DBS Diary 05: The letter

It’s one thing knowing that your operation is to take place in the autumn but quite another to know exactly the date and location. The email (or perhaps that should read THE email) arrived today, confirming in black and white, the date when I go under the knife. No, I’m not going to announce it here but let’s just say that if it goes well, there will be fireworks!

Immediately after reading the email, I begin to notice a change in myself. Suddenly things previously only discussed in the abstract are transformed subtly into tangible realities. And that makes all the difference. ‘In the autumn’ is vague and comforting. The ‘Xth of November’ is unsettlingly immediate. Okay it’s two months away. Plenty of time to pack my hospital bag and be ready. Ridiculous then, as I did, to fish out an overnight bag and start packing it. Better to make a list. And calm down.

I sat for a moment or two on the edge of my bed while I gathered my thoughts. I’d be lying if I said I wasn’t nervous. No matter how routine the procedure, how skilled the surgeon and how reassuring the statistics it is still enough to raise the heart rate a little. That’s only natural. Any procedure in which your brain is opened up to the atmosphere, however briefly, is likely to engender at least a modicum of anxiety. After all, we have evolved skulls for very good reasons – to keep the brain in and the atmosphere out. Neurosurgery respects no such distinction.

Reduced to its basic acts, the surgery is straightforward. You could do it on the kitchen table*.

1)       Toss a coin – heads  for left, tails for right.

 2)      Saw a hole on one side of the skull using a drill and a circular saw attachment (£29.99 in B&Q until the bank holiday). Oh, about the size of pound coin I guess.

3)       Jab the brain with the electrode (that’s the one that looks a bit like a cocktail stick). You might want to practice this stage beforehand – say with a cocktail stick and maybe a raspberry milk jelly until you’ve got the hang of it. Better safe than sorry.

4)       Fill the hole with Polyfilla (or whatever the surgical equivalent is) and drag wires out under the skin to the chest. You remembered the wires, right?

5)       Implant the battery pack (about the size of a Baby Bel cheese portion) on the left-hand side of the chest and connect to the electrodes.

6)       High five the surgical team, wake up the patient and wash down the table ready for the kids tea when they’re back from school.

7)       Succumb to a brief moment of panic when you realise one of the Baby Bels for the children’s tea is missing. Turns out to be in your pocket.

8)       Note to self: cheese has no place in the operating theatre.

Joking aside (you did realise I was joking, right), the first part of the surgery is genuinely Neolithic. Boring holes in the head (trephining) was a popular treatment for insanity, seizures and headaches in those cave dwelling times. If leeches didn’t work, opening up the skull was the next step in the Neolithic manual of medicine. Amazingly, some of those trephined survived. Well, long enough to have the procedure repeated – there are examples of Neolithic skulls with evidence of repeated trephining, some holes being partly healed.

As I write this I realise that I’m probably not painting the best possible picture for those whose enthusiasm for DBS might be wavering in the light of such revelations.  I’ll stop.

Sat on the edge of the bed, my mind wanders beyond the simple list of toothpaste, deodorant et cetera. Soon I’m thinking of the whole surgical procedure and how it’s assessed. For the most part, the presurgical workup involves discussion between patient and the DBS team (neurologist, neurosurgeon, DBS nurse, and a few others) of what to expect. We talk a lot for instance about expectation management. That sounds like some kind of administrative or managerial term but it’s really no more than checking that the patient has good enough insight into their condition to know what kind of improvements to expect. In simple terms, make sure the bar is at the right height. If a patient believes DBS is a cure, they are on course for a disappointment. If they think that a small reduction in tremor is their best possible outcome, then they will be pleasantly surprised.

I like to think that my expectations are realistic and I will go through them in more detail in a later blog as D-Day, or should that be D(BS)-Day draws nigh. In general, I’m more interested in numbers now. I am no longer satisfied with verbal descriptions – ‘the chances of anything wrong are  very low’. what I want to read is that the likelihood of perisurgical stroke, heart attack or infection is X, Yand Z% respectively. For the same reason phrases like ‘big improvements in motor scores‘ fails to float my boat either. I want to see A% improvement in sleep scores, a -B change in gait asymmetry and so on.

I have an innate impatience with descriptors that don’t adequately describe. After all one person’s ‘huge improvement’ is another person’s ‘better but no big deal‘. So I want to see that they both had a 15% improvement in UPDRS scores. Or whatever.

But there’s plenty of time for that. The email detailing the date of my operation invites me to get in touch if I have any questions about the procedure and the time in hospital. They may regret that. Because I have questions. Boy do I have questions.

*No, don’t actually do this on the kitchen table. Or any table. In fact, don’t do it at all. Don’t even think about doing it. This is a procedure for skilled professionals and, in case you’re wondering, no that’s not you.

LPs or CDs?

