Merry Christmas to You All!

It's been a long while sine my last post. Obviously, I've been suffering something like the problem I described in it, Brain Lock.

There is more coming, though. My recovery certainly isn't over, yet, and I continue to find out things I'd like to share with you. Perhaps it's a sign that things are going well, though - I lack time to properly write.

Anyway, I will get around to it. In the mean time, I wish my readers a great Christmas and a happy New Year. To all those recovering from brain injury, whatever '08 was like, I wish you a much improved '09!

Seasons Greetings,
Mike

Brain Lock

I've had another issue that has occasionally cropped up since my TBI. I get something in my head and set about doing it... no matter what! Indeed, I discussed one occurence of it in Mike's Regrets; almost getting another TBI by trying to body-surf dumping waves at a surf beach I went to.

Quite suddenly, I become much less aware of any factors indicating that what I'm doing isn't the best approach. Something else happens, something new crops up, but I just seem to ignore it. It's as if my brain isn't flexible enough to cope with the changing situation. It doesn't happen that often - normally my brain operates more or less as it used to. When it does happen, though, I describe it as brain lock.

For me, brain lock is almost as if I simply forget to think about other stuff. I become focused on the task at hand; on doing (or saying or being) whatever it was I had intended to do. And I seem to ignore everything else, no matter how relevant.

As I've written before on this blog, I can be very determined about stuff when I want to be, but this is different. When I'm being determined about something, I do my best to take in all relevant aspects of ths situation. When I've got brain lock, it's as if I'm simply ignoring everything else. Brain lock seems a great way of describing my problem.

I have yet to come up with a full-proof way of dealing with my episodes of brain lock. I hope that it will be at least a little easier if I'm aware that sometimes I do it. As I get more experienced with the new me, I hope that I'll become better at knowing when I might get brain lock.

I don't know if every TBI recoverer suffers from brain lock, but suspect it might be quite common. Whether it is or isn't, though, I write about it here to give readers a better idea of the sorts of problems they might face. I do believe nearly every TBI problem can be solved, or at least substantially helped, with a bit of careful, thorough thinking and problem solving. I hope this one isn't any different.

Cheers,
Mike

P.S. I've now added a post about Managing Brain Lock

Another Approach to Therapy - Learning to Sing

I've always had a loud, deep voice, but it's become noticeably more raspy since my accident. I've also lost some control over my volume and pitch. Speech language therapy I had early on seemed to give me little relief. Part of that (perhaps a large part!) was that I found the exercises difficult to keep doing because I had trouble applying them in practice.

I'd been conscious my voice still needed work, though, and eventually I came across another way. I've started singing lessons. My singing instructor certainly doesn't have a speech therapy background. She was quite surprised when I explained my plans and hopes with my learning to sing, but we started lessons anyway.

I noticed an immediate improvement in the quality of my voice and I feel there is big potential for further progress. Singing allows me to practice using my full vocal range. As well as that, by it's very nature, singing well involves a much greater need for control over one's voice (compared to speaking). Perhaps because of the way our brains are wired, it's easier to hear when I'm not singing well compared to when I'm not speaking well. So it's easier to feel like I'm making progress.

I don't propose that learning to sing will work for everyone. Instead, I write about this here to discuss the value of thinking outside the box to help TBI recovery. Think about what it is you want to achieve. How have you been working on it so far and how has that been going? What other things, what completely new approaches, might help you out?

Cheers,
Mike

Keeping At It!

In the post, Breaking the 40 Hour Week Barrier, I showed an Excel graph of my return to a 40 hour week. I guess I'm fairly unusual and not everyone wants to get back to work as badly as me. Whatever your goal is, though, the message is, pay close attention to the progress you're making towards it.

I've often described how TBI recovery takes time! Sometimes it seems so slow, it's extraordinarily frustrating. I've learnt, though, if I pay close attention to what I'm working towards, I might well find I'm still making progress. It might not be happening fast, but, if I keep a record, I can see it's still happening.

Whatever my goal is, even when it's something funny, like talking properly again, I do my best to figure out a way to measure my progress towards it. There's no need to make some fancy graph, just to find some way to measure my progress. For example. to work on my voice, I might well try recording my voice at various points in time and, particularly when I'm feeling down, go back to earlier recordings to listen to my progress.

So I feel better if progress is being made. If no progress is happening, I still don't feel bad. I just think about new approaches. What else could I be doing to improve? Keeping track of my progress is a great way to keep my motivation up, to keep pushing forward.

Cheers,
Mike

P.S. For those interested in my experiences working on my voice, please have a read of my post, Another Approach to Therapy - Learning to Sing.

Tranquilo

I know a bit of Spanish and one of my favourite words is, tranquilo, which basically means, calm or be calm. I've always been someone who tends to get a little wound up at times, so, as I go about life, I regularly need to remember, tranquilo. Here, though, I want to write about how I think the word's also good for my recovery.

A brain injury often means the brain won't work well. As well as that, it often won't work well in surprising ways; in ways you wouldn't expect. One of the ways my brain, post-injury, doesn't work so well (and I suspect this is quite common) is that it won't quite follow what's happening in social situations fast enough.

Often, I find myself thinking, why did he say that, what will it mean if he does that, or, I'm not even sure what he's talking about. I've come to realise, though, the need for tranquilo; the need to remain calm, to stop and think through what's going on; to wait until things become clearer. Before I realised that need, I would quickly interrupt a situation to clarify what was being said. Then I'd be a little embarassed when that was obvious to everyone else in the room.

If, like me, you're quite an active person, it is a real issue not being active, waiting for clarification to come rather naturally than asking for it, directly. I've found that (not for the first time :-) TBI recovery does require a whole new approach, though: the approach of being tranquilo.

Cheers,
Mike

Making Steps Manageable

In my post, Small Steps, I described how a close friend and I regularly talk about breaking our recoveries into small steps; each step building on the last, but none building too far. In the post, Mike's World Tour, I described how I took a month-long trip from New Zealand to South East Asia to see how capable I was to travel. I did this before taking a year long world trip while I waited for my brain injury fatigue to reduce enough for me to work better.

My friend and I have an ongoing debate about whether this month long trip was a small step. I admit that, from the outside, it looks a fairly massive thing to take on. Yet I still argue strongly that it was a small step. I do so because it was very manageable.

It was manageable because I had a reasonably clear idea of what the difficult areas would be for me: coping with fatigue, coping with lots of very unusual situations. It is true that, although I had a clear idea of what the problems might be, I didn't know how big they might be. But, if my "small step" had gone badly, it wouldn't have been the end of the world. I was on a tour and could have holed up in my tour bus and hotel rooms and got through any big problems. In addition, I was lucky enough to have members of my family along with me to help me out if any one situation went wrong. In the end, though, my "small step" went well and I got enough confidance to embark on my longer trip.

I guess, to me at least, that's the true definition of a small step, It's small because I've made it manageable. I know the issues will likely be and, if things go wrong, it won't be the end of the world.

Cheers,
Mike

Small Steps

I have a close friend who's also a recoverer. She's recovering from various issues related to depression. That sort of recovery is no less is a long road than a recovery from TBI. As we go through our recoveries, one thing her and I often talk about is the need to break recovery into small steps; each step builds on the one before, but none builds too far!

We both think about where we'd like to end up and then break that goal into a series of small steps to get us there. Each step is taken with a very clear structure in mind if things go wrong. When you're taking small steps, it doesn't matter so much if you have to take a step back down.

Of the many things I've become able to do using small steps, probably the best demonstration of it is my return to full-time work. My goal was always to work full-time as a competition economist and my Occupational Therapist helped me break this into small steps. I took on a support role, doing a few hours a week of background work supporting other competition economists. I gradually built up my hours and the pressure I faced until, finally, I was once again working fulltime as a competition economist. As the graph in this post shows, it wasn't a fast process, but I did, in the end, get there.

In many ways, my slow progression just happened naturally. I would handle one bit of work ok and then accept a little bit more. I initially found stress difficult to handle, but, by increasing is slowly and with supports in place should I find any one bit too much, I gradually became accustomed to it.

Having a process in place to gradually become accustomed to things is key. Nothing should be rushed! Everything should be in small steps!

Cheers,
Mike

P.S. I've written another post on this topic, Making Steps Manageable.

