As promised I give you an update on my progress with regard to Smart Syndrome and my faltering ability to move forward in my recovery. I was becoming increasingly frustrated by my inability to find an organisation wanting to take me on in order to try and deliver a strong message about eating better and moving better in order to help prevent disease and if disease strikes, to reinforce the marvels of modern medicine, in order to greatly improve outcomes and maybe even beat it altogether. But now I know why. Reality has struck. While I do have a remarkable story that I so wish to share with those that need it, to encourage strategic eating, strategic levels of physical activity but also to provide hope, inspiration and encouragement to those struck down with disease, I now realise that I am in no position in which to function on a busy campaign with any success, and probably, the least likely candidate to provide inspiration just now. The feedback from my last MRI with most excellent and very gentle advice and guidance from my oncologist, and neurologist, and his assessment of my ongoing symptoms, have sunk in; I have come to realise, what I have long suspected. That the brain tumour itself, and the brain surgery, brain focused radiotherapy and year of chemotherapy have left me with significant neurological functional disorders. In other words that I have been left partially brain damaged. The question that I had long been asking has been answered. If I have beaten my beast of the brain tumour down to zero, and the centre line of my brain was now back in the centre of my brain, then why hadn’t I beaten the epilepsy? Why was I still suffering from random episodes that seemed to be unmanageable no matter how over drugged and suppressed I became as the anti-seizure medication dose went up and up and up in response to seizure after seizure? I had been living these last few months in a toxic smog that prickled my eyes leaving me in an almost constant state of near crying as I waded through treacle to try but fail to complete the most basic of tasks. I had one or two incredibly great days a month. The rest were being spent drugged to my eyeballs to such a degree that I felt like the big cats of fatigue had got their claws and teeth firmly embedded into my rump and were dragging me harshly to my knees like a zebra on the savannah. I felt, much like that zebra, that the more I kicked and bit and ran, the more likely I was to survive. The net result, as I ran and cycled and pushed weights and swam and walked and walked and walked in my stubborn refusal to give in, was that I was getting more and more grumpy and could barely function beyond the putting of one foot in front of the other. So much so that I very nearly gave up altogether, so nearly threw in the towel to just curl up into a ball on the mattress, pull up the duvet, and wait, wait for the lights to go out. Life was becoming that bad and even led on two occasions to circumstances in which I was found by the staff at Tesco after a short 3 mile cycle ride in for a food shop, hanging on to my shopping trolley with my left hand, like a puppet on a string, my legs all wobbly, my head bowed and wobbly, silent in quiet contemplation of the spices shelf that I was found vacantly staring at. All I can remember is that, in the busy environment of the supermarket, as the Mums with small children were trying to get their shop done quickly on the way back from the school run, while I stumbled around gormlessly looking for produce on my list, I was becoming increasingly harassed by the Mums with trolleys and push chairs. I am sure that they didn’t mean to, but the more I tried to keep out of the way, and the more I tried to keep my trolley out of the way, the more I seemed to be in the way, and so ended up performing what felt like endless spins as I wheeled my trolley around and around, in an effort to stay visually connected to the shelf that I thought might have the spice on it which I was looking for, spinning in ever decreasing circles at increasing speeds as Mum after Mum and screaming child seemed to come at me from every angle in increasing numbers with increasingly loud screaming children until the world stopped turning; and the next thing I knew was that I was being woken from my trance by a Tesco employee gently calling to me and rubbing my arm. She brought me back into the land of the living then helped me to complete my shop on wobbly legs, using the list I was still clutching helplessly in my right hand, starting with the spice that I could not find in the busy shelves.

So in my Neurology clinic we had a huge amount to discuss and after a most excellent clinic in which my neurologist listened, decisions that I had long been hoping, indeed pleading for, had been made. He firstly explained that what I had been experiencing were not epileptic seizures but the result of neurological functional disorders. That the brain tumour was of a significant mass and had been munching away into the brain for many years so had damaged the brain. The treatment that had been particularly arduous and hard hitting of brain surgery that removed 40% of the tumour, followed immediately by a full 8 week course of brain focused radiotherapy, followed immediately by 12 monthly cycles of chemotherapy was intended to buy me some time, and it not only did that but also helped me to quite probably beat the beast of a brain tumour altogether. But it also damaged the brain and the scarring left behind has become the focal point for the electrical storms causing some epileptic activity. But in a nut shell I have been left brain damaged and still had epilepsy, but not perhaps at a level that required such a massive daily overdose of anti-seizure medication. So he immediately started me on a gradual reduction in the amount of anti-seizure medication I was to take, and we discussed ways in which we could train the brain out of this. There had to be a way right? He was positive but his tentative, non-committal answers to my questions and ideas left me realising that while we know an awful lot about the brain, there is an awful lot that we still do not know about the brain. I was in uncharted waters in which there was no known way out other than ‘give it time and wait and see’. I had to step up to the plate and once again find another way forward. I have to, once again, think outside of the box. There has to be a way to beat this beast.