I started collecting LPs when I was 15. I can remember the record in question (Hot August Night by Neil Diamond) and the first classical album I bought shortly thereafter (Peer Gynt by Grieg). At first I bought infrequently – I was only a schoolboy and my pocket money went only just so far. But I listened to a great deal of music and consequently bought discerningly.

By the 1980s, when I was in my early twenties, with four years of university behind me, I found myself drawing a salary as a research assistant. In terms of stacking up the vinyl I had money to burn. Almost literally. It was an opportunity to buy all those albums I had coveted. No more months of grim self-denial. It was time to splurge.

Almost every Saturday would find me skulking amongst the racks at the HMV Shop on Oxford Street, The Virgin Megastore at Tottenham Court Road or Tower Records at Piccadilly Circus. And for classical music, nothing could beat the Music Discount Centre (formerly Ron’s Music Shop) opposite Charing Cross station. Occasionally I would dive down into the back streets of Soho in search of rare jazz recordings. The shops got to know me and would keep me abreast of anticipated shipments of specialist live recordings as they euphemistically described what everyone else knew as bootlegs. And I walked everywhere, connecting the dots between the tube stations, piecing together a retail homunculus of London’s West End.

One might suppose this to be a young man’s indulgence, put aside or curtailed by each sequential life event – marriage, children and so on, with their associated dips in spending power. Wrong. Although I never quite ever topped the unfettered retail assault of my twenties, the habit continued unabated. I am now in my early 60s and the record (LP and CD) collection stands at a giddying 4000 discs. 4000 discs in 48 years is 83 albums per year. That’s a disc every 4 1/2 days. On average. I don’t know whether I should be ashamed or proud.

The truth of it is I love music. Almost every form or manifestation of music. From the Taiko drummers of Japan to the Fado singers of Portugal. From unaccompanied folk singers in Northumbria to the Symphony of a thousand by Mahler. From the jingle jangle of Javanese gamelan to the woody resonance of a solo cello. A cornucopia of music.

And it had to be on LP or, latterly, CD. I was never a huge fan of cassettes. The quality was never adequate despite the weight of advertising trying to persuade us otherwise. Cassettes flattered to deceive. I started with LPs and postponed the decision to swap over to CD (or not) until the late 80s. I’m not sure why I was so reticent. The price differential between LP and CD was certainly offputting, with CDs essentially double the price of LPs. That wasn’t the sole cause of my caution.

Mixed messages seemed to emerge from the CD lobby. “Perfect sound forever” was the courageous claim of the CD manufacturers. Forever is a long time. And this kind of perfection was difficult to reconcile with those bizarre adverts showing CDs daubed with butter, strawberry jam and whatever. There are surely better ways of demonstrating the durability of this then new vehicle. In any case, it hardly a fair comparison. I have always taken my LPs neat – no butter or jam.

CDs were easy – put them in the tray, press play. That was it. All of it. What could be easier? I guess that was another attraction for many listeners. They didn’t need to worry about any rigmarole.

Okay so the the sound seemed better on unbuttered CDs – brighter, clearer and more detailed. You really could hear one of the trombonists quietly break wind in the seventh bar of Mahler 5. On LP, his blushes were spared by the background rumble, snap, crackle and pop of the LP’s groove. For classical music, the pleasure of hearing the music emerge from silence, apart from the occasional flatulent brass player (why is it always the brass?) was worth the premium. For rock, the claimed advantages of CD were less obvious. And certainly you would have been hard pressed to detect any trouser coughing against the backdrop of John Bonham’s drumming.

I think my reticence in changing over completely to CD was twofold. Firstly and most obviously perhaps, I liked the physical presence of LPs much more than CDs. In the early days of CDs, often the cover design was little more than a scaling down of the equivalent LP and whilst the writing on an LP sleeve was readable, the same could not be said for the minuscule text on the CD booklet. Call me picky but I quite like being able to read those background notes. Especially on jazz albums where documentation is everything – “Jellyroll Morton played this with a sprained thumb causing him to miss the entry in the second bar of Cold Ravioli Blues”. That sort of thing.

But the real root of my reticence is what I called the rigmarole. Secretly I think I quite enjoyed it. Putting the record on the turntable, carefully wiping it down with a carbon fibre brush to clear the surface dust, brushing the stylus with isopropyl alcohol before slowly lowering the arm down onto the disc. It was my way of showing my respect for the music and for the record itself. If I looked after it then it would look after me. So many of my friends paid little attention to such preparatory ritual and paid the price with records that showed their age in the ingrained surface debris and compromised sound.

And what of my LPs, mostly 30 or more years old and largely unplayed for most of those three decades? How do they sound? well, pretty good if I’m honest. With a decent if not state-of-the-art turntable, they have aged well. Protective sleeves have helped. The sound is bright and musical and whilst the flatulent trombonist is inaudible, the rest of the brass section rings out clearly.