Unsympathetic Reactions to Brain Injury

In the post, Sympathetic Reactions to Brain Injury, I described how peoples' reactions to the effects of a brain injury commonly fall into two groups. That post discussed the first and this one the second.

Not all comments that fall into the unsympathetic group are negative. Often, people are just going about their business, see something unusual and comment on it. Assuming I was already drunk (instead, I was well fatigued), a nightclub doorman once stopped me from entering his bar and said, "how many drinks have you had tonight?"

I admit, though, that more negative comments are sometimes made. I once was told (in no uncertain terms) that I shouldn't be using disabled carparking spaces because, to the speaker's eye, I looked completely healthy. I've heard about other recoverers who, for instance, have been berated for not filling out forms at the library quickly and correctly.

It is a strange fact of the human pysche that, for many recoverers (me included), even the more negative comments can be significantly less annoying than the sympathetic comments that I 've described. No matter how negative, though, unsympathetic comments get made because everyday people don't come across brain injury very often at all. They're just not aware of why my brain mightn't work quite right. It's easier for them to just think I'm a bit slow or a bit stupid.

If people react unsympathetically, I think it's pointless blaming them. Instead, I need to think about what I can say to make them see there's more to it than meets the eye. To the nightclub doorman, I can say, "Actually, it's not that I'm drunk, just that I had a bad accident a few years ago and my balance isn't so good now." To the library receptionist, I might say, "Forgive me, but filling in forms isn't one of my strengths. Can you help me out?"

Some have labelled unsympathetic comments with the much maligned word, discrimination. That seems silly to me as I can have so much influence over how people react to stuff about me. Why blames others without first thinking about what I can do to help?

Cheers,
Mike

Sympathetic Reactions to Brain Injury

Commonly, when people unused to brain injury see the effects of a TBI, their reactions fall in to one of two groups: sympathetic and unsympathetic. This post discusses the first group while (somewhat obviously) the post, Unsympathetic Reactions to Brain Injury, discusses the second.

Ok, sympathetic responses. Other recoverers out there will know what I'm talking about; things like: "You think your memory's bad, you should see mine and I don't even have your excuse of a brain injury!" or "Don't worry about it. I'm always forgetting peoples' names, too." Because of all my fatigue problems following my TBI, this one's my personal favourite: "You're tired? Yeah, I found that day/night/event really tiring, too!"

Such things have been said to me by some of the nicest, most kind-hearted people I know. Yet, at times, I've struggled not to find them incredibly condescending and very annoying. How could such kind things possibly be taken that way? Your brain injury could well be the hardest thing you've ever dealt with (mine is and, hopefully, always will be). The problems mine caused were unlike anything I'd come across before.

They were so different and so hard to deal with, it felt like no one could possibly claim to know what it was like. Comments implying otherwise seemed utterly ludicrous. How could any normal person understand how difficult this is? How can they try to make me feel better when they've got no idea what it's like?

My instant reaction was to grit my teeth and take the statement badly. What I needed was to relax! The person saying it certainly doesn't mean it to cause such anger. They are trying to make it a bit easier, to make the recoverer feel better about their troubles. Most important of all, they say it because they're being sympathetic and they're trying to their best to understand. Of good friends or anyone else, it's difficult to ask for more than that.

I realised this early on, but it still required effort to make myself relax when such things were said. Upon hearing them, I had to remember to think first, what does the speaker understand about brain injury, and then, second, how do they intend I take what they've just said. Making that a habit made it a lot easier to deal with overly-sympathetic reactions.

Cheers,
Mike

Escaping TBI Escapism

In the post, TBI Escapism, I set out why I think Mike's World Tour wasn't about about escaping my TBI. Yet I talked about how I could understand wanting to run away from it all. How can I understand it, but not have similar desires, myself?

I guess, as you may be picking up, a big chunk of it is the sort of person I am: forever positive and upbeat. That doesn't mean, though, that I entirely avoided having escapist thoughts. When they came on, I guess I was able to focus on what I still had: a reasonable amount of health (that is, at least my accident wasn't worse!), a close and loving family and, yes, something of a life to be had; a life just waiting for me to figure out how best to live it.

I know times can be tough and the mountain looks massive for recoverers to scale. I guess it's almost a given a recoverer will have times when they'll want to run away from it. Thinking about the amount I still had helped get me through times when that feeling came on. It helped me escape TBI escapism!

Cheers,
Mike

TBI Escapism

TBI Escapism: the desire to get away from one's brain injury, to escape its effects, to have a day when things are 'back to normal' - the way they were before the accident. I have written about the concept before in the post, Wanting to Leave Care. As I said in that post, the feeling is very understandable. Departing on a holiday might seem a way to get a break, to relax, to return and feel better placed to carry on the struggle that is recovery.

Unfortunately with brain injury, though, there ain't no where to hide. Your brain is something you take with you everywhere. There isn't any way you can leave it behind, even for just a few short days.

People might well read about Mike's World Tour and wonder, was it TBI escapism that motivated me to take it. I can assure the reader that it was not. Right from the word, go, I was very conscious of the effects of my brain injury on my travel. That is what made me take a month-long trip first just to see how I got on travelling with the effects of my brain injury. While I was away, of course, I was still recovering, still learning about my new brain worked, still trying to think of ways to make it work better. In that way, Mike's World Tour was very much part of my recovery.

I think there is one main trick for others to take away from this when thinking outside the box: never let go of the brain injury. Always be aware that your brain might not work the same anymore; alternative approaches might be required. But always believe that any TBI problem can be solved, or at least substantially reduced; always believe that you can and should be determined to recover.

Cheers,
Mike

P.S. I've written a bit more on this subject in the post, Escaping TBI Escapism.

The Use of this Blog

The first thing I want to say here is, with a bit of help from a few valued friends, this blog is my donation to you! You're absolutely welcome to view it, read it and take from it what you will. I ask for neither reward nor compensation for this. Instead, I regard it as the best way for me to repay all those who have helped me along the way and, yes, there have been an incredible number of them. I think I have a lot to repay!

In spite of my motivation of goodwill, I have no wish to see my donation used in any substantial way without my approval. Feel free to pass on my messages, but, please don't republish or repackage them for consumption by others without receiving my permission, first. If you wish to get this, please email me and I should respond promptly.

If you've come to take a look at what I have to say, please feel more than welcome to read on! And make sure you tell your friends and loved ones too!

Cheers,
Mike

Mike's World Tour

As I explained in the post, Reasons for My Travel, I had become determined to travel. Yet, I was hardly in a state to throw caution to the wind and jump straight in to such a thing. So I invented Mike's World Tour.

The Tour started with a month long trip to the South East Asian countries, Cambodia and Vietnam. I had always wanted to see those places, they were reasonably close to New Zealand and a trip to them was long and difficult enough for me to work out how able I was to cope with my fatigue and other problems related to my brain injury.

Although not quite flawless, that month went extremely well. I managed to work out how to avoid getting truly fatigued and how to avoid many of the traps that can catch out tourists (particularly brain injured tourists :-). I arrived back home and immediately started planning the proper Mike's World Tour.

I had always been tempted by travel to South America and planned out a 7 month spell there before heading to the northern hemisphere to see friends and travel to Spain and Italy. I had a 12 months away, all up. Again, it wasn't quite flawless, but the trip went wonderfully well. I'll write a lot more about it shortly.

I'd been wondering what to call the post label for posts about Mike's World Tour. I decided that there is one thing I most want readers to take away from hearing about my trip. Don't accept that a TBI confines you to anything. Think outside the box!

Cheers,
Mike

Reasons for My Travel

One part of my graph in the post, Breaking the 40 Hour Week Barrier, has a period of me not working. It is marked out as Mike's World Tour and I want to better explain it here.

Picture my situation: I'd taken one hell of a knock to the head and was busy recuperating in hospital and rehabilitation. I wrote here how so many of my friends had either left or were about to leave my home country of New Zealand on international trips to "see the world". In my state, doing such a thing seemed a dream to me.

Eventually, I recovered enough to leave rehabilitation and return to part-time work. I found part-time work exceptionally frustrating: to be so close to the work I loved, but never quite able to properly get involved; to always be leaving work early; to be less of a help and more of a hindrance to the boss I respected so much.

I was fortunate to have options other than work. Savings from a previous job allowed me to think about following my friends on my own trip to "see the world". And so I came up with Mike's World Tour.

