An alternative Mothering Sunday

Mother’s Day, or, being pedantic as I so often am, Mothering Sunday, is a bittersweet day for me. I smile at the many photographs on Facebook and elsewhere of celebrations, of mothers beaming in the many millions of photographs taken today.

Bittersweet, as I said. My mother died in 2009 and, fair to say, I think of her each day but never more than on her birthday and on Mothering Sunday. Alas I can not celebrate either the mother of my children with any credibility any more. Not through any failing on her part, but mine. Enough said. Leave it there.

Don’t misunderstand me please. I do not even for one second begrudge the many mothers their all too brief public appreciation. The one day in the year where they perhaps get breakfast in bed, a couple of bits of buttered toast and an instant coffee.

We males are pathetic animals really when it comes to these things. If you, mothers, wives and lovers, were expecting a full English or perhaps warmed pains chocolat or brioche with a grand creme or cappucino, brace yourselves for something of a disappointment. No chance whatsoever. And there is a better than evens chance that we will fail to grasp the core fact that the washing up is considered to be part of the process of breakfast in bed. Do not simply leave the dirty crockery on the side. Remember her surprise sigh, midway through the morning which she wouldn’t explain? That was this. And don’t delude yourself that it is of no consequence. Women remember these things. Forever!

On this one day of the year we, the males of the species, have to perform those tasks the female performs everyday without making a big deal of it. Do your best, at least do your best. But be aware you will still fall short.

Flowers? Sure, why not. Chocolates? Dangerous. If she sees herself as overweight, you become part of that conspiracy theory. If she is skinny as a rake, she will point out to you the very absurdity of buying the chocolates.

I don’t k now why I’m dishing out advice. It’s not as though I got it right. I can remember to this day the one occasion I failed to send my mother a card. To say that the response was cool would be akin to calling the second global ice age a bit of a cold snap. It was more glacial than there are words. And, like Kennedys death, I can remember exactly where I was standing, who I was with, the birds in the trees. All of these things are indelibly etched in my mind. There are no apologies adequate to convey the full magnitude of my despair. My mother even seemed to make light of it. “These things happen” she said in the kind of tone that made me realise that these things did not happen and that they were never ever again to happen or further transgressions would be greeted at least by disinheritance.

Even so many decades later, I’m sweating as I write this. My mother was one of the most delicate, kind people I could imagine. So to see her, on this one day of the year turned, by my own failings, into a firebreathing gorgon still rankles even now.

And we are now, sadly, beyond the point where I can apologise.

DBS Diary 13 – 6 month update

Well, not six months exactly. More like five months and 22 days but let’s not split hairs.. Let’s get to the meat in the sandwich. What has changed since my last report? On the whole not very much.. Although I am delighted (honestly) with the results, there is still no doubt to my mind that better still can be achieved. In part this is due to the stimulating location and range of the Boston Scientific DBS system this I received at the beginning of November last year.

Okay so let’s break down the results a little bit. There is no doubt the biggest pluses are attributable to a substantial reduction in tremor. I can now read words on a page where previously I struggled with words at all. The surtitles of the opera house are now once more visible in all their sacrificial and, in the case of opera, often comical, appearance. I can hold a book steady enough to read and not be surprised by the appearance of new and previously unknown characters towards the end. I can now follow the plot. I can hold a camera with sure and steady hand, and the eye of a marksman. I said to my neurologist, a good friend and exceptional scientist, in October, that a steady hand alone would justify the surgery in my mind, that I would settle for that alone.

My right hand has remained steady since. The left hand has a slight tremor and that has perhaps increased a little over the last six months but not enough to detract from my rock steady right. This tiny deterioration may simply be progression of the primary neurodegeneration itself (it is a neurodegenerative illness – remember?) quietly picking off cells in the background like a sniper.

These are the positives. And they are very positive.

But there are negatives and it would be wrong of me to infer that all in the garden is rosy. My motor symptoms have not really improved at all. I still struggle with my walking, bent over much of the time like a question mark when I wanted to be an exclamation mark. This has been surprising enough that, were it not for my rocksteady right hand, I would doubt whether the procedure had done anything. That and the persistent inability to reduce my drug load has been surprising. I had expected greater motor improvement and lower drug levels. These observations will form the basis of my next consultation meeting.

