABIblogger, and I do my best to respond to those who make the effort to get in touch. Thanks again for reading, keep going and stay strong!

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Rewiring The Brain…

My name is Tom, I am 26 years old and I am the survivor of an Acquired Brain Injury.

The last update, as well as the next few, will be devoted to the importance of having a strategy, a game plan, and things to aim at throughout an ABI recovery. Having targets to aim for, throughout the time I was sidelined by my injury only increased my determination that I was not going to allow the injury to define my future. Even if the targets do not seem that big, the little victories should not be underestimated. Those little wins give us encouragement and hope and give us the determination to carry on fighting what is a very difficult battle to have to fight, day-in day-out.

Start Small

As I said in my introduction, little wins are important. After a brain injury, we as patients are coming to terms with a new sense of self; there are things that do not work the same way anymore, things we can no longer do, things we don’t understand the same way anymore to name just a few. These huge changes in the way a mind works can, and trust me I’ve been there, be devastating to ones confidence and self esteem. You start to believe that you are stupid and that the changes are the effect of something you have done wrong, a mistake you have made. The worst thing that could happen to an ABI patient is for them to just give up on themselves and on life in general.

The key to avoiding this would be to slowly build their confidence again. Attempt small achievable tasks that can be worked towards. The saying “Rome wasn’t built in a day” could not be more relevant here. While certain pathways have no doubt been damaged or even destroyed by the injury, the brain is an incredible thing; it attempts to create new pathways to try and counter the damage that has been done (according to what I have been told anyway). In a metaphorical sense, over the years that follow an ABI, the brain will be in a process of attempting to rewire itself, so it can be used to its maximum capacity. A good example based on my experience was an issue with balance. Shortly after leaving hospital, it became clear that maintaining my balance while walking was clearly something I was having trouble with. So this became one of my first challenges: make sure I can get around the house properly. So not long after leaving hospital, the only way I could get up and down the stairs in my house was for my Dad to be stood in front of me, with me holding onto his shoulders to keep my balance. As time went on, we went a step further with me holding onto the bannister with one hand while my Dad supported me around the waist. Then, after that, it was for me to walk down the stairs holding onto both of the bannisters, with my dad a step beneath me, ready to catch me if I fell (hopefully). I then had to go down the stairs just using one bannister, with my dad still below me ready to catch me (even more hopefully!). Finally, It was time to attempt walking down the stairs unsupported, with my family waiting at the bottom (expecting me to crash and burn, no doubt).

I didn’t crash and burn though. It had taken me a month to get to the stage where I only had to use the bannister. I know that the process was very slow, but when I finally achieved my goal, walking up and down the stairs unaided (and without having to take ten minutes to process the method) the feeling of it was fantastic. I was so proud to have achieved, what any normal person would’ve called, an easy feat. It was those kind of moments and expanding on those little victories that allowed me to build up the confidence to think up an overall game plan, a long-term goal.

Keep A Long Term Goal In Mind

This is the difficulty of recovering from an ABI. You can never stay static. Or at least, that’s what we found. Maybe I should rephrase that, it’s INADVISABLE to stay static. Each day, we found that there was a way for me to be stimulated in some way; whether that was simply by watching a film and trying to follow the plot and character lines, or by trying to do something as simple as boil an egg and make a cup of tea for breakfast. All of these things were contributing to rewiring those damaged pathways I spoke about in the first section.

However, what I found throughout my recovery was that it was also important to have an, overall, larger goal, something that those little victories were moving towards. The reason I believe that this part of the recovery (laying out a long term goal) was key, was because it made those little victories all the more significant because they were moving towards something bigger, it gave those little victories all the more importance, and finally it gave me a hugely increased incentive to achieve those little victories.

