Ten years ago today I was walking around the horrors of Auschwitz-Birkenau when an email came in from my Doctor to say that the results of my tests can come back and I had Type II Diabetes. There is an irony there in the speech by Obersturmfürer Hössler to Greek Jews about the enter the gas chambers, which I recorded in the post I wrote the day afterwards. I’ve made the point several times since, orally and in writing, that the context of the place put a harsh perspective on what was a small issue in comparison. And, while the rest of this post, it more a reflection on my journey at least that isn’t over yet, while it was for nearly everyone arriving on that fateful railway line.
Nine years ago today I completed my challenge to complete all 214 Wainwrights in forty days. 450 miles horizontally and 130, 463 feet vertically. The average daily total was 11.26 miles, 3,262 feet in just under 9 hours. The discovery in 2017 that I had no cartilage left under my knees, a permanent consequence of obesity which triggered diabetes, explains the slow average. Going up is fine as are the ridge walks, but going down is a different matter. Using kinesiology tape, two strips per knee after cutting has speeded me up a bit and removed the more severe pain, but I still live in fear of a slip as that will put me out of action for a few weeks and could leave me stranded on the hillside awaiting mountain rescue.
I wasn’t aware last year, although I should have been, of completing that challenge on the ninth anniversary. I was just disappointed that I hadn’t made it on my birthday. But it does make for a good opening paragraph in the Walking through Diabetes book for which I have been keeping notes. Since then I’ve walked around and through Wales, not to mention trekking the Forbidden Mountains in Albania, which was significantly harder than the Annapurna base camp walk. On my 65th I spent the week in the Cradle Mountain area of Tasmania and I’ve rediscovered the mountains of Wales, especially in Eryri and Bannau. It’s good to see us reverting to Welsh names and displacing the Saxon ones by the way. Travel means I have been able to walk in the Rockies, the Columbian River Gorge along with sites in South Africa, the Blue Mountains and coastal paths around Sydney and multiple paths in New Zealand, south and north islands.
Last year I also completed the South West Coastal Path in the UK which has taken around ten years; it was an accident in the early stages that resulted in a hospital consultant suggesting that I might have Diabetes and suggesting I get it checked. I’m eternally grateful for that by the way, otherwise, by the time it had been picked up, it might have been too late to achieve the reversal. I didn’t write a blog post on completion which was remiss of me but I’ve inserted a photo 
of the finish point, which also displays the kinesiology tape and the bulky full-frame camera, in its skout, the discovery of which has made my life so much easier.
I had the good sense to go public with the fact I had Diabetes although it took me a couple of weeks to pluck up the courage and I then documented the whole journey in a series of posts. It kept me honest. people accommodated an issue I was not trying to hide which made things a lot easier. I also take considerable satisfaction that going public encouraged others to follow the same path.
I also discovered that I really don’t like short walks. Even on the road bike (mountain biking is for adrenaline junkies, not reflection), I don’t really like to go out for less than 50km. Being on the hills, or the coast for eight hours or more (five of my Wainwright walks were over 11 hours) allows for reflection and I really despise those who carry music with them onto the hills, even with the privacy of ear pods. It’s also allowed by collector habits to come out, always with justification. I have four sets of boots, one for summer, two for three seasons and one for crampons. And as of this birthday, I also have four rucksacks at 18, 24, 33 & 48 litres. Walking those distances weight minimisation is an issue and given I am normally carrying 2.5kg of camera equipment optimisation of the rest is critical. I’ve also got a little obsessional with GPS tracking of each walk, initially with Viewranger and now with Outdooractive its successor. That means I can prove that I walked the path and it keeps me honest. A few times I’ve had to add several miles to a walk when I made an error the previous day. Interesting I cycle in kilometres but walk in miles. Never really worked out why.