It is important to keep a level head with Parkinson’s and with DBS in particular. People expect miracles and, if they enter the process (and it is a process) with inappropriately high expectations, they will be disappointed. DBS is not a cure. DBS is another tool in the neurosurgical armament, another choice on offer. And DBS as we know it today is a world removed from the DBS of two decades ago. Those almost blundering efforts were in every sense a stab in the dark. Modern DBS, coupled with precise neuroimaging is less of a wing and prayer. The surgeons themselves are artists not artisans. Perimillenial DBS is to its modern counterpart as Cro-Magnon cave paintings are to the Sistine chapel roof. The science has changed that much.

My neurologist told me that it would be an iterative process of changes in the stimulation parameters. We should not expect it to be perfect first time. And I have no problem with that. So, when I see my neurologist I shall update him on the successes of the DBS and we will sit down together to work on those motor symptoms.

Perhaps after I have handed over a bottle of Bollinger…

The true value of patients in drug development

Over the years I have had Parkinson’s, I become progressively more enthused by and protective of patient interests within the field. It would be nice to say my commitment is equally applicable to all areas of patient treatment but a man can only do so much and so I focus exclusively on Parkinson’s.

Patient involvement, in pharmaceutical research and clinical trial design has become a necessity for clinical researchers. Put simply, if you don’t solicit patient involvement at as many stages of the research process as you can, you will be marked down by the funders. In some cases it will even preclude receiving funding. The same goes for drug companies, obliged by the licensing agencies to demonstrate credible bilateral patient engagement.

Drug developers need patients, not only as participants in clinical trials but also as participants in coproduction. In large part these initiatives have been driven, not by pharmaceutical companies eager to hear “the patient voice”, but by researchers recognising that their research will vanish down the Suwanee if they do not.

Obviously that’s a slightly dark and rather cynical position and I put it forward, in part, by way of playing devil’s advocate. I do not believe for one second that this is representative of the kind of board level decision-making within the pharmaceutical industry as a whole. There are a good many drug companies that do, deep down, have a belief in the value of fully integrated patient engagement at every stage of development. And when that is achieved in a non-tokenistic manner, the value to all parties is significantly enhanced.

So you receive invitations to be part of a board/discussion group et cetera. What do you do?

Well it’s important to know who is asking for your involvement. Do they use words like dopamine, receptors, on/off, dyskinesias, nonmotor symptoms and so on, delivered by earnest men and women anxious to know your thoughts?

Or are their sentences replete with words and phrases like leverage, optimising market share, identifying target markets, stakeholder segmentation, and managing consumer expectations, delivered by men in suits with rictus smiles?

The answer to these simple questions may help you to decide.

Personally I get tired of listening to this kind of managerial market drivel. If it’s your path, fine go do it. But it’s not my chosen role. Do I sound cynical? Maybe a little.

The role of patient advocates is a tricky one, walking a tightrope between marketing aspirations and pharmacological realities. It doesn’t matter one jot that the marketeers wants to position a drug in such and such a context, if you can see from the data that the side effects profile is unusually bad. The marketeers can bury their heads in the sand if they wish but the fact is that a drug removed from the market is much worse, publicity -wise, than one which never made it to the market. The latter suggests due diligence, the former smacks of incompetence.

Patient advocates rarely have and would, in all probability, not want that kind of personal responsibility. But they do nonetheless seek a voice in the process and it should be the honest opinion of those advocates and not modified to make it more palatable.

The best relationship between drug companies and patient advocates is one where a long-term relationship is created, constructed upon mutual respect and understanding. This is not achieved overnight. It takes time and trust. It is a mutual education. And above all, if you will forgive me one piece of managerial gobbledygook, it is a win-win situation.

That’s proper patient advocacy. You’re welcome.

A serious piece about the Ukraine

For many years I have felt lucky. We have felt lucky. Lucky that, unlike our parents and grandparents, we have never had to live through war. War was something we saw on television, distanced and packaged through the media into palatable news items. Ten minute triumphant timeslots. War was something distant and remote both figuratively and practically.

And in that time since the end of the Second World War, radio bulletins and newspaper articles gradually gave way to television, its talking pictures lending a new immediacy to events in distant Korea and then Vietnam and Cambodia. A TV war.

Ideological wars stripped of their ideology by the practicalities of waging war in places outside comprehension. Obedience to the rules of war, whatever exotic concept that might be. Carpet bombing B-52s, strings of bombs pouring like rainfall from their bellies. Napalm burning bright in the sunset.

But no dead or dying. No bodies burnt beyond recognition by napalm. No torn off limbs, no brains splattered like blancmange (yes they really do look like that). Nothing to put to off your lunch or supper. A propaganda war, the might and right against the out of sight and the night.

