From the outside looking in, the fact I’ve recently been diagnosed with Motor Neurone Disease can seem rather depressing: Over the next few years my body, but not my brain, will shut down till I potentially can’t breathe or – if I use a mechanical ventilator – till I become Locked-In, unable to move.
But I think that’s completely the WRONG perspective. Instead, look at it from my Brain’s point of view and what these days can be done to support it. Imagine the extraordinary journey that, as an increasingly disembodied intelligence, it is now embarked upon – with me (its self-aware bit) along for the ride. Take away the horror of the situation, and it’s actually rather fascinating.
So, let’s take away the horror…
Based on what I know of emerging technology, I simply don’t accept the standard version of what my future will be. This is the 21st Century! If my brain and I are locked on course into that same inescapable Void that’s been swallowing people since – we assume – prehistory, then on this occasion at last let’s prepare for a proper Voyage of Discovery. Let’s be fully SCIENTIFIC about this.
I want to take every Hi-Tech support possible with me into the Void; I don’t just want to survive in there, I want to THRIVE!
The often-quoted prognosis for MND of “death in 2-5 years” is totally misleading – keeping breathing and maintaining other bodily functions are largely mechanical issues, not medical ones.
So, because I want to remain largely self-sufficient rather than totally dependent on carers, I’ve arranged to have a gastrostomy, suprapubic catheterisation, and colostomy before my arms stop working and I can no longer feed myself or use the bathroom unaided. I’ll have a tracheostomy well before my lungs can’t cope. That all means that physically I’ll keep going.
Which opens up numerous possibilities to start having a bit of fun.
I want great communication systems. So, while I still have plenty of time, I’m training myself with eye-tracking technology to write up to thirty words a minute as well as control multiple computers. And I’ve trained a voice synthesiser to speak in my own voice. Now I’m researching with the lab that developed it to build in some Expressiveness – so it doesn’t sound like Peter on Tranquilizers.
Together, just those two interventions mean I’ll always be able to hold slow real-time conversations even when all I can move is my eyeballs. And interact with anything that uses a remote control. But that’s just the start. I also want new Hi-Tech senses and robotic abilities to replace the ones that get cut off – so my brain is still using much of its innate formidable processing power.
And I want to force some light into the Dark Void, push back the Nothingness, and populate it with cyberspace, Virtual Reality, Augmented Reality and Artificial Intelligence – with modern technology there is no reason why I must be isolated, lonely or unstimulated.
But above all else, as on every well-conceived scientific voyage, I want to push back the frontiers of knowledge in ways that, if done right, hopefully could help millions of people.
Let’s face it, if you’re going to be diagnosed with a Terminal Disease – ALS is the one to go for.
There’s no pain or nausea, and while we can still move we’ve got plenty of time to rearrange our home environment for disabled living. And that just leaves the pesky issue of it being a Terminal Disease.
Except that it’s not.
It turns out that the Terminal component of ALS is very largely negotiable.
It primarily depends on whether you choose to take the actions needed to let you live. It’s not likely to be the disease that kills you. It’s you. If that’s what you want.
ALS is not really a Terminal Disease. These days, ALS is far closer to an incurable Chronic Disease. It’s not yet treatable to any great extent. But, throw the right technology at it and it’s very unlikely to kill you in “two-to-five years” either. Unless you let it.
Have a feeding tube long before you dehydrate or become undernourished. Have noninvasive ventilation – and then a full tracheostomy – before you struggle to breathe at night. Adopt a rigorous protocol to manage the risks of pneumonia.
And you’ll very likely be around for a long time.
So, I say again, if you’re going to be diagnosed with a Terminal Disease, ALS wins hands down. For as long as you want to stay around.
And I for one am not going anywhere…
Let me strip away all the sentimental emotion around MND for a moment and look at it coldly from my point of view.
In the foreseeable future I’m going to be sitting around a lot more. In a REALLY comfortable expensive chair. I won’t have to work. I’ll be able to think a lot. Listen to music. Write. Read. Surf the internet. Watch as much TV as I like. I’ll never ever again have to interrupt what I’m doing to have a pee. Or get up at night to have to go to the bathroom. Oh, and I’ll never be hungry or thirsty again. In fact, I can even eat and drink while I’m asleep.
Meanwhile, all the boring mundane routine of day-to-day existence will be handled by others.
OK, I’m convinced.
It’s actually not ALL bad!
And I’d infinitely rather live with MND – than die with MND!!
I’m doing everything I can to push back the frontiers of how we can maximise the quality of life for those with MND – and other disabilities. And I’m getting wonderful support from across the board.
Except from Lloyds Bank.
I’ve been a customer of Lloyds for thirty years. I’ve had Travel Insurance from them for ten years, and never once claimed.
I dutifully rang Lloyds Bank Travel Insurance to alert them to my recent diagnosis and ask if I would have to pay any higher premium than usual. [As I’m only in early-stage MND, my medical team confirmed that other than walking I should have no medical problems at all.] I spent a total of about one hour answering questions on the phone.
The next day, a computerised letter arrived telling me that, based on the outcome of medical screenings, my Travel Insurance was DECLINED. No explanation other than ‘Motor Neurone Disease’.