I haven’t failed to notice the recent resurgence of LPs. And whilst I was reticent 40 years ago to change from LP to CD, I’m in no hurry to change back again. Sonically I think CDs hold the edge unless competing with the kind of turntables that need a mortgage. Pound for pound, CDs remain superior (in my humble opinion). No end of side distortion, more limited dynamic range and ever so slightly muddier sound quality. Plus, most remarkably, they often cost more than the equivalent CDs. That seems to me particularly paradoxical.

And when it comes to streaming, don’t get me started. Well at least not for the moment.

DBS Diary 03: Drug-crazed double glazing salesman

DBS Diary 03: more questions than answers. Fundamentally I had made my decision upon leaving the hospital after the meeting. I would go ahead with DBS. There really isn’t much else in the way of choice. Yes it could all go horribly wrong but the likelihood of that is very low. Yes it could abolish my tremor and help make me less stiff and more mobile. The likelihood of that, by comparison, is very high. And so on. In simple terms I’m balancing the high likelihood of major physiological improvement against the low probability that I could have a stroke or die on the operating table. It’s a numbers game, nothing more more nor less, with a very wide range of potential outcomes, mostly good. I don’t plan to dwell on the extremely bad outcome scenarios mainly because I have little to say of them. And in the case of the worst possible outcome, obviously I will have nothing to say. But I will be in the hands of men and women who do this every day. I am as comfortable with my decisions as I hope they are with their incisions.

Of course I should have done this first but, over the course of the last seven days, I have been speaking to many of those who have had DBS previously and their stories are illuminating. Not universal certainly, but personal and therefore all the more valid. Some have been reticent, others vocal and in the vast majority of cases, their information has been helpful in making my decision (neglecting for one moment that I had already made the decision). I tried as much as possible to get a random sample of the experience of DBS. I didn’t simply pick the zealots or doomsayers. In the end I think I got a good range of opinion from DAJ, DS, CHH, BC, BL, DP, VA, RB, BS, HK and BT. Among others. Apart from one or two who had a handful of what might best be described as cold feet or post-operative misgivings, the response was universally positive.

To be honest, I was a little sceptical initially. It felt as though they were all reading from the same script, all coerced into speaking the same lines. And were these people I did not know that view might have persisted. But these are all friends, fellow Samurai on the same path of enlightenment. Their views left me wondering what might have happened if I had summoned up the same courage say five years ago.

It’s academic of course. Five years ago I was at a different point on my Parkinson’s trajectory, a more positive point with sunlit scenery. Five years later, there are clouds in the sky and the feeling of rain on the horizon. So it’s impossible to compare directly. Five years ago I did not feel I needed DBS. I felt the drugs could manage the condition. Five years on, I don’t feel the drugs are doing the job. So it’s time for DBS.

When I say time, I do mean actual chronological time. DBS works best in patients who get a good response from the drugs. It is less successful later in the treatment sequence. Put simply, if the drugs aren’t working, don’t expect as much from DBS either. Five years ago I wasn’t ready for DBS. Now I am at that point of acceptance. The irony is that, had I been ready to accept it five years ago, I would have had a better response in all probability. Catch-22.

But what determines readiness? I’m ready, or at least I believe I’m ready now. And I base that on a number of factors. Parkinson’s is a neurodegenerative disease. In other words I’m getting worse. Today was not as good a day as yesterday. Tomorrow will not be as good as today. And so on. Neurodegeneration focuses the mind somewhat. Rather like those people come to the door offering double glazing at a spectacular discount but only if you sign up on the spot. That’s neurodegeneration. So, in a manner of speaking, my brain is coercing me into reluctant surgery. But surely, it’s still the same ‘me’ making the decision whether it be today or five years ago. Well, actually no. It isn’t. Because today me is taking rather more in the way of mind altering drugs (prescription I mean) than five years ago. So now my decision is being forced by a drug crazed double glazing salesman of a brain. Not surprisingly, my mind is bullied into submission. I choose the DBS. What else can I do?

Who are you?

I often wonder what kind of person reads my blog. I can make guesses but generally I’m in the dark. I don’t keep metrics on my website, I don’t know how many people like, dislike, subscribe, click or whatever. I have no notion of what smileys they would use in their response or anything like that. There is no convenient little form on the website that people may complete out in order to ask me questions. My address is on the website and, with a little hunting, can be found. I don’t list the email address in the actual form it would be used – this is in an effort to minimise the number of robotic comments that would otherwise drown the website in a tsunami of spam, a deluge of defamation or an avalanche of antipathy. But if you want to send me a message, and please do, you can find the email address under the “Me” tab on the menu bar.

Why do people visit my website (if indeed they do)? Although some people may read posts and disagree profoundly, I guess that this is a minority. Very few of us will buy a newspaper with opinions diametrically opposed to our own. We might do it every once in a while to get something approaching balance on reporting but it’s unlikely that we will persist with this self-flagellation. On the whole, people buy newspapers that agree with their outlook on life. I think blogs are much the same. People do not generally continue to read a blog if its views are consistently different from one’s own. I certainly wouldn’t. Life is too short.