Then the greatest advance, and at the same time, greatest journalistic tool of all time – the iPhone.

Everyone was a reporter. TV companies swiftly moved from open disdain to desperate inclusionism, recognising that without these half minute video clips and micro bulletins, they would have no news to report. Editorial input and journalistic perspective was replaced by the fierce urgency of speed. Corners cut to the bone, stories largely unverified, confusion reigned.

Everyone who had an iPhone was a reporter. War was no longer pasteurised, itemised, and televised. War was immediate. As long as you had 4G.

Democratisation of the media both clarifies and confuses. The immediacy of video clips, gone viral is undeniable. A weapon of truth. But at the same time a weapon of misinformation.

War is now on our doorsteps. Korea was on the other side of the world. Each days fighting was over in time to catch the morning news in the US and Europe. Vietnam the same. Cambodia ditto. These were distant wars with time to pasteurise the newsreel before broadcast. This is not the case here. Kiev or Kyiv is or was a two-hour flight from London by commercial airliner. Quicker by warplane. Tupolev Tu160 bombers could be over Heathrow in a little less than 40 minutes. Russian ICBMs are quicker still. And as for cruise missiles, well you work it out.

Putin’s declaration that, in essence, his nukes are only one button press away from visiting Hell on earth is chilling in the extreme. And ironically he is all the more likely to deploy them if these plans on the ground war are thwarted. A stalled offensive in Ukraine will stir memories of Russian defeat in Afghanistan all those years ago.

Let us be under no illusion. These would not be tactical nuclear weapons deployed on the battlefield in the Ukraine but potentially in a wider field of conflict. A strategic nuclear war. As that grim joke goes “Q when is a tactical nuclear war not a tactical nuclear war? A about 10 minutes after it starts.”

We should not falsely comfort ourselves with the notion that no sane person would start a strategic global nuclear war. Perhaps true but Putin is not, by any mark, sane. Recent history teaches us that, faced with his own personal liquidation, he is more than likely to opt for global annihilation. These are not subtle nuanced Western interpretations of his words. He has said as much himself.

I do not pretend to understand the extent and meaning of sanctions but I’m led, by those who profess to be in the know, to understand that this is the most extensive package of sanctions ever deployed and have already collapsed the ruble and, in consequence, the Russian economy. Sanctions however precisely targeted ultimately cannot help but bring hardship on the Russian people. The Kremlin has never historically been accountable to the population. As Napoleon and Hitler found to their cost, Russia was prepared to go to extreme measures, even amounting to the death of many of its subjects in order to protect its own existence.

In any case, this is not a Russian war. The people of Russia do not want this war. Many view this, with something approaching the consternation of the West, as the first stage in an expansionist blitzkrieg. To the west of the Ukraine stands Poland. To the north, Belarus and Lithuania. Next stop west beyond Poland lies Germany, Finland to the north. It’s hard to believe that the Russian war machine would come to a dignified halt in front of the Polish or Finnish border. After all, there are no sanctions left to impose.

Concerned yet? I certainly am. And to think that we worried about North Korea…

A lesson in cricket humility

31st of July 2010. Bayham cricket ground

There is no greater source of pride for any cricketer at whatever level than being asked to skipper the side. It doesn’t matter whether it is the England test team, leading out Yorkshire at Headingley (I’m sorry, couldn’t resist) or, as in my case, the Bells Yew Green 4th XI at its then home ground behind Bayham Cemetery & Crematorium.

I think it was the Wednesday before Saturdays game when Chris Fox asked me if I was prepared to captain the side on the following Saturday. It wasn’t a difficult question but I still somehow need to repeat the question aloud to grasp its full import. They were seriously asking me, probably the most dysfunctional and least able cricketer ever, to captain the side. Captain as in who batted where, who bowled when, and who fielded where and why.

I should probably point out for foreign readers that the captain is usually chosen from amongst the team on the basis of peerless batting or bowling coupled with a visionary grasp of fielding positions. In essence, the position almost chooses itself.

Evidently in this my case other factors were at play. I have always described myself as a classic English all-rounder – I can’t bat and I can’t bowl. In stark contrast to Steve, my predecessor as skipper, who had played in the Lancashire league and definitely knew which end to hold the bat.I also hold the club record for byes during my one and only appearance as wicket-keeper. Again, if you are a foreign reader, you should just take it as read that this is not a great record to hold. This is not the profile of a cricketing god. As my son generously pointed out, I was essentially cricketing roadkill.

