Blog and be damned!

Today’s blog is about, well, blogs. When I say blog, I am referring in this context at least to Parkinson’s related blogs. My own blog (www.jonstamford.com) could I suppose broadly be considered a Parkinson’s blog in the sense that its origins lie there even if it’s present format has somewhat drifted from its origins. But in the sense that it also distils my ethos about Parkinson’s, albeit infrequently, it should probably be considered within the broad envelope of this discussion.

I should also say that although I may refer to other bloggers and their approaches to blogging, I will not generally name names. This is not for any fear of lawyers (liticophobia?) but a desire not to needlessly hurt their feelings. Without also sinking into the mire of woke consciousness, be aware that I may also change their gender if I feel their identity is still too obvious.

I asked my eldest the other day about when I had started blogging. “Roundabout the late Cretaceous period” was her response. Evidently I am a true dinosaur. This will come as no surprise to anyone who knows me well. But after a little bit of verbal jousting, we agreed it was around about 2010. Having been diagnosed in 2006, I had some four years of experience to draw upon. And draw upon it I did, originally in a blog on the Wobbly Williams website, moving in the following year I think to my own free website and then later still on to a proper grown-up website where I could throw in all sorts of other dimensions – music, photography, video, blah blah blah.

Why did I start a blog? Well, it was largely the result of facing a very persuasive Bryn Williams, he being of a  wobbly nature (oh gosh I didn’t really disguise his identity did I?). Bryn is of course a lawyer and, by nature, extremely persuasive. After a brief session talking to him or, in actual fact, submitting to his hyperbole and flattery of my writing skills, I was persuaded that the world needed to hear from me. I don’t suppose for one second that it actually did but it was fun while it lasted. And Bryn has always been a beacon for many in the Parkinson world (am I returning the flattery here? It looks like it doesn’t it).

At first I simply wrote about my day-to-day experiences and how Parkinson’s had pulled the rug from under them. After a while I began to receive emails and letters even from people who generally said they enjoyed reading my thoughts and admired the positivity. I was seen in some ways as making light of the condition, and not submitting willingly to its many vicissitudes. And I think also because my background was science, specifically neuroscience and most specifically Parkinson’s, I was perhaps seen as a “go to” person if you wanted a bit of science scattered around your symptoms.

Even the most cursory examination of the blogosphere reveals the many different styles, objectives and execution. One, by a friend in Hungary let’s say, is irrepressibly optimistic, finding laughter and humour in the most insane moments. Another is a devout believer in the church of laughter, happy to cite scientific research that “proves” laughter, even the very physical act of laughing, is enough to alleviate dyskinesias. I can’t help feeling it’s not that simple. Rats don’t laugh much and they don’t get Parkinson’s. Hyenas might be a better model. Especially so for scientists with a death wish. My feeling is that hyenas would be Benny Hill fans rather than appreciating more Pythonesque humour. But laughter is just an exemplar. We all have something, some little trick of the light that benefits us and us alone. This of course is the “n of 1” trial approach. But that’s another subject for another day, beyond the scope of this blog.

Leaving aside the scientific tonality or otherwise of each blog, the principal differentiator is positivity or negativity. What is appropriate?

This is the elephant in the room and, in many ways, also the conundrum with which we wrestle daily. We need money for research into treatments for Parkinson’s. That’s obvious. It’s also obvious that we will raise much more money if we portray the condition at its most horrible, crippling and gruesome.

At the same time, we are keen, as a community, and especially for the management of newbies, to convey the message that you can live with this condition and live a fulfilling life. perhaps not your pre-diagnosis definition of “fulfilling” but nonetheless worthwhile. How do we protect them whilst flipping the coin over reveals a much uglier head. I’ve been blogging for a dozen years and still haven’t found the answer to that one. Answers on a postcard please.

I have a good friend in Andorra (could be, although the odds are against it) who is a Whack-a-Mole champion in his country. He is a strong advocate for single sport activity as a means of ensuring good long-term outcomes. Specifically Whack-a-Mole .

A couple of years back the inspirational Norwegian filmmaker Anders Leines and I made a short series of small videos about subjects we felt were difficult to tackle and poorly addressed by our physicians. Poorly explained by them and poorly understood by us. Essentially the direct result of embarrassment on both parties I suspect. We called this series The Dark Side of Parkinson’s. We opened up a message board. The messages we received were very largely positive towards the videos in the sense that we had apparently burst a dam, along the lines of “I’m not the only one then who suffers from this” and “now I feel I can discuss it with my doctor.”

We agonised over whether we should publish or withhold the videos. Would they do more harm than good? Were they balanced? In the end, we had to make a very stark choice. We chose to publish, with each video carrying a reference where further information could be sought.

