[Lucy]

Here it is at last - suggest that you make a coffee - it might be long and I will leave my personal comments to last. But isn't it strange to think that this person from Canada would be presenting a seminar here- like in NZ!

The seminar was from 9.30 am until 4 pm. I missed 11.30.-12.00 as had to go take a brain nap in my car. there were only 3 brain injured people present from a turn out of approx. 100 - the rest were phsychologists, OTs and PTs and some from the Accident Compensation Corporation - I have mentioned them before - our compulsery government insurers.

He started off with the general goals of rehabilitation. i.e. improve health, abilities and participation creating a more facilitative enviroment. No 2 brain injuries are aloike and good rehab must recognise individual differences with much attention being paid to assessement of the individual, social net work and use of resources. However there are patterns of injury that are not random. And here he went on to demonstrate regarding the areas of the brain that effect which functions. i.e knock on the right hand side effecting personal space problems, emotions etc. Right hand side depression etc. It seems that most head injuries effect the centre front - pre frontal he said was always damaged regardless of where we have been hit - the part of the brain for executive functions. No doubt this is all too basic for most of you as you will have probably found this out for your selves. Over an hour was devoted to this sort of thing.

He discusses how most people want to "move on" and they were obliged to teach about adaptation - learning how to manage change. Enviroments are easier to change than people and those attempting to rehabilitate us forget this. They are not to underestimate the dreams of the client and research has shown that individuals with proper rehab achive better goals than anyone expects.

It was stated that it is important to avoid failures and failures tend to discourage everyone (what else is new - but I did say that I wouldn't comment until later) everyone being the client, professional and family.

Interventions must not do more harm than good - this included medical and response to behavioural issues. Then this biggy:

INSURERS WOULD RATHER PAY FOR ASSESSMENTS THAN TREATMENT.

followed by public institutions would rather not treat the hard to serve. Well doesn't that say it all!!!

There was further comment about the needs of the individual last a life time as brain injury is permanent. He recommended structured settlements whenever possible.

Think that there was a break about this time. The next section totally dealt with those that have problems with recognising emotions in others - I don't know if any of you are like this. It was like a person can not recognise if somebody else is happy, angry sad etc and does not have those feeling themselves. He compared it as similar to autism. Sorry but I kind of put my brain in rest mode while all this was going on - like it was hours. There is some kind of training that can be done to improve things in recognition of others.

Then the part that I was most interested in concussion and postconcussion syndrome section - and only an hour to go - most disappointing.

He described what is concussion, how often it occurs andhow it is measured - think we all know that! However one thing that made me sit up was he said for the first 3 weeks nothing can help you recover other than NO WORK OR SPORT.

Damaged neurons produce neurotoxins and a cascade of metabolic changes. He said that the blood vessels are caused to contract which lessens bleeding and bruising - this is ok anywhere other than the brain as the brain needs the blood and oxygen for healing.

And NEVER EVER SHOULD ANYBODY DO BUNGY JUMPING. (which was invented in New Zealand by the way)

The metabolic changes - these were the circadian rhythm altered - sleep (as we all know) heart rate variability decreased cytochrome P450 levels in kidney and liver vary. I was wondering if this is worth looking into further - as these changes are meant to return to normal in 7-10 days Nancy do you know anything about this???

NO MEDICATIONS THAT HE KNOWS OF TO HELP SPEED RECOVERY OR FOR THE HEADACHES.

Second Impact Syndrome - he seemed to think that a second knock within 14 days - personal experience I believe is upt to a couple of months.

The PCS is symptons persising beyund 3 weeks -you know that. BUT

NEUROPSYCHOLIGICAL TESTING MEANS NOTHING WITH PCS!!!!!! He said that the only reason that we would ever fail in the testing would be if you were tired. He said that testing for balance tells all. No point telling what the symptons of PCS are as we all know and we know the usual treatment of rest, anti depressants and pain killers which only hide the symptons and actually do nothing.

Why do they persist? He believes that they persist because the brain does not restore its autoregulatory system and as above where I mentioned the metabloic changes, this also includes:

Autonomic Nervous System balance
Heart Rate Variablility
Inflamation
Mood and Fatigue
Cytochrome P450 Function
Circadian Rhythm (sleep - why can't they just sasy sleep for goodness sake)

I'm sorry but I couldn't understand a lot of what he was saying around this as he was rushing and time was very nearly up.