I should also point out for those unfamiliar with the politics of local cricket, that this was Wednesday. The fixture was on Saturday and it was rare for the skipper to know the identity of his team much before late Friday afternoon. And of course it was conditional on availability of players for the the teams above us. Once the first three teams had been picked, the captain of the 4th XI would be alerted to his likely team (and even then it was often subject to change). More than once skippers were sent teams consisting of bespectacled old men, amputees, and leg spinners. Many had to borrow their cricket kit from their sons or their fathers. Or grandfathers. Batting gloves with green rubber spikes, which offered no defence against a ping-pong ball, let alone a cricket ball. Pre-war pads, whitened with chalk were not uncommon. Pre- Boer war.

I wasn’t optimistic.

When my team was given to me, mid Saturday morning (and remember the fixture started at 1 PM on Saturday), I was genuinely thrilled. Perhaps the selectors wanted me to stand a chance. Perhaps we were just lucky but this was a genuinely good side. We would at the very least be competitive. Three father and son combos (and good ones at that), at least seven who could bat and as many who could bowl. A good mix of ages, skills and personalities. A team that would be a joy to captain. And a good strong wicket-keeper. It was probably as good a 4th XI as has ever been put out*.

Best of all, by hook or by crook, I had managed to secure a cricket tea of the finest quality. Sandwiches bursting with filling, a Victoria sponge lighter than air, and, if necessary to slow down their seamers, a fruitcake heavy with cherries, sultanas and currants. I briefed our quicks in advance to steer clear. The stage was set.

I spoke briefly to David, the groundsman at Bayham, before he wandered off to strim around the more overgrown graves in the cemetery. “Bat” he said, with that brevity typical of those who work with plants, “rain later”.

Our opponents that day were Hellingly, their 4th XI. They were a decent enough team but not necessarily invincible.

I introduced myself to Brian, their skipper and we walked out to the middle. We each had a cursory look at the strip and the sky. I gather that’s what captains do. I just watched Brian and did the same.

I left nothing to chance. I had a freshly minted shiny penny with which to do the toss. I had spoken to our seniors, Clinton and Kamil, beforehand and told him the groundsman’s thoughts. “Let’s bat” Clinton said. “Okay, you’re opening” I said “with James. Tell him”.

I lost the toss and, to my amazement, Brian opted to field. I gestured with an imaginary bat to the team on the sideline. We could relax a little and take our time.

Let me give you a bit of context here. The 4thXI had something of a reputation for low scores. In the normal run of things, the opposing captains would bat first given the choice, hit huge scores off our tiring young bowlers before sending on their own murderous quicks and bamboozling spinners to machete their way through our batting. Vultures would gather in the outfield, drawn to the slaughter. It was rarely pretty. We were unaccustomed to victories and generally spent our time propping up the rest of the East Sussex Cricket League Division 12 (there were only 12 divisions since you ask).

But today was different. it was going to be a day of records.

James and Clinton opened the batting, Clinton jockeying along his younger charge as opener, reminding him of the job he was set out to do. And he did. Twenty four confident runs from James saw the openers make the first 50 partnership I could remember in the 4ths. 56 for the first wicket.

Unfortunately also 56 for the second wicket, Alex misjudging one and skittled. Never mind, plenty of batting to come. 56 for two was still pretty good form. Joe took guard. Off the mark almost instantly. The next hour or so was a joy to watch. Joe and Clinton sent the fielders scurrying to every corner of the ground. When Joe was finally caught for 28, they had amassed a partnership of 89. Unheard of territory.

When you play in father and son teams – dads and lads – it’s always a pleasure to bat with your son. Max was a talented 13 year old and hit the ball as hard as any I have ever seen at that age. Those who were there to witness his 50 off 28 balls in a junior game the previous weekend at Bidborough are unlikely to forget it. So, when Max stepped out to join Clinton at the crease it promised fireworks. A single, a boundary and it was all over. 145 for 3 was now 157-4, becoming 158-5 as Kamil was pinned LBW.

Time for a captain’s innings!

I strode confidently out, practising a few exercises that I had seen Ricky Ponting do on television when going to bat, and trying to put Jacob’s roadkill remark out of my mind.

“Middle and leg please umpire” I called before scratching some sort of mark in the dust. I lifted the bat and surveyed the field in what I fancied was a I-know-what-I-am-doing sort of way.