The responses, as I said, were extremely positive about content. That’s not to say that support was universal. There were certainly some who felt we had done a disservice to the community. I don’t agree necessarily but I do certainly endorse their right to an opinion on the matter.

I probably take, especially these days, what I would consider to be a more realistic appraisal although I happily concede that my “realistic” may map very closely to someone else’s “pessimistic”. My own feeling is that it is easier to justify blind optimism than more downbeat tones. We don’t seem to have to justify happiness as much as despondency.

And there is of course also the issue of readability. From my own experience, although I vouch for the gritty realism of my own approach, I still find that persistently negative blogs do not, unless very well written (such as that by a fellow academic with connections to the low countries) hold my attention.

If I had to summarise, I have reservations about relentless positivity, like a rictus smile. It just doesn’t ring true and obviously even less so as time passes. It takes a very particular skillset to maintain such a façade. The most positive blogs are typically written by patients within the first few years of diagnosis, that phoney war where the drugs seem to work and we delude ourselves that we are somehow different and we can handle it.

Tosh.

The progression of Parkinson’s is hard to arrest and even harder to reverse. Painting rosy pictures of Parkinson’s patients playing racket sports and the like does not help. In fact I feel that setting impossible standards is counter-productive. It can induce a sense of failure. Very few Parkies can run marathons, swim triathlons and so on. Mostly we shuffle to the shops. It is difficult to achieve the right tone in such blogs. Achievement creates respect up to a point. Beyond that point it starts to reek of triumphalism, simultaneously crashing the spirit. For the most part I’m sure it’s unintentional and has been one or two heroes, making their handicaps a source of inspiration. But for others it’s the desperation such efforts can invoke that worries me.

Dismiss it if you will. I am no athlete and you could legitimately decry my observations as the ramblings of a sofa dweller. Perhaps you’re right and my more balanced appraisal (read pessimistic if you wish) is the one to avoid. Patients will work things out for themselves in the fullness of time. Some need more help than others. For some patients, a sharp dose of reality will derail the train. . But in the end the journey will always have rocky elements and it will be hard to hold the line if you don’t have the mental resources to do so. Listen to fellow patients, absorb their experience and prepare your own to help you best equip for the journey. Engage with your Parkinson’s because, as sure as night follows day, it is going to engage with you.

My own feeling, and perhaps it’s the scientist in me still, is that the greater breadth of information available to the patient facilitates more poised and reasoned decision making during the course of the illness. And yes, there will be a lot of that. Decisions, that is.

Start making them now.

Sex and food

Yes I thought that will get your attention.

I’ve come to realise that most wildlife photography is fundamentally about food and sex. No, I don’t mean breakfast in bed or offering the last of the After Eight to the wife before testing the bed springs to destruction. Wildlife photography calls for extraordinary patience and stoicism from its practitioners. Sometimes filming in hostile environments simply in order to make a particular point may be essential to illustrate a particular argument. Sometimes a given shot presents itself on a platter more or less. Sometimes in the case of wildlife literally so. But mostly

Every year, my elder daughter and I visit the Wildlife Photographer of the Year Exhibition at the Natural History Museum. It’s become a habit. The judges, some half-dozen photographers, biologists and researchers are, every year, tasked with sifting more than 30,000 photographs in 16 categories, everything from the sex life of Southern Right Whales (believe me, if you were a diver, you would not wish to be caught in the middle of that) to animals eating each other.

Whether we like it or not, many animals eat other animals, in many cases while still alive. The Yucatan rat snake devouring a bat (Fernando Constantino Martinez Belmar) is sufficient to put you off your lunch. Equally, the battle between the grizzly bears and sockeye salmon seems unequal with such vividly red fish (Adam Rice). Nature seems to have screwed up here. Obviously the magnificent crimson helps to attract a mate and comes in handy further up the stream. But it also makes you a very attractive seafood platter as far as the bears are concerned. Far be it from me to question the Almighty’s plans but I can’t help thinking that staying a murky sort of khaki colour whilst passing the bears and then changing into your cardinal costume would be a better gig. You obviously make a much less attractive suitor when missing a head for instance. But then I suppose we wouldn’t have bears since the salmon are their main diet.

Bears are naturally inquisitive, polar bears particularly so. Dmitri Koth’s image of a polar bear gazing out of a derelict building’s window with a sort of watching-the-world-though-by expression makes him look particularly cuddly and not in any respect the murderous apex predator he actually is. If you want cuddly, Douglas Kimesy’s lockdown adoption of the wombats fits the bill nicely.

