1st June: Bryce and the search for OBJECTIVE MEASURES

Greetings everyone

For a change tonight there is a different aspect of PBs to report. Bryce has been beavering away trying to work out an objective measure for Mike to use to assess his fatigue. Those of you who know Bryce well will understand the importance of such measures to him. Despite heaps of scorn poured on by me, his ever-admiring wife, I have to admit that he has come up with quite a neat idea, at least for someone like Mike.

The system relates to mental arithmetic that Bryce and his class mates did at Primary School. Yes I know you have to wonder about someone who remembers anything from that long ago, let alone specific mental arithmetic, but we're talking Wilkinsons here and it was Christchurch where there'd be stuff all else to do. The system involves giving Mike a number between 1-100, then two numbers to add and subtract. (The adding number is higher than the subtracting number, just to make it easier.) Then Mike adds and subtracts the same numbers for a minute - how many can he do in a minute. Then he keeps track of how he performs during different degrees of tiredness and can track fastest performance and slowest. So tonight I arrive, I think Mike seems fatigued but he says he isn't bad. He volunteers to do THE TEST and lo, he was very tired. Lowest score so far. Interestingly, I could see half way through the minute that suddenly the fatigue kicked in and his rate dropped fast. (You will notice that there is no mention of Yours Truly subjecting herself to the test!) In essence the message from that test meant: 'Go home Mum'

Progress with the walking today. Mike got so that he can bring his leg right through the stride, rather than just bring it up to the other leg. When you think about it that advance takes nerve and, if successful, quite a lot of balance. Mike had both.

Regards and happy mental arithmetic

Lee

May 30th: Back to the olds

Great to get all your positive comments for Mike. I can see that the Hutt Valley has a bit of an image crisis! It sure felt a wonderful place to us as we drove Mike around for the first time. The small things in life take on such a new meaning. We were armed with clean up gear because brain injured people often get car sick, but not Mike.

Each day Mike gets a little bit better co-ordinated and a tiny bit stronger. It is hard to describe unless you see it close up and notice the micro changes. Where even a week ago he was so shaky I had to get help to transfer him from the wheelchair to his bed, now he is good enough to manage with only me. But they think it will still be six weeks till he is really freely walking on his own.

The fatigue is an on-going issue and we're all still learning about it. Even just Mike lying in bed listening to music or reading tires him. Even having us read to him is not restful enough - he doesn't lose energy, but he doesn't gain it either. So its quite a challenge, particularly for a guy who all his life has been either full on or sound asleep! Any suggestions for ways to rest are welcome! I've been teaching him yoga breathing. I plan to seek out someone to teach him meditation when he has more stamina, but it would have to be someone really willing to adapt their technique to brain injury.

One good thing from his goals though - by July apparently Mike will be doing his own washing and they will have taught him to cook. At that point, we will all move into Cavit with him and he can look after us.

Mike is really enjoying his visitors. Thank you so much to the regulars and the casuals. Just call me if you're planning to visit so I can keep things co-ordinated.

Lee

3rd Post - 1st Drive

Hi guys,

Saturday 28th May was a milestone day or, in my Dad's words, a PB. I had my first car ride with Mum and Dad. The ride through the Hutt (from the hospital) was (fortunately) uneventful.

There was some nervousness as it is common for head injury patients to get nausea. Fortunately, I was not inflicted with that problem. All I had was some dizziness and it was gone by the time we got home. Unfortunately, the ride wore me out and I was stuffed afterwards.

For those of you who know the Hutt, we went up to the Wainui hill lookout and the Petone foreshore for a coke (I had to get some caffeine in there somewhere). We also checked out two houses that I grew up in (neither had changed much).