And so it began. Beautiful slashes through the covers, magisterial drives through mid-wicket, subtle stabs wide of the slips. Beautiful strokes. By Clinton. I just watched and tried not to get out. But eventually even my stubborn Boycottesque resistance was broken, clean bowled for 5 (incidentally one of my higher scores) whilst trying an inappropriate shot that doesn’t have a name. Well it’s not in any manual. 178-6.

Alex’s dad Andrew next up and still the runs flowed, Clinton taking the team to 200 for the first time ever and himself to a wonderful century (116). We even used up our overs. Such was my confidence that I even toyed with the idea of declaring with a ball to spare.

Teatime. We phoned others in other teams that day, to update them, anticipating our victory.

The tea I had arranged was a thing to behold. Laid out by the ladies, it looked magnificent. Da Vinci’s Last Supper paled by comparison. We ate like prerevolutionary French royalty. The youngsters ate like velociraptors, despite my reminder that they were going to form the mainstay of our attack and therefore should steer clear of the fruitcake. Fruitcake is for batsmen. Sponge cake for bowlers.

Still, we were raring to get at them.

And I had the weapons to do the job. Two very fine young seamers in Alex and Max, both capable of generating troublesome pace and, certainly in Max’s case, a penchant for the shorter pitched deliveries. And I had Kamil, who could ask questions outside the off stump. And of course Scotty, legendary club seamer who could always be relied upon to keep it tight with nagging line and length. Three other spinners (Paul, Andrew, and Tim) balanced my attack. And I might not even need my ultimate secret weapon – Joe who could bowl anything – quick seam, spin in either direction and some wobbly sort of ball which didn’t seem to have a name but took wickets. Nobody seem to be able to pick those deliveries. Eight bowlers at my disposal at least. This would be a memorable victory.

Their captain, Brian, opened and it was clear that he could bat. Every team has one or two. In this case they were one and two. The openers. Okay, they did not give a chance on their way to 50. I wasn’t worried. At this level you can always be sure that they will make a mistake sooner or later. They didn’t. Obviously the pitch might be helpful most days. It wasn’t. Clinton’s fine innings was in danger of being eclipsed. By the 18th over, they had reached a hundred, mainly plundering runs off the juniors. Kamil kept it tight at the other end. I turned to Joe and Scotty on the reasoning that Scotty would pin them down while Joe, feeding off their frustration, would take wickets. Neither happened. It was one of those days. I had eight bowlers and all eight bowled in my increasingly desperate efforts to take wickets. A century partnership soon became 150. I tried everything I could think of in terms of field positions to support the bowlers. Somehow I seriously believed that if we could get one wicket, we could get 10. But we’ll never know because we never took a single wicket. They reached their target with seven of their 43 overs to spare. It was humiliating.

I had the sinking feeling that I had been found out, that my “captaincy” was a sham. I was a rabbit in the headlights. I don’t even remember what the opposition captain said to me after the match. I didn’t care either. To have to go back to the Brecknock with the score book recording in black-and-white this calamitous defeat was humiliation distilled.

In a way I had learnt the most important and hardest lesson in cricket. Take nothing for granted. Pride comes before a fall. My laughable pride in being made captain that day had turned to dust. Nobody in the Brecknock could quite believe it – how we, well I, had managed somehow to conjure defeat from the jaws of victory. And where was that rain the groundsman had promised?

I drove home trying to find some crumb of comfort. Well, I thought, at least they won’t ask me to do it again. There was that.

It turned out I was wrong on even that.

And in local news…

I finally resolved, to something approaching my satisfaction, the thorny question of what – if any – newspaper I should take. Easy, I hear the round spectacled, tweedy, hushpuppy corduroy left pronounce “it has to be the Guardian. On the face of it they are right and I can’t think of a rational reason not to. But somehow I find I bridle against the worthiness of its work. You can take just so much honesty and integrity!

Consistently on message, more WOKE than awake, and with its pronouns plump and perfect, somehow it fails to engage me. My father took the Telegraph all his life, occasionally reading aloud choice morsels from Max Hastings’ poison plume at the breakfast table for his children’s wider learning.A competent historian but of too vicious mien to arouse my interest.

How about the red tops?

Moving on…

I grew up in the heyday of the World Service, that last broadcast bastion of British imperialist influence. As the sun set over the Empire of Victoria and Albert, the World Service reassured us that all was well, that British athletes and sportsmen were still the best in the world, albeit at fewer sports and less often. The British officer class ensured, in far-flung African villages and far eastern jungles, that there was always gin and tonic at six. Black tie or regimental colours naturally. With polished accents and gentle manners, to the clink of glasses and a chorus of cicadas, it was still the same old Raj and her Majesty would still tuck us into bed at night after our bedtime story.