All of animal life is there, from intimate little moments to big broad brush commentaries on deforestation or sweeping vistas of wildebeest on migration. If I’m honest, I am not crazy about bugs, even very colourful bugs. Same goes for the bizarre underwater spiders and jellyfish. Very pretty, lots of colours, really not my thing.

Some pictures made me angry. A Brydes whale being choked by discarded fishing net (Judith van der Griendt) or a spectacled bear puzzled at his diminished environment (Daniel Mideros) some were somehow redeeming. My personal favourite was of a 13 year old mountain gorilla,Ndakasi, dying peacefully of a virus in a park ranger’s arms.

Perhaps most remarkable are the photographs taken by children, some 10 years and younger. And often with spectacularly expensive kit. It probably says more about my innate cynicism that makes me question the authenticity of such pictures. Put another way, who set up the shot? Who pressed the shutter. Or perhaps it’s just jealousy of such talent. But I can’t help feeling that the parents of Amaya Shah (close-up picture of two male lions) were somewhat abrogating their responsibilities in allowing Amaya within only a few metres of the lions, however cuddly they appeared. Apex predators. My mother would shoo away small terriers in the street, let alone lions. And Jack Russells are not apex predators. Not by a long chalk.

Living and loving

The end of one year and the start of another are usually all the stimulus I require to rattle off a motivational piece for the forthcoming year, summarising our hopes and fears and offering some kind of action plan for the New Year.

I might even share a few resolutions with you, idle baubles of self esteem. I could perhaps tell you that I plan to lose weight although, having heard this every single year for the last decade so, I imagine this has a pretty hollow ring. I adore my hobbies – glassmaking, photography, writing, genealogy and crafts generally – and like to find time for each. Alas this means spreading myself too thinly to achieve any kind of excellence in any. I am ultimately a jack of all trades and master of none. I make glass in bright colours, vivid and sometimes beautiful pieces, often kiln-formed or embellished. But nothing that this stands up against the work of my friends in that mighty class of 2003. Cathy, Ray and Lesley – these are the genuine article, the real McCoy. To have exhibited once with them was the highlight of my glass endeavours.

In many ways, photography has served as a substitute for glassmaking, becoming my preferred outlet for my fomenting creativity. I even had the hubris to publish a book of my favourite snaps, along with this descriptions and anecdotes that made it (erroneously, mind) seem like a top end gallery catalogue and not the overcoloured and gaudy offering it was. So yes, in answer to your unasked (and probably unthought) question, I can take decent photographs but there are many better.

I registered for two adult Ed courses this year. The first, on basic pottery techniques, was so dull and uninteresting I never returned after the first session. The class consisted of a mixture of bored housewives and strident tattooed harridans with “Fuck Off” T-shirts and battle fatigue camouflage trousers. It wasn’t for me.

The photography class was cancelled before I had the chance to walk out. A general lack of interest I gather.

Of course joining adult education courses is one route to finding that “soulmate”, marginally less cringingly awful than Internet dating – I’ve got to the stage where I can read the other party’s disappointment before even reaching that embarrassing peck on the cheek or firm handshake decision.

It turns out that the world is not populated with statuesque, raven haired beauties of sapiosexual disposition. And in such that are, they mainly seek those of equivalent intellect and not someone whose prize boast is the possession of his own teeth (mostly). I am obviously not over egging the pudding. On the single occasion this last year when, fuelled by a cocktail of Sinemet and strong Belgian lager, I actually asked a girl out – a beautiful Italian neurologist – such, her dismissal was so crushing, flagging up the admittedly unanswerable issue of my age (around double that of hers). My younger daughter even helped douse the flames of ardour by casually dismissing said lady as “way out of your league dad”.

We are born fools and die fools. It’s only that bit in the middle that separates us all. I think that’s probably why I write. When I write, I can create a world, or a person, more perfect. I often don’t. Even when holding the creative tiller, I find the path of self-destruction pulls me nearer. – plus ca change,,,

My vestigial cricket career is now at an end. Battery pack in chest and electrodes in brain put paid to that. Now I am a member of the Bayham and Lamberhurst Bowls club. I have the shirt, trousers and a set of woods. And a new bunch of friends, a genteel group who are as encouraging as one could hope to meet. Ron, Jo, Roy, Kevin, Ian and more Johns than you could shake a finger at. What draws me to bowls? I think it’s the pace of the game (that’s low not fast), the precision and the relative lack of crowd violence and hooliganism. You don’t get a lot of that at a bowls match

We are living in a couple world. We singletons are the object of derision and/or pity, neither very attractive. So yes, I shall continue to write, make glass, write songs, take photos and what have you. It fills the days. And, incredibly at age 65 I flatter myself that I still have something left in the tank, something still to give.