The other thing I have learnt is the need to keep up the exercise and engagement in the world around me. One of the reasons my weight soared was the stress of creating a new business with constant travel. It was the easiest thing in the world to collapse into yet another hotel room (at the peak I was spending 252 nights a year) and order comfort food. OK, there are risks, I’ve broken a rib and had to have eight stitches in my forehead after a fall – still my best-ever tweet by the way. But overall the mountains have been kind, but from time to time remind me not to take them for granted. And from time to time I forget myself and do stupid things.
So this post is here simply as a matter of record and also a part of my project for the last year to start linking current thinking to multiple past blog posts.
For the last nine days I’ve been following this sign around the coast from St Dogmaels to Criccieth. The full sweep of Cardigan Bay complete and my overall three year plan now over 60% complete. 140 official miles in all, but more than that in practice (although I haven’t worked it out yet). In general it was a delight aside from one bleak day with too much road walking. Mind you even that had its high points and nothing like as bad as the sections around Port Talbot and through Swansea where I did thirty miles in one day just to get it over with. From here I need to schedule three/four days urgently to make Bardsey Island before the trips close down at the end of the summer season. Then it is a winter walk around Anglesea and the North Wales Coast to Chester, followed by a quick trot up the River Dee and around Llyn Tegid. That I need to complete to allow the symmetry of three final mountain days to finish on St David’s Day 2017. Those three are: (i) over the ridge of Aran Fawddwy to Dinas Mawddwy via Glasgow; (ii) Maesglase, Cribin Fach and Waun-oer; (iii) the full east-west traverse of tempest torn Cadair Idris to the coast at Llyngwril (which I passed through last week). So a full trip around Wales and back through the Centre and I think I will be the first to do that.
Now I went on this walk at short notice, in effect I seized the day and shifted one meeting to allow the final section. When I left I was very frustrated over a range of business issues. Also the bad fall on Tryfan and subsequent shock of discovering that I am bone-on-bone with both knee caps had knocked me back a bit. The later may require an operation at some stage but I am holding out for stem-cell replacement which is now available and under investigation. My the end of the nine days I had rebuilt muscle that rehab can never restore and the pain the knees had largely gone. There is also a healing process in the rhythm of walking over many days, a series of habits and rituals that create a sense of order in life. I carry a small notebook with me to make notes as I go, and I worked most evenings and early mornings. All in all a lot of the new offerings we are putting together for SenseMaker® came together over those nine days; something that would not have worked sitting at the desk at home. You’ll see some of that in blog posts shortly.
I also sorted out what to do with the notes I have for all of the forty three days complete, the Anna Purna walk and others, especially by 60th Birthday week rediscovering Snowdonia. Aside from putting them up as posts (back filling some 100 posts over the next month or so) I also realised that my original intention to publish a book on the round and through element was not really enough. What I have been doing is to walk through diabetes, so I think that will be the book and it will include more material and be of more value. More on that in the future, but for now, its back to work-work as opposed to walk-think-work. I for one need the physicality of walking, of engagement over long periods to really think properly. Pilgrimage has more than a religious purpose, it is about meaning making.
I took up cycling many moons ago when we lived in Send. I'd more or less given up on running as a means of getting fit and the cycle seemed a better alternative. The country lanes of Surrey proved ideal and I was hooked. I had a hybrid bike then bought from Evans with little knowledge. As luck would have it my final boss at DataSciences, Mike was an enthusiastic cyclist. As a result we had an organised company party on the London to Brighton run and I took part. To my shame I walked up Ditching Beacon but the overall experience set me up for longer distances than the odd hour at the end of the day. So I got more serious and decided I needed a new bike. My monthly review with Mike now became less about my performance and more about designing the bike which was eventually built for me to Dave Yates up in Newcastle.
Life was now a little more serious and, after a week in North Wales which included one hundred mile route around and over the Berwyn Mountains, the next years Brighton run saw me make it ahead of anyone else in the party. From then on I would go out for 30-50km every weekend but regrettably used that as an excuse to have a significantly cooked breakfast following the exercise! Either way DataSciences was sold to IBM and I started the ruthless travel schedule that resulted in my gaining weight and gradually stopping exercise. I briefly resumed around the time of my parents death, but then the pressure of setting up Cognitive Edge and even more travel meant I lapsed.
