Brain Injury Recovery – Gradual Gains

The last two weeks I have focused on specific aspects of brain injury recovery and rehabilitation. My last two posts blog posts looking at Health and Independent Living and why they are significant to me and what you, me, all of us with ABI’s, need to consider when approaching those targets.

When I finished my last post on the importance of a good foundation of health, having the conditions we suffer from as a consequence of our injuries under control and as manageable as possible that a thought occurred to me. By putting these posts back to back, one following directly after the other, have I inadvertently sent a message out, that these targets and goals we all have, each individual to us depending on the extent of our injuries and our ambitions in life, should be addressed simultaneously.

This was a thought that I was suddenly worried by. The thing that I cannot stress enough is that each target we have on our list should be addressed slowly and patiently, worked towards with an attitude of gradual gains.

What Are Gradual Gains?

Gradual gains are a method of improving certain aspect of a person’s body. It is an old technique that has been used in sports fitness. It is a fairly simple premise of trying to make small improvements on certain aspects of the body that one knows to need improvement.

If I may give an example, say you are a cyclist trying to improve your fitness. The way to do this is not to do it in a short length of time with highly ambitious goals, saying to your self “I’m going to ride an extra thirty minutes on my bike today.” Something, which will potentially damage your muscles, cause fatigue and soreness, which will then takes a few days to recover from. The best way to obtain lasting improvement is to do the opposite, not to seek ambitious goals from the off. The final destination can be ambitious; in fact I think it should be, as I believe that we are all capable of achieving great things. For the cyclist though what should be the approach to gain long-term improvement is to say you are going to cycle for an extra two minutes and do that for a week. The following week he says I will do an extra three minutes, and do that for a week. The basic idea is to do a tiny but more each time for a week or so, where you don’t feel the difference in terms of the demands it places on you or the consequences when you’ve completed the task. I think the way that we approach our attempts at improvement should be through a series of small improvements over a long period of time.

How I used Gradual Gains In My Recovery (Physical)

This time, I will give an example that is more directly related to ABI patients and how this can work in our favour. When I left hospital and was discharged into my mum and dad’s care, I had been bed ridden for nearly 3 months. I was skin and bone, my muscle mass seemed to have evaporated and I could barely stand, let alone walk. Literally, as soon as I arrived home I was straight through the door and up to my bed where a room specifically for me with a TV and DVD player had been set up where I could sleep and eat and watch TV. That was predominantly what I did for the first few weeks of having arrived home. When I needed to go to the bathroom or have a shower, I would be escorted/supported to the bathroom by my dad, who would wait outside the bathroom until all I was all finished, then he would escort me back to my room.

After a month or so of this, having gained weight and put some muscle back on through the small amount of walking I had been doing pottering around the house, we decided to increase the amount of physical exercise I was doing. So now, each morning I would walk to the bottom of the garden and back and do the same again in the afternoon. Then as things such as balance, muscle mass and confidence improved we could start walking on the pavement up to the bus stop and back. So it continued. It took about six months until I was confident enough to walk to the bus stop, get the bus to town with my mum to have a cup of tea and then come back again.

How I Used Gradual Gains (Cognitive)

The technique that I have used and the example I gave regarded the improvement of my own physical condition. It must be stated though that the exercise can work in a cognitive sense as well (so long as you are rested enough post ABI).

Just as a quick example, if you find yourself getting to a point where you want to start reading again, start reading a simple book, large font, not hugely challenging or stimulating. Using that book start reading say, five pages a day (or another a manageable amount where you don’t feel as though you could sleep for twenty four hours after). Read five pages a day for two weeks. After those two weeks increase the amount of pages you are to read by one or two pages to six or seven pages a day, and do that for two weeks. Continue this process over a period of weeks. But the point is you can take your time with it and not over stimulate yourself. If you feel that the daily target is too much then decrease the amount you are attempting.

This did work for me but it took a long time. It was only when I went to university, around twelve to eighteen months after my ABI that I started this process. Reading had become a necessity, it had really started to become easier due to the fact that I was using this process and had started reading comics & graphic novels as well. So progress is slow with this method but I do believe that it prevents us from overworking ourselves. The fatigue we feel after we have done too much and gained excessive cognitive stimulation is the same as a cyclist that has sore mussels after a particularly long ride; he has tried too much, too fast and his body wasn’t ready.

So, What Is It That I’m Saying?

What I’m saying is, that if you take the two examples I gave, the cyclist and the ABI patient, they are two vastly different examples of people with different aims and ambitions. The point I am trying to make is more regarding the time span of which they intend to achieve their goals. I have said many times in my blog and I’m sure that countless doctors and consultants have told you that the recovery process from an ABI takes time. This was my main fear that was based on the last two posts; I didn’t want anyone reading this to feel as though I was encouraging them to take on too much at the same time. In fact, right now, I want to emphasize the opposite.