Since that last neurology clinic I have been inspired by two amputees who have not let their disability hold them back, who have found a way forward. The first was the young ex Royal Engineer who suffered a traumatic amputation after stepping on an improvised explosive device in Afghanistan 5 years ago. Here he now is 4 years into his University degree in medicine treating me and hand-making me orthotics. I had no idea that he was an amputee until he told me after we swapped stories about our military careers. I was thrilled for him and so very proud of this plucky Brit. The other is of course the incredible sprinter now star on Strictly Come Dancing, Jonnie Peacock, another plucky Brit. While I was watching him on the show the other night I was once again thrilled that he had made such a success of his life despite his traumatic start in life. So I turned to thoughts of my future and what it might look like. After all, I was blessed throughout my military career in that I was never in the seat of an explosion. I have both eyes, hearing in one ear, both arms and hands with all my fingers, both legs, both feet with all my toes. In fact I am physically complete and look perfectly normal, but then I referred back to the website that my Neurologist had directed me to to learn more about my neurological functional disorders and, in my head, started to write the covering letter to my current CV. As I did so I started to feel increasingly useless, increasingly frustrated, and increasingly trapped in a sound body that just could not function in the way I wanted it to. I have all my limbs but I cannot dance like Jonnie because my brain doesn’t work properly. I have all my limbs but I cannot do a University course and study for a new future because my brain doesn’t work properly. In the bit of any interview in which they ask the question, ‘Do you know of any reason why you might not be suited for this role?’ I would have to reply:

‘My brain is damaged and while I have every intention of fixing my brain I have to warn you that as the brain controls our very existence, even those areas that we take for granted, like breathing, or swallowing, there are times, in which I suffer from:

      • 1. Functional Limb Weakness in which I can become clumsy and lose much motor function down one entire side leading a few times to collapses and drop attacks and on one occasion so far, a hospital admission with a suspected stroke. I can struggle to manipulate cutlery in my hands so can struggle to eat. I can struggle to keep a hold of things so drop things frequently and can, at times, become a liability to myself while trying to chop vegetables.
      • 2. Migraine and stroke like episodes that leave me stranded in a type of suspended animation with significant head pain.
      • 3. A tiredness that can drag me to my very knees exacerbated by an inability to take a full night’s sleep.
      • 4. A short term memory that sees me asking my wife the same question time and time and time again, that means that I cannot remember the name of the person that I met 5 minutes ago.
      • 5. A concentration span that is so poor that I cannot read a book. I get half way down a page and my mind is elsewhere and then I cannot remember what I had just read so have to start again and again until eventually giving up.
      • 6. An inability to recognise people I know really well. A mind that changes the very appearance of people, even my own wife. A mind that sees things that are just not there. A mind that is so slow that it convinces itself that it is in a completely different time/space continuum. A mind that cannot cross a busy road safely on its own. A mind that loses its thread repeatedly in conversation. A mind that struggles to understand the social norms anymore, that cannot discuss, that cannot argue nicely, that cannot negotiate. A mind that becomes exhausted after just 30 minutes of conversation or that becomes overwhelmed when in an echoey room full of talking people.
      • 7. Dizziness that can throw me into roads, off step ladders, into door frames and lamp posts and have me tripping over flat pavements.
      • 8. A mind that can sink very deeply into the deep dark river of despair.
      • 9. Facial twitches with a mind that often sees me unconsciously making the most extraordinary mouth movements and shapes. A mind that struggles to control my tongue and cheeks and lips so struggles to chew without throwing half chewed food, unexpectedly, down the back of the throat. A mind that has left me feared to eat on my own in case of choking. I have to concentrate so very hard on every bite chew and swallow.
      • 10. A body and face that suffers from twitches and tremors as tiredness once again drifts unstoppably in. A tremor so subtle that you would struggle to notice it but so pronounced that it makes writing a text or an email on a smart phone initially comical and then quickly, nearly iiiiiimmmmmmpossibleeeeeeeeeee.
      • 11. A mind that constantly struggles to find words. A mind that struggles to speak clearly and that can at times speak complete nonsense yet believe that it is absolutely correct. A mind that becomes increasingly and uncontrollably frustrated and angry at the simplest of things.
      • 12. A mind that finds the simplest of tasks almost impossible. A mind that often forgets how to tie a shoe lace. A mind that often struggles to undo a shoe lace when tied with a double knot. A mind that can struggle to open a childproof pill bottle. A mind that can be seen turning a rucksack over and over and over on its knees on a bus while talking to itself while trying to decide where to pack away a cap, then getting off the bus and leaving the cap on the bus. A mind that would lose anything if it wasn’t tied to him or his rucksack. A mind that can lose his locker and become completely disorientated on returning to the changing room from the shower. A mind that can no longer cross a road safely without a green man.
      • 13. A mind that will unconsciously talk to itself to the point at which those close by, whether on a bus, or a train, or in a supermarket, or even on a golf driving range move further away.
      • 14. A mind that struggles to control simple bodily functions like urination and defecation so has to constantly know where the nearest loo is as I really do not want to have to start wearing a nappy.
      • 15. A mind that has seen my whole body dropped to the floor with poor cognitive and motor coordination on numerous stressful occasions.
      • 16. A mind that is exhausted after just 30 minutes working at a computer. This post itself has taken me the best part of a week to write. A mind that just cannot do two things at once.
      • 17. A mind that will try and keep a place for everything with everything having a place yet, at times, cannot find a damned thing without Allie’s help.
      • 18. A mind that will struggle to make a decision without a list. That will find me wandering backwards and forwards, in and out, standing and sitting, doing and not doing. To do or not to do? That, is the unanswerable question with the inevitable cop out, ‘what would you like to do Allie? No Allie, it is entirely up to you.’
      • 19. A mind that is frankly like that of a 5 year old. Stripped bare and having to relearn the very basics of life.