Three years ago at the Hay Festival I bought another hybrid (I was too heavy for the Yates bespoke bike) and started to exercise again to a degree, that was also when I got back into long distance walking. Then the diabetes diagnosis and the need to reduce weight and increase exercise saw me take both bikes in for a service and get back into some more serious work. A few weeks ago the hybrid was frustrating me, too slow, too thick tyres. The bespoke bike is great for roads but cannot take rough tracks and I wanted to do Lôn Las Cymru this year. For those not in the know that is a 250 mile route from Cardiff to Holyhead and to do that I would need a different bike. So I succumbed to the temptation of a cycle cross, with a more relaxed frame and thinner types so it's more of an off-load tourer and road bike. I've had it a week and have completed three long rides and its a delight, although I need a Brooks Saddle so that is on order. Its pictured above.
One of the things I have realised over the years is that I like endurance. Not for me the adrenaline rush of running or mountain biking. I like to settle in to an all day walk, or a 50km ride in which, after the first half hour I can start to loose myself in the rhythm of the process. It's a form of meditation I suppose and the lanes of Wiltshire are my Yoga Mat ….
This is continuation of my post of yesterday, but expanding on the theme of how you get people to change behaviour and self manage change. Again I am going to illustrate this with my own experience of managing a radical change post my diagnosis as diabetic, so there is an element of personal story here as well (so if that bores you skip the next paragraph and some of the one after).
The day I got the diagnosis I flew back to Berlin to complete the week with the final two performances of the Ring Cycle. Now for the first two I had developed the habit of picking up a kebab and chips (freedom fries for my US readers) from the corner shop next to my hotel after the opera. It was the only place open and it was comfort food. That by the way was the bane of my life with travel. You land late at night, get to a hotel and all you want to do is grab something from room service and sleep. In general that meant burger, chips and a dark beer.
Now I knew from on line reading that had to stop but I was simply overwhelmed by the information provided, there was simply too much to absorb. I ended up using a local supermarket to buy wholemeal rolls and salami plus fruit as a interim measure. Not much changed when I met the Diabetes nurse. I said that I thought I could no longer drink a quart of milk (skimmed) a day and was told that was out, I wasn’t told it was OK to have half a pint or so as part of a balanced diet, it was all don'ts with a slightly patronising tone. I went home and threw all sorts of things into the bin, furious with myself, the advise and life in general. That was one of the black days, and there were more.
Now after few weeks or so I had something I could cope with and it was a set of heuristics or simple rules of thumb, not some elaborate plan. For the record they were:
Now those worked for me, matched what I found and gave me a way of living that did not involve carrying multiple books and apps around with me. They would not work for everyone but what I could have done with is a medically approved set of heuristic options that I could choose from. When you first get a diagnosis of something that is or could be chronic you need something really, really simply to follow to get you started, then you read the manual. A bit like software really 
Heuristics are an ideal control mechanism under conditions of uncertainty and their general form is easy to understand. Compliance is easy to test, but they handle uncertainty. The famous US marines is another example: when the battlefield plan breaks down capture the high ground, stay in touch, keep moving. Better than rules, better than overloaded information.
One of the points I have been making for years is that a degree of failure is inevitable in any system and what matters is early detection, fast recovery and fast exploitation of the new space created. Now this applies to the whole health and life style question and I promised to pick up on a personal example in yesterday's post. My own experience when I was first diagnosed with Diabetes was that the reaction of the diabetes nurse was to start me down a process driven pathway of palliative care starting with diet, then metformin and eventually insulin injections and premature death. My arrival with evidence that a partial starvation approach coupled with exercise could allow a curative pathway was ignored or in the immortal words of General Melchett pooh-poohed although it was (in the immortal worlds of Captain Blackadder) purely circumstantial. My GP was happy to support the process but critically did not propose it.