Also, I've written more about a thing that was definitely not a motivation for me to travel, TBI Escapicism.

Cheers,
Mike

Breaking the 40 Hour Week Barrier

I'll start this post with something that will be fairly obvious: I love my job! Getting myself into a position where I could properly do it has been a focus for me right from the word, go (or maybe the words, severe brain injury :-) !

And by properly doing it, I do mean full time work. The problems with fatigue caused by my brain injury meant, for a long time, all I could manage was part time work: a few hours a day. After my accident, my first week back at work was only three hours long (for the entire week!). I could never enjoy doing my job part-time the same as I had doing it full-time. So my target was always a normal week's work for economic consulting: 40 hours!

It's taken awhile, but, with care and attention (using things like neuro-resting at work), I finally achieved it, three years and a bit years after my accident. It is difficult for me to communicate here how important a milestone this was for me.

I've prepared this graph to celebrate my rise of the phoenix. It sets out the billable hours worked (that is, those hours I could charge someone else for) since my accident, combined with a few important dates around my accident.

I think it is this graph that does the best job of setting out the progress I have made coming back since my accident. I've written one more post about it, Reasons for My Travel and Mike's World Tour. I'll also write another discussing the trends in this graph.

Cheers,
Mike

The Plateau and 'Bedding Down' Gains

I introduced the idea of a plateau in a previous post, Beware the Plateau! I have two reasons for not liking the concept of a plateau: the first I discuss in the post, The Plateau and Switching Activities, and the second here.

The discussion of the Concept of a Plateau under Myth 3 of Debunking Ten Myths of Brain Injury Recovery makes a further point. It's that TBI recovery can be made up of "fits, starts, and bursts, often interspersed with periods of apparently little change, or even falling back."

My sister has spoken to me before about a 'bedding down' period that happens as the brain properly absorbs new information and starts changing behaviour. Obviously, when the brain gets injured, bedding down can take longer. Accordingly, the times of "little change" can just be times of bedding down. Further gains will happen after the ones already made are bedded down.

In my balance example, the bedding down of gains came as I slowly realised that a lack of core strength in my trunk was contributing to my poor balance. What was required to help that was sticking with exercises that improved that strength. The 'bedding down' happened as I realised one cause of my problems and then set about working on specifically on that.

The bedding down of gains makes it dangerous to write off the possibility of more changes just because changes slow down. There is nearly always more scope to recovery, there is always reason to think about how to recover!

Cheers,

Mike

The Plateau and Switching Activities

I introduced the idea of the plateau in my previous post, Beware the Plateau! I have two reasons for not liking the concept of a plateau: the first is below and the second is in the post, The Plateau and 'Bedding Down' Gains.

So things had been working out well for me in my TBI recovery. When I write about it now, it seems obvious that eventually they wouldn't go quite so well. Somehow, I convinced myself that all that was required was more effort, all I had to do was "stay the course."

So I kept at what I'd been doing. Unfortunately for me, I was caught out by the old adage, you do the same thing, you get the same results. I was trying the same old things long after they'd stopped working, as if I expected them to magically start producing results.

Belatedly, I realised one thing that might help was a new approach, a new way to try and improve my skills at whatever the activity was. Back to my balance example, an alternative way to work on my balance more was to start relearning how to juggle a soccer ball. To juggle a soccer ball, you need to stand well on one leg while using the other to kick the ball in just the right place with just the right amount of force. Your balance must improve.

Ball sports have never been a natural thing for me and, even after heaps of practice, I'm nothing special at juggling. But I am better than I was and, more importantly, my balance is better than it was.

That's consistent with the discussion of Myth 3, the Concept of a Plateau in Debunking Ten Myths of Brain Injury Recovery. It talks about how "energizing environmental events" can lead to sudden leaps forward. Trying something different, getting the brain to think in a different way can cause it to 'wake up' a little bit more!

The discussion suggests, even years later, a new, committed counsellor or more social contact can bring about enough change to break from the plateau.

Cheers,

Mike

Beware the Plateau!

My TBI recovery went on well for a long time, but eventually I felt like it was reaching a plateau. Suddenly, I started noticing improvements came more and more slowly; I felt I had less and less to look forward to; I found myself wondering how I could keep going with the daily grind of recovering.

I'm trained as an economist and I wondered if the economic concept of diminishing marginal returns had set in. You put the same amount of effort in, but you start getting less and less out.

Worrying about plateaus can relate to many aspects of TBI recovery. The one particular problem that I think best sets out the concept is my balance. My balance wasn't good right from the start of my recovery. I was very lucky not to further injury myself in a fall I had in rehabilitation while relearning how to walk. Even well after properly doing that, my balance was very poor and didn't improve much.

My poor balance eventually resulted in a fall while hiking one day that badly broke my arm, which is one of my regrets. The question was, though, was that the limit of my recovery of balance? Was I always going to have to deal with poor balance? When you're the one doing the recovering, such thoughts are scary, to say the least.

In the majority of TBI cases, the concept of a plateau is not only misleading, it can be downright dangerous. A "plateau" can be used as an excuse by TBI recoverers, by families, even by therapists and specialists to stop making an effort; to slacken off; to "take it easy", when doing so can lead to the recoverer missing out on valuable care.

I discuss two reasons why I don't like the concept of plateau in the posts, The Plateau and Switching Activities and The Plateau and 'Bedding Down' Gains.

Cheers,

Mike

Tipping the Odds in My Favour

In my post, The Full Court Press, I talked about one approach I take to TBI recovery: if I'm having difficulty understanding a particular problem, I seek out the right specialist or therapist to help me with it. That approach means that, since my recovery from Post Traumatic Amnesia, I've benefited from the help of 22 different specialists, therapists and other trained medical people.

I guess that number might seem a little overboard, but that's not something I'm at all concerned about! Instead, I think of it as one way of tipping the odds in my favour. Tipping them away from my brain injury and its effects and back towards me and my recovery.

In the post, Have Hope!, I wrote about how, early on after my accident, the odds were stacked against me. Instead of being daunted by that, I've always seen it as a reason for taking every advantage I can. Even now, over three years on since my accident, I'm continually looking for ways to do things better. I guess it's part of the determination to recover.

My being determined to recover means I never give up; I never stop believing there's one more thing I could do to help me recover. All I have to do is think of it. Think about what exactly my current problems are and what might help me with them. Think about different ways I might tackle them. You guessed, I'm thinking about how to recover!

Cheers,
Mike

Keeping My Eye On the Ball

I've written about how, with care and attention, things can slowly come right after a TBI. I'm coming to see how the need for care and attention doesn't really change, though. I've been making good progress with my fatigue and have now managed a working week of 35 hours. Yet, I still need that care and attention. I still need to keep my eye on the ball!

I tried finishing my first week of working 35 hours with a bang! I hung around after work for Friday evening social drinks. And I did so without first neuro-resting. Bad mistake!

I got tired again ... very tired! My old nemesis, long term fatigue, started setting in. That's where where my fatigue builds up and up so that it takes days for my energy levels to recover. Fortunately, I retained enough sense to call it a night about 8pm. I went home and basically collapsed into bed, quickly aware of my mistake. That rapid retreat saved me from bad long term fatigue, but my energy levels were certainly not a 100% during the rest of the weekend.

Yes, my fatigue is a lot better than it was early on, but, no, that I still need to be careful. I still need to wonder if what I'm doing is much outside my new, post-TBI constraints. I still need to keep my eye on the ball!

Cheers,
Mike

The Full Court Press

Basketball players will be familiar with this strategy: The Full Court Press! It's a variant of the double team strategy and involves man-on-man defence across the length of the court. And, just like the double team, it too can be successfully used in TBI recovery.

As I've repeatedly said, there's a massive variety of problems a TBI can cause. For TBI recovery, a Full Court Press means finding the right help from whoever is most able with any particular problem. Whenever I came across a problem, I think about how it might best be handled. Who should I talk to about it?

In the post, Stamina, I described the amount of help I'd received: I've seen eight different specialists, two general practitioners and twelve others (therapists, nurses or technicians and the like). When you include me as captain, that's almost enough for five basketball teams! And, of course, it's without any of the massive number of others who have helped me with support, ideas or even just by hearing me out.

A great way of recovering well from a TBI is to use a good team approach: The Full Court Press!

