A shared passion for the brain

How To Retrain Your Brain Funzing talk in Manchester

How to Retrain Your Brain was my 3rd Funzing talk I have been to. The 1st I wasn’t that impressed with, while the 2nd one (Neuroscience of Decision Making) was great. With my interest in power of the brain. I’m happy to say retrain your brain was

I had no heard of Lisa Upton but during the evening hosted at MadLab, we got to learn a lot more about her.

Just over a year ago, Lisa was faced with a decision that would change her life forever. She had to decide whether to have awake brain surgery to remove a tumour which lay deep inside her brain in the left temporal lobe, close to the area responsible for speech and language. This decision came with extremely high risks – having the operation meant that she could have a stroke, may have to learn to talk, read and write again, or worst-case scenario, not survive the surgery.

Not having the operation meant living a life with four/five epileptic seizures every day and the chance that the ticking time bomb inside her brain could go off at any moment and this could take her life.

Lisa made the brave decision to have surgery.

It was weird hearing Lisa talking about her experience and noticed some interesting parallels in my own experience and outlook on life.

In the months following her operation Lisa’s life changed beyond measure, she thought about life in a completely different way, she approached things with a different attitude and as a result of this, saw new and amazing opportunities presenting themselves every day.

Its incredible to see the opportunities just presenting themselves. I’ve lived by those opportunities ever since. I always remember Derren Browns show about the secret of luck, facing my fear of injections (Belonephobia), facing the fear of rejection, going on dating shows and much more…

Lisa wanted to understand why this was happening and couldn’t accept that it was just “all part of the recovery”. She spent months researching the brain and its many functions, spending time with neurologists, neurosurgeons, neuro-researchers, neuropsychologists and patients at The National Hospital for Neurology and Neurosurgery.

Now thats really cool, if I hadn’t spent so much time in hospital and had the issues I had; I likely would have gone back to Salford Royal to thank the staff again years later. But spending time would have been amazing (too be fair it still would be).

With a heart filled with gratitude, Lisa will share with you the amazing things that she learnt about the brain, and how we are all capable of reprogramming our brains so that we can achieve greatness and euphoria.

I reflect back on a blog I wrote years ago, while trying to explain to others how different life was since. My parents always thought I’d want to forget about the whole thing but I refuse to forget. I didn’t put my cards away for a whole year and still have them stored away even now. It gives me power and brings a new emphasise to life. Some people near me noticed how much I changed and some couldn’t quite comprehend the changes.

Lisa and others have called it living a conscious life. Its something I’ve noticed in myself, but weirdly very fitting with some of the dyslexic advantages, especially living in the moment. It might not come as a surprise the doctors also found an increase in the right brain activity (usually commonly associated with dyslexics, I know this is massively contested!) in Lisas brain. This  reminded me of the early months after my brush with death, it was suggested by the professionals that I might have forgotten/unlearned a lot of my coping mechanisms for dyslexia. Almost switched back to my natural state of some kind?

It also reminds me I need to do more about writing my gratitudes down following Sarah Raad’s workshop at Thinking Digital Newcastle last year.

I honestly really enjoyed the talk and it was a joy to hear from someone else as interested in the brain/mind due to similar reasons…

MCR Talks: Neuroscience of Decision Making with Gabija

Dr. Gabija Toleikyte

Last time I went to a Funzing event I wasn’t that impressed (talk was good but the setup was a bit crappy) but I thought I’d give it another try as the Neuroscience of decision making is too good a talk to miss. I find the Funzing weird as its promoted through Facebook and after clicking the link you are led to the funzing site which isn’t as smooth as Eventbrite. Especially since you finally get your ticket only a hour or so before the actual event via email or text (which leads you to a funzing microsite)

The talk was in Texture (the cool nightclub venue in the northern quarter). The place was full of chairs and most was already sat on. Interestingly I would say its about a 65% female audience. Grabbing a odd chair with a drink after not spotting anyone I recognise (this is a good thing, getting out of your comfort zone).

Just before Dr. Gabija Toleikyte suggested, a early warm up exercise encouraging us to talk to the people around us and ask what brought them to the event. The woman behind me, was generally interested but not so interested in chatting. I turn to the woman in front of me and we talked for a while about her thoughts on the illusion of reality. I threw in my thoughts on memetics and we chatted for a while.

We also briefly talked about my brush with death,  and how I have  found a stronger interest in how the brain works and how we use.

When Gabija started with a proper warm-up she asked us to greet people next to us with a gesture of 1, 2 or 3 fingers. 1 being a hand shake, 2 being a bow and 3 being a hug. On giving the gesture, you have to pick the lowest number between the two. Most of mine were hugs and bows.

