The Hidden College #2

We had a philosophy session last night, the topic being Utopia, a seemingly childish and embarrassing subject these days. The topic was inspired by visions such as Baon’s New Atlantis when the idea was still fashionable.

Anyway, the reason I post this (without a photo alas) is just to describe Mathew’s progress in case you haven’t seen him of late. I was sitting at our usual table for the event when Mathew arrived – up the narrow stairs – and made his way over with a wobbly but sure gait. He was the first to arrive having caught the train from Eltham. He looked well, greeted me with a big honest smile and ordered a latte. Shortly Pierz and Stephen arrived and a rewarding conversation ensued. There were laughs, duels and metaphoric light bulbs in our little utopia around our usual table.

I probably wont be posting much here anymore as Mathew’s progress has moved beyond the need for an intermediary like me to keep people up to date with how he is going. He has said once or twice that he might take over the blog. He is taking over lots of things in his life again. If you want to hear how he is going you could always email him.

HBOT #11

Fortunately we were able to recommence HBOT last week thanks to Angeline and I hope to continue with that when I next have Mathew.  Anyway, here is a video showing some great results using the treatment for chronic brain injury from Israel.

Pyramid Portrait / Reading Laszlo

It was a fairly standard weekend around here at Rockley Road, Prahran Market, coffees, picking up Ryu. We have been to acca a couple of times of late and this weekend we went again since we had 45 minutes to spend until Ryu’s lesson finished and it was great fun wandering around the current exhibition and trying to decrypt the interpretations of modern life on offer.

ReadingLazloWhen we got back Mathew started reading Science And The Reenchantment Of The Cosmos by Erwin  Laszlo. He read the introduction and I noted the time as I was starting on dinner – he was engrossed in it for 25 minutes. This was the first time I have seen Mathew that taken with reading and at one point Sanae nudged me and  nodded as if to say ‘wow look at that’. It was great.

Tonight we were watching a Japanese extreme travel comedy and talking about travel and I found the attached image of Mathew in front of the Giza pyramids taken just after he went walk-about in Egypt August 2011. We read the accompanying email chain together – a both humorous and grave exchange. The information in these emails was enlightening.

Pyramids

Chariots Of The Gods

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Mathew arrived at Rockley Road on Tuesday evening for his second week post Royal Talbot. He spent Wednesday with Michelle and Thursday with Sanae. Lots of South Yarra cafe visits I am told. On Thursday afternoon Sanae put on Chariots of the Gods  which Mathew loved. It is a classic 70’s documentary whereby aliens provide humanity with an evolutionary spark in prehistory. Mathew liked this very much and now plans to become a researcher in these fields. I am amazed that 7 billion people are largely unaware of our alien heritage.

Philosophical conversations lead to a visit  to the Theosophical Society Bookstore today in search of similar inspirations. Mathew read a few pages of The Brain That Changes Itself  but ended up buying My Stroke Of Insight which Pierz recommended a few weeks back. It is an ambitious plan to read such a book but even to crack a chapter or two will be great. We spent a few quiet moments in Mingary on the way there – an amazing place that lifts you out of the city and into a meditative mood in a short flight of steps.

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Federation Square for a coffee and had a bite at Blue Train in Southgate. What a fine autumn day for it! Mathew is also pictured below making his breakfast and doing his washing. First tram ride I think too. Nice strides there.

By the way I took dictation for most of that… And the alien fascination is not new either.

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Royal Talbot Season Ends – New Setup Begins

Mathew was discharged from Royal Talbot this morning, greeted by a small balloon party and those blowout whistles which brought a smirk and the response ‘I’m out!’

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Stephen MacKenzie did well to inflate so many balloons in traffic on the way there and thanks must go to him for organizing the small gathering to mark the occasion. He took some great photos but I attach a quick snap from my phone – I’ll see if I can get a copy of his professional ones to post here. After coffee at the boathouse. Sunny auspicious day for it.

Big thanks to the staff at Royal Talbot for all their efforts for Mathew!

The new setup is still being drafted and will explain how we hope things can work to see Mathew’s recovery continue. Let us know if you would like to join in. If you have any bright ideas, whatever they may be – especially the kind of inspirations that come from dreams – please record them via a comment here. Not that we want you to dream about it but if you happen to…

HBOT #10

This weekend saw Mathew’s tenth HBOT session – he has now spent  20 hours in the tank – but unfortunately this will be the last for a while until we can reach consensus on the benefit of further investment in the treatment.

Many in the medical orthodoxy in Australia still dismiss HBOT for TBI while often knowing very little about it but the tide does appear to be turning as evidenced by the rapidly growing number of research articles in the field. In Russia, China and other countries the treatment is uncontroversial. I attach one recent study on the benefits of HBOT for chronic stroke: HBO induces neuroplasticity in chronic stroke. Also one story of an amazing recovery from TBI to inspire here. If you don’t mind reading research articles and want to look deeper into the issue then drop me a line and I will forward you some of the resources I collated when evaluating the treatment but sites like http://www.hbot.com/ are much better.

Anyway, we had a great weekend and I continue to be impressed by Mathew’s improved memory. This morning he was recalling yesterdays events as they related to todays plans. One example from quite a few was that after breakfast he went and got the phone and rang Sue to confirm what time she would be coming to get him to take him to the footy. He hasn’t been doing hat sort of thing much before and it really is just amazing – my participation in that was only to remind him of the number which he had wrong by one. He’d been asking me to call her the night before and I had said that in the  morning would be better.

He is carrying bags now at the market – something quite unimaginable given his wobbly gait only a month back – and hangs up his washing. The walk from our place to the market and back must be 3 kilometers. His level of independence is growing quickly!