Cheers,
Mike

Having Lists of Questions

While discussing one strategy to use when seeing medical specialists, Double Team 'Em, I alluded to another: Have a list of questions for what you want to find out. An appointment with a specialist might well be a long affair covering numerous, complicated points. Obviously, it'll be easier if people have a clear idea of what needs to be discussed.

Even for a healthy person, relying on memory when finding out answers to a series of questions is an arduous task! That's particularly so when something as important as one's health is on the line. Add to that, the memory problems that often come with brain injury and you've got a recipe for suddenly remembering what you meant to ask about ... after the appointment!

Why not take ten minutes beforehand to think through what it is that needs to be covered! Doing that can save a lot of hassle and worry about forgetting things.

Cheers,
Mike

Double Team 'Em

After recently helping me see yet another medical specialist, a family friend remarked on a good strategy to use for specialists: Double team 'em! Make sure there are two people there: one to follow a line of thought, while the other thinks over what gets said.

Each answer a specialist gives may well cause a recoverer to have further questions. With a two person team, one can listen carefully and think about those answers while the other follows up a different point. This strategy will make a two person team much more effective when seeing medical specialists and working through the ramifications of what they have to say.

A two-person approach can also make up for cognitive problems bought on by a TBI recoverer's brain injury - problems like forgetfulness and lack of concentration, particularly.

The friend who suggested it is a former New Zealand diplomat, someone used to hairy negotiations. I like to think how a strategy commonly used in dignified halls of government can aid me in my recovery.

Cheers,
Mike

Talking to the Right People

In this post, I wrote about how difficult TBI recovery is. That concept implies one important thing: It's difficult to recovery well without professional, compassionate help. Medical staff might not understand everything, but they'll still understand a massive amount more than what the untrained will! Talking to them first can save endless frustration when coping with some difficult TBI recovery problem.

Since they can be of so much help, how best to use them? Simple, talk! Find the right person, talk to them and try to ask them the right questions! Have a think before you go to them: what would you like to know, what don't you understand, how best could they help?

Didn't get the answers you wanted or, just as importantly, didn't get them in the way you wanted? Remember to think, hang on, I'm the Boss! Remember how complicated TBI recovery is. That'll mean there's a massive amount of people that might be able to help you. Don't stop trying different people until you find answers you're happy with.

That's probably the most important thing to take from my process of relearning how to run. Someone as serious as a physician or even a neurologist was unlikely to help me with it. After all, I knew how to move the right muscles. The problem was moving them in the right order!

I tried two different exercise trainers who normally help healthy people with running, but neither were at all familiar with problems related to brain injury. In the end, after some encouragement from a friend, I tried talking to a physiotherapist who recommended another physiotherapist who specialised in the relevant area. Only with that, did I feel I was in competent hands that would help me with my running trouble.

Cheers,
Mike

TBI Recovery: No Walk in the Park!

Hopefully, I'm making one thing clear on this blog: Recovery from TBI is no walk in the park! It's a complicated, difficult thing to go through. As well as that, each individual case might be very different from other cases! So one person's experiences might have only so much relevance to someone else.

I can honestly say, it's scary to think of the countless ways my TBI has affected me, the countless things I've wanted to improve at, the countless times I've thought, whoops, that could have gone better! Also the stream of problems sometimes seems endless. For instance, I need to relearn how to swallow. Done that? Time to relearn how to walk. Done that? Time to relearn how to run. Doing that? What about relearning how to work or how to fit in, socially? Even now, over three years on for me, it still feels like it never stops.

But I also hope I'm making one other thing clear: Although it's difficult, much can aid TBI recovery. Countless people are willing to help out, countless strategies can be used to cope, countless things can be relearnt. Although the problems sometimes seem never ending, the hope definitely never ends!

Cheers,
Mike

The Slow Walk to Freedom

It's been a little over three years since my accident: three years of not driving; of hanging around, waiting for late buses; of always leaving time to walk to reach a place. Finally, earlier this week, I had my first post-accident, independent drive!



My return to driving was much delayed by the eye problem I mentioned in this post. I could have restarted driving despite that problem if I'd been willing to wear an eye patch. Given the way I think my brain works when I drive, unfortunately I felt that too dangerous for me to contemplate. I do not know how I would live with myself if, by taking unnecessary risk, I caused an accident like my own to someone else. Safety is paramount!

So, instead of driving while wearing an eye patch, I waited three years for operations to correct my eye problem. Two years is regularly taken to see if the problem might improve without surgery. In my case, it didn't, but surgery was further delayed by an extended period of travel (which you can read more about here). I'll also add that my search for the right surgeon led me to write this post, I'm the Boss!

Fortunately, that search proved successful. The results of my first operation meant no further ops were needed. I'd been expecting to need two, three or even four operations to solve my problem well and I was hardly assured of a good outcome. I was absolutely amazed to have such an outcome after only one operation!

An additional bonus of needing to wait to sort out my eye problem was that I wasn't trying to drive while still learning to cope with a significant amount of fatigue.

I write this post not to crow about driving again; more to talk about how, with care and patience, abilities and the freedom they allow will often slowly return.

Cheers,
Mike

More Phrases for Mike to Avoid: I Should/Need To/Must Do This

Yep, here's another post about words and expressions that show my (lack of) acceptance of my TBI. Hopefully, I'm showing the massive link between how we feel about something and how we talk about it. For a long time, when I talked about how something hadn't worked out, I would say, "I should have done this", "I need to do this" or "in the future, I must do this". You're probably recognising a pattern here now. These are not phrases of acceptance.

My family became a little concerned with the intense way I was occasionally talking. They commented about it to me. I stopped and thought for a while before realising I was using them because I still felt like an adult who thinks he knows something of the world. I felt old enough not to be making such simple mistakes like that: "Come on, man. Sort it out! You're better than that!"

Of course, I was completely failing to accept I'd had a TBI. You can almost hear me adding, "Brain injury? What brain injury? You mean like what Uncle Ted had?" :-)

So I'd been thinking of myself as an adult. But, in many ways, I was starting my new life again. I was more like a baby or, at best, a toddler! It was as if everything that I'd done before was gone. I was starting over from scratch. It was as if I was experiencing every new situation for the first time. Everything was a learning opportunity. When I thought that, I no longer had cause to say, "I should have done that!" Instead, it became more fitting to say, "I've learnt from this and I won't do the same thing again."

It's all about perspective!

Cheers,
Mike

Neuro-Resting at Work

When I described The Neuro-Rest, I talked about how I can take one almost anywhere. One of the most useful places to use it is somewhere you wouldn't normally expect rest to happen - the work place.

My fatigue is mainly a mental thing. I can only concentrate for so long and then things start to go down hill. In the post, The Fatigue Bank Account, I described how I have to make sure I keep my rest up during the day. The extra concentration required at work means I need to be extra careful to stay on top of my fatigue.

A convenient way of doing so is neuro-resting at work. When I feel I'm getting tired, I just find somewhere around with no distractions, say a spare office or somewhere. I don't even have to be lying down; just somewhere with no noise I might focus on.

Given how much I enjoy my work, I think my recovering would be much more difficult if I hadn't realised I could neuro-rest at my work place.

Cheers,
Mike

A No Joke Medical Disclaimer

This isn't some legalistic thing, but I would greatly appreciate it if you took a moment to have a read:

While a good deal of thinking goes into the ideas and information on this site, their relevance must relate to recoverers' own personal health and qualified medical help. When it comes to brain injury, so much is case-dependent. There is never ever (!) any substitute for sound medical advice.

To get the maximum benefit from this site, please use it along with help from a qualified and empathetic therapist knowledgeable about brain injury recovery. Physicians and neurologists may also be a great help. You can't beat a good team approach!

My Starting Point

A comment on my post, TBI Recovery - Not About Restoring the Old Me, But Improving the Current Me, led me to think about yet another aspect of acceptance - what I use as my starting point when I talk about my recovery. Early on, many recoverers (and I definitely include myself here) compare themselves and their abilities to how they were before their accident. It is very easy for others to see how pointless such a comparison is, but, for the one making it, it can be remarkably difficult to break!

For TBI recovery, it is very common for the recoverer to have no recollection of either the accident or the time immediately following it. My accident must have been such a shock and I was in such a bad way for weeks following it, people often ask, would I really want to remember that time. The only reasonable answer would have to be a definite no!

