This afternoon I have a 'zoom' meeting with the Mindfulness Research Centre in Bangor University. I have had an email conversation with them and I have described my DIY rehab activities where I have used mindfulness and other meditative techniques together with retraining activities to restructure my neural networks. I've done my homework and have the science backing up my thinking and development of a basic model for neural rewiring. I have tried and tested it on myself regarding certain skills and short term memory. It works. Now is the time to take it forward and officially test it.
I have had a bit of an advantage in the research because I am a biochemist and molecular biologist by training but left research in that field in 2008. However this background has helped to understand much of the neuroscience.
I would have to get qualified in this, mindfulness, field by doing a 3 year MSc. Today we will discuss the practicalities because I still have LED light issues and also noise issues and a few cognitive holes remaining but I am very effective in my own environmental bubble.
My aim would be to produce a model to help build a basic neural 'scaffolding' that can be built on further by repairing, re-routing or totally generating neural networks to bypass damaged ones. This will be focused mainly on non acute brain injury sufferers such as post concussion syndrome which is not seen in scans. Sounds a bit pie in the sky? No the science shows this is possible if put together in the correct way.
The team at the research centre think that I may have a distinct advantage by having experienced a brain injury and have primary knowledge.
Suppose I should clean up a bit and get the cobwebs off the ceiling ready for my first 'zoom' experience.
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pinkvision
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Hi just a little follow up. I had the 'zoom' meeting yesterday and felt a little deflated afterwards. The ideas I put forward were all good and interesting however the research centre stick to the fundamental practices as described in modern Buddhist tradition. Their main objective is to train teachers in their practices and the focus is on kindness, compassion and peace. These are all good within themselves but they don't address things like short term memory issues. I explained how the loveyourbrain foundation and the American veterans association were using mindfulness mixed with practical exercises to overcome cognitive issues and that they were very effective. These are know as adapted and augmented practices I was informed and are not a point of focus of the centre. I think I'll give up on this one.
That's slightly disappointing, it seems to me that America is way ahead of us with regard to anything to do with brain injury recovery, a lot of places and organisations just seem like they have set ideas and refuse to move an inch from them . With regard to brain injury and recovery it sometimes feels like we are stuck in the 1920s .
It feels like they know best and everybody else knows nothing at times. I dread to think how it would be if we never had headway in this country
I have many contacts in the States and basically it is the same there unless your medical insurance covers it or you can afford it. A 40 minute session with a good neuropsychologist is $900. If you were in the forces when you got your injury then you've hit the jackpot for rehab through the veterans association. Many new methods are tried out, there's a captive audience so to speak and the results can be collected. John Hopkins and Stanford and other major universities have an input for their research. Many of the teaching lectures for VA staff are free on youtube and many of the practical methods are too. That's where I got much of my info especially about dealing with sensory overload as a start point and then learning and building up automatic functions through repetitive actions followed by dealing with the other cognitive deficiencies. It makes perfect sense.
About the MSc, it's not really a problem, I think I just spent quite a bit of time putting the material together. They had a genuine interest especially as their last director had a stroke a couple of years ago. It's all about funding really, they get funding to work within certain criteria and areas of interest. I had to stop and think why I was doing this, putting in the time and effort to gather information into a prospective working plan to help other people. I've already helped myself and have become familiar with a variety of methods including with the visual element as you know. The whole thing has been such a struggle and fight and some people may benefit from knowing such information if presented formally. There was no harm in trying and I have gained from it by the experience alone.
I'm still suffering with light sensitivity with artificial lights too. Also pattern glare. Ect.
I'm still waiting for neuro opthalomogist appt that was accepted in early Jabuary.
Tinted glasses help a bit to get round a food shop .
My daughter and to do a PhD in literature for teenagers that are I'll or have a chronic ongoing condition. It fell between two faculties. Like you alot of work was done in the process of applying. They liked the concept but that was as far as it went. She did not want to compromise and pulled out. It can be empowering at times.
Indoor lighting seems to be the biggest issue to solve, it's not the light itself I understand but the flickering. I really hope your appointment goes well, you really seem to be getting a bum deal all round with your vision. This is another reason I asked Headway in the post I made 'Quick Question' to have a look at optometry. Not just because some people get a really good result but also because other people don't really get the satisfaction or make good progress. There needs to be regulatory standards and the people providing the testing and treatment need to be up to the job also. I've seen 3 different people, the testing was different and at the end of the day only one really knew what they were doing. The other 2 were baffled.
As to the uni research, I may have felt a bit flat the other day and felt it was not worth pursuing but today is different. I've decided on a different approach after finding some really interesting information on adapted and augmented mindfulness practices being researched and tested for use in the corporate and financial world. I've emailed a different approach and will see what comes back. This has got legs it just depends on how forward thinking the research centre is. Surely they must have a broader approach, how can they be a research unit with such a narrow field.
This vision business needs dealing with, think there are multiple sensitivities and processing issues. As for GP's and neurologists it's pretty much pot luck with PCS as the doctor on woman's hour said 'it's a poorly understood area'. My new GP that I moved to 2 years ago is very honest with me and said when I first saw him that he knew nothing about concussions and brain injury. That's better than guessing. I phoned him the other day and he can't believe how much I have recovered since getting the new glasses.
New day, new week, up at 5.30, laundry in, typed up journal, just back from bike ride and now ready for the day.
New update. Sent an email with further interesting info and now they seem to be very keen to go ahead with the proposal. It has to go to committee first though, will get an answer in 3 weeks.
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