The ride, along with my first weight measurement over 60 kilos the day before, felt like more of a return to normality,

Kind regards,
Mike

A Day In My Life At CAVIT

Firstly, I have some news. On Tuesday, I had my first walk with a cane. Admittedly I was supported by my Physio Sue, but it was (literally) a step in the right direction. We had another family meeting with the Cavit staff. It was weird to sit there while everyone talked about you. As I said before though, things are headed in the right direction, so the meeting went well.
A day in my life at CAVIT centres around therapy. I get up around 7.30 and generally have a shower first. Mum normally makes me breakfast after that.
Then we move into therapy for the day. Given my circumstances, I spend more time in Physiotherapy than Speech or Occupational Therapy. Normally, I have two sessions of Physiotherapy and one of either Speech or Occupational Therapy. Usually, one of the Physiotherapy sessions is on Sue's machine and the other is practicing walking somewhere. The name of the game is to get my muscles to listen to commands from the brain. While there are only a few main muscles for walking there are a lot of muscles through our trunks involved in balance. These represent the central focus of my Physiotherapy.
Stuck in there somewhere are lunch and dinner. After dinner I have a bit more control over my time and can wear myself down reading or working on my next blog post.

2nd Family Consultation

Cavit's experts reported to Mike and his family today on his progress in the last 8 weeks, and on what lies ahead. The bottom line is that they expect him to be able to live again in due course as an independent adult and to hold down paid employment. I think the literature on brain injuries describes such outcomes as a 'good recovery'. This is amazing in the light of the severity of his injury -- eg 54 days in a state of post-trauma amnesia when 6 hours is regarded as serious. The cognitive testing shows up a few things that need working on, but it would be a miracle if it were otherwise and none of them can be expected to be intractable. Perhaps the best news of all is that they report that he has a high level of awareness of things that need to be worked on. Apparently it is common for people with these injuries to fail to perceive areas where things are not yet what they were. Obviously it is much harder to put something right when you do not know that it is wrong.
The immediate target is to see him walking solo in the next 6 weeks. He gets into the swimming pool for the first time this Friday, now that the site of his P.E.G is sufficiently healed. That should increase his range of therapeutic activities. There is no doubt that Mike is keen to see what he is capable of in the water, given his difficulties with walking.
In the light of all this, fatigue management appears to be the biggest issue Mike faces for the foreseeable future. The physio reports that whereas a few weeks ago he could handle a few minutes physio max, now he can handle 20 minutes. Then he must rest.
One conclusion to come out of this is the desirability of scheduling visits to Mike so that he has rest periods between visits. To achieve this he almost needs an appointment book so that he knows the time at which you will be visiting so that he can rest up before you arrive. So please contact his social secretary (Lee) and book in a time for visiting, and try to arrive on that time if you can so that Mike can plan his energy levels accordingly. This is not the normal casual Kiwi way, we know, but this fatigue problem is not normal either.
Finally, Mike was naturally chuffed by all the responses to his blog.
The positive energy you are all giving him undoubtedly boosts his impressively positive spirit.
Yours appreciatively
Bryce

23rd May: Back to me

Hi Everyone,
Lee here again. It was just great to see the buzz Mike got from your comments on his posting. (I hope I got the terminology right because I get told off if I use the wrong word for it all.) Many thanks.

We took MIke out for breakfast on Sunday morning - PEB Personal Eating Best? He got himself through a big breakfast with remarkable speed and it all felt so wonderfully normal.

The therapists have taken pity on Mike's one finger typing and did some work on getting back his touch typing today, so he may be able to up the speed soon. His walking is coming along well. If he can just get stable enoujgh to practise on his own I am sure he'll go ahead really rapidly. Mike's now got his sights aimed at getting in the swimming pool. We suspect he has a bit of a shock coming in terms of what he can manage, but it will be another step along the way.

I mentioned a day or two ago that our next family meeting is on Wednesday. It is a good feeling to think back to where Mike was at for the last one - only recently back from the medical ward, still in post traumatic amnesia and simply not well enough to take part in the meeting. This time he will be able to be his own voice, with us just there ar back up.