So this leads me to the obvious conclusion – that your public preferences, interests and private predilections are similar to mine. Perhaps not similar overall but close enough, some of the time, to find it worth returning. I only mention this because I would like to know something of your preferences. On the whole, you and I must have something in common or else you would not have read this piece or the many others on the website.

Eventually I begin to form a picture of you as you probably do of me. I think you probably have a dry sense of humour and a sceptical view of novelty. I guess you enjoy good food and can tell your foie gras from your liver and bacon. I’m suggesting you prefer French reds to Californian whites, British bitter to continental lager, Jags to Beemers. I think you would rather have a small dinner party than a huge disco, stimulating conversation to deafening shouts, malt whisky to Bailey’s, a weapons-grade espresso to a bland Americano. Perhaps you even like Wagner, although I struggle to believe that there is many more than one person out there who does, other than myself.

I would like to believe that you enjoy my writing, not just my opinions. I like word games, alliteration and hyperbole. Sometimes I choose words with studious care, like an engagement ring. At other times I grab a handful and throw them, Jackson Pollock style, onto the page. I like to keep dying words alive – like outwith, so rarely heard south of Kelso. I like making words sing and dance or stand, like a guard of honour, in unflexing line. Do you feel the same?

Maybe I’m wrong. Maybe you are nothing like me. Perhaps you prefer skeleton dry clarity to the well fleshed verbiage of circumlocution? Maybe you merely tolerate these lexicological longueurs in the vain hope that I will eventually get to the point.

Maybe you know me. Maybe you don’t. Maybe you have a picture of me in your mind, quill in hand, writing, after midnight, by flickering candlelight. Or perhaps you see me dictating into my computer in the bright morning sunshine, sips of coffee bringing words to mind, blinking in the light.

When you write a blog, or anything really, you invite opinion, agreement, disagreement, anger, laughter and a whole bundle of other stuff. On the rare occasions that I do receive direct feedback, it is usually pertinent, well-written and unambiguous. Mostly it is to agree, in general, with something I’ve written but to question detail. Sometimes it is to argue a counter position, forcibly and directly. Most people don’t write to me if their experience is neutral.

At the end of the day I can only guess why you read my blog. What do you get from it? Will you return? Did you return even? I would love to know your thoughts.

Terunofuji, yokozuna!

I’ll let you into a secret – I have been a follower, a fan even, of sumo for more than two decades. I even have my own black silk mawashi, the loincloth in which they wrestle, a gift from a sympathetic friend. Yes I appreciate the image of me in a mawashi is not for the faint-hearted and I apologise for that.

There is, of course, no sport quite like sumo and to the non-Japanese probably none more bewildering – two fat blokes trying to push each other over, yes? For the vast majority of casual observers these notions represent the limit of their understanding. Images of inflatable costumes at comedy events. The target of contemptuous laughter rather than reflection on a serious and treasured national sport with roots in Shinto and rituals over a thousand years old. Yet to disparage sumo is to deny oneself deep insight into the Japanese lifestyle and psyche. For sumo, with its infinite emphasis on belief, symbolism, ritual and meaning holds up a mirror to Japanese society.

Professional sumo in Japan is organised into six divisions but only the top two – juryo and makunouchi – need concern us. Juryo is like a giant railway station for wrestlers (rikishi) either slipping down the rankings towards retirement or stopping briefly on their road to the top. Everyone is going somewhere – acclamation or oblivion. The top division, makunouchi, consists of 36 wrestlers subdivided into a further five categories – you still paying attention? In ascending order these are maegashira, komosubi, sekiwake and ozeki.

But that’s only four categories I hear you say. Good, you have been paying attention. And yes, there is one further category, the very apex of sumo society – the grand champion or yokozuna. I’ll come to that.

In Japan, that most hierarchical of societies, the banzuke or table of rankings is everything. A measure of one’s worth against one’s fellow wrestler. Yokozunas, East and West, stand at the top of this ranking. Below them, their position determined by their performances on the dohyo, are the remaining wrestlers. The mere champions or ozeki can lose up to a third of their bouts without questions being asked. One of the privileges of achievement. There is a certain degree of fluidity in the ranks up to and including ozeki. It’s a bit like snakes and ladders. Throughout the lower ranks, a winning record or kache koshi (8-7 or better) takes the wrestler up the ranking ladder while a losing record or make koshi has him sliding down that snake. Ozeki are given a little more breathing space. A losing record in the tournament makes the offending champion kadoban (at risk of demotion). An ozeki needs to have a losing record in two successive basho to forego the rank.