When Gabija started she ran through a lot of things in a short amount of time but broke it down in a easily digestible way. It was a good talk and based on a number of things I had heard or read but not really connected in this way… Here are the books I read which she mentioned.

Something new for me was the Triune Brain model

  • Lizard brain – lowest level regulates breathing, heartbeat, digestion, etc.
  • Mammal brain – system 1 regulates emotions, memory, habits, etc
  • Human brain – system 2 regulates rational thinking, learning, problem solving, assessing pros and cons

There is different decision making systems in the brain: slow (rational, system 2) and fast (intuitive, emotional, system 1) its about deciding which system is best as rational decisions with system 2 require a lot more energy. While system 1 is prone to the unconscious biases as its using pattern and basic logic. Emotions are important so we don’t get stuck with indecision; and understanding our emotions can help us to make better decisions. However emotions are quite different from mood which can distort decision making.

Lots to think about and well worth the money and time, thank you to Gabija and hope to check out her next talk about productivity.

My beautiful broken brain

I first heard about the documentary my beautiful broken brain via mindhacks. I then tracked it down and finally watched it. Lotje was 34 when she had the same kind of brain injury as myself. I ended up calling it #mybrushwithdeath.

Watching the documentary was unreal not only because there was so much I could relate directly to. The process of what she remembered and what she doesn’t really got me. I was in tears. There is absolutely no doubt I was incredibly lucky. The mix of reality and non-reality was frustrating to say the least, but I certainly didn’t have the big problem Lotje had with reading.

Some people will say why film it? Maybe the same people who asked why I would get on stage and do a TEDx talk about my experience? You only have to read the reviews to start to understand why, telling such a personal story is so important.

As a survivor of multiple strokes including a major hemorrhagic stroke in 1999 just 13 days after my 37th Birthday and a massive hemorrhagic stroke 2011 just before Christmas I can relate to the lady in this film, I went through and I am still going through a lot of what she had experienced from her stroke. I found this movie very good at explaining what we as stroke survivors are going through. I would highly recommend this movie to people who are interested stroke experiences and want to understand what we are going through because it is truly hard for us to explain to others what it is like to live life with our beautiful broken brains.

If I was to sum up the documantary, it would be the line from Lotje herself…

I’ve learned I’m strong, accepted my vurnability and focus on what matters…

Beautifully said…!

5 years ago, while I learned to speak again

Ward at Alpha Hospital

Its the June 2nd and its about the time I could barely talk (due to a trach) but my memory was less hazy and I can remember much more. My sister tried to create a communication board, so I could communicate without saying the word. It was pretty frustrating and too be fair i did tell her. I did feel bad about it, as she really trying to help. I remember writing, this is stupid and there has to be a better way… Luckily I didn’t need to wait long before I could talk again.

Ross and Carly came and saw me a few times and certainly helped with the healing process, by making me laugh and cough a lot. I think I remember Adrian seeing me at one point too, he gave me the printed information on Google IO 2010 and the much talked about Google TV.

This about the time when I started going a little stir crazy, as it was ICU, you were not allowed to plug anything into the wall.  My saving grace was my old kindle full with ebooks which I meant to read at some point. I also had enough of the woman next to me with her kicking action to get attention. I must have read about 10 or so books while I was in ICU, unfortunately lights out was 8pm and I didn’t have the paperwhite kindle at the time.

My parents did offer to bring my laptop but I originally said no (believe it or not!). They did bring my pacemaker which I had a hard time re-learning in the first hour but gave rise to a number of mixes later.

Not being able to get out of bed was a real pain, even when I could actually stand. The nurses wouldn’t let me go to the toilet alone and it wasn’t till I pretty much pleaded with a male night nurse to please let me use the normal toilet so I could have some privacy. I finally was happy again. Privacy is something while going to the loo is something I certainly like and the doctors did wonder if my body was operating correctly.

Hospital food is pretty bad but try having complan as your main supply of food, by this point I only had to survive a day or two on it before than it was via the drip in my nose. Food via a drip was weird and interesting especially when you are fully aware of whats actually happening.

The last thing I certainly do remember is the injections of  Anticoagulants better known as Warfarin. It was either have it in the arm or in the stomach. Don’t ask me why remember I hadn’t had hypontherapy yet, but I decided the stomach was best because I couldn’t move it and have it scratch and theres quite a bit of fatty tissue… It was painful but honestly it wasn’t as bad as in the arm. Having every day got me slightly use to it but any chance I could avoid it, I did. Unfortunately it would only work for a short while before they would hunt me down for another fix!