22nd May: A posting direct from the man himself

Hi guys,

Well it's nice to be something like a happy ending to this story. My recovery is headed in the right direction yet I'm conscious of the fact that things could have easily been so much worse. If I've learnt one thing from this whole experience it's that no matter what happens things could always be worse and you should always keep on pushing (my apologies for the triathlon-speak in that last bit).

To let you know what it feels like (and to use my physio Sue's analogy) it as if an army has run through my head with a scorched earth policy burning all the crops and killing all the locals. There's quite a lot to get used to. The most major thing is the fatigue given I wasn't a guy who ever let lack of sleep get in the way of anything important to me. Most things that use muscles require relearning (for example for accuracy reasons I'm having to one finger type the keys for this document even though I knew how to touch type before the accident). The relearning includes walking and eating. For example, try swallowing your saliva three times. I'm told that the third time was what it was like for me eating originally. On top of this I have a number of problems I'm told are common to head injuries the most annoying of which is a cloudiness over the brain. My memory is ok but as events move closer to 20th Feb they get harder to remember without prompting. I have no memory from before the accident itself until early April (for better or worse). This all said, I've been told by friends who knew me well before the accident that I still have the same sense of humour and the same smile.

I've tried to say thank you to a number of people and been told either that the accident wasn't my fault or I would have done the same for them. While both of these may be true neither reduces my need to say thank you to a few people. Firstly, my thanks go out to my parents, Lee and Bryce, (who could ask for anything more?), my sister and brother-in-law, Tracy and Andrew, (thanks for cutting short your OE for me) and my brother, Phillip, (thanks for your attitude and for still coming to visit me despite getting told off by the Cavit staff at least twice). My thanks also go to my extended family, to all the medical staff involved in my recovery (including the unknown doctor who stopped and helped me immediately following the accident) and to my co-accidentee, Ben Schurr. Lastly, I would like to thank everyone who has come to visit me, sent something to me or posted something on this blog site.

I don't have an internet connection yet but hope to get one very shortly. I will take over putting posts on this blog but I'm sorry to say the frequency will drop. I will put something on this site when I have some major news about my recovery.

Kind regards and best wishes,
Mike

20th May: Three months since Mike's accident

It is hard to believe that the three month mark is here. I look back to our lives pre 20th February and it all looks so far away, like a vaguely familiar movie.. It is also amazing to realise how far Mike has come since that dreadful day. the support of friends, family, friends of friends and total strangers has been so vital to Mike and all of us.

We had a celebratory meal of takeaways around Mike's bed tonight, and the anniversary made me think about progress to date:

His walking is coming along okay. Today Sue the physio got Mike walking with his arms stretched out and resting on her shoulders. This seemed to keep him more stabel than on the walking frame. The two of them looked like a couple of rather slow and stiff tango dancers. He will get there with the walking.

He is eating pretty well now and we're doing just fine on the weight gain. Apparently Mike's gained 2.8kg in a week, which is pretty impressive. It makes me realise how eating too much puts on weight! Duhhhh. For skinny Mike it means he is able to take in plenty enough food despite coming off the drip.

Mike has got a lot better at monitoring his tiredness. He's not good at judging when he is tired, but he does have his head around having to store up energy for the therapy activity or visitors and then resting to recover. We think we're not far off him being able to come out for a car ride and that would be a wonderful step forward.

His talking is fine as long as he is not tired. His voice is still hoarse, but that will improve apparently. The therapists are testing his cognitive ability and so on and I guess we will get an up-date at the family meeting next week.

Mike is having a few problems with double vision, but once again this is common and should disappear as he recovers. At the moment it affects his reading and anything else that requires his eyes to focus.