My goal, was a very large one, to be deemed fit by my neurologist to go to university (what I was due to be doing anyway if it hadn’t been for the bloody injury!). I realise that this goal may not be suitable for all of you reading this, however it purely depends on the situation. It requires some serious assessment of both what the patient wants and needs and finding an appropriate target that will meet those requirements. The key is finding the balance to make the target achievable. I dread to think what my state of mind and my moral would’ve been had my doctor told me that I could not go to university. That is the danger you are faced with when selecting that long-term target: if the result is failure, it will be hugely demoralizing to the patient. I cannot tell you anything else because it would be a lie and my aim in this blog is to give you the uncensored truth of life after an ABI, and this is one of those truths.

If, however, you can find the right target and the patient achieves it, the positives and benefits can be overwhelming. When I went to university, it made my brain work as I had to live independently (cook my own meals, get to class on time, wash my clothes), as well as this it stimulated my brain from an academic standpoint, improved my social skills and improved my mental stamina. In my opinion, my brain was forced to rewire itself quicker due to an adapt or perish type mentality I had to adopt. Had I not been able to attend university, my life would have gone down a drastically different route.

(N.B. A massive thank you to Southampton Solent University and in particular, Access Solent. Access Solent provided me with all the support required for disabled students to succeed in terms of accommodation, note-takers, recording equipment, and regular academic mentoring sessions to ensure I was on task, as well as counseling sessions to help me with my emotional problems while I attended. So to say I did it on my own would be lie, without my family and Access Solent I would not have achieved any of the things I did. There are people out there who want to help you. It is merely a case of doing your research, approaching the right people and not taking no for an answer!)

Thanks for reading! I hope you have either enjoyed this chapter of my story or gained something constructive from it. If you want to hear more of my story then follow me here on WordPress or I am also available on Twitter, my handle is @ABIblogger. Thanks everyone and keep going!

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!

Coming Home…

So I was coming to the end of my hospital stay and had been deemed fit to come home. That is the thing with acquired brain injuries, for most people who leave hospital; it means they are fit to go back to everyday life. However, I had been discharged and was still coming to terms with the after effects of my injury. While physically, I was fit to leave in the most basic of senses (e.g. I could walk, talk, make a cup of tea etc.), my rehabilitation in terms of my mental condition; the sadness, the anger bubbling below the surface, the depression and feeling of isolation, I was no where near ready to come home.

Discharged From Hospital Post ABI

When last we met, I had been discharged from the rehabilitation ward, gym membership in hand and perfectly able to use a pelican crossing. My tea and toast making ability had been thoroughly tested and established. In basic terms, my essential skills for living, or existing might be a better term, had been seen as adequate. I’m sorry if this post has started off in an angry tone, it’s just difficult some days when you’re truly unsure of your place in this world. On occasions, it can feel as though the whole world is against you. I have spent the last few days contemplating my situation and have found it hard not to get angry. I am in a position right now where my twenty-sixth birthday is exactly a week away and I am living with my mum and dad, unable to get and hold down a job due to the problems that the ABI has left me with, and unable to access any support from a government that seems determined to put vulnerable people over a barrel, but anyway, enough of me feeling sorry for myself.

One of the things I cannot emphasise enough to anyone reading this is how important the home environment is for a patient coming out of hospital after suffering an acquired brain injury. Having had a brain injury, in hindsight my experience tells me that, in the early stages I was extremely resistant to accepting the limitations that had been placed on me. Truth be told, I have only come to terms with those limitations recently (my rant in the opening paragraph would suggest that I still have trouble accepting them), and my injury was more than six years ago. The patient will be slowly coming to terms with monumental changes to who they are, the way that they function, and as I said before a series of limitations that have been imposed on them. In this time of transition (which will take a long time), it is vital that a patient is in an environment that they are comfortable in, familiar with, which is quiet, and in an ideal world, has company. All of those aspects are vital, but if I could stress one above the others, it would be familiarity.