There are also other reasons for strongly remembering the time before my accident. Chief among them is that I really used to enjoy that time. My accident brought it to an end, but I really want to get back to it!

There's one small problem with focusing on the time before, though: I had a TBI in between now and then. The jolly thing came very close to killing me and I've been incredibly lucky to pull through. I've came to feel a lot better about that - about where I've been - once I came to accept I'd had my TBI. Once I learnt to accept it, it's so much easier to see my starting point not as my pre-accident days, but as the day of the accident, which I ended near death, laid out in a hospital bed!

In terms of remembering better days, acceptance means I'm better able to think of what I enjoy about my current, post-accident life. Yes, it lacks some of the things of my old life, but it has other stuff the old life didn't. I can now accept I've had my TBI and focus on the stuff I enjoy of my new life.

Cheers,
Mike

Phrases for Mike to Avoid: Again and Back To

In the post, Mike's Path to the Third Level of Acceptance, I put parts of two phrases in bold: "when I start doing this again" and "once I get back to that". I did so because these have become words, even now - over three years since my accident - I need to work to avoid using. I try to avoid them because of what I'm learning about accepting my TBI. When I use 'again' or 'back to', I imply that, because I used to do it, I'm certain I'll once again do it.

Yet part of me accepting my TBI is accepting that I might never again do what I once did. So I might never again do what I did previously.

I'm never able to stop being careful to accept my TBI and not use these words. Most recently, I've been tempted to use them when I talk about my running and swimming pace. I'm relearning how to be a triathlete (I wrote a little about it here). As I restart training, my mind quickly turns to my pace and how it compares to my pre-accident pace.

Before my accident, I could run a kilometre (about 0.62 of a mile) in four minutes and swim it in 15 and I used to be able to do both kilometre after kilometre. Now, I'm recovering from a TBI and, despite an amount of training, I can only manage about 70-80% of that pace.

I think it's a technique thing more than a fitness thing; I can only maintain that pace for a single kilometre before it starts dropping away and I'm not much faster when I try and sprint over shorter distances. Since it's a technique thing, the cause is very likely my brain injury; the brain is unable to perform what's being asked of it. Deep down, I have to admit that that means the brain may never relearn proper technique.

It took awhile for me to accept that I might never reach my pre-accident pace for any sort of long distance race. Now, though, I do my best not to imply that I will definitely reach it. I use phrases like, "if I become able to run four minute ks once more".

This post isn't meant to invite sympathy. First of all, I am incredibly lucky to have survived my accident and be recovering as well as I am. Secondly, you can be certain I will fight tooth and nail to reach those paces and achieve my pre-accident goals. But I accept that I've had my brain injury and I might never reach them and I might never do what I once did.

Cheers,
Mike

TBI Recovery - Not About Restoring the Old Me, But Improving the Current Me

In The Hardest Thing of Mike's TBI Recovery? Acceptance!, I talked of an idea about the process of TBI recovery. For me, at least, TBI recovery can be better thought of not as a process of restoring the old me, but as one of improving the current me!

Seeing recovery as a process of restoration is common. My Mum talks about how, if you do something like break an arm, recovery is more or less what can be done now, compared to what was previously done. For arms and such forth, I agree, such an approach might be appropriate and very useful for motivation, for instance.

Mum then goes on to a very important point. Brain injury is quite different to a broken arm because a brain is so much more fundamental to who we are and what we do. That makes a view of recovery as restoration much less appropriate. Sure, you can help the brain repair itself and try to teach it to do what it used to do; that's like a process of restoration. But, once you've retaught it something, it's most likely the brain has learnt to do it in a slightly different way. Nothing's restored, things are merely improved.

So a restoration idea for TBI recovery seems inappropriate. Yet people still try to beat the square peg through the round whole and continue with it. Most won't even realise they're doing so, but there are some who, through work with brain injury, should know better. It's a pity that they don't stop and think what their view fully implies.

Cheers,
Mike

Wanting to Leave Care

Related to acceptance of a TBI, many TBI recoverers want to leave care as soon as possible. Their desperation means that rehab centres have to keep the doors locked at all times. The desire to leave comes from the recoverer linking the effects of their TBI with their environment. They often believe that everything will be alright as soon as they get home. While that belief is understandable, it would be difficult to find anything less true for nearly all recoverers.

To help with the many and varied problems caused by a TBI, there is quite simply no substitute for thorough, professional care for a TBI recoverer. Leaving this care early will not make anything better; instead it will almost certainly make it more difficult to recover well. During my recovery, I remember the desperate desire to leave, but, in my case, it was somewhat limited by the fact that I couldn't walk! I needed the physiotherapists' help to relearn how to even get through the doors, first. I quickly saw that care was the best place for me to begin to come to grips with my various problems (only one of which was not being able to walk!).

Other recoverers have greater difficult dealing with the desire to leave. One recoverer at my rehab centre even went as far as to have conversations with his lawyer about his ability to leave. I only heard about this from him and so do not know how his conversations were received. I can only hope that the lawyer knew enough to attempt to discourage attempts to leave care.

I've written this post mainly to help family and friends decide what is best for their recoverer. Please keep in mind that, almost by definition, a TBI will mean a recoverer is initially confused and not thinking properly about what's best for them. In time, thinking will most likely improve, but, early on, friends and families may need to offer firm ideas about how best to help recoverers.

Cheers,
Mike

Mike's Path to the Third Level of Acceptance

I described here three different levels of acceptance. Like I said, reaching the final level took me over a year from my accident and I needed the help of a kind friend of my father to get me there. Funnily enough, he isn't even a TBI recoverer; instead he has Chronic Fatigue Syndrome (CFS).

First, a little of his background. My father's friend worked with him at an investment bank. The young guys there were tough, regularly working more than 80 hours a week! All of a sudden, my father's friend started suffering from unexplained fatigue. It gradually worsened and eventually he had no choice but leave his job. Years later, he has now recovered sufficiently to hold down a normal, 40 hour a week job while keeping a young family. I can only guess at how frustrating it must have been to lose so much ability in such a frustrating way without any obvious cause.

I was lucky enough to speak with him about a year after my accident. I continued to suffer a number of significant effects from my TBI. When it came to recovery, though, I felt very much like the young-buck learning from the old-hand.

Part way through our conversation, he said, you need to learn to let go of who you were. This was a real bomb shell for me; I quickly saw that I hadn't been doing that all. I'd been very focused on redoing the things I'd done before my accident. I was making common use of the phrases, "when I start doing this again" and "once I get back to that". I hadn't been thinking at all about letting go of who I was and what I used to do.

Learning that sort of acceptance certainly doesn't mean you can't try once more to achieve the goals you earlier had. But it does allow you to feel better about your progress in reaching any goal by better better enabling you to keep things in perspective. I can only regard what my father's friend told me as fundamental to my recovery.

Cheers,
Mike

The Hardest Thing of Mike's TBI Recovery? Acceptance!

In my post about TBI recovery and attitude, The Right Stuff, I mentioned the concept of acceptance. Shortly after writing about it, I was asked what was the hardest thing in my recovery. On reflection, I decided acceptance would have to be it! It's so difficult because acceptance is needed on so many different levels.

The first level is obvious, yes, I've had a brain injury. For me and many others, this one was or is easy! How else do I explain why I'm in a hospital bed with all of these jolly tubes sticking out of me?

The second level is a bit harder! It's accepting that, yes, I've had a brain injury and I can no longer do what I used to. Want to do something as simple as get from my bed to my chair? Whoa! What was once so easy is suddenly a massive undertaking! Done properly (and safely!), it involves me and at least two other experienced people.

The third level is the trickiest! Yes, I've had a brain injury, I can't do what I used to and I may never relearn to do it! So much has to be relearnt after many TBIs, it can be very hard to accept that the process of relearning might never restore the person I once was.

If you've had a TBI and this is the first time you've thought about acceptance at this third level, please don't despair. Accepting that you might not relearn to do stuff certainly doesn't stop you from having a jolly good crack at relearning it, as I'm doing now. Please see TBI recovery as not about restoring the old you, but as improving the current you! If you stop and think, you might well come to like what your TBI and your TBI recovery has made you become. I will write more about this shortly.