So thanks to everyone

Lee

May 18th: Quiet day for Mike

A bit quieter couple of days for Mike. Probably the main event was Bryce getting back from ten days in the US. There is a scurry of testing happening, so we presume this is to meet the deadline of our next family meeting on Wednesday next week. I look at some of the tests and wonder how us non-brain injured people would score. Some tests are cognitive and earlier this week there was one called Behavioural Recall which seemed to relate more to practical recall relevant to aspects of every day life - so skills such as remembering names, remembering to ask a question during an appointment, remembering where you put something and so on.

Mike's walking is gradually getting more stable. I presume once he is more steady he will be able to practise on his own and make more rapid progress. I gather that at the moment there are quite a range of skills the therapists would like to work on, but they have to just focus Mike's small amounts of energy on the highest priorities.

Regards to all

Lee

May 16th: Onward and outward

Mike is rather like Hansel in the witches house in Hansel and Gretel. Each day he pokes a skinny finger out and we all try to fatten him up. Must have been a record today: Three regular meals, about five high fat and protein drinks, I took a muffin out, Tracy took a baked kumara to heat up and Cousin David really hit the spot with Burger King!

Mike's walking continues to strengthen. He walked from his room to the day room with no walking frame, just some stabilising hands from the physios and me trotting along behind with a chair for him to rest on half way. So we were really pleased with that. The balance takes a great effort and at the end of that walk he was exhausted.

Regards

Lee

14th May: PSB

Hi everyone

PSB? Personal Social Best. I took Mike on a wheel chair ride around the block to buy a coffee, because it was A GORGEOUS WELLINGTON DAY AS USUAL.
Quite a collection of his uncles(2), aunts (2 sort of), cousins (1), sister (1) and brother-in-law (1) were at the cafe because another cousin had rugby nearby. Mike coped well with this collection of rellies all talking at once, plus the crowded cafe plus the cafe music. I thought it would confuse and tire him, but he coped well and was not too bad by the time we got back. How the pleasure of the simple kicks in - just being able to be out in the sun, with family, choosing his own food etc. So another set of high fives.

It is easier to manage this sort of trip on the weekend because there is no therapy to tire him out.

Regards to everyone

Lee

10th May: Bye Bye P.E.G.

Another good step along the way today. A nurse came from Endoscopy (sp?) and pulled out the P.E.G.feeding tube into Mike's stomach, so now it's All by mouth. A fine change from 'Nil by mouth'. When I write 'pulled', I mean literally that. Amazing really. So now we have what many of us would regard as a nice challenge: How to whack heaps of calories into Mike, so he doesn't lose weight. The food still has to be of fairly uniform texture because he can't manage eating hard stuff, or chewy stuff, or too much variation in texture. We celebrated with a latte and a muffin in the hospital cafe.

The physio is going fine. Each time I watch I can see that Mike is getting his muscles a bit more stabilised and under control. In some ways it is very like gradually building up the weights in the gym. He starts out okay and then as he tires his muscles get wobbly. Because Mike is having to concentrate on each aspect of muscle movement, it is amazing to realise some of the complexity of even a small movement - stabilising other muscles, focusing on the one you want to move, controlling it, positioning the rest of your body to manage, bringing in to play the associated muscles etc.

Yours muscularly

Lee

9th May: More Milestones

I arrived at the rehab ward this morning to find a tired, beaming Mike emerging fromthe shower. He had managed his whole shower and shave himself and was most pleased. We'd had a conversation just the day before about the frustration of not being in control of things, so this was a good step.

Next the Team Leader came and said to us that they think Mike can cope with sometimes having two visitors at once now and to schedule visits between 4 and 8pm, so that makes life a bit easier. They also think he can cope with e-mailing too, so once we have him set up with a computer of some sort, expect lift off.

Finally this afternoon the Physio shifted Mike on to a walking frame. He still needs someone supporting him, but this is really good progress even just since last week.

One pleased Mike.

Lee

May 8th:Peaceful progress

We've been a bit quiet on the blog lately, but Mike has continued to make really good progress. Each day his walking is getting a bit stronger and his general posture is better. He can now sit in a regular chair to eat his meals, without needing the side and head support of a wheel chair. So with support he can walk out to the dining area at Cavit then just sit and eat. The sheer move to normality of this is a great joy to us all.

