Whilst volunteering with the MND Association, I had the privilege and pleasure of interviewing author, Roboticist and MND-fighter Peter Scott Morgan on his life, books and experience of MND. Read on to find out about his journey!
Image: Peter Scott Morgan, Motor Neurone Disease Association
1) What is the most important thing you've learnt from living with MND?
My most important discovery has been that MND isn’t the ‘invariably fatal’ disease it’s often described as – even by those with scientific backgrounds! In reality, those of us with MND nearly all die from lack of food or (more commonly) lack of air. These are ENGINEERING issues, not medical ones. Our guts and lungs carry on working perfectly, it’s only the muscles needed to get food and air that shut down. That’s relatively easily solved by a feeding tube, Non-Invasive Ventilation (NIV) and – when NIV becomes more difficult – Tracheostomy Invasive Ventilation (TIV). Without those, we die. With them, MND is closer to an untreatable Chronic (rather than Terminal) disease. With the right engineering, and with some luck, we may after a long life eventually die of heart disease or cancer rather than MND. But, for various reasons, in the UK less than 1% of us choose to have the interventions needed to stay alive. So, most of us die within two years of diagnosis – just as it was fifty years ago. I think that’s a shame.
2) I understand you wrote a book called ‘The Robotic Revolution’. How can robotics assist someone living with MND?
Yes, it was my first book; my PhD was in Robotics and ever since then I’ve been passionate about the exponentially growing power of Hi-Tech to transform lives. So, I see Robotics and Hi-Tech as the first line of defence against MND. Within five seconds of being diagnosed, after initial surprise, my first coherent thought was: “This is only a problem of my voluntary muscles and the part of my brain that controls them. We’ve been using electro-mechanics and AI to substitute for those for decades. I’m on home territory with this one. It’s a solvable problem.
3) If you could leave Earth with a legacy, what’d it be?
To forever change the world so that anyone with Extreme Disability (even through ‘old age’) can choose not only to stay alive but to use Hi-Tech to THRIVE! Nothing more, nothing less.
4) What is the most interesting/ surprising thing you've discovered about yourself since being diagnosed with MND?
I’d never campaigned in my life. I’m not that sort of a person. I’d never written to an MP, joined a march, or used social media to state a case, never given an impassioned public speech to change people’s minds. Now I’ve done all of those things. And I’ve only just got started. Why? I discovered that many in the UK simply aren’t fully informed about their options – especially around TIV. Worse, I found that some people who do want to have TIV are being told: “We don’t offer tracheostomies for MND.” Some struggle to get access to Cough Assist machines. I’ve had unbelievably wonderful support from the NHS where I live, in Devon. So, it blew my mind that others weren’t getting the same support. I found that I couldn’t let it stand. I’ve started a Right to Thrive campaign, and my MP (Kevin Foster, Torbay) has enthusiastically taken it to Westminster.
At present, it’s a local decision for a Tracheostomy and Cough Assist to be made available for MND. The most recent data show that <1% of people with MND in the UK receive this life-saving combination; in Japan it’s >30%. I’m certainly not saying we should all choose the same thing. But I do passionately believe that everyone with MND deserves the same right of access to the life-sustaining Tracheostomy and Cough Assist they may need if they choose to fight for a fulfilling life despite their diagnosis. Instead, some people, having chosen to live and thus the Right to Thrive, are being denied access and, in effect, told they must die – because of where they live. At its heart, the Right to Thrive campaign is about Access, Choice and Equality – everyone with MND deserves this, not a cruel postcode lottery.
5) What does the future of assistive technology look like in your mind?
Cutting-edge Hi-Tech such as robotics, AI, Virtual Reality and Enhanced Reality are set to revolutionise MND, realising the dream that even those who are Locked-In can choose to Thrive. For those who want it, we in the MND Association intend to make this dream come true. We’re gathering some of the most innovative and influential organisations and individuals on the planet to form a Technology Think Tank to change the world. I’m extraordinarily lucky to have been asked by Nick Goldup (Director of Care Improvement at the Association) to Chair this Think Tank, and it’s the most exciting project I’ve ever been involved in. We’ve got some really awesome corporations signing up, and we’re going to tackle the most fundamental challenges facing Extreme Disability. What does the future of assistive technology look like? We’re going to write that future! Watch this space!
6) What, to you, is the most fundamental aspect of a good quality of life?
Love. You can take away my ability to walk, I’ll use a robotic wheelchair. Take my arms, I’ll get some form of exoskeleton to help me reach out and touch those I care about. Take my voice, I’ll use a pre-banked voice synthesiser to talk. My personality? I’m programming an avatar of my face that will smile at them and move when I speak just as I used to. My spontaneity? AI, and eventually I’ll be even cleverer at remembering things than I am now. Eating and going to the bathroom? I’ve already had the first ever ‘tripleostomy’ (feeding tube, suprapubic catheter, colostomy) and, if I want to, I can now eat and go to the bathroom while sleeping– which is really useful if I’m busy. Only give me Love and I’ll find a way to keep giving it back. Because I’ll have more than enough reason to solve any challenge…
7) Would you rather go back in time or go forward in time?