Mum and Dad kept writing blog posts on carringbridge thanks to Sarah and Sharon.


 

Ian had a very good day today!  He was able to stand for the nurses and was out of bed sitting in a chair for most of the day.  He was smiling a lot and laughing at jokes (which is helping to clear his chest).His breathing is continuing to improve and we hope the trach tube will be removed soon so he’ll be able to speak.

Hi everyone,Ian is progressing well.  He is breathing with very little help now.  They are thinking of transferring him out from ICU to a High Dependency Unit tomorrow.

Ian’s dad, sister and I have been back in Manchester with him since yesterday afternoon.The trach tube had to be resited and Ian is still having some ventilation through that just until his breathing improves.  They are reducing use of it and he is mostly breathing on his own.Ian’s sister has been reading him messages from the guestbook which are much appreciated.  However, at the moment we would still like visitors to be limited to family.  Ian is having ups and downs in his recovery, but on the whole is improving.  We want to make sure he rests and does not get frustrated with not being able to speak (this is temporary due to the trach tube).   He is communicating with us by blinking, nodding and occasionally writing, and he does understand everything that is going on.

Ian’s ventilator was removed again this morning.  To avoid having the ventilator back in, he has had a tracheotomy to help him breathe.  This is just a temporary measure until his breathing is stabilised.  The drain has been removed from his head, so now it is just the feeding tube in his nose.He indicated he was in pain due to having the tracheotomy, so he has had some medication to help with that.I have travelled to Bristol this evening, but will drive back to Manchester with Ian’s dad on Saturday morning.  Ian’s sister will also be back up to see him on Saturday.More cards arrived for Ian today and they are all being stuck up to the wall near his bed.  Thanks to everyone for all the get well messages.

One year on from my brush with death

Get well cards from 2010

It seems only yesterday when I was totally stressed out about the closure of BBC Backstage, trying to help Future Everything, buying my first flat on my own and goodness knows what else…

I assume this time last year is about the time Adrian got the call saying I didn’t have mengentis, instead I had a massive bleed on the brain and they were going to operate straight away, could he contact my parents.

It still makes me very sad that I put everyone through everything but then again I really wasn’t to know. The bleed was caused by having high blood pressure and although my size doesn’t help, its also in my family genes. Both my mum and dad have high blood pressure and to be honest I’d never really thought to ask them about it. Ever since, I’ve asked them all types of questions…

In my flat, I have had all the cards I received during my time in hospital up. It reminds me what happened and how I need to move forward. My parents would rather I had taken them down but I did say I would keep them up for a year then put them away for safe keeping. This is exactly why I’m writing this post I guess.

I know I’m one of the luckiest people on this planet. To survive a bleed on the brain (Angiogram) is one thing but to be able to walk away with little permanent damage is just something else altogether. I’m not one for religion but as my parents say, god must have been looking down on me that day.

Get well cards from 2010

The blow by blow

Over the next week the story of last year becomes a lot clearer in part due to my caringbridge site/blog, which was setup by my ex-wife Sarah, who at the time I was not on speaking terms with at all.

Ian had been feeling very unwell, and his flatmate and his boss convinced him to go to the hospital to get checked out. We were called on Monday 17th May and told Ian was in hospital. Originally they suspected meningitis. However, all we know at the moment is that he had a bleed on his brain. He had surgery that day to put a drain in and has been heavily sedated in the ICU at Salford Royal (aka Hope Hospital).

It all felt like a lot longer, it almost felt like I was in hospital months, but I guess thats the powerful drugs effecting my judgment and memory. I assume looking at the dates I was only in ICU for about 2 weeks.

I do remember this moment

I spent most of the afternoon and evening with Ian today. They have taken him off the medication that was keeping him asleep and his condition is fair. He’s opened his eyes and is able to communicate with me by nodding. He is still on the ventilator but he is starting to breathe naturally. They want to keep the ventilator in for the moment in case he isn’t responding properly.

He had tears in his eyes while I was reading all the get well messages to him. So far he will only open his eyes when I ask him to, but he will not do it for the nurses.

I could hear my mum calling my name… And I woke up in a strange place mainly of white. My mum, dad and sister were standing over me. My mum asked do I know where I am? I shook my head and she said hospital. They read out a few messages I had gotten and I fell a sleep with tears in my eyes.

The next day (Saturday)… I remember slightly more.