This third level of acceptance only takes up two of the first five paragraphs of this post. When I said it was the trickiest level, though, I wasn't joking! Indeed, Claudia Osbourn devotes an entire book (Over My Head) to discussing her road to this level of acceptance. I've described a little more of my own road here.

Cheers,
Mike

Listening to the Niggle

In my post about cellphones, I mentioned one of my memory problems; remembering things at the right time. Yes, an external factor like cellphone or even just getting a reminder from a family member or friend can make things easier, but neither is fool-proof. Instead, I can kick down the door and find a more natural approach to my memory deficits.

I've come to realise that my TBI didn't so much take away my memory, it simply changed the way my memory works. Now, rather than my memory chiming in with a big wake-up call, "Oh, I must do this now!", it gives me what I call a niggle. A niggle is a small, seemingly trivial worry that I'm forgetting something. When I get one, the best response is to to stop and focus on what might be causing it. Unfortunately, that bit of the memory doesn't come instantly and sometimes requires real thought, but, if I stop to think, it's much more likely to come back than if I don't.

Like I said, the niggle's something new and it will take me time to get used to this new way my memory works. Right now, I'm too tempted to simply ignore the niggle as nothing and continue on my way, only to remember what it was trying to tell me much later on. I hope I can focus on the new way my brain works and quickly learn to listen to the niggle.

I have found one way to make it more difficult to ignore the niggle. As I'm focusing on what it is I need to remember, I think about where I'll be when that needs to happen. What will I be doing? What will I be seeing?

I do not mean to suggest that every TBI recoverer will have the niggle. Instead, I mean to say that a TBI will likely cause a brain to function in a new way. Much can be gained from thinking constructively about that new way, whatever it may be.

Cheers,
Mike

Blogging About My Progress

In my last post, I talked about having a computer in my rehab centre. That's certainly not the only way my sister and brother-in-law contributed to my recovery. Shortly after my accident, my sister set up a blog to update family and friends on my recovery. It's called, Mike 'Happy' Wilkinson's Progress Reports. Happy was my nickname during high school (mainly on account of my regular use of my rather large smile!).

In my post about my computer, I mentioned how many of my friends had already moved, or were in the process of leaving, from my home country, New Zealand, to live in other places. As well as my own friends, my parents had a very large group of people who wanted to be kept up to date with my progress. The blog became a way for my family to keep everyone up to speed, whilst not having to cope with endless numbers of toll calls on the phone.

I definitely was in no condition to blog myself early on and the blog was maintained by my family. Eventually, I recovered enough to add my own thoughts and did so starting with my first post in May 2005. I continued posting until my discharge from rehabilitation about seven months after my accident.

One person reading the blog had no effect on anyone else doing the same. Also the blog had a very unusual topic, and so it became extremely widely read by many. That raises the somewhat important issue of confidentiality, but I have been and, with this blog, still am careful not to give away any information that might be financially profitable to the unscrupulous.

After I'd recovered enough, the blog was a very useful way for finding out what happened while I was still in a coma. Even now, the blog continues to be a way to help me recall a difficult, emotionally trying time in my life. I guess, when she set it up, my sister never realised the factor the blog might become in my recovery, but I am now very pleased she did so.

Cheers,
Mike

The TBI Computer Geek

In my post about the contribution of my family, I mentioned how my sister and brother-in-law set me up with a computer while I was still in my rehabilitation centre. I should explain a little better about it.

After I'd recovered enough to do so, I became very desperate to be back online. I'm an economist and, since computers are so important for report writing in my work, I am very used to nearly always being online. As well as that when I had my accident, I was entering a time in my life when nearly all of my friends were leaving my home country, New Zealand, mainly to live and work in Europe . In this country, it's called an OE or overseas experience and this Wikipedia article explains it more. Being online was becoming my only way of keeping in close touch with a rapidly increasing number of my friends.

I'd been shifted from the intensive care ward in hospital to a brain injury rehabilitation centre. In New Zealand, the health industry is someway behind the information revolution and internet connections were unavailable to patients in the rehab centre. However, I was lucky enough to have, in my family, an extremely capable and helpful technology guru, my brother-in-law. He set me up with a mobile phone connection to the internet using my old computer.

As well as being useful for My Brain Trainer and writing for my recovery blog, the computer put me back in touch with all my friends across the world. It was a tremendous buzz to feel so much more plugged in with everyone, but don't take my word for it, here's the thoughts of my Mother, Lee: "Mike's computer allowed him to be proactive in his friendships again. No longer was he sitting around waiting for people to come to hospital to see him. He was back in control and we later realised just how important this was to his morale."

All this happened back in 2005 in little ol' New Zealand. Doing something similar should be a lot easier now, particularly so in larger, more populated areas. If your loved one has recovered enough for it (and not before!), I would encourage you to look in to getting him online, too.

Cheers,
Mike

The Right Stuff

After my posts, At Least It Wasn't Worse!, You Can! and The Game is Still Wide Open!, you might now be picking up what I see as most important for TBI recovery - attitude. Conversations with Jason, the author of this TBI and spinal core injury blog, have led me to focus here on my view about attitude. In Tom Wolfe's book, The Right Stuff, test pilots and astronauts need it to succeed and survive. To recover well from TBI, I think people also need "the Right Stuff" and I define it here as being about attitude.

Being stubborn is a big part of the Right Stuff! Never accept any constraint from your TBI. Always believe you can and will recover well! Constantly look for doors to kick down!

Acceptance is another key part. Accept that you've had your injury and now things may be different. Know that you cannot kick down every door and be comfortable coping with constraints whenever you do come across them. I've written more about the concept of acceptance in another post, The Hardest Thing of Mike's TBI Recovery? Acceptance!

Over the top of that stubbornness and acceptance, the Right Stuff is about being positive: always look on the bright side of things. Don't bother worrying about the past, focus on the future.

Don't worry if you don't think you have one or more of these things. I don't think I developed complete acceptance of my TBI until over a year after my accident. I've written more about how I did so here. In this post, I'll say that I don't think it's ever too late to find the Right Stuff.

Some recoverers have great trouble accepting their injuries. The Right Stuff is extremely difficult for them to find. I've written this post not for them, but for people still thinking about their approach to their TBI. If this is you, please think about having the Right Stuff. Work on being positive and accepting while being as stubborn as all hell!

Cheers,
Mike

Feeling Sorry for Myself

In the post, At Least It Wasn't Worse!, I set out a pretty good way for me to avoid feeling sorry for myself. I think about how lucky I am to still be here and still be here in fairly good order. It's good to remind myself of that from time to time. To do that, I hang out with guys that are very affected by their TBIs.

For much of the first seven months following my accident, I was in a brain injury rehabilitation centre. It was very easy to get to know the people that lived there, some of whom were so affected. Those guys can't do things like speak or walk let alone work, drive a car or live by themselves, but they're very much still alive.

Getting to know them, it's very easy to see that they've had such a rough deal from their TBIs, yet they're still really good people. It's no problem having good, rewarding conversations with them communicating through body language or communication devices like the Lightwriter.

I can assure you that, for me, this certainly isn't a competitive thing. I don't look at them and feel good that I've recovered better. I would absolutely love to see them recover further. In the mean time, I will continue to do my best to drop by and say hi when I get the chance. It's the least I can do since there probably wasn't much at all that stopped me from being more like them.

Cheers,
Mike

The Game is Still Wide Open!

I started this label, A Case for Hope, to talk about the distance I've come in my own recovery. It's seen me go from a coma to something approaching normal in about three years. Recently, however, I've come across several stories that made me want to say more about hope.

My first point is that the brain is an exceptionally complex piece of equipment (and the bold text's because I mean it!). Quite simply, it's light years from being even close to properly understood! I find it somewhat disappointing people don't appreciate the head on their own shoulders when they suggest the human brain is reasonably well understood. When it comes to understanding even just how much we do and don't understand about it, it seems like we've got no jolly idea! For instance, scientists don't yet even understand why humans (or any mammal for that matter) need to sleep! Don't believe me? Take a look at this BBC article.

Since we don't come close to understanding the brain, it seems obvious we won't really understand recovery from brain injury. Three years in to my recovery, I am only now getting an appreciation for how little is understood. For instance, take the connection between the length of time in the coma-like state, Post Traumatic Amnesia, and the severity of a brain injury. I've previously had this link presented to me as being reasonably strong, but the article now on the right hand side of this blog, Debunking Ten Myths of Brain Injury Recovery, underlined that recent research refutes there being any strong link.