While building the notorious bridge over the river Kwai, one new arrival, on recognising a former school prefect, asked him about conditions in the camp. “On the whole, not as bad as Marlborough”.

I’m not really sure where I am going with this little rose tinted imperialist nonsense. I suppose the point I am trying to get across is that a newspaper is not just a vehicle for information. A successful newspaper will often sacrifice confusing detail for clarifying editorial, ditching inconveniences as needed to paint broad brushstrokes rather than journalistic pointillism. Often we don’t want to read the detail. Perhaps we cannot handle it, the notion that some of the facts simply do not match the interpretation.

For the most part the news is groovy. I do love dictation software and its occasional infelicities. That last sentence should have read gloomy not groovy. The news is emphatically not groovy at the moment with Pres Putin in the process of sending some 200,000 “peacekeepers and voting advisers” into the Ukraine. How exactly does a tank with a huge gun keep the peace? And when might that gun be used? Parking offences? Incorrect use of roundabouts? Loud music?

No, enough is enough. I can see why people withdraw back into their houses, pull up drawbridges and sit there surrounded by tinned food. The news is as relentless as it is depressing. So I’m going to read only local news from now on. It has the advantage of being largely devoid of the snouts-in-trough antics of our elected parliamentarians.

This week two pairs of underpants were missing from a garden washing line in Rusthall. The owner of said underpants is said to be “disgusted” that the police took all of 11 hours to investigate this crime.

A cat called Tobermory from Uckfield is a recordbreaker! Tipping the scales at a little over 6kg is, to his owner’s great pride, now officially the heaviest cat in Uckfield. His owner, Sylvia Sturt, has to be a better than evens bet for the human equivalent title.

Dwayne Fawcett and Luke Perry were cautioned by police in Tonbridge for using public toilets in a burger bar without buying food. “I only wanted a McPoo” said Luke, 18.

I could go on…

If rats could talk…

I have long maintained that rats are the thinking man’s pet. Intelligent, capable, social, expedient and adaptable. In essence all the very best of humankind’s strengths, put together in a few hundred grams of fur and a tail. To be truthful, I think the tail puts a lot of people off. Amazing really that such a small feature should put off so many potential owners. For some reason we adore squirrels (essentially a rat with a bushy tail) but are not attracted to rats, their bald cousins.

Yet we live side-by-side, cheek by jowl with rats. It’s said that in urban contexts, we are never more than 5 m from a rat. That’s nonsense – it’s nearer 2 m. Rats live on what we discard. If we want to contain their populations we should be more efficient and throw away less. But that’s not really the point I want to make. Stick with me.

For several years I taught biological psychology with the Open University (OU). Incidentally for those of you who do not know of the OU, let me briefly sing its praises. Modular courses based around self tuition with a handful of face-to-face tutorials. The students are typically middle-aged, often unfulfilled housewives thwarted by feckless children and couch potato husbands. Having also previously taught in medical school where our next generation of doctors are truculent 18-year-olds, oozing privilege and entitlement but lacking interest or understanding, the contrast could not be more illuminating. Unlike the arrogant new generation of future doctors, barely shaving. (no, hanging a stethoscope ever so casually over your shoulders does not make you a doctor). Fulfilling their parents’ social aspirations with barely disguised disinterest they are a travesty of learning. The OU students are hungry for knowledge, hanging on every word a tutor speaks. Absorbing, admiring, appealing. The acme of what learning should be. There is simply no better group of people to teach than those who have been deprived of learning. I loved my time teaching oU students.

Okay, back to the rats. One of the ideas I tried, in order to teach my OU students was the notion of how behaviour manifested itself in animals and how we could learn from this. I had a simple routine – I would ask students who had a pet. Most did. Going round the class I would try to establish who had the most interesting pets for instance. Monitor lizards, bejewelled tree frogs and chameleons obviously trumped cats and dogs and mice. Typically, I chose one student and had them come up to the front and face the others. I stood by the blackboard with chalk. I gave them a minute to describe their pet. As they began to talk, I wrote keywords on the blackboard, in particular those that described behaviour or personality.

We, as a class, would then discuss how these might be assessed. For instance, Cuthbert the chameleon might be “quite nervous” according to his owner. How would we measure that? What would tell us if Cuthbert was more or less nervous after a given treatment for instance. How would we tell?