Life post ABI is strange, as it will depend entirely on what mood a patient is in on that particular day. I remember that I would yearn for company, then later that same day, craves solitude. Quietness kind of comes with the company part, but in my opinion, stimuli for an ABI patient certainly shouldn’t exceed conversation with a couple of people. From my experiences, going to busy places with big crowds and lots of noise is not advisable: it will only cause distress to the patient. Comfort of course goes with the territory, when they are at home, if you as a carer can manage it, the patient should want for nothing. Familiarity was something that was not a variable. After I suffered the ABI, I liked things a certain way, I liked things to be kept in certain places, and I liked consistency. This is still something that persists today. I have to have things a certain way or it throws me through a loop. If I can give advice to any carers out there it would be to ensure you avoid chaos, especially in the home environment, even in the smallest ways. Be sure you are consistent and reliable in what you say and do.

Chaos At Home

Chaos at home just after my release from hospital was almost unavoidable. It was unfortunate that my injury happened at a time of great upheaval for my family. As I have said in previous posts, my parents were in the process of moving house when I was admitted to Southampton Hospital. They had to manage the process of balancing moving house with seeing me and caring for me at hospital. God knows how they managed it. Needless to say, the moving process suffered greatly. Some boxes were never unpacked throughout the entire tenancy. At the time of moving, boxes were thrown willy-nilly into the house and garage until my situation became clearer. My parents have said that the moving process was something of a haze and they just put things where there was space for them to go if you understand my meaning. The problem with this was that there was absolutely no order around the house, which I struggled with.

The only room that was in any semblance of order was my new bedroom. My collection of films was unpacked, a TV and DVD player setup, books on a bookshelf, clothes in the wardrobe and chest of draws and so on. I was released from hospital in early November, just as winter was setting in. The heating was on full in my room, the only room in the house where this luxury could be afforded. My bedroom became something of a sanctuary for me. My films kept me company in what was a very lonely time for me. Again, as I stated earlier, my mother had to go to work everyday to keep the money coming in and my father was forced to get a new job having been rejected for carer’s allowance. This meant I spent the bulk of the day on my own in a new place (not that I could leave the house anyway).

Such was the extent of the relocation though, that transport for the friends from the town where I had previously been living was infrequent and expensive. Even when it got to a point where I could leave the house I was still isolated, as I didn’t know any of the people in the street, as was the case in my old community. I felt extremely alone. The evenings were pleasant enough when my parents came home but the days were extremely difficult. This feeling of isolation was a big contributor to the feelings of loneliness and depression I suffered from as the recovery progressed. That is a story for another day though.

On the next post I will be discussing the period of settling in at home and some of the approaches, in terms of the philosophy we took, on the road to recovery.

Thanks again for reading my journey. The feedback I have received in terms of comments on WordPress and on Twitter has been fantastic. Please, I invite you to post some comments with any feedback and constructive criticism as to how I can improve the blog. I would love it if, between us, we can really raise awareness on the subject of brain injuries and create a constructive community/dialogue. My Twitter handle is @ABIblogger. Please follow me and get in touch if you have any comments, questions or constructive criticisms. If you are following me on twitter, be sure to tweet/retweet and share the link to the blog so we can get the word out on brain injury awareness. Thanks again and things can get better!

It’s All Coming Back To Me…

My name is Tom and I am the survivor of an ABI. When we last left off, I was still recovering from PTA (Post-traumatic Amnesia). It was difficult to provide much material on this subject (for obvious reasons) but I did my best and I hope, with some help from my parents, I have managed to provide some useful information on this subject and what it can be like. I also hope that those who read my last post will not underestimate the importance of having reliable and trustworthy advocates to act on the patient’s behalf while they are still in a comatose state or a state of PTA.

Snatches of Memory

There isn’t much that I can really remember properly until I had my second surgery. There is only one memory I have that I can truly remember, so let me share it with you.

I remember waking up and feeling extremely warm and comfortable. The room around me was totally unfamiliar. It had the same sterile, plain feel of a hospital room, but it felt like mine. There were pictures of my cats pinned to the wall with their names written underneath. The day of the week and time of day was written in large felt tip pen on some A3 pieces of paper. Pictures of me and my friends, my brother and sister (all labeled of course) were also adorning the walls.