Mathew At The Market

Portraits Pull No Punches

I have been meaning to make this post for some time but have been too timid as I know that some will object to what it will say. We live in the flux of a world that can be very hard to navigate, full of conjecture and opinions many of which are not well thought out, not least of all because thinking things through is hard. We often start with our feelings which are murky and dreamlike and we work our opinions back from there – opinions which can easily become inconsistent or are unable to weigh all of the moral issues at stake. Opinions which have expedience or shame buried beneath them.

No doubt some will say I am doing that very thing here by what follows but the images themselves tell a story that needs to be told. I hope someone who needs these thoughts finds them.

Portrait 1

Mathew is in Royal Melbourne hospital. He is really just waking up from his coma and is on minimal psychiatric medication. It’s a great grin!

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When he is later transferred to Royal Talbot his medication will be reduced to zero which follows the recommended protocols listed in the Neurology Board Review Manual for the treatment of TBI:

It is important to repeatedly review the rationale and necessity of each medication at each clinical juncture, with a concern for potential adverse effects on recovery. It is often necessary to remove medications before further determining sources of dysfunction. Indeed, cessation of medication is often as valuable as starting any medications in the rehabilitation.

Doctors at Royal Talbot complain about the reduction but it is unclear what triggers they believe should lead to medication reductions.

Portrait 2

Mathew has been at Royal Talbot for over month now. On arrival his medications have been increased aggressively until he is on 50-70 mg of Olanzapine (Zyprexa) a day, many times the dosage recommended for schizophrenia, ~1200 mg Sodium Valproate, used in the first weeks to prevent seizures but now used as a mood stabilizer, and ~1600 mg Propranolol, a beta blocker. All this, we are advised, to prevent something bad, to manage his behavior. They will not help him recover. When asked what other tools they have to manage the behavior of patients suffering confusion as they recover from brain injury they concede there have none. At this time when you visit Mathew you will find him slumped and dribbling. Eventually the nurses complain about Mathew being over medicated and the doctors confess that the drugs have ‘caught up’ with Mathew.

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Nothing has focused my mind more on the difference between a double negative and a positive. If you are mathematically minded or like to use Aristotolean logic to make your moral choices then clearly there is a problem here. After all, two wrongs don’t make a right.

The pharmaceutical company that gives us Olanzapine Zyprexa, Eli Lilly And Company, was found guilty in 2009 for its marketing practices of Olanzapine – they pleaded guilty to illegally marketing the drug for off-label uses not approved by the U.S. Food and Drug Administration, particularly the treatment of dementia in the elderly. The $1.415 billion penalty included an $800 million civil settlement and a $515 million criminal fine. Pharmaceutical companies really are reminiscent of tobacco companies, and why wouldn’t they be I guess. 2008’s Zyprexa revenue easily covered their legal expenses – sales were $2.2B in the US alone, and $4.7B in total. Various studies have implicated Olanzapine Zyprexa as a cause of brain damage – really scary stuff.

Portrait 3

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During the last few months friends and family have been amazed by Mathew’s improved recovery – walking, thinking clearly and improved memory. When he was initially assessed at Royal Talbot we were advised by the doctors there that there was little they could do for him and that he would be lucky to progress beyond the ability of a toddler. These improvements have come ‘out of the blue’ to some. What has changed? Firstly he started spending weekends out of institutional care. Secondly, after strong and difficult debates with the staff at Royal Talbot his medications were progressively reduced and now he is on 5 mg of Olanzapine a day, 700 mg of Sodium Valproate and ~750 mg Propranolol. He has also commenced Hyperbaric Oxygen Therapy, one of the few ‘positive’ treatments available to brain injured people. We are not yet able to give Mathew the benefit of a recommended HBOT protocol but we are nonetheless able to provide him with 2-4 hours treatment a week.

Side By Side

Arriving at Royal Talbot you see that it is a big complex that employs lots of people . It must be quite a calling to work at such a place and I am filled with admiration for many of those who work there for whom it is indeed a calling. I have met angels and humanists despite the infertile soil of government bureaucracy – I imagine distressed patients and paperwork and myriad difficulties and health care workers that need to get home to their own families and troubles. How can we hope for a government department to always make the best choices for Mathew? There are industries that are driven by profits behind these buildings and damaged confused souls huddled within them, in small rooms behind curtained windows. Whenever I visit Mathew unannounced I find him brooding in his room. I wonder where Mathew might be if we had just had him home as we would have been forced to do if this weren’t Australia, if the middle picture had never been… Sorry Mat!


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Haircut Weekend

List of Weekend events:

  • Stayed Friday night at Eltham
  • Saturday morning went to Vic Market with Eltham gang for Leroy’s first bitrthday
  • Join Martin’s Ryu Top Taxi’s
  • HBOT #9
  • Prahran Market shopping and coffee
  • Had Greens smoothie entre and La Italian Mamma Pesto Pasta
  • Watch Malthouse’s first Carlton win
  • Market coffee
  • Short haircut from Ryu’s stylist
  • Listen to Ryu’s piano practice
  • Go to Vegie Bar for dinner with Sanae, Roo, Ryu and Martin

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Open Studio Revisited

Mat caught up with Keith at Open Studio this evening and shared Singapore memories in the easy Northcote atmosphere.

Mat’s short term memory is improving a lot at the moment – when I rang this afternoon he filled me in on last night’s outing with Stephen and said how he was looking forward to catching up with Keith. There’s fantastic stuff going on in Mat’s noodle!

Pierz says to check out Jill Bolte’s My Stroke Of Insight for some inspiration on recovering from brain injuries. Her TED talk was fantastic. Courageous woman.

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