You Can Get Me on My Cellphone

The wonder of the cellphone - back in the '80s, nobody would have guessed at the extent of their use twenty five years later. Yet their effects are so wide-ranging! One of the many things they have helped with is my TBI recovery.

Since my accident, my short-term memory hasn't been bad. With enough time, I do still recall nearly everything. When the pressure's on, though, and I need to remember things quickly or at the right time, it's a different story. Things can just slip through the net and I forget them. Early on in my recovery, though, my OT gave me some excellent advice - get a decent cellphone!

Obviously, being in touch for those things that I forget, before suddenly remembering, is awesome. The benefits of having a cellphone hardly stop there, though. I can set myself reminders to do stuff at the right time. My cellphone will diligently ring to let me know. I can write myself to do lists - very handy for shopping lists and that sort of thing. Their use as a memory aid for those recovering from a TBI has been known for sometime.

I found that a mobile phone was limited by how good I was at using it. Sure, I learned how to operate it well, but, for instance, after having my night-before reminder go off, I'd forget to set it to go again to remind me at the right time the next day. Often, when I get something to remember, I wonder should I put it in to my phone or do I back myself to remember it without. When I don't enter it, I invariably find that, indeed, I should have put it in my phone.

To those who worry that technology is taking over our lives I say, if only they could invent technology that good! :-)

Cheers,
Mike

Mike's Regrets

On this blog, I've tried to write about the lessons I've learnt. I know that many of them are things that have worked; things that have gone well. That might make it seem that my recovery has all been plain sailing. I can assure you that, unfortunately, that's not the case.

Awhile back, I talked to friends of how, if I wanted to, I could call this blog, How NOT to Recover. One friend asked me what I regretted and what I would have done differently. I've reflected on that quite a bit since. Most of my regrets relate to times I simply pushed too hard - I ignored the constraint of my TBI and more or less tried to do stuff as I had previously done it.

In the list below, I've written examples of me doing that followed by posts or post labels discussing what I've learnt about each.

• trying to work for four straight hours well before I was even close to being able to (Fatigue);
• almost getting another TBI by trying to body-surf dumping waves at a surf beach I went to (Brain Lock);
• doing a new piece of work without having regular conversations with my boss about it. I subsequently embarrassed myself by having my work fall well short of expectations (Let's Talk About It);
• falling off my bike because of fatigue during a cycling trip and scarring my chin (The Hardest Thing of Mike's TBI Recovery? Acceptance!); and
• most critically, falling over and badly breaking an arm whilst out hiking when I knew I had poor balance, but hadn't bothered to use walking poles (once again, The Hardest Thing of Mike's TBI Recovery? Acceptance!).

So my recovery has had its downs as well as its ups! The whole way along, though, there's been lessons to learn and I've done my best to learn them.

Cheers,
Mike

Choosing Which Doors to Kick Down

A big part of kicking down doors is choosing the right ones to try to kick down. In describing what I mean by that, I'll tell you a little more of my story. My accident stopped me from entering one room I'd nearly been inside. At the time of it, I was about to race in the New Zealand Ironman Triathlon. Unfortunately, though, I was still very much in a coma at the time the race took place!

Once I recovered from my coma, I had two big issues preventing me from even thinking about trying that race once more - needing to learn to run again and problems breathing hard while exercising. My TBI caused the first and damage to my windpipe caused by the life-saving tracheostomy I had while in a coma caused the second.

For awhile, it seemed more than possible that I would never be able to do an Ironman. To stop me going bonkers because of that, I thought hard about why I'd wanted to do one in the first place. I quickly decided that I had wanted to do one because I wanted to push myself hard physically. So, really, the room I had wanted to enter wasn't actually the Ironman room, it was the pushing-yourself-hard-physically room!

Triathlons certainly aren't the only way of doing that. Many other ways involve neither running nor breathing hard - learning to rock-climb well is one such way. Although I might not physically be able to get in to one room, there's nothing stopping me thinking about what other rooms I am still able to break in to.

Eventually I learnt how to control my breathing by breathing smoothly - I kicked down the door to the able-to-exercise room! After that, it seemed more likely that I might one day do an Ironman. However, I still need to learn to run again even now. Ironman is still something I'd like to try and do, but there are all sorts of other rooms to go through before I get to try for the Ironman room - the ability-to-run-well room, for instance. By breaking down my big goal (doing Ironman) in to a series of smaller steps, I can make it a lot easier to get there in the end.

So that's what I mean when I say, choose which doors to kick down. The room you wanted to get in to might not actually be the right one. And, if it still is, there are very likely all sorts of other rooms you can enter to help you get there.

Cheers,
Mike

Kicking Down Doors

Time for a bit more combative language!