I adore history, and I’d love to spend time with people like Ramses II, Plato, Alexander, Leonardo, Turing. But forced to choose, I’d definitely go forward in time. The future fascinates me and, despite how extraordinarily dumb we can be as a species (especially in maxing-out the credit on our home-planet), we’re indomitable. I’ve a hunch that soon we’ll reach out from our home and spread across the stars. Either we’ll find other intelligent lifeforms (which would be scary and awesome) or won’t (equally scary and awesome). Either way, we’ll change our section and era of the Universe. It’s what we do. It’d be amazing to see what humankind is like after it stops being so adolescent and grows up.
8) In an interview with Simon Holland on his skydive to fundraise for the MND Association, he said a lack of understanding of MND is a barrier in treatment by doctors. What do you think could change this to ensure patients living with MND are treated in a way that's right for them?
I think it must be terribly difficult to be a healthcare professional faced with MND. Even though everyone has a 1-in-300 chance of getting MND (which doesn’t feel ‘rare’), such a large percentage currently die because they don’t have interventions needed to keep them alive that it feels much rarer. Hence, most doctors have little to no exposure to MND. And when they do, it’s often because of problems. So, they build a negative view of what life with MND is like, and sometimes rely on – what to me at least – is as a dangerously out-of-date notion that ‘the kindest course is not to prolong inevitable suffering…’ As a result, some people with MND aren’t told about full Respiratory options, some are not offered treatment for other diseases (say, a heart bypass), some are actively lobbied not to unduly extend their lives. Although I understand why some doctors act like this, it makes my blood boil! It’s not a doctor’s decision. Each of us with MND should have autonomy. And to do that, we must be fully informed – not sometimes fed a biased or heavily-censored version of the options. I’m the first to fully support those with MND who, choose not to have TIV; under different circumstances I might be one. I don’t support politicians, NICE guidelines or local NHS funding directors or healthcare professionals if they warp the decision-making. Making right choices with MND is tough enough without authority figures making it harder.
How do we level the playing field? I think the quickest way is two-pronged: let everyone realise there’s currently inequality in treatment of MND (no one wants that); quite separately, broadcast more examples of people who chose a different path to the historical norm and are pleased that they did. That way, we won’t need to persuade the medical profession to change its mind; it’ll collectively change its own mind.
9) How do you look after your mental health when living with MND?
I’m exceptionally lucky that I happen to have a relevant professional background and a suitable mental attitude to cope with MND. It sounds perverse, but the scientist in me finds the opportunity of spearheading cutting-edge research into applying Hi-Tech to MND really exciting. 99% of the time that keeps me distracted; 1% of the time I remember that it’s me that is the subject of the experiment! But then Teenage Peter gets all excited again about the super cool technology I’m going to get to try out only because I’ve got MND. And suddenly living with MND isn’t all bad…
10) Where is the government's money best spent in terms of MND care?
Technology. Of course, I would say that. But in terms of Care (as opposed to Cure), emerging Hi-Tech for MND really is a hugely attractive investment for governments to make. Firstly, MND is a near-perfect research focus because it’s so difficult; solve issues for someone nearly Locked-In and you solve it for almost everybody with Extreme Disability from spinal injury to ‘old age’. Secondly, unlike any other forms of MND Care, Hi-Tech gets predictably more affordable; a solution that costs £10,000 today will cost only £300 in ten years. Thirdly, investment into Technology for MND Care brings very rapid benefits to those of us who have already been diagnosed – in a way that biomedical investment (crucial as it is for an eventual cure) has absolutely no hope of doing. To me, government investment into Technology research for MND ought to be a No-Brainer.
11) Having written about ideas of ‘change initiatives’, ‘change fatigue’ and the impacts of those “unwilling to alter their behaviour” in the global economy, I wonder how you deal with the many changes that you’re faced with while living with MND?
If there’s one thing I’ve learned about change, it’s that it’s a myth that people don’t like it. As a species we’re very good at adapting; what we don’t like is the type of change where we end up worse off and we’re powerless to do anything about it. That applies to MND just as it applies to corporate restructurings. All of us with MND go through huge changes, and we don’t get much choice. I’ve always been active and loved walking on Dartmoor or exploring ancient ruins but now my legs are shut down. My arms are heading the same way and having touch-typed since I was twelve, I’ve probably only a few months left where I can very slowly pick over a keyboard with two fingers of my left hand before I’ll never use my fingers again. Having always had a strong voice, my lung vital capacity is ~ 40% of what it was a year ago. My head muscles, last to deteriorate, are on their way. Not, I’ll admit, any of the changes I would’ve chosen. But I can do something about all of these – through Hi-Tech. So, I’m not powerless. I think that’s very important. Stephen Hawking’s famous advice regarding MND was to “focus on what you can do, not on what you can’t do.” That’s right – but I don’t think it goes far enough. I think we primarily need to focus on what we can change. How we can fight back. What stops us feeling like a victim. What lets us stand up to that bully called MND. What turns us into a rebel who’ll never give in, never surrender, even as we’re forced into our own living straight jacket. Above all, what reminds us that there are at last some changes that are emerging on the Hi-Tech horizon that for the first time will allow us all to fight back. And Win.