I looked around me, bracing myself for the news that I had suffered another seizure (epilepsy being pre-existing condition for me, my diagnosis coming at the age of six). My mental state had all the marks of being post-seizure. I was exhausted, I had a headache, and my thought process seemed slower. But again, something was different. My entire family seemed to be here for this, including my aunt and cousins who lived in Stoke-on-Trent, a 400 mile round trip for them. Surely, a run of the mill seizure was not important enough for them to be concerned with?

Even after the PTA had gone, I was totally baffled by the fact that somebody would do that. Why would someone do that to me (ego or what?)??? It was extremely difficult to process that I could bring out that kind of anger or hatred in someone. I seemed to be really hurt, from an emotional point of view, that a person could do this to me and in some way, I seemed to be trying to take the responsibility for it, as though I had deserved what had happened to me.

For a while though, my brain seemed to reject even the idea of an attack. It would differ from one day to another, one day when asked why I was in hospital I would answer correctly: that somebody had attacked me. On others though, I would say that I had had a fit.

The Second Op

Oddly enough, it was only when I had the second operation, the one to replace the skull flap that had been removed in the first op, that my memory really saw resurgence. I am not sure if these two things are linked but that is just how I remember it. I had returned to Southampton for the second surgery. I remember vivid things about staying in Southampton the second time. I remember that there was a man on my ward who would not shut up! He just kept pressing the call button and shouting for the nurse. I remember my brother sneaking me in a burger king meal not long after my surgery to cheer up me up after the hospital food. I remember how bad the hospital food was!

My second stay in Southampton Hospital was fairly uneventful. I did some basic exercise in terms of getting up and walking about. I remember having to wear those legging type things to help with circulation because you spent so much time lying down. I also remember chatting (though I cant recall the conversation) to an incredible man who had been injured on military service in Iraq I think it was. Things didn’t really start to get interesting again until I was discharged from Southampton and sent to a more local hospital for a “rehabilitation” program.

Now before I start this paragraph, I just want to say that I think the NHS in the UK is absolutely incredible. The people, who work for it, in any capacity, are incredible. However, where I live, in Dorset, a low crime, very middle class area, the head injury services are fairly underfunded as they are not very commonly used. As a result of that, the quality suffers. I went to a Dorset hospital for three weeks after being in Southampton. I did some very basic physiotherapy, I went to meetings with other patients who had suffered head injuries where we did things like make toast and cups of tea, and I did some tests on basic cognitive skills. Before I was discharged, they remembered they had not done a road safety test with me yet. This went as far as to take me outside to a pelican crossing to see if I could use it. As I could, this was deemed sufficient.

When I left the hospital, any continuing support was extremely inflexible or not very effective. Having been bed ridden for nine weeks, my physical condition was handled by a weekly physiotherapy appointment, and a free gym membership. I saw an occupational therapist once a week (who, to be fair on the second one, I formed a good relationship with. But the first one came round with odd one out picture puzzles for me to do and just drank all our tea!). My father was rejected when he applied for caregiver’s allowance, as I was not deemed to be in a severe enough condition.

So to any caregivers, parents, or anyone else out there, allow me to give you some advice: be prepared for a battle. Nobody, especially now, in the current political climate, is going to give you anything. The system is against you at this point in time. It will be an uphill struggle from now on. I’m sorry; I know that is not what you wanted to hear. When I was going through this, it was before the welfare state had been cut to the bone but you need to know the score. It’s going to be a fight for everything you can get from here on out.

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Brain Injury In The Family – The Importance Of An Advocate

My name is Tom and I am the survivor of an ABI. During this post I will try to cover as much information as I can. If I were to include every scrap of information it would be a post written by my parents as during the first three to four weeks I was suffering from Post-traumatic Amnesia (PTA) having just come out of my medically induced come after my Intra-cranial Pressure had levelled out.

