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.

 

Advertisements

Post-ABI – Returning To Work (Part 1)

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. In my previous post I mentioned the potential positive effects returning to the “mainstream” could have for people who have suffered a brain injury. This post will look at how to approach returning to mainstream employment. Last time I spoke at length on the positive effects higher education had to me and what I hope was some helpful advice on choosing the right course and accessing the support you, as a disabled student, would be entitled to. This time I hope to do the same regarding a return to work.

How Will It Help?

Returning to work can seem like a daunting prospect when you have suffered an ABI like we have. You are coming to terms with a new sense of self; there are things that you cannot do any more (perhaps cognitively, physically or both), there are issues with regards to your physical and mental health (such as fatigue, anxiety and depression). Those are issues that we face everyday (to name just a few), but I believe that a return to work can help improve most of those issues. Working a steady job, supporting ourselves and increasing our independence, grows our confidence and sense of fulfillment. This in turn plays a massive part in contributing to a positive mentality where we do not feel defined by our injury or inferior to other employees.

Looking At Yourself & Being Honest

Nobody knows you better than you. That’s a fact. It is a fact I believe to be especially important post-ABI. After a certain amount of time, you will start to become more aware of what it is you may or may not be able to do anymore. You will start to see where it is you are having difficulties. Equally, it will allow you to see where you are still strong. You may not be able to see it yet if you are still coming off the back of the injury, but you do still have strengths and abilities that make you valuable. Taking notes of these strengths and weaknesses will be crucial in terms of when you are finally ready to return to work, in applying for a suitable job for you in the long-term.

Having a positive mindset and at the same time, having a firm acceptance of your disabilities and sense of who you are key when thinking of returning to work are massive contributory factors in terms of potential success. When it gets to a point of looking for jobs, it is much better to look at the job listings asking yourself “What can I do?” as opposed to looking for what you can’t do.

Again, Start Small

I realize that this has been something of a recurring theme in many of my posts but I am a firm believer in it. When returning to work it is certainly best not to jump in with both feet. Starting out small is key to this. I believe a good way to gauge your ability to work is through voluntary employment. Offer your services to a local charity shop, or work with the head injury charities available in your area (Headway UK offer local support groups for returning to employment and there are other disability employment organisations that can help you find appropriate voluntary work, follow the link to access their website –www.headway.org.uk) . The benefits of voluntary work are that it offers a flexible working schedule and environment. This flexibility will allow you to assess yourself while you are being challenged. Again, you can look at where you are perhaps stronger or weaker; try to think of strategies that help you cope with certain situation where you struggle and how to increase your involvement in situations where you are strong. If all is going well and you would like to test your strength a little more, you can ask for more hours or more shifts while at the same time, if you are finding that the work is too demanding, you will be able to reduce hours and shifts accordingly. The positives of this is that it allows you to assess your strengths and weaknesses in the working environment in a situation of less pressure and also, if you do well, get a nice reference off the back of it.

The Support Is Out There

There are many different types of support available for people who suffered a brain injury from many different sectors. There are specific rehabilitation services, such as some of the vocational rehabilitation services that offer courses to teach new skills to those adjusting to life post-ABI. Acquiring a new skill could be just the tonic you are looking for if you are, as I was and many others are, at something of a loss as to which route you should go down. There are many vocational services offered by local branches of the NHS and accessing them should be relatively simple through your specialist.

Other potential benefits that can be gained by accessing the services of the NHS are things like appointments with occupational therapists. Getting involved in those kind of services can really help you to focus in on what it is you want to do as well as bringing potential programmes that could benefit you to your attention. I believe that just because we are the victims of a brain injury we should not be stuck in a job we hate for the rest of our lives. We should be able to gain employment that we are enthusiastic about and that gives us fulfillment (P.S. In terms of accessing the kind of support I have mentioned above – occupational therapy and vocational rehabilitation – a good place to look is in the service directory under the resources tab, on the UK Acquired Brain Injury Forum, just follow the link to their website – http://ukabif.org.uk).