The cognitive testing proceeds when he is not too tired. He is doing pretty well, but as each level gets more complex he has to concentrate really hard. The therapists keep saying it is not pass/fail; that it is an indicator of where they need to focus the therapy interventions. However, I can see that as far as Mike is concerned every single question is definitely pass/fail. The difference in his mental reasoning between alert and fatigued is very marked and the switch is really sudden, but they say his stamina will increase.

We are gradually increasing Mike's visitors,now that the OE exodus seems to have stopped and we have a better idea of the rehab schedule each day. We don't have many slots because the day time during the week is taken up with rehab and resting most days. If you can find time to go out and see Mike, could you make sure you phone me (Lee) first and we'll arrange when to fit it in. As we've said before, the fatigue thing is so crucial we just have to be really careful about how we manage it. Generally, the evening or weekends will work the best. Mike can only cope with one person at a time and he needs to rest after each visitor, so it needs a bit of organising.

Regards

Lee

A request for help with books

Tracy here, and asking for a favour: We'd like some book recommendations.

Mike has a CD/tape/radio machine. He can operate the CD and radio by remote control, but not the tape deck. So we are looking at borrowing talking CDs for him to listen to when his eyes get too tired for reading.

Wellington Library has the following lists available of books on CD (plus a few others that wind up in the list for some mysterious reason):

• Fiction CDs: http://whekenui.wcl.govt.nz/cgi-bin/cw_cgi?10030+REDIRX+usedatabase_2540_w_fiction%20cd
  
• Non-Fiction CDs:
  http://whekenui.wcl.govt.nz/cgi-bin/cw_cgi?10030+REDIRX+usedatabase_2540_c_CD1
  

We need CDs where:

• the language is reasonably simple (no complex imagery)
  
• the story is upbeat (otherwise he gets depressed)
  
• and is overall something that Mike would like (so romantic fiction is out).
  

We've tried Asimov (a bit depressing apparently) and Dave Barry (a hit), and I recently took out a Bernard Cornwall CD (Sharpe's Honour), but I don't know enough about all the authors available. So, if you have some time, happen to know that one of the books available on CD meets these criteria and you'd recommend it for Mike, could you please say so in the comments?

Cheers

Update
Just a couple of notes. Firstly according to the librarian the non-fiction list starts off with a lot of self-help books and then moves onto other subjects. So if you find the first few screens like being at an American motivational conference, it's not all like that.

Secondly, it might take a while to get your recommendation to Mike. He's happily listening to music CDs at the moment and then there's the issue of when the library next gets the CD in. So, if Mike doesn't provide a review of every single rec by tomorrow, please forgive me. :)

4 May - End of night feeds

Mike had a good day today. The dietician has said that he's gained enough weight that he doesn't need any more night feeds. Mike is very happy about it - the night feeding machine wasn't uncomfortable but it did make annoying beeping sounds all night.

He started some cognitive testing today. Apparently the whole test takes an hour, and Mike tires too easily to do it all at once so he only did the first part of it today. However, he seems to have done reasonably well so far. The therapist kept reminding Mike that it wasn't a pass/fail test, but rather was designed to give them information on where to focus the therapy. However, Mike was doing his focusing breathing between sets and clearly he saw it as pass/fail and fail wasn't going to be it.

We showed Mike the photos of various people visiting him at Auckland Hospital while he was in intensive care. He was very happy to see all the people who had come to see him and a bit sad that he can't remember the visits.

In other news, Mike had some more workouts on the parallel bars. So just keep yesterday's photo in your mind.