A month ago I had a bad car crash, wrote off the Jag and thankfully missed everybody else. Nobody was hurt. On the other hand, the destruction amounted to a topiary fence, lock-up garage, telegraph pole and police surveillance camera. The lady who helped extract me from the wreckage said “you have one hell of a guardian angel!” Even the police officer said I should be dead. I think it was an opinion not a preference he was expressing…

So, if you’ll forgive me, I don’t plan on tough challenging resolutions for the New Year. I shall keep them simple:

1) try to stay alive.
2) try to find a nice companion to share that time (and they don’t even have to be raven haired goddesses)
3) try not to kill other people.

I don’t think that’s setting the bar too high.

Okay that’s probably enough vague ramblings. Feel free to quote this drivel back to me next year when my primary achievement will doubtless be watching four hours of daytime television each day. Please God, no.

Why the nurses had to strike

I come from a family of health workers – nurses, paramedics, doctors, pharmacists and medical researchers. My own mother was a nurse and my father a doctor. To see nurses on strike is heartbreaking. But to understand the reasons is even more so. I’m told that nursing pay has fallen by around 20% over the last decade in real terms. This is not a political issue – it has fallen under both Labour and Conservative governments. It is simply a wilful failure to recognise or understand what nurses do – because, if they did understand, they would of course wish to reflect their commitment to their patients with salaries appropriate to their skills and learning.

Or so you might think. Even Boris Johnson, acknowledging that he owed his life after Covid infection to the actions of nurses he even went so far as naming publicly, became amnesic when asked about salaries in the sector. Cheaper to praise than to pay.

There are even those, unbelievable though it seems, who see fit to criticise nurses To hear nurses criticised by those who have never emptied a bedpan in their lives, changed a septic dressing or held a dying person’s hand is particularly galling. This is the first time nurses have gone on strike. Try to imagine how desperate they must be to do so. Desperate enough to leave the health service in many cases. Over the last year alone more than 40,000 nurses have left the NHS.

Parliament is full of specious reasons why nurses cannot be payed more. Most cynically risible up of all – the country cannot afford to increase their salaries – is palpably absurd. Over the last decade MP salaries have risen by 28% (from £65,738 £84,144. Nursing salaries, in real terms, have fallen by more than 20%.

Six years ago, I was taken as an emergency by ambulance to hospital and operated on. I was in hospital for a week, nursed by a team of nurses. Three years ago I was involved in a pretty horrible car crash which broke bones. It took weeks of nursing before I was back to something approaching normal. A year ago I had some very specialist brain surgery done (and no, I was not having a brain inserted). I was nursed, in rotation by some six nurses. I would not be alive were it not for nurses.

So before you criticise them ask yourself this one question. What do you do on any day of your life that matches what they do on every day of their life?

Now watch this video. It will help you understand

Supporting the wonky donkeys

It’s that time of year when the clatter of charity boxes fills the air as so many charities compete for our attention. Especially this year, when we can barely afford to feed ourselves, the charities seen especially sharp pricks to the conscience. Just when we were beginning to be comfortable with the idea of cutting back on superfluous expenditure – and that includes for the purposes of this discussion charity donations – than we are accosted by earnest young men called Tristan or Sebastien in floral tabards outside Sainsbury’s, anxious to explain the importance of the charity and why it should be particularly deserving of our support.

In case you ever need to know about providing proper treatment for traumatised donkeys (or it comes up as a question in the pub quiz) PTSD is rife amongst the retired donkey population.

Apparently.

And when questioned by Tristan about the lives of these donkeys, he paints (with the help of a folder filled with pictures of some very glum donkeys). I reach for a fiver in my pocket. He reacts like a Bateman cartoon, affronted that I should do something so vulgar. No, he wants me to sign up to pay a pound a month or whatever it is.

I’m happy to hand over a fiver to assuage my conscience but I balk at making a long-term commitment to Eeyore. Tristan doesn’t give up that easily. He assures me that I can cancel at any time. But then Sky said much the same and it’s taken me nearly a month to rid myself of the last vestiges of them and their satanic satellites. I reassure Tristan that I am interested in supporting these unhappy ungulates but I will need to check out some details first on their website. Apparently they don’t have a website. Peals of alarm bells ring out.

The same day I am approached by the Cats protection league (I didn’t know there was such a thing), a charity aiming to rehouse immigrant families down on their luck, one about rare childhood cancers, and the usual Injured Jockeys Association, Cure Parkinson’s and RNLI.

A total, including the nondigital donkeys, of seven charities in one day. So what do you do? A fiver to each (or at least those who will take your money)? Or should I give more to some than others? Who is the more deserving? And how could you even begin to decide?