I can remember very little of my stay in hospital, until I had the part of my skull replaced in the second surgery (I’m not sure if this is coincidence or whether there is a medical reason as to why this is the case). But through my parents, the scrapbook made by my family and friends, medical notes and other research, I have done my best to piece together a narrative of what happened in the month that followed the coma.

Family & Advocacy

On that note actually, comes my first piece of advice for the carers or family members out there. I cannot impress on you enough, the importance of somebody being there for a patient to act on his or her behalf. I was in a position where I needed 24/7 care round the clock. Now, with the best will in the world that is not really possible at any hospital outside of Intensive Care. All patients deserve the same standard of care and to achieve that, it is necessary to spend an equal and appropriate amount of time with each patient. This was all the more difficult for doctors and nurses due to the difficulties I was having after waking up from the coma: the effects PTA was having on me, and just the general nature of head injuries: I was confused, distressed, and occasionally angry. Even with a large staff it would’ve been nearly impossible. Then again, there was one hospital that I was in that had suffered from big staffing and budget cuts due to poor financial management, this is not the staff’s fault, it just meant that there were not enough staff in that hospital which increased the likelihood for a mistake or a lack of care.

For example, because of the after effects I was suffering from, I could not remember whether I had been fed (never mind what I had), whether I had been washed, and making choices was extremely difficult for me. So choosing a meal was incredibly difficult. So someone being there to help me with those things was very important. My mum always made sure that I had something different to eat each day and that I ate as much as I could.

It is also important when someone has had a brain injury to give them an insight into what you, as a carer, were going through and how much everyone cares. My advice to you would be, when someone you know is in a coma or has suffered a brain injury, start a scrapbook as close to the beginning of it as you possibly can. The scrapbook that was created for me included messages from family and friends, newspaper clippings (as I was on the front page of the local newspaper), and most importantly day-by-day written updates of my progress and what was happening around me by family members. This was important for me as it allowed me to then have some window into what that period was like for my loved ones. It was a period of time that is seared into the memory of my family: hearing constant bad news, seeing a loved one in danger, emotions constantly at the surface. While I was physically there, I was not mentally, if you see what I mean. I was not aware of anything going on around me. It is a period of time that will never be forgotten for them that was centred on me that I have no recollection of. It was amazing to find out information like how bad I was, the medical procedures I went through, how much of a big deal it all was in my hometown, and most importantly how many people loved me and had come to visit me.

From One Hospital To Another

I spent different amounts of time in different hospitals for different reasons. All of them tried their best, however there were experiences our family had that were pretty terrible. For example in one of the hospitals we stayed at, when I needed that round the clock care, it just wasn’t feasible. There was an instance where I was not provided with the right bed with rails on both sides. Due to this I fell out of bed. This perhaps, is less of an issue when the patient does not have a brain injury, let alone half of his skull removed, but then at the same hospital I also contracted a case of bacterial meningitis due to my bandages not being changed regularly enough. My father, who had been staying with me to help with the constant care, spotted the meningitis. It took him reporting the problem for doctors and nurses to sit up and take notice. So this just goes to show how important the role you play as carer can be, not just in terms of speaking for the patient but also in terms of monitoring things that may not be quite right in terms of patient care.

If, as I was, you are put on a ward where there is no specialist head injury nursing available, then staff are doing their best in a difficult situation. They are doing the best they can without any specialist knowledge and probably have another thirty patients to deal with as well as you. Your carer has only got you to think about and can listen really carefully to the advice your head injury consultant is giving, and then can implement those things (for example, for me, an instruction was not to have more than fifteen minutes of stimulus and when I had those fifteen minutes they had to be followed by at least an hours rest so that my brain could recover, another was wearing a helmet when I could get out of bed). These are most often things that, as I said previously, the regular nursing staff will not even have time to think about and it took my parents’ presence to ensure that those rules were strictly enforced.

I have to say, once more, that the NHS is incredible and I would not be here without them. However, there was certainly a lack of continuity in the care due to the switching of shifts and the use of agency staff, it was one person after another without the required knowledge of my situation or of brain injuries as a whole.

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!