May 3rd:More walking

So today we went back to the gym and Mike had another go at walking along between the parallel bars. This time he did three forays of back and forth. On the first trip Mike's feet were like an inebriated duck trying to goose step. A little advice from the physio, a determined gleam in Mike's eye and on his second go the feet were much more under control. Slow but miles better placed. His torso is still really floppy and twisty, but I guess it will join the programme at some stage. By the third go Mike was absolutely exhausted, but on a high.

A good brain injury fatigue metaphor today from the nursing team leader, Deb. She said to Mike that if he did not rest after learning something, the learning would not get written to his hard drive and his injured brain would just delete it. So in between each trip down the parallel bars, Mike had to rest up to manage the next one.

Lee passing over to Tracy now.

Tracy here. Mike managed another PB today - he took off his jersey without any assistance. According to Mike this is the first time he's managed that. This burst of activity may have been caused by some extra caffine. The weather is miserably wet today, so no walk outside. Instead I took Mike for a trip down to the coffee shop in the hospital buildings. A flat white seemed to hit the spot perfectly. Interesting that two months of deprivation haven't altered Mike's caffine addiction one iota.

2nd May:Onward and outward

Another great milestone today. It was a very mild still day (Yes, they do occur in Wellington!), so Mike's physio and I wheeled Mike around the block. At first we went through a nice quiet garden area, but then we continued down busy High Street with the traffic whizzing by. Mike coped really well, so once back inside Sue, the physio took us on a tour of the rehab gym and the hydrotherapy pool. I could see the determined glint in his eye at the sight of all the fitness machinery. Sue must have noticed too because in the gym she got Mike to walk about 5 metres one way, supporting himself on two parallel bars. After a rest he walked back again. So that was his first walk without other people supporting him. Once we were back in his room he was really exhausted but feeling very pleased with his progress.

29th April:Yet another PB

The PBs are coming thick and fast at present, but apparently slow down after a while. With the support of the physio and me, Mike walked from his room to the day room for lunch. He said his feet feel less heavy and more in control. He also managed to conduct an economics education session on opportunity cost, for the physio and speech language therapist, so all is not lost! He managed to walk back again after lunch, but then fell asleep really fast.

I had a chat with the physio about the difference in rehab between brain damage through stroke and through injury. She said a stroke is usually clearly in one part of the brain, so the medics can fairly accurately predict the deficits and what rehab will be required. With Mike's diffuse brain injury, they can't see where the particular severe injury is located, thus they have no idea what the deficits will be and how they will combine. So the rehab has to be very individual and they have to constantly adjust to the deficits they find. She also said that while stroke patients experience fatigue, it is not as severe as in a brain injury it doesn't hit as fast and the worst fatigue disappears relatively quickly. Thus the rehab can be lengthier and more energetic.

There endeth my lesson for the day!

Lee

28 April:A PCB: Personal Coke Best

They installed a Coke dispensing machine in Cavit today, and Mike got to drink the first bottle. Now that is a milestone for Mike, his first Coke since 20 February.

The nurses are pleased, even amazed, by his progress. They are telling him now that they thought he was likely to die when he had the lung infection. I took the chance to ask how much weight he had lost at his worst. A nurse checked the records and declared that his lowest recorded weight was 52 kg. He is now heading in the right direction, being back up to 54 kg. So that is about a 20 percent loss from his pre-accident 'Ironman' weight. I gather that a 20 percent weight loss is not unusual for this injury.

He is feeding himself very well now. Coke is one of the hardest things to manage, for reasons I don't really understand. It looks like they might be able to remove the tube from his stomach in a week or two.

As he improves they are stepping up the rehab programme. A mini target is presumably to get him to be able to take a step or two on his own. The extra physio tires him out, of course. So he needs lots of rest and if he misses out on rest he does not sleep well at night, which sets him back, and they have to cut back on the physio. So there seems to be no end in sight to the need to limit his visitors where possible. Currently available slots are being filled by friends passing through or heading off to do their OE. We are amazed by the number of you who are heading off overseas. So, Wellingtonians, please continue to be patient.

Bryce