Seated high above the everyday comings and goings of the banzuke, yet central to them, the yokozunas are under close scrutiny at all times. You might presume that, if an ozeki gets two shots at retaining their rank, a yokozuna might get three. Yes? Alas no. For a yokozuna there is no such leniency. A yokozuna simply cannot lose. Nor can the be demoted. The only out for yokozunas is retirement, sometimes after not-too-subtle prompting by the Sumo Association. A yokozuna who loses more than two bouts of the fifteen that compose a tournament or basho will often diplomatically acquire an injury mid-basho that necessitates his withdrawal from the tournament. Those that eschew withdrawal and fight on risk resignation. And heaven help the yokozuna who ends a tournament make koshi. It has only happened twice to my knowledge in over a thousand years. Despite these strictures, yokozuna remains the highest aspiration of any sumo wrestler, the definition of their careers.

In many ways, yokozuna is more than a mere ranking on the banzuke. Yokozunas stand apart from the rest of the classification. While the others are wrestlers representing their own stables or beya, yokozunas are essentially gods or kings with a spiritual commitment to the sport itself over their individual beya. Promotion to yokozuna is based not just on performance in the ring, or dohyo (which nonetheless needs to be exemplary), but on their dignity of character and embracing of their position in Japanese culture. Upon promotion, many new yokozunas often spend time at one of Japan’s many Shinto shrines to get them into the right frame of mind to assume the duties of a god. That’s why Japanese wrestlers have a head start. So few yokozunas are foreign but I’ll come to that later. Fewer than one in thousand wrestlers will make it to yokozuna.

Until Wednesday there had only been 72 yokozunas in the history of sumo, more than a millennium long. On Wednesday, the 73rd, Terunofuji, a Mongolian rikishi was chosen. Making a brief appearance for the media, Terunofuji thanked the authorities for their endorsement of him and promised to uphold the historic values of the yokozuna.

Terunofuji’s promotion marks the final step in what has been an unprecedented climb from the depths of the banzuke. But in reality his promotion masks flaws and inconsistencies in the appointment of yokozunas. Many overseas wrestlers feel they have to exceed higher qualifications than their Japanese equivalents in order to be found in possession of hinkaku, that elusive combination of power, skill and dignity upon which putative yokozunas are assessed. Often overseas wrestlers are found wanting in one or more of these nebulous criteria and fail to make yokozuna. Nowhere are the criteria written down. Typically at least two tournament victories without a lapse in performance in between are needed for consideration as yokozuna. Occasionally, for a Japanese wrestler such as Futahagaro, at a time when there were no other yokozunas, the bar was set as low as two runner-up tournaments. He never won a single basho as yokozuna. Or at all. Scalded this by the fallout from the premature promotions of Futahaguro, Onokuni and others, the board has tended to be reticent in its more recent dealings. Terunofuji was given the target of three successive tournament wins or equivalent, a breathtakingly tough and exacting requirement. Nevertheless he won in March and May. On Sunday he finished second only to Hakuho, fulfilling the criteria set out. And on Wednesday he became the 73rd yokozuna. Here’s how.

Banzai!

DBS Diary 02: Rolling the dice

Yesterday was the big day. Well, technically, one of a number of big days. But, in this case, the day upon which all other days rest. The day I met the hospital’s multidisciplinary DBS team and they had a chance to meet me. Four of them, two of us (my younger daughter came to assist) and a nominal three quarters of an hour to answer some pretty big questions. Put like that it begins to look like speed dating. Except for the fact that several of them wanted to stick electrodes in my brain. Not there and then you understand but at some point.

I was expecting a sales pitch in essence. I was expecting to be bowled over by hyperbole and misplaced enthusiasm. I could not have been more wrong. We talked about realistic expectations, about side-effects, about benefits and so on. And all in the most sober down-to-earth manner. They did not try to “sell” me on the idea of DBS. Throughout the consultation they emphasised that it was my decision and mine alone whether to go ahead but that, in their view, I met the criteria for DBS. The ball was in my court.

But the thing that impressed me most was their willingness to bandy numbers with me. Now, as you know, I am a grizzled old neuroscientist, strong on statistics, light on fluffy feelings. Like so many scientists, I am unmoved by “very rare” or “relatively common” or “in a proportion of cases”. One man’s “very rare” is another man’s “not at all” or “rare but not unknown”. It reminds you the old Woody Allen joke about the man and his wife separately seeing their shrink and answering the question “how often do you have sex?” with “hardly at all – maybe three times a week” and “constantly – maybe three times a week”. Well it made me laugh. But my point is that descriptors provide nuance but not detail.

Start using numbers and it’s a different matter. The moment you start saying “one in 30”, “62%” and “11/19”, you have my undivided attention. I understand numbers. Numbers are the language of science. My PhD supervisor and good friend Zyg had a very simple maxim – “if you can’t describe it in numbers, it’s not science”. Although I might quibble over the minor details, it nonetheless carries weight as a general rule. And so it was yesterday. They spoke to me in numbers, instantly setting me at ease.