This is the second half of my answer to how I cope with the amount my diffuse TBI left me to work on. (The first half of the answer is here.) I cope because I actually quite enjoy 'kicking down doors'! Literally kicking down doors would be a great way of hurting yourself and so I mean this figuratively! 'Kicking down doors' is how I describe the process of learning strategies to work around the constraints of a TBI. That description sounds really boring and so I prefer just to say, I kick down doors!

My TBI felt like it closed doors to all sorts of rooms I wanted to get in to - I could no longer reach the goals I'd set myself prior to my accident. I found, though, by thinking carefully about my constraints, I could often work out a way to eventually reach those goals - I could still get in to those rooms. I just needed to kick down the door to do so!

One of the arts to kicking down doors is working out which doors to kick down. Some doors are going to be easier to kick down than others and trying to kick down the wrong one can leave you with a very sore leg! Because of the importance of choosing the right door, I've written another post about it here.

I said above that I enjoy kicking down doors. I'm not quite sure why I do - perhaps wondering why is a bit like wondering why I also like sweets. That's just the way it is. I do believe, though, that a very large part of my recovery is due to my being that way. In an effort to help others find within themselves a determination to kick down doors, I've written the post, You Can!

Cheers,
Mike

At Least It Wasn't Worse!

People often ask me, how do I cope with the amount I have to work on. Indeed, as with many diffuse TBIs, mine left me with all sorts of skills to improve at. Sometimes even I wonder how I keep going! The answer's pretty simple, though - the first part is that at least it wasn't worse!

My accident came extremely close to sending me to my maker twice (the first time was the head injury itself and the second was a pneumonia I caught in hospital). So, if my accident had been even slightly worse, I would be dead. It's as simple as that.

Obviously, almost anything's better than dying. In that vein, if I can't do things that I used to do or that I'd still like to, I never get too worried about it. I might not be doing everything, but at least I'm still here doing some stuff. And that some stuff might be more difficult to do now, but, again, at least I'm still here to try my best to do it.

The second part of my answer to how I keep going is in a separate post here.

Cheers,
Mike

Looking Funny

Given how serious my accident was, I'm lucky not to have more problems with the way I look. One thing gives it away, though - my crossed eyes! My brain bouncing around inside my skull damaged a particular nerve that runs to my eye muscles. That damage causes those muscles to behave differently and so the eyes are pulled out of alignment. They will look a lot more normal after surgery I hope to get early next year. Right now, however, they make me look a bit funny.



I don't really mind that. I'm a bit short too and my philosophy on that has always been, sure, underestimate me if you want. If you do, though, I'm going to enjoy proving you wrong! Still, underestimating me is one thing. Treating me different because I look funny is quite another.

My Mum recently came up with a very sensible idea to help with looking funny - dress well! Always dress for a state better than indicated by looking funny - for instance wear a collared shirt, nice pants and decent shoes.



I went looking for articles on the problem of coping with looking funny. Eventually, I found this article on disfigurement from scarring. To get to the interesting stuff, you have to skip to the section, Living with Scars, on page 6. It is worth a read, though. It quotes a researcher as saying, "when people with scars are friendly, relaxed and outgoing, they can overcome strangers' initial recoil." I hope, though, that dressing friendly and outgoing can further improve reactions.

Cheers,
Mike

P.S. I was lucky enough to have a surprisingly good outcome to my surgery, which I talk about in the post, The Slow Walk to Freedom.

My Brain Trainer

I've had help from a number of important technologies during my recovery. All are easily available and ready for action, but I want to tell you first about what I thought the most important, the website, My Brain Trainer.⁽¹⁾ It is marketed as an online mental gymnasium - a "brain-gym" - for healthy people. Healthy people are those not fortunate enough to have had a TBI. :-) Yet, just like physiotherapy and physical gyms, this brain-gym is also very useful for TBI recoverers.

The website currently contains ten different series of exercises designed to test different activities of the brain. Those activities range from reaction speed through short term memory to executive function. The tests gradually get harder within each series and the website is very clear on results. It gives you your score and what underpins it. It also gives you the average of the scores of other people.

Those comparisons don't make me despair when I perform below average, though. And I do perform well below average for some activities - I consistently get a score over 25% lower than the average (for my age group) for reaction speed to audio stimulus (although not, interestingly, to visual stimulus). Still, because those averages are mainly for healthy people, they don't represent a good comparison for someone with a TBI.

Despite my continued slow audio reactions, I think the website has helped my brain function in a range of areas. The first area I noticed was short-term memory, but I can also add executive function and an ability to respond fast to a changing environment to that list. The latter was a particularly big thing for me and, right now, I still hope to improve it greatly! I don't like to think, however, what I'd be like without the website.

For the full gymnasium you need to pay about US$10 for three months' access. You can still have a small go for free, though. Click on 'Take the Challenge!' to access one of the exercises. And enjoy!

