DBS Diary 07: Hiccups…

A couple of weeks back I had my pre-med assessment for DBS. The usual stuff – ECG, height, weight and the usual bloodletting. I was issued with my Hibiscrub body wash along with detailed instructions. Trust me it’s never going to take over from Old Spice (or Lynx for you youngsters). Still, it does its job. All of which is to render me as nearly aseptic as possible going into theatres.

I offered to get my hair cut to regulation marine/skinhead length before the operation on the assumption that they were going to do that anyway in order to drill the holes necessary. Rather surprisingly they declined my offer on the grounds that it ran the risk of damaging the skin and thereby allowing infection. Apparently they prefer to just tease the scalp apart. That shouldn’t be too hard – my hair is relatively short anyway. More Bobby Charlton than Laurence Llewelyn Bowen.

Nor was I to shave my chest – I can honestly say that that one never occurred to me. Not now, not ever. My brain is, after all, in my head not my chest. I’m sure my surgeon knows that. But in fairness they have to do a bit of slicing there as well to insert the battery pack. I don’t know yet or have been told and forgotten whether I’m to have a long life battery pack or a rechargeable unit. Either way they are about the same size as a pack of 4 AAs. As I understand it, the non-rechargeables last about 5 years or so but then have to be replaced – which means slicing you open again. The rechargeables have a longer lifespan but you have to recharge them weekly on average.

I was sent on my way with instructions on quarantine. “Just don’t catch anything between now and then” I was told “otherwise we may have to rethink”. I saluted and promised to stay out of trouble. I know full well what that meant.

I wasn’t worried. I don’t catch colds or flu. My childhood was largely free of the kind of snuffles and low-grade infections of childhood. Can’t think when I last caught a cold. No worries.

I thought no more of it. Until Tuesday evening that is, when the unmistakable tickleof a sore throat began to emerge. And here’s the rub – because of the effects on blood clotting, you can’t reach for the ibuprofen and aspirin. Strictly forbidden. All of which left me with vitamin C and paracetamol, hardly heavyweights in the analgesic arsenal. Still, I thought, it’s probably just a feathery tickle.

By Wednesday, the experience was less one of feathers being gently played over my tonsils than of my thoat being addressed with an orbital sander. Explosive sneezing and the beginnings of a chesty cough completed the symphony of symptoms. If it stopped there I could have written it off as side-effects of the seasonal flu jab I had on Monday. It didn’t. And the more it evolved it became clear it was a chesty cold. Or trying to be one. I did a couple of lateral flow Covid tests just in case. Both negative.

By Thursday, I felt rough enough to stay in bed all day. Plenty of fluids, paracetamol, vitamin C and throat lozenges. Not exactly a balanced diet. But then I was hardly hungry. I emailed the hospital DBS nurses to get their thoughts. Pretty much as I might have anticipated, they emphasised that this was less than ideal preparation for an operation in a fortnight. It needed to be gone and soon. They set a deadline of Monday (it’s Friday now) for recovery or they would have to consider rescheduling.

Oh yes and the latest HbA1c value needs to be a lot lower than it was in July when last measured. It’s a double whammy. Failure on either count next week will mean an automatic ‘no go’ decision. Throw in the current exponential rise in Covid cases nationally with likely pressure on beds and there is a further tier of uncertainty.

How do I feel? Hard to say. I don’t want them to conduct the operation if I’m not fit enough for it or there is a much higher risk of Covid infection. Nor do I wish them to turn away some poor soul with Covid in order to do my op. That would be horribly unjust. But nor do I wish to be put on pause indefinitely. We should at least know by Monday.

My friends tell me I’m a worrier. They’re right of course, always have been. Too late to change my spots now!

Cerberus!

According to Greek legend, the name of the dog that guarded the entrance to the underworld was [a] Fido, [b] Rover, [c] Mr Shnuckums or [d] Cerberus?

If you answered ‘a” or ‘b’ you clearly have a healthy relationship with dogs but a woeful lack of knowledge of Greek mythology. More time listening to Mr Crawford in school assembly and less pulling Sally Moffat’s, pigtails would have been useful. If you answered ‘c’, well I don’t know what to say but you should probably consider pets other than dogs. No, the answer was of course ‘d’ Cerberus.