No one ever told me about the major UPSIDES of having MND…
I’m really grateful to Katy Styles for Nominating me and to Richard Coleman for Seconding me to stand for election to the MND-Association Board of Trustees. Now it’s up to the Members! I was asked what motivated me to throw my hat in the ring. This was my answer:
It suddenly makes it REALLY obvious why as the bulbar region begins to shut down with Motor Neurone Disease we quickly suffer from difficulty speaking (dysarthria). My voice is just starting to go. Now I can literally see why! Utterly amazing video. https://redd.it/8f0buc
How can we better manage MND? I’m currently acting as a human guinea-pig on numerous clinical-care and technology research projects. These are just the start!
With the excellent support of the Torbay and South Devon NHS Foundation Trust, I’m experimenting with having three-monthly injections of botulinum toxin into my calf muscles for my leg clonus (rhythmic spasms that are notoriously difficult to treat). Using Botox is not usual for MND, but supplemented by oral propranolol three times a day the effect – on me – has been dramatic. The hypodermic needle in the picture is actually also being used as an EMG electrode to ensure it is in muscle rather than connective tissue, so when the Botox is carefully injected it is guaranteed to be effective
Excellent News: I have just got a provisional date of 10 July for my TRIPLE-OSTOMY surgery at Torbay and South Devon NHS Trust. This pioneering operation will involve a team of three surgeons who between them will engineer a cystostomy, a colostomy, and a gastrostomy all in one operation. Looks like this is a FIRST for MND not just in the UK but also the USA. For me it will be LIBERATING! I am very excited. And grateful.
14th May 2018
I’m really looking forward to the South Regional Conference in Bristol next Sunday of the wonderful (and vital) MND Association. It’s my very first opportunity to meet lots of people passionate about MND and I find the whole opportunity really inspiring. If you find yourself there, please come up to me and say Hello!
15th May 2018
My exceptional Clinical Care team and I are researching how to THRIVE with MND. We are increasingly finding that it is all about carefully Breaking the Rules of MND Orthodoxy. We call it our Radical DisABILITY project. Five Working Guidelines are emerging to help keep us on course. Here they are so far:
16th May 2018
Consistent with my firm belief that MND is the opportunity for a Fashion Statement, I’m just buying a Hi-Tech Hospital Bed that doesn’t LOOK like one! Every motor can be controlled by my eyes using an Eye Tracking system. Grateful thanks to Alex at BaKare and to #NHS – especially Kate Ebdon my Occupational Therapist and Georgina Grimshaw my Neurophysiotherapist @TorbayAndSouthDevonFT and Jemma Newman the clinical scientist @NorthBristolNHSTrust Environmental Controls for such superb help. Who knew that buying the right ‘future-proof’ bed for #ALS involved so many disciplines…
18th May 2018
Everyone told me I should prepare for Ups and Downs with #MND – I just never realised they meant I should order a THROUGH-THE-FLOOR-ELEVATOR…
Here are my Lessons Learned: For a wheelchair/carer to fit inside, the lift needs to be HUGE; it takes FOREVER to be made; it costs a FORTUNE; but, unless you can/want to move home, there’s LITTLE ALTERNATIVE!
What’s more, by far the most important lesson is that – now the lift is at last about to be installed, but my legs are close to useless – we almost left everything too late…
20th May 2018
Just finished the truly excellent MND Association South Regional Conference in Bristol – filled with great people and fascinating speeches. Amongst the many insightful conversations throughout the day I was lucky enough to have a very long chat with Dr Brian Dickie, Director of Research, discussing the major £15.5 million research portfolio that the Association funds. That level of funding has the potential for a MAJOR impact on achieving a world free from #MND. Great stuff!
25th May 2018
I was reminded by a SLT in Liverpool of this great quote from a Chief Prison Inspector over a decade ago. Not to stretch the metaphor too far, access to PROACTIVE Speech and Language Therapists is CRUCIAL long before you get Locked-In the prison of #MND. Purely as a result of great support from the NHS and the MND Association I unquestioningly voice-banked long before I thought I had to. As soon as I’d finished, I got mild dysarthria (problems speaking). PERFECT timing to stay ahead of the curve – but only thanks to pioneering initiatives such as the Voice Banking at Diagnosis Project MND.
29th May 2018
I think it’s absolutely fantastic that Jason Liversidge is standing as a Trustee of @mndassoc! I am too. Wouldn’t it be brilliant if BOTH of us were able to show the world not just how to survive with #MND – but how to THRIVE!!
30th May 2018
I’m passionate about throwing Hi-Tech at #MND so that those of us who are #plwMND don’t just survive but THRIVE. The Sheffield Collar is a perfect example of how apparently simple innovations can nevertheless be transformative. It uses High-Tech #NASA space-suit material with supports. The alternative is a hot, large foam neck-brace meant for sprains!
31st May 2018
I’ve just completed a hat-trick of surgical consultations for what I now discover is a PIONEERING Triple-Ostomy – I’m told it’s the first time it’s ever been done for #MND in the UK or the USA! All three surgeons are tremendously supportive. The op itself is scheduled for 10 July. So, without medical jargon, here’s what all the fuss over my replumbing is about…