I certainly do not deny that there are and will continue to be heart-wrenching stories of TBI recoverers very affected by their injury. Nor do I deny that TBI recovery is a long, hard road. Rather, I say all this because, if you or someone you love has just had a TBI, it is very likely that there is nothing that can rule out a strong recovery. The game is still wide open!

If the game is that way, what can anyone do to recover well, what can help them win their game? The answer seems to me to be, start by having the right attitude. Believing that you can't recover further is very likely to make it so. Believing that you can recover is the start to making a good comeback and that is what I wish for you!

Cheers,
Mike

Dave's Family

The Role of Family and Friends in the Recovery of Cancer Survivor, Dave Colligan

Leading on from his post about the importance of family, Mike encouraged me to write about my own thoughts on the subject. I mentioned in my previous post about the phases of recovery one of the bad side-effects of the chemotherapy drugs I was on is that it practically wipes out your immune system for the period of the treatment, so any type of infection, even a minor cold, can be dangerous

Given that danger, the hospital were very keen for me to call an ambulance whenever I needed to come in. “You shouldn’t ever feel embarrassed, just call one!”, they’d say!. But I was too embarrassed because it didn’t feel like I was that sick – just that I had a bit of a temperature – so Mum and Dad became my personal ambulance service. They would throw me in the car and quickly drive me down to the hospital - just about as fast as any ambulance.

Mum would also make me nutritious meals that I could put in the freezer and just heat up on the weeks that I had my chemo. She was more keen for me to leave my flat and move home with her and Dad, but an important part of my recovery for me was that I still had my independence so this was a bit of a compromise! My sisters and friends would be happy just to sit around and chat or hang out and watch TV on days that I didn’t really have the energy to do anything else. That was important to me because I never felt like I was the only one going through this experience.

Like Mike, I think one of the most important parts of my recovery – both the treatment phase and post treatment - is having a fantastic support network. I’d really like to thank my family, friends and medical team for helping me and continuing to help me through a challenging time in my life.

Dave

The Phases of Recovery

Another View on the Process of Recovery from Cancer Survivor, Dave Colligan

I agree with Mike’s idea that recovery is a journey rather than a destination. Four and a half years on since my cancer diagnosis, I’m still officially in recovery with check-ups scheduled every 3-4 months, but it’s not like I’m actively receiving treatment anymore. So, to build on Mike’s view, I like to see recovery as a journey with different phases.

Phase One for me was the treatment stage. The chemo and radiotherapy probably couldn’t have been more effective on the tumours, but the side-effects of the drugs made things difficult at times. A major one was that the drugs practically wipe out your immune system for the period of the treatment, so any type of infection, even a minor cold, can be dangerous. I had to constantly monitor my body temperature, and if it increased by 0.5 degrees Celsius [Ed’s note: slightly less than 1 degree Fahrenheit] I was to call the hospital immediately and it generally meant a trip to the emergency room.

Phase Two is the post treatment stage where they regularly check to see if the cancer has relapsed. In contrast to Phase One, it has been (luckily) very straightforward. I get the results of check-ups approximately every four months. I’ve been in Phase Two for nearly four years now and the chances of the cancer reoccurring are becoming more remote by the day. However, the thing with cancer is you’re never really ‘cured’. Instead, you’re classified as being ‘in remission’.

Mike wants to keep this blog focused on TBI recovery and he and I discussed applying my phase idea to that. He thought that TBI recovery fits well in to a three phase structure with the extra phase at the beginning. Phase One becomes the period of time in Post Traumatic Amnesia before treatment can properly start. Then treatment and post treatment stages of my cancer example become Phases Two and Three.

Mike thought that the distinction between the treatment and post treatment stages wasn’t always clear for TBI recovery. He said, “Even after discharge from, say, a rehabilitation centre, a recoverer may well continue to seek help for specific problems, as I’ve been doing.” But he still thought a phases approach very worthwhile.

The nice thing about the phase idea is that it’s good for motivation. You don’t feel like recovery is one endless slog. Yes, it goes on and on, but, if you keep in mind the different phases, it does so in a clear, structured way.

Dave

The Face Game

One memory problem I have is word recall. I know I know the word, but just can't get it out. Often, there'll be a similar word or even just a description I can use to get my meaning across. However, there's one set of words I can't do that for, names! If I'm trying to say someone's name, there's no other word or description to use and any pause while I say it is simply embarrassing. I look like I don't know the name even when I do, but just can't manage to say it.

Eventually, I realised a way to work on my problem. Walking around town or some other crowded place, you often see people that look similar to people you know. As soon as I see such a person, I try to remember the name of the person they remind me of. So, what's the name of my friend with the moustache that looks like that guy's? What's the name of my old teacher who has a thoughtful face like that woman's?

I can even simulate pressure on myself by thinking, I've just run in to that person and I've got to remember their name now, now, now! Dealing with remembering under pressure seems to be a big part of my problem.

I'm not saying that every TBI recoverer needs to play the Face Game, just that, if you decide you need to work on one thing in particular, there may well be some child-like game that you can use to do it.

Cheers,
Mike

I'm a Specialist Too!

I know it's easy to feel overwhelmed by the immense background and knowledge medical specialists have. It's the countless years of training, often backed up by countless years of experience. It's understandable that most specialists give the very confident impression that they know what they're on about. I've written before that I haven't received any medical training at all, so there's an awful lot I don't know about, in comparison. There's one very important thing, though, that only I bring to the party. Only I properly know about me!

Those specialists don't notice the amount I do about myself. Funnily enough, they're not around me as much as I'm around myself, so how could they? They don't know exactly how I've been feeling. They don't know about the causes and consequences I think I might be seeing.

The human body's an exceptionally complex piece of equipment. I've alluded to, but not written about (yet!) how complicated the brain is to properly understand. While somewhat less complicated, the rest of the human body is far from fully understood. So, whether I'm seeing them about my TBI or any other problem, there will always be the chance that there'll be something important my specialist won't understand. Of course, there's a very good chance I won't understand it either, but I do have one important edge. I know more about me than they do.

Given my important edge in that kind of knowledge, when I see a specialist I want to be treated with respect. I want to be treated as an equal because, when it comes down to it, I am a specialist too; a specialist in me! Medical treatment is an important factor in How to Recover, but it's a team game. It'll be better played if each member of the team understands the contributions they and the other members of the team can make!

Cheers,
Mike

Stamina

In the post, Recovery from Any TBI, I wrote about how a severe brain injury wasn't that disruptive because of the severity of any one problem it caused, rather because of the number of problems it caused. Indeed, my accident caused a bit for me to deal with. I can remember (and there was a good portion of time early on in my recovery where I don't remember) seeking help for eight separate problems related to my accident - things like relearning how to run and learning more about problems with my vocal chords and speaking. All but one of these problems were caused by my brain injury. For those eight problems, I've seen eight different specialists (four of which I saw about this problem with my eyes), two general practitioners and twelve others (therapists, nurses or technicians and the like).

Those eight don't include all the problems I've had, but haven't sought medical help for (normally because I don't think it useful). Chief among them is fatigue, but the nature of those problems extend to things like needing to relearn how to eat without spilling stuff down my front. :-)

I wrote about the very involved approach I take to medical help in the post, I'm the Boss! That approach is difficult to maintain for every problem I've sought help with and so I've called this post, Stamina, not because I think I have it, but because I wish I had more of it.

One idea I've used to maintain my involved approach is to stagger my appointments. For instance, I decided not to seek help with my excessive sweating (probably caused by an injury to my brain stem) until after I'd had my eye problems resolved. Remember this is three years after my accident now. So, yeah, stamina is what I wish I had more of.

Cheers,
Mike

I'm the Boss!

All the way from hardcore medical specialities like neurology through the different therapies such as speech therapy, physiotherapy and occupational therapy to off-the-wall suggestions like learning tango dancing for balance, I've had it suggested as a way to help my recovery. There's one approach I take to it all, though, and that's, I'm the boss!