Cheers,
Mike

(1) My Brain Trainer is but one of a number of online brain-gyms. Although I haven't tried the others, three websites (including it) are discussed in this article.

Fighting My Own War - My Combative Language

Readers may soon notice that I often use military-style language when talking about my recovery. I've stayed away from military words until recently, but my recent reference to my 'big gun' (in this post) is more the way I normally talk about my recovery. So that post may well represent a taste of things to come. Though my words are a little boyish, I make no apology for them.

I take an approach that feels right for me - it is reflected in the way I talk about things. I do not blame anyone for my injury, but I take my recovery from it very seriously. At a fundamental level, I regard my injury and all of its effects as 'the enemy' - to be struggled against and, in the end, to be beaten!

I am sure others will take different approaches. Their language might contain lots of things like flowers, olive branches and turtle doves. :-) Yet I am fighting my own war and their approach is not mine.

It might be interesting for you to think about your approach to recovery and the language you use to talk about it.

Cheers,
Mike

The Neuro-Rest

I wrote here about the problem that fatigue was for me. In many ways, it was like a big monster. But, when big monsters come a'calling, it's time to bring out the big guns to hunt them with! And, luckily, I thought of one big gun during my recovery - the neuro-rest!

It sounds a little complicated, but it's actually very simple. Neuro-resting is simply when I shut my eyes and try to stop thinking about stuff. So, no talking, no listening, no interaction with anything in my environment! Basically, I do my best to fall asleep. Sometimes, I'm successful in doing so and that's great. But it doesn't matter if I can't. My brain neurons still seem to get rested!

The reason such a simple thing is still a 'big gun' is that neuro-rests can be done anywhere. All that's needed is for me to be able to fall asleep. So I can do it sitting up in a room pretty much anywhere. For instance, I can do it while travelling in a car or plane. I can even do it where there's background noise as long as I'm not listening to it.

The other good thing about the phrase, neuro-rest, is that it's a normal-sounding name for a rather unusual activity. So, if a family member or friend sees me awake, but just sitting there with my eyes shut, they can say, oh, he's just neuro-resting. And they don't feel like they should come over and talk to me.

So welcome to what armed me the best to cope with my recovery - my big gun, the neuro-rest.

Cheers,
Mike

A Nod to OTs

The turf of the Occupational Therapist. By talking about things like managing TBI fatigue and returning to work, I'm going to be treading on it sometimes. But, during my recovery, I've developed a great amount of respect for OTs.

These guys are the masters of problem solving and strategy creating! No everyday life problem brought on by my accident was too much for them. While I still had trouble walking, they made sure I was safe using a wheel chair. They came to my work and chatted to my boss about my return there. They even helped me figure out ways to remember what I'd said to people to save me embarrassing myself by saying the same thing twice.

So I hope this site contributes to, rather than detracts from, the noble profession of the OT.

Cheers,
Mike

Everyday It Gets Easier!

Sometime in to my recovery, I was lucky to hear the wise words of a nice man, himself a stroke victim. He told me something that helped me a lot with managing fatigue. He said, the thing with most brain-injury fatigue is that every day it gets a little bit easier. Every day you get a little bit stronger and last a little bit longer.

Remembering that did keep me going. For me, fatigue was such a long battle. But it felt good to think everyday, I was getting a bit stronger. And everyday, I was winning my battle a bit more!

Cheers,
Mike

The F Word!

The biggest thing for me in my recovery was fatigue! That was partly because it was unlike anything I'd come across before - prior to my accident, having a nap or some quiet time every so often was just not the way I did things. And it was also because, particularly early on, it had a tremendous impact on my day-to-day life - early on in my recovery, I wasn't able to sustain more than one hour's concentration basically on anything at all.

And there was simply no way of avoiding fatigue - I had to learn to deal with it! If I ever let fatigue build up, it would get a massive amount worse on me. So bad that I could barely do anything except stay in bed at home for days at a time!

Fatigue is one of the topics that I most want to write about on this blog. I want to write about the things I did that went badly and lead me to spend days at home. And I want to write about the things that went well for me and made me feel like my fatigue was nothing at all. I continue to look forward to telling you more on here.

Cheers,
Mike

A Diffuse TBI

I've written that I sustained a diffuse TBI in my accident. I'm doing my best to stay away from medical terminology on this blog. No, I definitely do not present myself as anyone who has received any sort of serious medical training. I'll try and explain what I mean in plain English. A diffuse brain injury is one that affects more than one area of the brain. And a focal brain injury is one that is confined to only one area. If you want to get right in to the terms, try the Wikipedia article here.

I understand that diffuse brain injuries are quite common TBIs. That's because they can happen when the head suddenly accelerates or decelerates - something that happens when you fall, get run in to or, like me, you find out how your head gets on when you ram it in to the side of a van at 40 kmh (about 25 mph)! ;-) The brain injury happens because the brain bounces around inside the skull. That's really not good because a) the brain is very soft and b) the skull is very hard!