Take your time with all the goals you aim for and I would advise, based on my own experiences, to take on one challenge at a time, seeking small improvements over a long period. That way we stop ourselves becoming overwhelmed by fatigue or other issues that may crop up (my epilepsy is a good example there). We need to make sure one thing is secure and under our control before we move on to the next thing. ABI recovery is a step-by-step process, a marathon, not a sprint.

 

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Never Change Who You Are…

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. After suffering a brain injury it is inevitable that your life will be changed. When I say this I am talking about changes perhaps in your cognitive ability, in certain physical abilities or in the way that you look at life.

The one thing you should ensure never changes, is who you are as a person. After I suffered my injury I found that the majority of my desires, passions and drives remained similar to what they were before it. Six years later, I am still working towards achieving the goals that I set myself post-ABI and slowly but surely, I am starting to get there. With persistence and determination, and just as importantly, by staying true to yourself I firmly believe you can achieve anything you set your mind to. With that statement in mind I will also share with you some of the things I have learned as I have made progress.

Nobody Knows You Better Than You

This is one of the key things you must continue to tell yourself. Off the back of a brain injury there will be plenty of people who think they know you better than you know yourself. They will think they know what you want, what is best for you both in the short term and the long-term, and in some cases they may even place a glass ceiling above you. What I mean by that final point is that often due to the issues that we struggle with as a result of our injuries, people seem to have placed limitations upon what we can achieve. A maximum expectancy, if you will. This is one of the things that I have struggled to cope with since my injury, the lack of belief people seem to have, peoples assumption that I deem it appropriate merely to “settle”.

I will give an example if I may. I am currently, as I have mentioned in previous posts, living at home with my parents. This is purely due to a combination of my epilepsy and the effects of my brain injury, which make it not only impossible but also dangerous for me to live on my own. The lack of independent living is not from a lack of trying. I have worked Jobs before, as well as living independently both in London as well as in my hometown in Dorset. After I came home from the year in London and I got settled in my new flat in Dorset I returned to the job I had been working before I moved, working as a waiter. A month or so after my return, I had an appointment with my neurologist to assess my progress. It was at this meeting when he suggested that perhaps it was time to stick to the waiting job and see how things went.

The point I’m trying to make with this example is that purely because you’re struggling with things, it does not mean you have to settle for life that you’re unhappy with all that is beneath the expectations you set for yourself. You know what you are passionate about, you know what you want today and most importantly you are aware of your own abilities and how far those abilities can take you. Nobody knows these things better than you so do not allow anybody to presume that they do. That goes for friends, family and doctors. While their advice is important and most likely well informed, they cannot possibly know what is going on inside your head.

Don’t Just Consider The Here & Now

The terrible circumstances of suffering a brain injury certainly dictate some of what we do in here and now. Unfortunately, that is inevitable. Not only do we live with the physical and mental consequences of the injury that causes problems each and every day, but also it can force us into circumstances that we did not foresee.

If, at the age of 18, somebody had asked me where I would be when I got to the age of 26, I certainly would not have said living at home with my parents in a cramped two bedroom house. However, these are the circumstances that I am in. The only way to overcome the challenges that we face and improve our circumstances, is to persevere: to get up each and every day and carry on. It took me along time to come to terms with this fact; that any progress I was going to make was going to be gradual. If you can accept these things and, as I have said in previous post, even embrace them with a positive mindset, you can go along way to insuring that what you see as a negative circumstance right now, will not affect who you are and can even be turned into a positive circumstance further down the road.

The other approach to enduring the negative circumstance is to allow anger, self-pity, and frustration to take hold of your entire being. The result of this, and I speak from experience here, is that you fall down into a dark hole of despair. For some people there is no coming back from this. So focus your energy on remaining positive and trying to look for the good things in your circumstances, because they are there and the more you focus on the positives (i.e. what you do have as opposed to what you don’t have) the less chance there is for the negative thoughts to take hold and take you to place you can’t get back from.

Things Will Get Better

It is one of the things that are really difficult to deal with on the road back from a brain injury: that progress is slow. What the above post has been trying to say, is that we always need to stay calm and think clearly. While it is in the human nature to seek instantaneous results, that is almost an impossibility with something like an ABI. To be more specific, the point I’m trying to make is that throughout the recovery you should always try, as best you can at least, to stay true to who you are. I do not believe that a brain injury dictates every facet of your life. Nor do I believe that it changes every aspect of your personality. I consider myself a person who is that different now, than the person I was before the brain injury (perhaps a little more mature and a little less naïve). You certainly should not give up on the things that make you an individual and I firmly believe you should continue with trying to achieve similar goals to the ones you had before your injury. Because the truth is, you can!

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.

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