Now lets look at this in a little more detail. A dietary and exercise approach can reverse diabetes if you catch it early enough, while statins and meformin have multiple side effects. Diet and exercise provide long term change, drugs mitigate the symptoms. Nothing wrong with per se, but they are not the only pathway. However to take that journey I needed multiple reinforcement, from a dietician, apps, a physiotherapist and a podiatrist all of whom not only did their jobs professionally but also talked to me as a adult and responsible human being who wanted to take a curative route. I also picked up multiple negative and positive stories as a result of going public (too many people keep these things to themselves) which provided day to day feedback and reinforcement. Public declarations require more commitment than private ones and so on. The whole thing cost me £250, seven months of my life and transformed my health and well being saving the NHS a fortune in terms if diabetes management and the the many other consequences of obesity (there I can say the word now).
So why not give people that option? It is easy to measure, if you take it and your weight and fitness is not dropping in measurable ways then take the palliative route. The problem is we don't seem to like contextualised coherent diversity we prefer conformity with single pathways. Better still, start the process when people reach 40 rather than trying to make statin prescription universal at the age of 50, that links back to the heading of this post. Once you get through the barrier of diet change life becomes easier and better and you can exploit many advantages. But you have to get through that barrier and that requires multifaceted fragmented reinforcement for a sustained period.
You know it makes sense (sic)
The overall story of my particular journey I summarised in three blog posts for those interested.
Now today was a good day, in fact an excellent day. It started with a visit to the Doctor to get the results of a pre-Christmas blood test. Now this was a big one after six months of diet and exercise I needed sugar levels to be at least stable to know that things were working, if improved better and there was the possibility that I might have managed to reverse the diabetes diagnosis. So I got up early and went in with some trepidation. The Doctor was looking pleased and said that that I had resolved the issue, if I put on weight again I will be at risk of Diabetes, but now I am not even in a pre-diabetic stage. I left as they say with a spring in my step. The crazy thing is that if I had listed to that diabetes nurse when I first diagnosed I would have improved things but not reversed them. As it happens the diet was not too difficult and most could achieve it with a bit of support. The cost of a dietician and some other support is far less cost to the NHS than the long term cost of diabetes. I should have been given it as an option up front, not had to work it out for myself. I was also lucky with the early diagnosis, before my pancreas had lost too much capacity.
I tweeted the result and got lots of great comments back, then on for a lunch meeting with Tony, Meg, Peter and Julia (watch for an announcement there) and then to Stratford for the second of the Hilary Mantel plays and a pre-dinner meal at the Arden hotel, where we had also booked in for the night. It is right opposite the theatre so perfect. I booked in and got the good news of an upgrade and was joined later by the family. I had more than one glass of white wine for the first time in six months and the play was excellent. More on those plays and the character of Cromwell in a future post. At the end of the play it was good not to have to manage a one and a half hour drive home, but just to walk across the road and to bed.
Tomorrow I had long planned a day in the mountains, if the news on the blood tests had been bad it would have been a way of thinking through and coming to terms with something too serious, now it will be a celebration. But I still have 9 kg to go ….
My last two posts discussed by personal journey, and one which is not yet complete. I'll update that from time to time, especially when I close in on my target weight of 82 kg which I should make when I start the 60@60 Round Wales Walk this February. I now want to move on to look at some of the work we are doing in this sector. As I said in my first post my getting diabetes was ironic as it was one of the areas we had selected to look at in connection with a wealth of new offerings using SenseMaker® for health and well being. I need to be circumspect here as some of the ideas need to be in the patent process before we talk about them in any detail. I've learnt to my cost this last year that even some long standing network members (and ones we de facto subsidised on revenue and cash) cannot be trusted, so I am being more cautious than I like. Anyone who wants more get in touch and with a NDA we can talk.
It is worth a quick refresh on two of the key principles of complexity (or rather cognitive complexity as we need to look at human complex systems in a very different way from those in termites nests).