A mind that more often than not can know that it is struggling but cannot do a bloody thing about it. A mind that the harder it tries to stop whatever is happening from happening, the worse that neurological dysfunction seems to become. A mind that can know that it is struggling but not be able to communicate it properly to those he is with. And even worse, a mind that can think that it is functioning fine but struggle to understand that it is not when people seem to want to move away or get away or when Allie tries to gently warn it, to bring it back to a functional state, to bring me back home.

A mind that while the hope is that, over time, it will settle down and heal itself, leaves me in fear of dementia for there is no certainty as to when these neurological functions will stop developing or worsening. For while I have met lots of people who knew someone with a brain tumour the story has almost always been sadly, but inevitably terminal. So I feel as if I am once again in uncharted waters.

It is really hard for Allie because even though I might be there physically, I am often somewhere else entirely and when I am there but struggling but cannot communicate it properly, or thinking I am great but Allie is seeing and hearing that I am not, or when my mind changes Allie’s face to such a degree that she becomes unrecognisable, or when I try to communicate but cannot, or when I become frustrated and angry at the simple things, or when I see horrid things in supermarket aisles, or when I want to cross the road but Allie has to hold me back to stop me walking into traffic, or when I look like I might drop into a seizure or drop attack at any moment, or when she wants to help me untie my lace or tie my lace or open that bottle or tell me that word or show me that my organ music is upside down, or tell me who that was or what that was, or when that was, but instead holds back to let me fight with my brain to find a way to make it work while answering the same question over and over and over and over again, and when Allie finds herself spending every waking moment worrying about me I discover just how amazingly strong, resourceful and courageous she is. When I married her I told all those who were there that Allie was my third leg that kept me stable, my sea anchor that kept me set on a steady course, my rock that keeps me strong, the heroine that rescued me from the deep dark river of despair and rescues me almost daily. But we had little idea of what was to follow. Yet she has stood by me with unerring love, dedication and determination to see me safe and well again despite the unrelenting urge that I imagine must be there to turn and run.

These neurological functional disorders are not on the surface all the time. Indeed the last 3 days in which I have been helping a friend, Gary, who is helping me to refurbish my wonderful flat in Doune in preparation for sale have seen me relatively clear of them with the exception of not being able to find anything I had put down a few minutes previously, and being very off balance at times and being a little stammery in my speech. But they are a constant threat and can come with little to no warning, so they have to be beaten if I am truly to have life, if the children and Allie are to be able to enjoy life with me without fear of what might happen next. The brain is malleable so I will just have to find a way to train it. To knock any hint of a decline into a cognitive and motor function vegetable into touch, and smash any further decline towards a form of dementia right out of the park.