The students thoroughly engaged with this idea and were soon thinking up complex and elaborate ways of finding out whether Roland the rat, Gordon the guinea pig or Cuthbert the chameleon was anxious.

But why would we want to know if Gordon was anxious? Well without going into the whole pro/anti-animal experiment trope, this is the basis of how we learn about drug side-effects for instance. Or, if you are interested in anxiolytic drugs, this might be used to find which new molecules might be effective.

It’s still a roundabout way of finding out about drugs. If rats or guinea pigs could only talk, we would save ourselves a whole load of trouble. We would love to hear what the rats thought. All that information at our fingertips. Imagine that!

And here is where I get to the point. Imagine the rats and guinea pigs could speak and that humans, specifically clinical trial designers, were more or less wilfully ignoring what they were saying. Ridiculous. Obviously. Yet exactly this situation occurs in so many of our clinical trials. The guinea pigs (the patients) are speaking loud and clear yet so often without any indication of being heard. We are desperate to know what the rats might tell us yet completely oblivious to the very real information being offered by the patients.

It’s hard to believe, more than 20 years into our third millennium, that clinical trials devoid of patient input in terms of design, thinking, logistics or outcomes still exist. A trial designed in the absence of patient input is almost doomed to failure. And so it should be. It is the sound of one hand clapping.

Lucien Engelen of Radboud University, some time ago, initiated the scheme whereby a positive “Patients Involved” seal of approval could be applied to conferences. Why not trials too? Studies that involve patients in very real and practical non-tokenistic ways. I say it’s time to take the next step. It’s time to name and shame those trials that do not.

Because the rats can talk after all and it’s time we listened to them.

Dream machine

Everybody has, at some time, a fantasy car. I don’t care if you are an ultra environmentally conscious, muesli eating, zero carbon footprint person today. At some point in your life you were a little boy who dreamt of owning a classic car. For most it would be a high performance sports or racing car, something from the Porsche, Ferrari, Lotus, Lamborghini or Aston Martin catalogues perhaps. And yes, I do dreamt of such vehicles. As a little boy, it was as much about the sound and smell of these cars as their actual performance. Although inevitably I can remember the details of any car throughout the 1960s and recite, like a rosary, the key points: 422 big block, bored out to 436, KG5 ram supercharger, five-speed Hackett gearbox delivering 392 bhp on the road. Crabbe JT 74 shocks, Delta B28 wishbone with SideArm KL4 springs, 18 inch Zep 68 steel braced low-profile radials and a Hurst “big boy” manifold extender.

Actually, I made all of that up. I have no idea whether these things even exist but, if they didn’t, something else that was similar sounding did. Don’t forget, these were the days before Pokémon cards and so on. In my day it was cigarette cards which meant forcing one’s parents into smoking near lethal numbers of cigarettes in order to finish one’s collections with that 1949 Lamborghini. Or whatever.

I was different from most boys. And before your mind heads off tangentially, that’s not what I mean. What I do mean is that whereas Jack Colley, Rob Smiley and Kit Mollison exchanged details of high-end Ferraris, Aston Martin and Porsches, their chatter left me cold and peripheral. For me, cars were not about pace so much as grace. My godfather, a rural GP from generations of “old” money, drove a 1938 Rolls-Royce Silver Wraith. At weekends he would take us children around the Oxfordshire lanes in the back, along with Susie, a gigantic wolfhound. He would slide the glass courtesy screen up and smoke his pipe while he drove us around. A wonderful man, of astonishing largesse. He was, to a 10 year old boy, everything a godfather should be, discreetly handing me fivers and tenners, while holding up a conspiratorial hushing don’t-let-on-to-your-father finger to his mouth. This was in the late 60s when a fiver was an unimaginably large sum of money. Especially for a 10-year-old. Regular beatings by the bully boys in the playground swiftly taught me that the details of such received patrimony should not be disclosed especially in front of the Martin twins, brutal thugs in the Crabbe and Goyle mould, always happy to divest you of your lunch money.

So I saw cars differently. For me, the smell of oil and brake fluid was infinitely less appealing than the scent of lavender leather polish and the beeswax rubbed in to those acres of maple and burr walnut that comprised the trim of the Roller. Even at 64, I still delude myself into thinking that one day I will own, perhaps not a Rolls-Royce but a large limousine. A car that spans postcodes, a car that harks of pre-climate aware motoring. So here’s a bit of fun – if you have read this far, tell me what car you think I would most enjoy and perhaps what car you think I should drive.