So what are our plans? They start with journalling; getting people to create a narrative record of how they are feeling, what they are doing/encountering on a fragmented, as it happens basis. We can also capture stories and other artefacts at specific points in a journey – a visit to the doctor for example. To give an illustration, staying in a Travelodge near London City Airport a few weeks ago I would have take a picture of the menu and signified it in a negative way. The weather was foul, I was ill and needed to eat but there was nothing on the menu that was safe for a diabetic (or anyone trying to loose weight for that matter). At the same time when I realised that a belt I could not use three months ago as it didn't have enough notches was now too large and would have to be abandoned, that was a small story of progress. I might also record some of the comments from people I have not seen for months and so on.
The idea here is that people at risk would be encouraged to keep such a diary and in some cases it could be incentivised. Insurance companies will already reduce premiums based on monitoring driving behaviour so agreeing to keep a health diary when you pass thirty and move into a different risk bracket should not be too difficult. We are also planning school projects on health that would indirectly influence behaviour. Children on an oral history project for their school on health and well being are great citizen journalists, but also learn and influence as a result. As I know to my cost there is nothing worse than a nagging daughter ….
Critically because SenseMaker® empowers the respondent to interpret their own story we are gathering longitudinal quantitative data which has utility for the individual as well as researchers and health care workers. In the latter case there is no longer a need to depend on reported experience in a consultation as the real time data is already there. I can already give my dietician access to my calorie counting app so she can check weekly and advise rather than rely in my reporting behaviour after the event in a consultation. But even when we meet the full record is more useful for both us than my recall. We can also set up prompts to get people to tell a story at fixed points during the day.
We have already shown on other medical projects that this human metadata can account for some of the variations on more conventional medical data, as we also showed in military environments. Real time mass quantitative human data can explain things that conventional sensors and scanning cannot. With time-stamping and geolocation so it can be linked to medical data for research purposes (suitably anonymised).
Recording real time data for feedback to professionals has value in its own right and a utility for the individual, but now we can go beyond that. We are moving here to the point where people can look at other stories like theres over defined timelines and find stories that match or contradict their own. This appeals to human curiosity, but also allows for the type of serendipitous learning that is key to human discovery and sense-making. It means that someone like me, if I had started this twenty years ago would have encountered similar stories told my someone at the same age, but who is now thirty years on in the cycle and loosing their site or suffering amputation. That is more likely to modify my behaviour that any lecture by a professional, or at least will mean I listen to said lecture with more attention. We will also be building links to connect diets, therapies and the like fragments to fragments to allow for contextual discovery of novel and sustainable solutions.
In a few weeks time I am sitting down with Ann Pendleton-Jullian who is key to this project to work on ways in which the same system can trigger alerts based on those stories to reduce the risk of symptoms of heart failure going unreported until it is too late. This builds on our original weak signal detection work in counter terrorism, and its a very similar problem. Quantitatively self-interpreted material provides a sophisticated anticipatory monitor that can be used by the individual, their family and careers especially in remove areas.
A wider goal is to create a series of progressive steps that someone can take, in which each step is characterised by more stories like this, fewer stories like that that allow for self monitoring and progressive measures, It allows a journey to be small steps on a landscape but I can choose the easiest gradient, or I can choose a hard step. I did that by choosing to take a drastic diet change in the first months which got me to a level where I could maintain it with more ease, but not everyone would want to do that, or have the opportunity for that matter.
All of this is about prevention, but it is also about people and process. Creating self correcting systems that shift problem solving to a much earlier stage in the life cycle. I was passionate about this before I contracted diabetes, but now its personal
Once you have been diagnosed with Diabetes then a whole process clicks into place starting with a meeting with a specialist nurse. Now while my experience of professionals has been mostly excellent this first encounter was deeply depressing. I am intelligent and more than capable of researching a subject so I went into the appointment looking to try and reverse the condition by radical changes in diet and life style. Instead of supporting that I was patronised and in effect told I was on a road to steady decline ending with daily injections and an early death. Now it wasn’t said or intended in that way but it was how it came across and if I had less will power I might well have succumbed.