I am the one who goes through the hassle of operations, attends the appointments and has the sessions of therapy. And I am the one who has to live with the results of the care, be they positive or negative. It's very much in my interest to know exactly what's happening. When I first see a specialist or therapist, I want to know two things and I'm going to say this in bold because I'm very serious about it. I want to know A) that the person knows what they're doing and B) what they're doing is worth my while. Neither scalpels nor swiss balls should they bring to me without convincing me of both of those things first.

Like any good boss should be, I am acutely aware of the amount I don't know. I've never had any serious medical training at all. So there has been and still is much that's completely new to me. But I pride myself on being very curious and having an inquiring mind. I really like stuff being explained in a way that I can understand. If I ask my specialist or therapist a question, an answer I don't understand is almost as bad as no answer at all. The only thing making it better is that an answer that I don't understand allows me to ask further clarifying questions.

To find out about A) and B) for any particular specialist or therapist, I've found three questions particularly helpful. The answers given in response tell me a lot about how confidant they are and what they're feeling. The questions are:

• What are the benefits of us doing this?
• What are the risks?
• What are the other ways we might do it?

Of course, those questions won't always be appropriate. For instance, I have sometimes found out answers to them before I've even had time to sit down. But I want to be roughly clear on them before I start investing time or effort in pretty much anything to do with help for my recovery.

Cheers,
Mike

Mike's Family

In the post, There For Me, I said I'd have a crack at summarising some of the main ways my family contributed. To keep this post to a realistic size, perhaps it's easiest if I run through each family member and talk about some of the crucial ways they contributed.

• I talked here about how my Mum and Dad have always talked to me about how I'm finding stuff. Nothing has ever stopped their pursuit of (sensible) knowledge of that and also what might help me out in my recovery. For instance, Mum found out about My Brain Trainer for me and Dad greatly encouraged me in my search for a better surgeon to help me with problems with my eyes.
  
• My sister and brother-in-law organised for me a bunch of technology-related things to help me recover. They were this blog to update friends on my recovery and a computer with an internet connection while I was still an inpatient in rehabilitation. I'll write more about both shortly.
  
• My brother always had unshakeable faith that I would recover well. Obviously, that lost its important as I proved him right, but it was especially so early on. My brother's faith was very important to the morale of my family during the dark days I was still in a coma.
  
• My extended family who unquestioningly had me along to family activities, such as outings, parties or even just my cousin's weekend sport. To be good for my recovery, I don't think it really mattered what I went to, just as long as there was plenty of people there. I've written that my personality didn't change much, but, even if it had, it wouldn't have mattered to my extended family!

Hopefully this gives you a quick run down on what families can do for you.

Cheers,
Mike

There For Me

I've recently taken a moment to reflect back over what I've written about on this blog so far. There's one thing I've alluded to, but have not properly got in to ... until now. That thing's actually very simple; it's family! Time and again during my recovery, my family has come through for me. I come from a very tight-knit family of six that's part of a much larger extended family group. And they've been doing an awesome job of supporting me throughout all of my recovery!

It's very difficult for me to put in to words what my family has meant and continues to mean to me and my recovery, overall. Rather than trying to describe that, I'm going to take an easier option. I'm going to write down the more major ways my family has contributed. I'll talk to some of my recovering friends about doing the same. In that way, I hope to show you the range of ways that family can make a difference.

If you're in the family of someone with TBI, please remember that you have the power to be a tremendous force for good for that person's recovery. Times might be tough and personality changes and general difficulties might have made the injured person seem entirely different, but please hang in there and see what you can help them become.

If you're the one with the TBI and you don't have a close family, I seriously ask you not to despair. Like the determination to recover, family is only one of a number of factors that may or may not lie behind a successful recovery. Yes, I see it as important, but not having a close family certainly doesn't stop you from relying on other factors. Case 2 in the case series report I link to on the right hand side of this blog discusses a recoverer without significant family support. He says, "It comes down to being tough-motivated, strong, disciplined, accept small steps in your recovery, [and] learn from your mistakes."

So, while important, family is certainly not a be-all and end-all.

Cheers,
Mike

The Fatigue Bank Account

My Mum recently reminded me of this analogy, which does a good job of describing fatigue. It involves money so it's particularly appealing to the economist in me. :-)

Fatigue is like a bank account. To make withdrawals from it (do stuff requiring concentration), I need either a positive bank balance or a credit rating to borrow. A positive balance comes from resting. I have a particularly good bank balance in the morning after a restful sleep and I can increase my balance during the day by neuro-resting.

Early on after my TBI, I had no credit rating at all. So there was no way I could borrow and make withdrawals without first having a positive bank balance. I couldn't have a tiring day and expect to get away with only a good night's sleep that night. Instead, I'd continue to feel tired for days afterwards. Nor could I have a shortened sleep one night and expect to operate properly the next day. I was almost completely reliant on having a good bank balance.

Slowly, my credit rating improved and I could get away with doing more without resting adequately first. That has been a long process and three years on, I still think I'm 'sub-prime' or, if you want to get more technical, at least non-investment grade. Slowly, though, I'm getting back up there.

Cheers,
Mike

Know Your Enemy

You didn't think my combative language had gone away, did you? :-)

I've written about the size of the problem fatigue was for me, especially early on. Like all the effects of my TBI, fatigue is one of my enemies, to be struggled against and, in the end, to be beaten. You can better do those two if you better (as the saying goes) know your enemy! In this post, I'll write a little more about my fatigue and show you better how seriously I took it.

This website sets out the various forms of TBI fatigue. Of them, I suffered solely from mental fatigue, which the website says affects 70% of TBI recoverers. My mental fatigue is basically like I get drunk. I start slurring more words, my balance and coordination get poorer, my decision-making skills suffer. Unlike feeling intoxicated, however, there isn't anything positive about mental fatigue. It's not a good feeling and I've become very conscious about the danger I am to myself when I'm fatigued. I quickly learnt that the only way to 'sober up' was to neuro-rest.

Early on, when becoming fatigued could do the most damage to my recovery, I could barely manage an hour of concentration on anything at all without neuro-resting. The amount I could do slowly, but steadily increased. Still, any activity that required more serious concentration, such as working (in my job as an economist) or even just writing an email on the computer, would tire me a lot faster.

One of the biggest risks with becoming fatigued is that it can build up and up. Becoming really fatigued one day may mean I feel tired for days and days afterwards. The way I found that out is one of Mike's Regrets.

Each day fatigue gets a little better, though, and my fatigue slowly changed. I eventually found that I could neuro-rest by simply changing activities to one requiring less concentration. I am now three years on from my accident and, while much less of an issue, my fatigue is still there. My fatigue has been a big enemy to take on, but taking it on is what I have been doing and will continue to do.

Cheers,
Mike

Swim, Bike, Run

With part two of my amazing interview with Johanna, I started the post label, Competitive Sport. I made it a label as I planned to add more posts about my own experiences trying to play competitive sport post-accident. Now, Johanna is a special person and what she has done, post-accident, is absolutely amazing! Unfortunately, I cannot claim to have had anything like her success, but my sport is a big part of me and something that has been and still is a very big focus of my recovery.

My sport has three disciplines: swimming, biking and running; yep, I'm in to triathlon. In this post, I wrote about being close, prior to my accident, to racing in the New Zealand Ironman triathlon and how I am very keen to have another go at the race. That keenness has meant I've started a very big process of relearning to do each discipline. Funnily enough, that process has involved relearning each in the order they actually appear in events: swim, bike, run.

Physically, swimming is the easiest as it involves no weight bearing at all. No surprises I relearnt to do it first. Initially, I had problems with breathing, but they were solved once I learnt how to keep my breathing smooth by taking a breath and then releasing it slowly each time. Next came biking; as with swimming, I needed to learn how to keep my breathing smooth here too. I also needed to learn more about my balance and about not riding when badly fatigued (in the post, Mike's Regrets, you can read how I found out my balance while biking is much poorer when I'm tired).

Last, but not least comes running! Running is by far and away the most difficult discipline, physically. All three disciplines require rapid muscle movement, but only running requires it while the muscles are bearing weight. As with my walking, I had to start from scratch and completely relearn it. To help me do that, I needed to see a physiotherapist working in Australia. He specialises in brain injury and running and gave me valuable exercises to help me, but I am still very much relearning this discipline now.

To have another crack at Ironman, both my fitness and my technique have to be top-notch. That means I have a long way to go, but I will, of course, keep you updated on my progress as it relates to recovery from TBI.

Cheers,
Mike