In the end, DBS surgery inevitably presents risks. They explained them to me in numbers – my likelihood of dying, of being seriously damaged, of minor complications, and all the perioperative niggles. And they gave me the numbers for improvements in tremor, movement, stiffness and so on. And they told me all the things that DBS would not help such as balance, even gait to some extent. Each number was presented neutrally, with no change in expression to indicate personal views although, in fairness, the facemasks probably eliminated all nuances of expression anyway. Itwas all a case of deciding where the risk-benefit fulcrum lay and totting up the numbers.

My daughter and I were a good double-team. I would pitch in with the question, then she. We alternated, each presenting a different facet of our collective anxieties. And one by one they answered each to our satisfaction.

Perhaps the most personally satisfying moment occurred when I expressed my reservations about the likelihood of achieving the kind of results found in younger PD patients since I’m 63. The surgeon, with a smile I could see behind his mask, said it’s not a case of chronological but functional age and he had seen my MRI scans and was satisfied that this was a good brain without evidence of atrophy. In essence the cranial cavity was filled with brain rather than cerebrospinal fluid. Good to know. And fingers crossed of course.

All other things being equal, they felt I was a good candidate and were happy to operate with one proviso which I’ll cover in the next blog. The whole tenor of the discussion was positive and engaging. Once I had DBS done, I was part of their family forever. It was more than just a surgeon/neurologist speaking to a patient. They would look after me. It was warming.

Their final words to us, as we left, were that we did not have to make a decision on the spot. We should take some time, reflect upon it and then let them know the answer.

My daughter and I headed to a nearby coffee house to regroup and discuss what we had heard. Nothing is of course without risk. Would I considered this procedure 10 years ago? Obviously not. And I know for a fact that I didn’t even entertain the idea, so determined was I to fight the illness in my own way. But time brings a degree of maturity and understanding. We throw away the foolish fancies of youth and make sober judgements where once we would have dismissed with flippancy. But back then I needed DBS like a hole in the head (I’m sorry, I couldn’t stop myself).

Now I recognise it for what it is. Part of the modern armoury in the treatment of PD. Who knows, it may one day be a condition remedied entirely by surgery. Wouldn’t that be funny. True the procedure is mediaeval, barbaric even. Liked trephining, practised in Paleolithic times. Maybe they had DBS 3000 years before Christ. (No, don’t rush to Wikipedia). It’s not a serious suggestion.

Even for somebody who revels in numbers, it is quite sobering to apply them to one’s own predicament, to reduce one’s own future to a series of calculated risks and gambles. Rather like Douglas Adams’s computer in The Hitchhiker’s Guide to the Galaxy, my future could be described by a relatively simple quadratic equation. The probability of this, the likelihood that, the risk of the other. All reducible to numbers. Yes, things could go horribly wrong. I might even die. It is technically possible but extremely unlikely. Much more likely is that it would go well and I would achieve at least some meaningful benefit for the next several years. It comes down to a balance of probabilities, nothing more nor less.

I caught the train home with the surgical team’s words echoing in my ears. It was my decision and my decision alone. “Take your time”. I didn’t need to.

It’s time to roll the dice.

DBS Diary 01: How I reached this point

DBS Diary 03: The hard yards

Not quite the end of the road

I had a phone call yesterday afternoon. The usual thing – number withheld. Not normally the kind of phone call I would answer. Mostly nuisance calls, people trying to sell me insurance, invitations to timeshare evenings, free valuations of property and the usual get rich quick schemes. Experience has taught me not to answer these calls. The vast majority leave no message.

But for some reason I can’t put a finger on, I decided to answer this one. A soft-spoken Welsh voice asked for me by name, explained who he was in a manner credible to me and asked a couple of legitimate security questions.

He explained that they had received my letter of a few weeks ago outlining my concerns over their decision-making process, acknowledged the validity of my arguments and had chosen to reverse their original decision. A couple of letters would follow within a few days to confirm what he had said by phone. I thanked him politely and he reciprocated, thanking me for my understanding.

Who was it? The DVLA.

And the decision? To rescind their original revocation of my driving licence and to reinstate the aforementioned.

I have always felt that there is virtue in civility when writing letters of complaint. When the DVLA had originally revoked my driving licence I chose, rather than write a long tirade of angry impotent bluster, to present my arguments politely but firmly, inviting them to think again, to reflect upon what I felt was too hasty a decision.
In essence I asked them, in the general tenor if not explicitly the same language of Oliver Cromwell:-

“I beseech you, in the bowels of Christ, think it possible you may be mistaken”.

I didn’t actually use Cromwell’s words but the sentiment was there.

And as I said, he thanked me for my understanding. “Most people just rant and rage at us” he said.

“I can imagine” I said.

Manners … Maketh … Man.