There are also the Disability Employment Advisors (DEA’s) at the local Jobcentre Plus who can help you to shift through the many job opportunities out there to find something suitable for you and your specific situation. The Jobcentre Plus also offers specific programmes for disabled people who are trying to go back to work as well as information on potential welfare eligibility. Many of the Jobcentre’s effectiveness and their ability to help you will be dependent on the amount of funding they receive. I would urge you to go into it with an open mind and explore all the options that they have available (PS. Follow the link to a useful Jobcentre Plus guide – http://www.jobcentreguide.org).

In Conclusion…

It is only now I have completed this post that I have realized there is so much more I can say on this subject. So I have decided to elaborate on this subject on Monday as I think there is a lot to be said regarding the ABI in the working environment, so this one has ended up being something of a two-parter. Thanks everyone for reading and I hope it was of benefit. To find out more about my blog follow me here on WordPress @ABIBlogger or follow me on Twitter @ABIblogger (yes the lower case ‘b’ is intentional). Thanks again and be well.

Socialisation & Engagement (Part 1)

My name is Tom, I am 26 years old and I am the survivor of an Acquired Brain Injury. So far, I have focussed heavily on the mentality and approach we took as a family throughout our never ending pilgrimage towards recovery from an Acquired Brain Injury. My intentions in the previous posts (“Rewiring The Brain”, and “Rewiring The Brain (Part 2)”) were to stress the importance of both giving the patient some time to assess themselves and ascertain where the damage has been done, and allowing them to realise for themselves what strengths and weaknesses they have. What I was hoping to stress, was the importance of the assessment of cognitive function, of thought patterns, the way that the brain works (or perhaps doesn’t work anymore), and identifying where problems occurr. The next few posts will focus on the importance our lifestyle; the things we consume, our sleep pattern, our social activities and conduct etc. and how social pressure and expectation can put pressure on patients that may adversely affect their recovery progress. 

Today, I’m going to examine the first of three topics that, once you have established what a patient is and isn’t capable of and the level of stimulus the patient can handle, will inevitably affect the way that a patient socialises. The first topic will be talking about the physical and cognitive limitations that are placed on us; the second, from a health and well being point of view and the importance of maintaining the discipline of a healthy lifestyle, finally, having taken into consideration the previous two factors, when (as I did) a patient may (or feel it necessary to) reassess what it is they like to do, what they don’t like to do, and what they are able to do for fun. Once again I feel that the aspect of socialization and engagement is particularly important, so I will be splitting the topic into three separate posts to give each one the focus it deserves.

(N.B. Within these two topics, social science will also have a contribution to make. Unfortunate as it is, the association’s people make with disabled people (I consider myself a disabled person, so please forgive me if I have offended anyone) are still extremely negative, and I would be surprised if, as a carer you do not see prejudice in some form or another towards the loved one who is suffering post-ABI. If, like me, you’re a patient reading this, don’t be surprised if when the drama dies down, you find out you have a lot fewer true friends than you thought, friends who really care about you that is. I do not say this to be unkind, I just do not want other people to be in the same situation I was when I finally came to my senses and was hurt and depressed about it).

Physical Limitations

There are plenty of potential physical ramifications and disabilities that can emerge from an Acquired Brain Injury. The brain controls all of our physical capabilities and any damage to a particular section of the brain can have devastating effects to our body. I count myself incredibly lucky, after the injury I had, that I am still able to walk around, hold a conversation, and do most of the things that I could do before.

The most affected part of my body/brain was actually in terms of my senses; smell, taste, hearing and sight, four of the five senses were drastically affected. I am permanently deaf in my left ear (the only thing I can hear is the permanent tinnitus I also acquired), I lost my sense of smell (only particularly strong smell such as vinegar, or cleansers and cleaners tend to get through. Though, I occasionally get lucky enough to smell my parents cooking which has become something of a treat on the occasions it gets through), for two or three years I was without a sense of taste, and finally, I spent about three years with a residual squint and severe diplopia in my left eye (diplopia meaning my left eye and its line of sight was not synchronized with the line of sight in my right eye creating an effect of severe double vision). As I say, I consider myself relatively lucky to escape with just this. Although, due to the extent of the injury to my inner ear, combined with the diplopia walking around and maintaining my balance was difficult for me. It was only really after a surgery to repair the diplopia in my left eye that the issue with my balance started to improve to any great extent. However, I still cannot stand on one leg for more than a matter of seconds.