Cerberus guarded the underworld. And I have always wondered about Cerberus. Why exactly would you need a guard dog to prevent entry to the underworld? I’ve always thought of Hades as rather like post-Brexit Britain – nobody actually wants to come in. Indeed, staying out of Hades was the principal life objective of the ancient Greeks. Along with all that vaguely homoerotic Leonidas-and-his-300-Spartan-heroes stuff. Either way, whether you were rubbing oil into each other’s pecs or writing sonnets to Apollo, the idea was to stay out of Hades. I think it’s fair to say that Hades had very little in the way of voluntary clientele. And as far as I know there was no passing traffic. So Cerberus presumably served to keep people within Hades as much as without.

That takes a special kind of dog. Let’s face it, we are not talking miniature poodles here. No chihuahuas, Pekinese or dachshunds need apply. The job is way above their pay grade. No, this job calls for a very big dog – something that doesn’t fit with any of the Crufts breed standards. Something huge. Think great Dane or American mastiff. Then double its size. Something with the jaws of a pitbull and a slavering mouth filled with lots of enormous and very sharp teeth. Oh yes, before I forget, three heads. That’s right – count them. Three. And a matted fur of snakes. Throw in a short temper and you have it. Walkies.

The stuff of legends you might think. And yet we encounter the modern equivalent of Cerberus almost everyday. A creature so fearsome and intimidating that we quake at its mere mention. A creature unyielding in defence of its territory. I’m talking of course of the modern medical receptionist. A beast with one purpose in life – to prevent you from speaking to your doctor. Of course not all of them have three heads (except in rare rural communities) and the snakes are no longer a mandatory part of the uniform. Some may even, to the casual observer, seem comparatively normal. You wouldn’t even necessarily spot them in the street. But in their natural habitat, between you and the waiting room, behind a screen of glass or Perspex, they hold dominion, like a pride of lions.

Cerberus: “Yes?”
You: “Can I have an appointment with the doctor please?”
Cerberus: “Why?”
You: “Because I think I’m unwell.”
Cerberus: “Are you well or unwell?”
You: “I don’t know. I was hoping the doctor would tell me.”
Cerberus: “Well he’s very busy. What’s wrong with you?”
You: “I’d rather not say here.”
Cerberus: “I can’t decide if you’re unwell then”.
You: “Perhaps the doctor could decide what’s wrong with me?”
Cerberus: “He’s very busy. I told you.”
You: “Can I please just have appointment with the doctor?”
Cerberus: “Don’t take that tone with me!”
You: “What tone?”
Cerberus: “Like you have a right to see the doctor.”
You: “Isn’t that the case?”
Cerberus: “I’m just doing my job. If you don’t like it, you can go elsewhere.”
You: “I don’t want to go elsewhere. I just want to see a doctor.”
Cerberus: “Why?”
You: “We’ve discussed that.”

And so on, ad absurdam.

Pitting their own wits against your reluctance to publicly divulge the location of those sores, or the frequency and explosivity of your bowel movements, the medical receptionists are unassailable. None shall pass. A top-level medical receptionist can keep a waiting room empty on their own. A few louder than necessary questions about that rash has even the most strong willed fleeing.

What deranged model of healthcare seriously proposed that the receptionists could triage patients safely? And this is not necessarily a criticism of the receptionists per se but they should not be put in that position. How many patients have suffered unduly because their condition was not deemed important enough to warrant an appointment with the doctor? So many conditions present with similar signs and symptoms that they are indistinguishable to the unskilled eye.

This is not the medicine from my father’s day. For 40 years a GP in Doncaster, his receptionists ushered in the anxious and soothed the stressed. They did not ask impudent questions. They did not humiliate in the name of triage. That was not their job. My father saw them all. If they came to the surgery feeling unwell, they would be seen. Even without appointments. And if they could not come to the surgery, he would go to them. Think about that for a moment. When did you last have your doctor come to you?

But the last quarter century has somehow bred these monstrous self aggrandising creatures who take it upon themselves to block the channel to consultation. Or maybe I just don’t understand – perhaps receptionists are more highly qualified than doctors to make medical decisions. Maybe their three day telephone answering course gives them greater clinical insight than seven years at medical school. Perhaps they know instinctively that your recent bowel problems are just indigestion and not Crohn’s disease. The same with your shortness of breath – they know it’s hayfever and not lung cancer. I wonder how many doctors know what their receptionists are doing.