When your autoregulation system is off:
sleep disturbance
feel nauseous
headache
heart rate variablility is decreased

To regain control:
rest
exercise in the long run


EXERCISE THERAPY is what he thought may restore the balance faster after concussion. He believes that exercise improved dognitive function. YOu may have read on one of his web sites that he takes a programme for athletes which is exercised based, exercising until symptons show and then reducing the exercise level by 15% for 3 weeks and then increasing it again, keeping up with this process he stated that 2 professional athletes returned to sport in 6 weeks and most people get better in 9 weeks. Better was defined as no longer diagnosable with PCS. Care is to be taken not to cross the threshold.

MY COMMENTS

I was really disappointed as I had expected some kind of miracle cure suggested. I think that the exercise theory would be great for the younger ones, i.e. Nancy's son - who I think was doing something similar, Owen and some others of you - and to do this as soon as you can following the initial resting phase of 3 weeks.

I feel really angry as I realise that most of the supposed treatment I have had has been assessments - not long assessments like you seem to have had in the US but 2 hour ones - and over the first few years they were exactly the same tests - like I could actually remember most of them - like hello - I 'm not stupid!! I maybe slow, weird and nasty when I am tired. I guess if you do really well it can be reported that there is nothing wrong with you andyou don't need compensation etc. Maybe somebody could have explained why at the weekend I seem so lost and have no idea what to do with myself - week days are ok as I have to be regimented to work 3 hours - weekends - like derrrrrrrrrrrrr. I am really angry!! ( Guess at least I have the energy to be feeling angry - that is a good sign!)


There seemed to be separation between TBI and PCS - I thought that TBI caused the PCS and if you recover from the PCS you will still have the TBI - it really screws my brain up. Like you do not chose to have PCS. I think I could accept my cognitive "deficiencies" without the PCS.

I would be interested in finding out more about the autoregulation part as I know that when you are overtired it is like being hyped on adrenalin adnd I am wondering if this is all tied in. Any comments anybody.???

Oh and you know what really scares me - that so much of this was so basic that the professionals needed to be there at all!!!!! I am sure that most of us knew this already and had found it out for ourselves - or am I being harsh?

I am really really tired now - I hope this has made sense to somebody!! I have about a 50 page seminar report and I could try scanning it and emailing it or even faxing it to somebody who could post it some where for me - I am not that clever on the computer. There are several articles that were attached that he did not mention during the seminar they are:

New Concepts from Brain Injury 1994 (not very new now) Vol 8 no 7 647-659
Brain Injury no month mentioned fro9m 2007 Informa Health care regarding facial recognition.
Willer and Leddy Current Treatment Options in Neurology 2006 and finally
Neuro Rehabilitation 22 (2007) 1-7 Regulatory and autoregulatory physiological dysfunction as a primary characteristic of PCS - which goes into rest versus exercise. This is from the University of New York at Buffalo.

Got to go, face is burning and head is now feeling detached from spine.

And I will tell you about the psychologist( who I do Like) who has told me about not hoping any more later.

Beautiful day again today - just about like summer - Lynlee

[Nancy F]

Lynlee,
Thanks so much for excellent write-up of Willer seminar. Yes, those seminars can be pretty tedious and alot of common sense and then occasionally something really interesting is said. The autoregulatory system also controls temperature and I see this with injured neuro patients, it is just basically ignored because there is no treatment to give for it. My son a few days after his injury had a fever and I thought he had the flu. I was in denial that he was brain injured. I do not have much time to post now but wanted too thankyou and I'm sure that post exhausted you. You could of led the seminar, the people who are suffering and gathering the information, end up knowing more that the professionals sometimes. This area has had limited research and support. I do feel this is changing and there is alot more interest. Hang in there, stay as positive as you can be, you are awesome.

[Lucy]

HI, I forgot to say that Barry Willer also said that most of the time our memories/knowledge are intact from pre accident. I guess this would apply to mild TBI then PCS. I know that I do not have a lot of problems with what I new pre. The hard part now is the "new" knowledge. I have often joked with my kids (well - they are 28 and 25) that it was lucky that I knew everything before hand! Sometimes I have trouble searching for things in my brain -like take an hour -day to be found - but they turn up. The more recent the harder to locate - if I have heard, understood and digested! With my work it is now getting harder as I have not been able to keep up with the changing law and any new law very well - which is not good for the self confidence. I think that this will show up more as the years tick over. Lucky I learnt how to bluff before - I am good at saying "I'll come back to you about that. Lynlee and thank you for your thankyous!!