Flying in the face of all scientific logic

For months now we’ve been told that 19 August will be “Freedom Day”, the symbolic lifting of most if not all pandemic-induced restrictions. Indeed, so imprinted on the national psyche has this date become that its preeminence overcomes all reason. We will apparently reopen for business/leisure irrespective of any countermandering considerations. Apparently so strong is the government’s faith in vaccination that its collective myopia towards the more stark statistics holds sway.

Apparently the UK is now a safe place to visit and live. You need have no fear of coronavirus infection here. This is the message coming loud and clear from the Prime Minister and his apparatchiks. The link between infection and hospitalisation is broken. All is well.

If you’ll forgive me a brief profanity, that is – to use the correct scientific term – utter bollocks. The notion that one is protected completely, sealed into our own immunological bubble, by two jabs of a vaccine is a palpable nonsense. Let me give you an example – a good friend of mine held a dinner party outdoors three weeks ago for six people. All were double jabbed. All six caught Covid at that dinner party. At least one was hospitalised. So if you believe that two jabs is the route to immortality, think again.

Throughout the last several months of lockdown, the government has subtly shifted from its initial position that science was the sole determinant when lifting restrictions to its current cavalier approach in which good news trumps good science. So determined is Johnson to be able to put on his happy face that all reason has been scattered to the four winds.

Let’s examine some stark statistics. During the second wave of infection in the UK, cases peaked at around 75,000 per day. Current rate of infection is around 25,000 cases per day. If it follows the previous wave (and there is a evidence to support the view that it will be faster, being the Delta variant, then we will hit 75,000 cases a day around early September. And there is reasonable evidence that it will exceed 75,000 cases a day by significant margin shortly thereafter.

Now I’m just a jaded old scientist – I’ve seen it all before – but the disconnect between political pragmatism and pandemic proportions has never been more striking than at present. All the science tells us not to lift the lockdown. But the need for good news apparently trumps all reason.

But perhaps the most remarkable sight of all was the presence of Chris Whitty and Sir Patrick Vallance apparently toeing the political line. Shame on you, gentlemen. We were relying on you to drive a juggernaut of logic through the vanities of government policy. Sadly, you seem to put your duty to public health in the wrong hands.

So where do we stand? About 15 months ago I remember hearing Boris Johnson thinking aloud and, briefly flirting with the idea of a “take the hit” strategy. In essence herd immunity. It’s hard to believe that more than a year later he is in essence asking the same question again.

The idea of such a strategy being adopted in the presence of this new hyper- infective variant gives me chills. Yesterday there were 400 hospitalisations for Covid. If the government’s own projection is accurate, the health service will be swamped within a month. And probably worse than during the second wave. That’s the reality.

“Dictated by data not dates” said Boris. Yeah, whatever happened to that idea?

The Gateshead Flasher

Since 15 February 1998, the skyline approaching Gateshead has been dominated by a gigantic semi-abstract sculpture, 20 m tall and 54 m wide, overlooking the A1 as you approach from the south. Like the Colossus of Rhodes, standing over the road. You can’t miss it.

I have always been impressed by The Angel of the North. It seems to me to be the kind of civic artistic/engineering project that rarely finds funding. We are, at civic level, a rather peevish nation disinclined to pump money into large public gestures. The French think nothing of placing glass pyramids outside the Louvre. The Germans are happy to see the Reichstag wrapped in fabric. But in Britain? Surely not. So it took some fairly visionary thinking (in UK terms anyway) to see this project through to completion. There were objections all the way with arguments ranging from the ideological – it looks like a Nazi sculpture to some – to woollier counters that it would cause car crashes on the A1 or even, most risible of all, interfere with TV reception. Even its creator, Antony Gormley, was disparaging, at one point dismissing it as “motorway art”. I’m surprised it hasn’t been called to account for the coronavirus outbreak.

Objections have largely faded away since the plans became architecture. What looks deceptively simple on paper, banal even, is lent an undoubted presence by its sheer scale. What seems enormous from the road is positively gigantic when approached on foot, its presence and dominance unquestionable. This is no “blight on the landscape”, no “carbuncle on the face of the earth”. This is a masterpiece, plain and simple.

But what does the Angel say? I have seen countless pictures of the Angel of the North, driven past it by car and train but, only last week, did I approach the statue on foot. And to do so is to be drawn in to another layer in the onion of its meaning.

I know what you’re thinking. “Jon’s lost it”.

I don’t think so, well not over this at least. Ask yourself this question – what is this statue saying? Personally I think the posture of the statue is ambiguous and deliberately so. It’s gesture, arms/wings outstretched can be interpreted many ways. Are the arms and wings a single structure – in other words does it have a pair of wing arms or are they separate, arms tightly by the sides, wings outstretched. Arms, even vestigial arms, held firmly to attention suggest a subservient response to authority. The wings then might be seen as in conflict, spread in silent opposition to that same authority.