Ian wanted to know what happened as he cannot remember falling ill; his sister has explained it to him. He then wanted to know what the doctors said so I’ve told him about having the bleed on his brain. He was listening and nodding to say he understood.

By Monday my mum certainly knew me very well because she wrote about my recovery, she did say to me later in the year that she knew I wasn’t going to be physically disabled because my legs and arms kept moving now and then while I was under…

I still feel very confident that Ian is going to make a full recovery. Today he smiled and squeezed my hand, and he laughed when we told him a joke. He knows where he is and recognises his family.

He is still quite tired and drowsy, but I am reading him your get well messages when he is awake enough to listen. Alvin and I had no idea how well known Ian is until we saw the messages coming from all over the world.

Yes I certainly remember trying to stay awake and learn more about what was going on around me but struggling to stay awake even during guest visiting hours.

I am staying at Ian’s flat in Manchester and am pleased that I have figured out how to turn on his television!

Good for my mum… I kind of forgot how alien it must have been for her, shes so use to just turning on the TV and sound coming out. While I had it setup so all the sound on the TV is muted and comes out to the cinema amp instead. Luckily I changed the Sherwood amp to the Onyko amp sometime before otherwise it would have been impossible to work out.

Tuesday, and I’m wondering about Google IO 2010 and was in tears to hear about what Jeremy Keith did for me

I held up some of his cards and messages for him to read. Ian wrote on a piece of paper asking for an article about Google, and one had been sent to him so he got to read it (thanks to the sender!).

The doctors are hoping to to take him off the ventilator again tomorrow and see how his breathing is doing.

On Wednesday Ant/Adrian posted this blog post on the Backstage blog. While Thursday…

Ian’s ventilator was removed again this morning. To avoid having the ventilator back in, he has had a tracheotomy to help him breathe. This is just a temporary measure until his breathing is stabilised. The drain has been removed from his head, so now it is just the feeding tube in his nose.

I remember the tracheotomy, in actual fact I’ve still a year later got the scar from where the hole in my throat was. The Feeding tube in my nose was very strange. I remember when the nurses would change the feeding stuff to something sweeter and my nose would almost tingle as it slowly got pumped down the back of my nose.

By that weekend (last weekend of May)… I think Ross and Carly came up to see me and my mum wrote this.

Ian’s dad, sister and I have been back in Manchester with him since yesterday afternoon.

The trach tube had to be resited and Ian is still having some ventilation through that just until his breathing improves. They are reducing use of it and he is mostly breathing on his own.

Ian’s sister has been reading him messages from the guestbook which are much appreciated. However, at the moment we would still like visitors to be limited to family. Ian is having ups and downs in his recovery, but on the whole is improving. We want to make sure he rests and does not get frustrated with not being able to speak (this is temporary due to the trach tube). He is communicating with us by blinking, nodding and occasionally writing, and he does understand everything that is going on.

The messages and cards were overwhelming… They really helped me. I remember thinking I can’t believe the amount of peoples lives I’ve touched. Not being able to speak was a nightmare… my sister (bless her) came up with a system for communicating but what she missed was the fact it was based on speaking language and so required far too much effort to make it useful. My frustration was clear but I was able to somewhat laugh with Ross and Carly.

I’ll leave the walk down memory lane there for now… but its worth poping along to Thank you part 1 and Thank you part 2 which cover my thoughts and thank you’s when I left Hospital.

Time to pack away the cards

Life goes on

Now one year on, my life has totally changed around. I’m doing a lot less but also going deeper in certain areas. I’ve decided to leave the open data movement to its own momentum. I’m now full of creative ideas which I keep writing down in Evernote for future use. Some of those ideas are to do with the BBC and some to do with other aspects of my life like djing. I’m also less likely to hold on to them, which fits nicely with my need to use less brain cycles.

I’m living much more of my life publicly, trying to hold back requires effort and brain cycles so unless there’s a very good reason, I tend to share it. I’m also less guarded with information about myself, heck I’ll pretty much tell anyone about my experience with the bleed.

I also have a total new appreciation of our brains and the system which keeps it ticking over. I’ve of course taken advantage of mine to trick it into thinking giving blood and injections are not as bad as they should/could be via hypnosis. Also a better understanding of the need to stay fit, healthy and have a very positive outlook. I really hate to see life being thrown away, even more so than before.

Generally my brush with death has changed me in many positive ways and I never want to end up back where I was. Although I’m thinking about popping back into the hospital to see some of the nurses to see if the changes I complained about have actually happened or not… But thats for another blog post later in June.

Its certainly time to stop the #mybrushwithdeath thread. Archive and move on but never ever forget…