For a long time, the issues with my sight and balance meant that when leaving the house I had to be accompanied by an adult, normally linking arms with them, to ensure that I didn’t fall over. I was also required to wear an eye patch to rectify my double vision. These things, as well as my surgery scars, contributed to me being singled out from the crowd of “normal” people that was the general public and was certainly affecting my confidence and self esteem.

Cognitive Limitations

The cognitive limitations I had, and still have to live with, were far more in abundance. As I have said previously, discussion with more than one or two people, for more than a small amount of time was difficult for me to handle. Crowded places caused problems (and still do to some extent), as did physical contact (personal space is something that I have issues with, both in terms of people being too close to me, as well as me invading other peoples space). In terms of thought processes, multi tasking, processing chaotic situations, judging propriety of what I am saying, and general decision-making are issues as well.

I realized this fairly recently, before you have a brain injury you have a tendency to take your brain, and the incredible things it does, for granted. The limitations that have now been placed on me make it extremely difficult for me to find and keep work, establish and maintain relationships, to follow through on things, my moods are erratic, and  I cannot seem to maintain a degree of calm in my life so that I do not suffer from stress and anxiety. None of these issues were present before my brain injury. Or perhaps, to be more accurate, those issues were all there, they were just kept at bay by a fully functioning brain with fully functioning pathways.

I will tell you to what extent these factors have affected my life at this current point in time, as it shows the difficulty people recovering from a brain injury have in attempting to regain some normality in their lives. After all, us ABI patients do not want to be defined entirely by our health situation; we are human beings too. We have the same desires, ambitions, needs (emotional and physical), and wants as any other person. Emotional fulfilment is something that has a lot to do with the kind of people you surround yourself with and engage with regularly.

However, the process of socializing with other people (Whom? Where? When? What?) is influenced by so many factors, but has a tendency to be influenced most heavily by the group of people that hold the position of majority within that social group. For example, whoever holds the numerical majority in terms of the gender, say if there are more boys than girls, the activity will most likely be something, at a location, more boy friendly than girl friendly, if you see what I mean. Most of the factors than contribute to deciding a social activity tend to be things such as gender, common interest, convenient location, all relevant issues that can be fairly easily compromised on. With something such as an Acquired Brain Injury, there are certain things that, maybe, can’t be compromised on.The task of mixing with people my own age was made all the more difficult by the impropriety of the social activities people would want to do that weren’t suitable for me: going out for a drink (I had been told by doctors that I shouldn’t drink for at least a year), playing football (contact sports were most definitely out, for me), it meant that the possibility of interacting with people of the same age, who had similar interests, was extremely limited.

I found that with something as out of left field, as intangible, as misunderstood, as a head injury, it is more convenient for the majority to cast aside the minority. So instead of finding activities me and my friends could all do, I generally stopped getting the invite or found myself choosing not to go. Finding young people, my age, with my interests, who wanted to accommodate my situation just so that they could spend time with me, were few and far between. Where much of socialising is done in large groups amongst young people, it made it almost impossible for me to go out and mix with my peers.

I implore you to stay with me on this subject over the next few posts here, because I really hope to be able to put the life of an ABI patient in stark contrast to the life of a “normal” (for lack of a more appropriate word, that is not to say that people with brain injuries are abnormal) person. I will hopefully be able to give people who engage regularly with an ABI patient some perspective as to what it is like to live that life. I also believe that those whose lives centre on an ABI patient will soon come to realise what I am talking about, if they haven’t already. Please come back again to read on Monday, or better yet follow my blog on WordPress and follow me on Twitter. My Twitter handle is @ABIblogger and get in touch. I more than welcome constructive criticism and am looking to try and get some good discussion going, hearing from other people and what they have experienced. Hope to hear from you soon!