This is where I put in my usual caveat – you know the kind of thing. “It’s a small proportion of receptionists who give the rest a bad name”. That sort of thing.

We’ll never know because we’ll never get close enough to the doctor to find out.

DBS Diary 06: What if…?

This is probably a tricky subject for many. Not everybody likes even to acknowledge the possibility let alone make any kind of provision for such an eventuality. And it’s true that the odds are good. Whereas variable positive outcomes are commonplace, disastrous failures are rare. Depending on prior expectations, the results generally fall somewhere between mild disappointment through to outright ecstasy. And this is the territory in which the vast majority of prospective DBS patients will inhabit. When you ask most of those who have had DBS whether they would do it again, the answer generally is a resounding ‘yes’.

And, as someone about to undergo the procedure, that’s very encouraging.

But, in a spirit of full disclosure, let’s not forget that there is a tiny number of patients for whom failure is not simply a lack of significant benefit but a genuine life-threatening emergency.

When you consider the mechanics of it all, it’s not surprising that there are a proportion of such outcomes. A very very small proportion of the total undergoing the procedure but a finite number nonetheless. And that’s probably not surprising. Although very fine wires to the naked eye, electrodes are, in neuronal terms, enormous. A nerve cell body maybe 25 µm across, vascular lining cells of similar dimensions. Electrodes on the other hand, even of such delicacy as these, are at least an order of magnitude larger. As they push their way through the brain towards the subthalamic nucleus, brain cells are pushed aside like ice flows at the bow of an icebreaker. Some inevitably will be damaged or forced into a slightly different part of the neuronal real estate that is your brain. These are minor inconveniences, tiny tribulations and a small price to pay for the benefits to come. But every once in awhile the electrode will puncture a blood vessel and initiate a bleed.

A bleed in the brain is an entirely different kettle of fish from a nick while shaving or a scratch with a thorn. You cannot apply cotton-wool or dab antiseptic on the site of bleeding. Cauterising works on surface vessels but not deep down. The deeper you go beneath the brain surface, the less aid you can expect. It’s like a mountaineer climbing alone above 25,000 feet. You are on your own.

Once again I feel the need to reassure you, dear reader, that such eventualities are extremely rare. Certainly they should be factored into your own go/no-go decision but not fretted upon.

So with that in mind, how should one respond to that tiny but finite risk? Brush it aside in a moments thought with a derisive snort? Surround yourself with ‘you – have – a – greater – risk – of – being – struck – by – lightning’ friends? (Incidentally those odds are wrong – lightning is much less common). The same but with London buses as the denominator? Subject yourself to deep introspection and dwell on all possible results?

On the whole, most of the above are unhelpful. But then equally unhelpful is the head in the sand approach – you can’t change things so just roll with it. Fatalistic nonsense.

My approach falls I think somewhere between these different extremes. But if you are uncomfortable with this, just stop reading. And since I have broadly skirted round the subject to this point, let’s be clear what outcomes we are talking about. These are essentially a disabling stroke or, worst of all, death.

I like to think that I’m approaching this in the manner of a checklist, ticking off each item without dwelling on the likelihood. I don’t plan to describe every last detail here. But certain matters are obvious. My will is written and witnessed. Tick. I have already notified key people of my wishes with respect to my remains. Tick. And so on.

Most of it is straightforward. But the last part is more important. Specifically, there will be three letters written before I go into hospital, one to each of my children. Each will be personal to that child and will tell them all the things that I want them to know going forward. How much I love them, unconditionally and without limit. I will tell them how much joy they’ve brought me over the years. I will let them know how proud I am of them. And I will speak to them of being true to themselves, of standing strong and of looking after their siblings.

I will probably forget my toothbrush when going into hospital. That’s just me. But, trust me, I won’t forget those letters.

Fanfare for the uncommon man

You would have quickly warmed to Guy, an old friend and colleague, whose funeral I attended today. For those of you that knew Guy, here are some of my reflections on a side of him you may not have seen. For those who didn’t, let these serve as an introduction to a man I think you would have liked. An exceptional man. An uncommon man. Three of us – an anaesthetist, myself and a surgeon – delivered eulogies at today’s funeral. The following are my reflections as spoken:

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I probably knew Guy from a different perspective. Whereas many of you will know him as a clinical colleague, I knew Guy as a research scientist. A small difference you might think but perhaps a telling one.