Does the statue stand in defiance of the perfidious South? Are the outstretched arms blocking access to the North to the southerners? Do they speak loudly and say “you shall not pass” in recognition of centuries of economic exploitation by Westminster?

Are the outstretched wings a display, like those of tropical birds, a gesture of potential, inviting interest as potential suitor? An invitation rather than a repudiation?

Are the wings meant to symbolise some union between earth and sky? Gormley talks of connections with the ground and the mines in the region, perhaps alluding to the transmogrification of coal into air by burning.

Who knows? And ultimately, who cares?

For many locals, it still known as the Gateshead flasher.

The mighty Jaffa Cake

First introduced by McVitie and Price in 1927, the Jaffa cake is nominally 54 mm in diameter and consists of a layer of sponge, then orange jelly, topped with plain chocolate. A beautiful marriage of three components into the very apotheosis of snack confectionery.

I don’t plan to become embroiled in the ‘is-it-a-biscuit-or-a-cake’ debate so let’s put that one to bed immediately. It’s simple really. Ask yourself this question: what happens to a biscuit when left out for a few days? Now what happens to a cake under the same unfortunate circumstances? And the final part of this baking invigilation – what happens to the Jaffa cake?

If you have answered those questions honestly you are led to a single inescapable conclusion. Biscuits become soggy, cakes dry out. And what does the Jaffa cake do? That’s right, it dries out. It is therefore a cake not a biscuit. Point proven. We’ll hear no more.

In any case there is a clue in the name.

And as if that wasn’t enough, the Jaffa cake is legally a cake not a biscuit. In 1991 a VAT tribunal ruled that it was a cake, vindicating McVities’s submission. Lest you think this to be frivolous legislation, be aware that biscuits and cakes are taxed differently in the UK. It was a matter of some financial import that the Jaffa cake be assigned correctly and could finally come out of the closet as a cake after years of living a lie.

Experts were called and duly gave evidence. McVities submitted that the product’s texture was that of a cake. The Crown countered that the Jaffa cake was the size of a biscuit and therefore conceptually one. McVities drew attention to the name of the product. Unbowed, the Crown contended that Jaffa cakes were typically sold alongside biscuits not among the cakes. McVities fought back, arguing that the product’s major constituent was sponge not biscuit. The Crown responded that they were eaten with fingers like a biscuit. A long and bloody legal tussle, taking the machinations of a fine legal mind in Mr Donald Potter QC to finally adjudicate in favour of McVities and their cake case and make his ruling accordingly.

The biscuit movement was trounced, sent packing to lick their wounds. Don’t get me wrong – biscuits are part of the cultural heritage of the UK. Who would wish to be without such delights as the jammy dodger, the chocolate hobnob, the ginger nut, even – dare I say it – the mighty custard cream. Fine products all, proud flagbearers of the biscuit tradition. One might even, to placate our colonial cousins, grudgingly concede a place to the Oreo cookie in the biscuit pantheon. All of which cookie controversy, bakery ballyhoo and general stuff and nonsense is irrelevant here. Because the Jaffa cake is a cake.

And a prize-winning cake at that. In 2012 the Jaffa cake was top of the pile, winner of that most coveted of crowns the “bestselling cake or biscuit in the UK”. As a long-term advocate of the little orangey blighters, it was like watching your own child’s graduation and acknowledging, with expanding midriff, one’s own role in that retail triumph.

The nation loves Jaffa cakes. In fact the scale of manufacture is breathtaking. A production line 1.6 km in length (that’s a mile to us old traditionalists) winds its way through a factory covering an acre round-the-clock to satisfy the country’s sweet tooth.

For such a magnificent exemplar of the baker’s art, it is astonishing that McVities never registered “Jaffa cakes” as a trademark. Leaving aside what must have been a serious financial miscalculation, one cannot ignore the extent to which cheaper supermarket imitations have besmirched this noble brand. Waitrose Jaffa cakes are one thing but can you imagine the Jaffa cake in the hands of Aldi? It’s like passing the port to the right at a regimental dinner. You just don’t do it.

I am ambivalent about Jaffa cake variants. On the one hand I’m a traditionalist but at the same time I like to reward endeavour. We should probably gloss over whether something flavoured with a fruit other than orange can truly bring honour to a product with the word Jaffa in its name. Nonetheless, the above nominal infelicities notwithstanding, McVities make limited editions from time to time with pineapple, lemon and lime, strawberry and blackcurrant flavours. I have seen generic Jaffa cakes with raspberry filling and even black cherry versions finished with white chocolate. This year McVities have even released passionfruit Jaffa cakes! The company seems determined to span the globe of flavours. Let’s hope they stop short of durian.

But of course it all bears witness to the enduring love affair between the British public and this ‘grand dame’ of teatime. To paraphrase Harold Macmillan, we’ve never had it so good. We live in a Jaffa cake golden age.