So while I am desperate to work, to be a part of something again, I have a mind that is just not fit for the normal stresses of daily life let alone work. For example, on day 3 of a working week in the flat I had a real battle with my brain. On the commute in, as I stood at Stirling bus station, an old friend from the village came up to me and said hello. I struggled to recognise him at first, but when I did, for some unknown reason, tried a slow naval salute but missed completely and poked myself in the eye. I knew that I was in trouble and my faltering attempts to speak and explain myself confirmed as much. I thought that this old friend would sit with me on the bus but he walked on by and sat at the back. Then on arrival in Doune I disembarked and bumped into another old friend who had supported me on the challenge from the start. I could not remember her name for all the tea in China but had a good 20 minute chat in which I explained my theory on strategic eating and exercise and guided her to my website and my balanced daily lifestyle to help someone very close to her diagnosed with cancer. As I walked away I stumbled and struggled to see clearly before bumping into two more friends from the village who were chatting away and again I struggled to recognise them until I was well past them with my mask of a smile firmly in place as I waved a warm hello then faced the front to walk as solidly as I could towards the flat, Gary, and some normality. I was still struggling when I arrived and Gary spotted it and understood that I desperately needed something to try and bring my mind into focus. So he set me the task of building a flatpack cupboard from B&Q to support a sink with cupboards in the bathroom. It was the perfect task and so I got on with it while Gary worked on other tasks. As I built it I developed a tremor and realised just how difficult it is to try and get a screwdriver, screw and screwhole to marry up while the hand is in tremor. But I persevered and while it took a long time I eventually managed to build the cupboard. And then I realised that I had built it upside down and frontways back so took it apart and tried again. Then I realised that I had it right the first time so did it again. Third time lucky I had it right and was convinced of it. But as I then built a small chest of drawers for the bathroom my eyes closed in and the mist blew in and I really started to struggle. But again I persevered with Gary checking up on me and correcting me as I started to build the drawers back to front and I got there, and with lunch eaten I set about the second cupboard the same as the first and this time did it right first time. I was better and seeing and thinking better but knew that, at times, I had been close to an episode. I have to beat this beast.

So I am developing a plan to try and retrain the brain using golf, sponsored by Dalmahoy Golf and Country Club, learning to play the pipe organ sponsored by the organist of Ps and Gs church in Edinburgh, learning to juggle, and to retrain my brain in social interaction, memory recall, mental discipline and concentration et al through the medium of drama.

But the future is far from certain. For as the dampeners of the over dose of the anti-seizure medication start to fall away like the booster rockets from the space shuttle, so the complexity and sheer scale of the challenge that lies ahead of us becomes apparent.

I have been inspired by the Royal Engineer and Jonnie Peacock, frustrated by my dysfunction but am blessed to have two beautiful children who stand by me and a wonderful wife who not only stands by me but encourages me to do all I can to get myself back to full functioning fitness, but to take it easy, to not overdo it, to reassure me that we can get by financially so not to worry, to stay positive when I ask her the same question 6 times in a day, when I am there physically but elsewhere entirely,

So I am going to beat this new beast. I am going to train the brain. I am going to start with some of the brain training activities on the dementia website while trying to learn to play golf, to play the pipe organ, to juggle, to dance, to communicate through drama, to laugh again.

And then I am going to get to the paralympics as a golfer, then give an organ recital in a cathedral, then get on Strictly, then act in a blockbusting film that provides hope and inspiration for millions, then write a book, then launch a worldwide campaign to improve the lives and life chances of millions by encouraging strategic eating and strategic physical exercise. But what I won’t try and do is a medical degree as that would be far too ambitious.

So sponsor me on this new journey on this page and help me to continue to improve the lives and life chances of so many more people through your sponsorship going to the 5 wonderful charities I support of the British Red Cross, Cancer Research UK, Help for Heroes, The Princes’ Trust and the World Wide Fund for Nature. It is bound to be a fascinating and exciting journey with many twists and turns and I have no idea how the story is going to end. Only God does, and he is keeping his cards so very close to his chest. So sponsor me, even if it is for just £1.00 a month. Every single penny goes to the 5 charities, so sponsor me and help me to make a difference for as long as ever I can.

Thank you

Yours aye

Beat the Beast!