Yet it's often more than one area that runs in to the skull and damages itself. The brain can bounce off one side and run in to the other, for instance. The end result is that it can be very hard to know what parts of the brain are injured.

A focal brain injury, by comparison, might happen if something penetrates one part of the skull. A foreign object, for instance, might try and see what the inside of the skull looks like. If that's the case, it can be more obvious which part of the brain is injured.

So that's what I mean when I say I had a diffuse brain injury.

Cheers,
Mike

A Backgrounder on Mike and This Blog

While out cycling one morning back in 2005, I had a very close brush with death in a bad bike v van collision! I suffered a severe diffuse TBI.

I was lucky to survive. And a long recovery followed.

It felt like the accident threw me to the bottom of a very high and very steep mountain. And, to get the life I still wanted, I had to scale it. It has been a very long journey. And, in a number of ways, it isn't over yet - my recovery continues!

But I've been lucky. While bad, the accident didn't kill me. And, during my comeback, I've had the support of all sorts of people - a wonderful family, understanding friends and a big collection of very helpful health workers.

I've learnt a lot about recovering - about what works and what doesn't - during my comeback. Some of the stuff I tried is almost enough for me to call this blog, How Not to Recover! Yet, to help repay the people who helped me, I want to share what I've learnt about TBI recovery with a wider audience.

So I created this blog to share my thoughts on ways to recover from TBI. It certainly isn't a complete coverage of the topic. Every TBI presents differently. And, fortunately, I've only had one! :-) But I hope talking about my ways will, at least, stimulate thinking for all those other TBI recoverers out there.

Cheers,
Mike

P.S. A brief overview of my recovery can be found in another of my posts, Have Hope!

I'm Not a Patient, I'm a Recoverer!

As I was thinking about this blog, I pondered what to describe myself as. Calling myself a patient didn't seem quite right. I'm not sick, I'm just recovering!

I don't lie around all day in bed. I much prefer to be out trying to do stuff again. Of course, I can't do as much as I could before my accident. And, when I do try to do stuff, often I don't do it very well! But, with in the limits I now have, I still do as much as I'm able.

So how can you call me a patient? A word to describe someone who's recovering seems much more fitting!

Cheers,
Mike

Have Hope!

One of the first things I want to write about here is how long recoveries from TBI take. And, therefore, how important it is to have hope. The brain is an incredibly complex piece of equipment that, when it works well, performs a massive number of functions seamlessly. When it stops working well, we suddenly discover the amount it normally does without us even thinking.


This is me, only a few hours after my accident! A severe TBI is a pretty good way of stopping the brain working well. :-)

As well as my accident, I picked up a pneumonia in hospital that also came close to ending it all for me. It's fair to say, the odds were stacked against me! But, as a garden-loving relative jokingly said to me, it takes more to kill off a weed than that! :-)

When it comes to TBI, we can rely on another activity of the brain - recovering! And, in many cases, the brain will do a good job of that as well - all it needs is a little time!


Here's me and my Dad on my birthday almost three weeks later! The balloons are because no flowers are allowed in hospital.

For me, it did indeed need a good chunk of time. I was in the coma-like state called Post Traumatic Amnesia for a total of 54 days. This photo shows the blank, vacant stare of someone in PTA. At least I'd managed a thumbs-up and a 'kind-of' smile! I'm so thin too! I dropped 20% of my body weight following my accident! Also, you can see my tracheostomy in my neck and my gastric feeding tube in my stomach.



But slowly I came back to the world...


... just in time for a good cup of coffee! :-)

Still, my recovery was far from over - you can see I'm in a wheelchair in the previous photo. I had to relearn almost every muscular function - all the way from swallowing up through to walking and finally to running. I'm still learning to do the latter properly now - almost three years after my accident!

I finally walked again unaided on my own Independence Day, 4th July 2005 - about 4.5 months after my accident. Still, my walking was far from perfect and there was a lot of room for improvement! Here I am shakily demonstrating my newfound ability to walk to my brother almost two weeks later:



My recovery has been a long road with many ups and many downs - if you want, have a read of My Regrets. In the end, though, I'm pretty happy with the way I've recovered. I do, however, want to make one thing clear - it is a long road and the end can be very different from the start. So, if you or someone close to you is also recovering from a TBI, have hope!


Time for a proper grin! Hangliding over Rio de Janeiro a little under two years after the accident.

In some ways, my recovery was as a pretty short one. I once spoke with another TBI recoverer who lost his sense of smell following his accident. It came back, all of a sudden, fully nine years later! There is no question of the brain's ability to repair itself given a bit of luck and the right amount of time.

But there is much that can be done while we wait for things like that to happen. And I look forward to talking to you about some of that stuff on this blog.

Cheers,
Mike