Two old farts

During my long relationship with Parkinson’s, that malevolent little toad of a syndrome, I have had many conversations with many people coming at the condition from very different angles.

Last night, around 2:30 I found myself wide awake and unable to sleep. The great thing about the PD community as a whole is that somebody somewhere is always awake and often happy to talk.

Last night was no different. I looked down the list of Messenger contacts, noting those with their green dot visible and thus at least alive and potentially available. After a few cautious pre-flight checks (it’s always worth checking their time zone before pressing the call button. When Randy Schekman was told he had won the 2013 Nobel Prize for medicine, the call from Stockholm, made at 10 AM local time in Sweden, was received by Prof Schekman in a state of sartorial disarray. It was 5 AM in New York.

I don’t think I shall ever properly forget the sight of Prof Schekman, wild-eyed, and discombobulated in his Y fronts and string vest. I think it’s fair to say that some images should never be shared. Captain Underpants he may be but the display of his various underclothing elements (of which there were few) to the wider academic and patient communities cannot have been a positive incentivisation of youngsters towards science.

Anyway, enough said. My chosen interlocutor last night was Wayne Gilbert, English professor, poet, and gentleman. Despite our similarities in thinking on so many issues, we had rarely previously talked and certainly not one-to-one, mano a mano so to speak. There is a particular joy when talking to a man of similar age, complementary experience and outlook. We both adore the English language and its almost infinite capacity for nuance and subtlety. The pressing twilight of our years also bathes our thinking – we talk in realities and possibilities, not fantasies and hyperbole.

I’m not going to expand our thoughts here until we have crystallised them a little more clearly into their final form or at least a step further in the progression. We are oiling arthritic cogwheels first.

It’s time to tackle some taboos. Not in a brush-it-under-the-carpet route to invisibility but in an adult (i.e. grown-up) way of avoiding knee-jerk thinking. Anyway I hope I’ve whetted your appetite. We will be back with some ideas in due course.

We also both agreed that we detested metaphors such as ‘wars’ (yes I know I come close) and ‘journeys’ for the individual and collective Parkinson’s syndrome. Let’s find better.

Two hours of chat – lots of new and useful ideas.

Not bad for two old farts!

Rosie Burdock

Some books mark you. Such a book is Cider with Rosie by Laurie Lee, a paean to the Gloucestershire countryside around Slad. It is a book of almost undefinable beauty, a countryman’s book. You can smell the heat of summer, heady with blossoms and hormones. The end, if you will, of an age of innocence. Of different times and places. That painful, industrial even, transition into post-World War II Britain.

For myself, living mostly in the cradle of Harold Wilson’s of British industry, its white heat fuelled by coal, the black gold of Yorkshire, the West Country of Somerset, Wiltshire and Gloucestershire was full of magic. I, like my sister, was sent to boarding school at 13 in the earnest belief that it would turn us into gentleman and lady respectively. It taught neither the necessary skills. To this day I forget to hold doors open for ladies, to doff my hat in their presence, and so on. I was, by their standards something of a disappointment.

But growing up in the West Country taught me to distinguish the seasons, to mark their passing, their transition in buds, leaves, and the opening of flowers. It taught me their scents, nights hot with hibiscus and night scented stock. To this day, some perfumes transport me backward to those days, late summer evenings, the rusty gate squeaks of crickets in the fields.

I met my girl in the long hot summer of ’74 and I see her still, silhouetted against the sunset, beckoning me to her with curling finger. She was called – well, you didn’t really think I would give away her name did you. For me, she was Rosie Burdock, the eponymous beauty of Lee’s book, whose cider-hot kisses beneath the hay wain lyrically defined his book.

Savernake Forest, in June 1974. Lying on trampled bracken, light filtered through beech leaves, rustling in the wind. Her raven hair, hazel eyes and pale freckles, bows, buttons and fancy complicated clips and zips. As clear today as they were some nearly 50 years ago. Our lips, tingling with cider, close enough to kiss or to withdraw. Pupils dilated, black pools of lust. Time stood still.

We carved our initials inside a heart in the bark of a large beech with my penknife and held hands, swaying with the cider.

When I finished reading Laurie Lee’s book, I was inexplicably saddened. So many books give so much yet, in a way, this book took from us. It described a passage into adulthood, a path through the hedgerows and bracken. But it also closed that door behind us. Innocence lost can never be recovered.

Rosie married, but not me. Still lives in Gloucestershire I believe. We exchange Christmas cards. You can still see those initials carved in the tree in Savernake Forest. If you know where to look.