I often say of my writing that other people go out and actually do things while I merely observe and record in an attempt to join the dots, to make sense out of what I’m hearing and seeing, and hopefully offer a few meagre insights.
Never was this truer than the other night, when I strayed out of my normal dementia and elderly care zone into the world of neuroscience for an event in which experts discussed the links between the brain and personality, what happens when this is damaged or changed and what the future looks like for healing the brain.
Speakers at the NeuroSense event in London included three professors (one also a consultant neurosurgeon) and a young neuroscientist named as one of the UK’s top 100 scientists. Undaunted, I took my seat as a well-matured English graduate and hoped to goodness I could keep up.
I needn’t have worried. Dr Hannah Critchlow whetted my appetite with a couple of riveting stories. The first involved Phineas Gage, a 19th century American railroad foreman who miraculously survived when a stray spark ignited the gunpowder he was tamping down with a 6kg iron rod, rocketing the rod into his skull, through his brain and out the other side. In neurological circles the story has near legendary status. Gage lived pretty well for another 12 years and the incident revealed the brain’s ability, in certain circumstances, to regain its health.
The second tale was that of 27-year-old Henry Molaison, who underwent experimental brain surgery in 1953 for his severe epilepsy. The operation cured the young American of his epilepsy but robbed him of his ability to lay down memories; the next 55 years of his life were spent living in the present moment. As someone who writes primarily about dementia, my interest was piqued and, once home, I researched the unfortunate Mr Molaison.
Suzanne Corkin, professor of behavioural neuroscience at the Massachusetts Institute of Technology, spent much time with Molaison over the course of his life, writing a book about him – part biography, part case study – called, fittingly, “Permanent Present Tense”.
Observer journalist Tim Adams says of the book, “One of the fascinating, unsettling impulses in reading Henry’s life is that sense of identity being a bundle of all of the stories we tell ourselves about ourselves. Henry loved to relate the few clear memories of his childhood, over and over, though he lacked a context for them”. Again, there are echoes of those with dementia.
Dr Critchlow told the NeuroSense audience that memories are a crucial part of the way the brain works, providing a framework for how we see the world. To illustrate this she played us a tape of what sounded like gobbledygook followed by a tape of someone clearly speaking a sentence about a giraffe in a cage. When she replayed the supposed gobbledygook, it was now perfectly comprehensible, because we had a context for it.
This brought to mind the seemingly inexplicable behaviour of some people with dementia. For example, the woman who, for no apparent reason, constantly yells at people in her nursing home to sit down. Find out that she was once a teacher and all becomes clear; go along with her present reality, agree to sit down, and she may well become less agitated.
But fascinating as Dr Critchlow’s talk was – and illuminating and awesome as the other eminent speakers and their work undoubtedly are (consultant neurosurgeon Prof Steven Gill described his pioneering work inserting micro-catheters directly into the brain to precisely target medication to treat various neurological disorders including Parkinson’s and malignant tumours in children) – the star of the night for me was 33-year-old Emma Lawton, diagnosed with Parkinson’s disease in 2013. Determined, witty and self-knowing, Emma has a lot to teach us all and it’s no wonder that earlier this year she was listed as one of Management Today’s 35 women under 35.
A graphic designer, the tremor in her right hand made drawing a straight line impossible. As part of “The Big Life Fix”, a BBC 2 series in which people struggling with simple tasks for various reasons, were matched with some of the UK’s leading inventors, Emma was paired with computer scientist Haiyan Zhang, a director at Microsoft Research. Zhang invented a prototype device whose vibrations counteracted Emma’s vibrations.
The NeuroSense audience watched spellbound as, wearing the watch-like device, Emma was able to draw a straight line and write her name quite smoothly and legibly, with no wobbles. “It makes me forget I have a tremor”, she says, tears in her eyes, before phoning her mum to tell her the news. You can watch the clip here. Haiyan Zhang later told me that now they know the watch works for Emma’s unique symptoms, more research is underway.
Unsurprisingly, Emma herself is a great believer in technology and artificial intelligence to enhance the lives of those with conditions such as hers. If you can measure your own condition, if you know it would be better to wait a few minutes before going for a walk, or wake up and know that you should take more medication today, it is empowering, she says.
Her can-do attitude reminded me of those people living with dementia who are equally determined not to let their condition define them. I’m thinking of 56-year-old Chris Roberts who, diagnosed with Alzheimer’s six years ago, famously said in a Panorama documentary aired last year, “Don’t be scared, live life. Take it by the danglies and run with it”. Like Chris, Emma is determined to make the most of the hand she’s been dealt – “to make friends with my condition and start forging a new future for myself.” (To put Emma’s fortitude in context, only one in 100 of the 127,000 people in the UK diagnosed with Parkinson’s is under 40 and men with the condition outnumber women by almost 2:1).
Or there’s the indefatigable Wendy Mitchell. Diagnosed with dementia three years ago at the age of 58, Wendy has just completed her first fire walk for charity. I hardly need say more and whole-heartedly recommend Wendy’s blog in which her chatty, self-deprecating style belies her role as a tireless campaigner for those with her condition. Her credo echoes Emma’s. “Living as well as you can with dementia is all about adapting”.
Wendy, Chris, Emma – I could name many more – remind us all to live life to the full and be grateful for what we have. While the scientists who told us about their ground-breaking work leave me, for one, in awe.
Come Christmas Day, it will be exactly five years since my mum, who had dementia, passed away. So now, as I say, I am merely an observer, a chronicler of how this most feared of conditions affects others’ lives. The NeuroSense event gave me a glimpse into the world of those who use their formidable scientific skills to find better ways to treat neurological disorders – and reminded me of the extraordinary resilience of “ordinary” people.