I think there is a world of difference between science and medicine. Medicine trades in confidence, in certainties and in answers. That’s medicine. But it’s not science. The currency of science is doubt, introspection and questions. And to be good at one does not necessarily make you a skilled practitioner of the other. And yet the very best of medical science exists at that interface. Others can speak of Guy’s clinical acumen but I would like to say a few words of him as a scientist.

For a decade or so I ran a research laboratory in the Anaesthetics Unit at the London Hospital. Guy joined the group around 2001 to do research on the biochemistry of head injury – a clinical problem addressed in a scientific way. And for the several years that I knew him, he brought a clinical perspective to that science, staring down the microscope but always asking how  what he saw was relevant, how it would be meaningful to patients. And he asked the same of his clinical colleagues. How could his research in the laboratory be of most benefit?

But Guy was no dull dry academic. Guy brought enthusiasm to the research. I had one golden rule in my laboratory – that nobody was to ask me serious scientific questions until I’d had my first coffee of the morning. Only then was I available to discuss science. Guy had no time for  such constraints Many was the time he would greet me in the morning with two cups, a cafetiere of hot coffee and beaming smile. Who could resist?

Guy brought commitment to his work as well. On his desk in the laboratory was a small post-it note with a quotation. “Perfection is unattainable. But if you chase perfection, you can catch excellence”.  By V. Lombardi. I  asked him who Lombardi was, expecting perhaps a 17th-century Italian philosopher. He laughed. “No” he said, “head coach of the Green Bay Packers”.

Certainly I could speak of his kindness, of his humanity and generosity – very human characteristics and expressed in full in his own personality.  I could tell you stories about lions and tabby cats, of long drives over the North Yorkshire Moors, of getting lost in Paris, of his fondness for the Goon show. All part of Guy’s time in the laboratory. But I think when you come to sum up a life, it goes beyond their own actions. It extends into the actions and thoughts of others. Are there things that we do differently or   ways in which we think differently because we knew Guy? I think there are. And I think Guy lives on in those thoughts and actions.

To quote a line from Blade Runner, one of his favourite science-fiction films, “The light that burns twice as bright burns half as long”.

‘My Way’

One of the most popular songs played at funerals is, you will not be surprised to hear, ‘My Way’, that self-aggrandizing hymn of defiance, associated with and immortalised by Frank Sinatra. It never fails to raise a collective wry smile among the grieving on hearing that the normally retiring Mr Albert Thwaite did it his way. Leaving aside the thorny question of what his way was, it’s usually pretty clear that Mr Thwaite did not. Do it his way I mean. A life of kowtowing to some nameless council boss was not what Sinatra had in mind. So unless you count that unfortunate episode with the karaoke machine Ethel hired for cousin Gladys’s 21st birthday, Albert did not do it his way. And many who heard his treatment of the aforementioned song that day, fuelled by two glasses of Tesco Amontillado, are still reluctant to talk about it.

Albert’s rendering of the song that day remains etched in the memory of any who heard it. Not everyone recognised the song, so idiosyncratic was the performance. Many who did never thought of it the same way again. Somehow Albert managed to condense the anger of a lifetime of servitude into three minutes of jawdropping catharsis. In some ways that is what the song is about. Just not Albert’s apparently arbitrary and wandering choice of key and tempo. Listeners stared at their shoes as the song ended. After several seconds of tumbleweed, Ethel broke the embarrassed silence with a single handclap and invitation to guests to address the buffet.

Albert was buried in an old dark suit, it’s lining long since given over to moths. Nobody mentioned the song.
Least said this, thought Ethel.

Howard Hughes can legitimately claim to have done ‘it’ his way. Bill Gates and Steve Jobs the same. Their lights burn bright, their greatness unequivocal, their single-mindedness unassailable. Men who genuinely did do things their way. But what of the millions in between Albert and Bill, Steve or Howard?

Tomorrow I shall attend the funeral of a friend, a clinical anaesthetist and one of my former PhD students. Neither Albert Thwaite nor Howard Hughes. I’ve been asked to say a few words about the person I knew all those years ago. Others too from different parcels of his life. And above all it has made me aware of how compartmentalised our lives are. The messages of remembrance each provide another piece in the jigsaw. I can only speak of the time I knew Guy. He was a gentle man and a gentleman. The product of his upbringing and strong parental models. He was an only child and in many ways a private man. But at the same time he was gregarious and entertaining. Larger-than-life if you will. Not many knew that he enjoyed heavy rock music and among his final acts was the choice of music for his own funeral. Logically this would be the point where I draw the strands together and say that ‘My Way’ was among the choices.