I came out of that meeting in the first of a series of bouts of depression and generally threw things into trash cans from the kitchen shelves and retreated to inwards reflection and tears with the cat, who has been a great comfort and distraction. I now had to face a battery of tests to see if I was going to go blind, have a leg amputated or suffer kidney failure among other potential side effects.
In reading up on the Newcastle programme (which has shown evidence of reversal) the sense of hopelessness is one of the factors that impacts on people who have been diagnosed. Now I came out of that, but it was not easy and I think this is the first time I have owned up to how I felt in that period. I took a different route, helped in a way by the need to work with a physio on what had proved to be arthritis of a lumbar joint. It was the symptoms of that which had triggered the Diabetes diagnosis in the first place. The Consultant told me not to worry, if I built up the muscle then I would never feel it, along with increasing the exercise regime. So I started pilates classes, worked with the physio every few days and also started sessions with a dietician. If I had not been able to afford that I am not sure where I would have gone as that small group of professions more recently supplemented by an ever cheerful podiatrist (all from the excellent James Hatt) kept me going during that period.
Thinking back I did a few key things:
All of that resulted in one wonderful day when my trousers fell down in a motorway service station. I had been staying in the Travelodge and went across to get a frugal breakfast without putting on a belt. Everyone laughed; I was exhilarated, it was working. Small events like that create milestones that allow you to progress.
So I got to a routine, but it took three weeks longer than it should have. I have some ideas about that and it relates to the feedback loops we are looking to build into a health and well being app. More on that tomorrow.
This is the first of three blog posts I have been asked to write reflecting on the period from April this year when I was told I had type II Diabetes. Since then I have lost 10″ around my waist, lost 25kg and got my fitness back to a level I last experienced in the 1970s. By the time I had my first follow up blood tests at the start of July all blood levels were normal, including a reversal of a long standing high cholesterol problem. I've got another 2″ and 10kg to go and have now run out of old clothes saved so I having to buy new which is providing a short term boom in Rohan online sales. I also realise (and have been told) that I am becoming a weight loss and fitness bore but I confess to being unrepentant.
Now there is a irony in this diagnosis in that one of the iconic programmes I ran after leaving IBM was to look at moving an Australian aboriginal community back to a bush tucker diet both to prevent, and reverse Type II Diabetes. More recently the programme of projects using SenseMaker® with Ohio State University has been focused on Diabetes and stroke prevention. I watched a video of my first presentation there a few days ago and was aware for the first time of just how obese I had become. The human capacity for disillusionment, helped by a Singapore tailor and black clothing should not be underestimated.
The good aspect of all of this is that when I was diagnosed I already knew something about the subject and more over I knew that many people thought the condition could be reversed. That made a big difference as my first reaction was not resignation but rebellion. Talking with professionals since it appears that diagnostic tends to produce one or other reaction. Luckily it turned out, as I said to my Doctor the other day probably the best diagnosis I have ever had and it may have been reversed but I will know more on that in December with the next set of tests.
Of course travel produces unhealthy living and the temptation on arriving late at night in a hotel to have the burger was always high. I also thought that when I was put on medication for cholesterol reduction that I could indulge my liking for ice-cream which of course just made matters worse. Eating while traveling remains a significant problem. It is not infrequent to end up at a hotel where there is literally nothing that is safe to eat. It is also all to common to be told that something is diabetic safe by a chef when you know it is not. We really need a supply side education programme as much as self-education and some sort of shame and labelling programme.
It probably helped that I got the diagnosis by email I was walking around a concentration camp and had reached the point where people were selected for the gas chamber or forced labour. It gave me a sense of perspective that made it easier to absorb the information. It also helped that I went public pretty soon afterwards as that increased the social pressure, I found a lot of good friends also had diabetes but were ashamed of it and thus faced social pressure to eat (or drink) the wrong things.
Tomorrow I will talk about what I did, then in the final post I will talk about where all of this is going with SenseMaker® and Cognitive Edge as its personal this time.
Pictures in this series courtesy of the Diabetes Public Health Resource page
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