Mercifully it wasn’t.

He chose ‘The Chain’ by Fleetwood Mac, reflecting his love of Grand Prix racing (the instrumental solo in the middle of the song associated forever with TV coverage of racing) and, little-known by others, the fact that he played the bass guitar himself.

Mr Blue Sky was another perfect choice. Patients loved him. His bedside manner was calm and encouraging, reassuring anxious patients, soothing jangled nerves of the preoperative patients. In many ways he was Mr Blue Sky.

And the final song? Growing up on the south coast, with its chalk scarps and green fields, it could only be one – White Cliffs of Dover sung of course by Vera Lynn. The perfect choice.

Guy would never have claimed to have done it ‘My Way’. He would have snorted at the absurdity. Guy knew, better than most, that life throws spanners into the best laid plans. He knew that life was about doing the best you could, where you could and how you could. He accepted no grand design, no masterplan from on high, just the simple pleasure of knowing that he had done his best. It wasn’t necessarily his way or anybody else’s. It was just the way. And that’s all that mattered.

Dumbell

A good friend of mine has an observatory in Malta. Well, I probably make that sound more grand than he would feel comfortable with. It is not Mount Palomar or the Hubble space telescope. There are no huge white domes here with massive mirrors and lenses. This is on a much smaller scale – basically a reflector telescope on a rooftop. Not a colossal structure but nevertheless, in the sense it has a telescope trained on the night skies, it is an observatory. Keep that in mind whilst I tell you more of where this telescope has taken him.

JR would be quick to tell you that he is an amateur not a professional astronomer. Astronomy is many things to many people but for JR and myself it is mostly about staring in gaping awe at the majesty of the heavens rather than computing, calculating and correcting the orbits of objects so terminally uninteresting as to leave even the theoreticians cold. JR is all about the beauty of the heavens and their visibility.

Astronomy is not about numbers (well it is but we will come to that in a minute). It is a paean to beauty and, if you are of that leaning, doubtless speaks to you of creation.

Over the last several years JR has taken a series of breathtaking photographs of what we astronomers call deep sky objects – deep sky in the sense of being way beyond our own solar system. Galaxies, globular clusters of stars, nebulae, supernova remnants, the fragmented graveyards of red giants and the blue nurseries of infant suns. These are the places where stars are born. Elsewhere stars at the end of their celestial journey fade into darkness in a final ruddy glow.

I was quick to dismiss numbers earlier but of course there are necessary to find your way round the heavens. Every astronomical object has a location in right ascension and declination, in essence it’s postcode. And whilst you can locate each nebulae or galaxy with little more than that, the faintest nebulae will still be darker than the most penetrating eyesight. So rather than stare into the darkness itself, why not use technology to one’s advantage? A laptop, some software and a motor drive on the telescope allows one to find and photograph things you cannot even see. And of course you don’t even need to enter the coordinates on the scope. You can do it through the Internet.

All of which is rather long preamble to last Saturday night when JR invited me, through the power of the World Wide Web, to take a photograph of a deep sky object of my choice. I think partly it was an exercise on software compatibility, to see whether one could take pictures remotely. But I didn’t need to be asked twice. I jumped at the chance.

But which object should I photograph? The Horsehead nebula? Perhaps the globular cluster in Hercules? Or how about the Ring nebula in Lyra? Or the Sombrero Galaxy? It was like a chocolate box with all your favourite soft fondant centres and no nut clusters.

I chose the Dumbbell Nebula (Messier catalogue M27), a planetary nebula discovered in 1764, in the tiny faint constellation of Vulpecula (the little fox). An elegant little nebula – not perhaps a premiership object but pleasant nonetheless with a white dwarf star at its centre surrounded by a gaseous veil.

We linked the two computers – in Kent and Malta and, before I knew it almost, I was giving the scope its coordinates and watching as it revolved into position. It would take several long exposures but as it did so we watched the image build on the screen.

I would like to say that it was my photograph based on less than an hour of learned expertise but the truth was that it was a collaboration between myself the neophyte and JR the expert. Not to mention a pricey telescope, software, camera and more. It was by no means my solo!

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.