Let’s have a go. Bottom of the pile is the Cats protection league. Well, and this should bring down the hate mail like lava from a volcano, I don’t give them a very high ranking. I should probably declare my hand here. I don’t like cats. Never have. Had it been dogs, that would be different. But cats go to the bottom of the pile. For the moment at least.

What comes next? I guess it has to be the donkeys. On the basis that we should probably put human charities above animals. Or should we? I have watched jockeys in action and not been impressed. Whipping animals bred purely for our pleasure as a vehicle for betting doesn’t seem to me to be something I would wish to support. I don’t wish injury on anyone but horses are relatives of donkeys and I feel the need to strike a blow for the donkeys. Sorry jockeys, wrong place at the wrong time. You are now nestling between the cats and the donkeys.

Okay, the next rung on the ladder of misery is probably the RNLI. I think really this harks back to our imperialist yearnings propped up by a long naval tradition. Don’t get me wrong – the RNLI does indeed do a wonderful job for those who need it. But how many actually do? How many people each year are rescued by lifeboats? It’s somewhere in the region of 400 lives (human) each year saved by the lifeboats. And some animals although I don’t have a breakdown for donkeys.

Parkinson’s? I can hardly be expected to answer that one. Yes, Parkinson’s is indeed rubbish. It’s no fun to have. So yes I would like to see a cure. That would prevent more than a thousand deaths each year. But is it more deserving somehow than the 400 saved by the lifeboats. Parkinson’s is, after all (and we can argue over the details as much as we like) still mainly a disease of old age, of people who have had some sort of life at least. I don’t know for a fact but I guess that most of those lives saved by lifeboats are probably younger people, adventurers given a second chance.

You have to factor in quality of life, duration of life saved and the whole bundle of other policy assessments that make for some very heavy mathematics. And if you go down that route, where do you put the rare childhood cancers? Many of those lives are snuffed out so early that it is impossible to assess what they might have become. But there are very few. Should I factor that into my calculations? I just wish I had paid more attention in bioethics class.

Humans and animals? It’s not really possible to answer these questions. Do you distribute your dosh proportionally, giving more to childhood cancer research than unwanted moggies? And what about those website-free donkeys? Or do we ignore distribution and simply give whatever we have in our pockets to whoever appears in front of us?

Don’t ask me. These are questions for God and gods.

In any case, I love cats. But I can never finish a whole one…

Those competitive Stamfords

When I was sent to boarding school at Marlborough, it was instilled in us from day one that we were expected to be competitive both academically and on the playing fields and athletics track. I needed no telling. For the previous 13 years my father had instilled in me his intense competitive streak.

“It’s not the winning, it’s the taking part” my mother would counterpoint in order to perhaps blunt my father’s innate competitiveness. My father’s notion of competition was very much along the lines of lots of boys taking part in sporting events but with the Stamfords winning. This in turn became his own personal mantra some years later of “family first, everyone else nowhere”. There was no sporting or competitive event too small for him to take an interest if there was a better than evens chance of winning. Before the egg and spoon race, he would check out the eggs and spoons for the appropriate weight, shape and degree of depth and brief his offspring accordingly.

“Okay Jonathan, it’s a shallow teaspoon with a size 3 hens egg, slightly blunted. Try to get thee speckled one. Don’t go off too fast – let the others go ahead at a faster pace. Their eggs will fall off. Keep your speed steady but not maximum. Look to close in over the last ten yards. Got it?”

I nodded. I was four.

I tried to focus but with the best will in the world it was a lot of information to take in for a four year old. If I won I would get a brief but affectionate tousling of the hair. If I lost I got my mother’s voice instead with the bit about taking part. Either way I would still get my father’s analysis.

And God help us if we stepped outside the rules (even of the egg and spoon race). He abhorred cheating. Competition meant nothing if you cheated. Stern dressing downs followed any whiff of impropriety, any hint of a misdemeanour. He would punish us with that most brutal of sanctions, his disinterest. He would take no further interest in any sport or competition in which we had cheated. Which was very very few.

But it worked. I am competitive in many areas of life – in sport (stop laughing), research et cetera. Even writing – I want my writing to be appreciated, for it to be competitive with the best. I know I’m not there yet. I can think of plenty of writers whose books I admire but know that I cannot reach their pinnacles. But I try. I am my father’s son. I hope I have inherited the best of him and not the more tetchy withdrawn version of his last few years as a widower. It was not how he wanted it.

I make my father sound a tyrant, remote and disengaged. Nothing could be further from the truth. He had ways of rewarding us children with his interest. He had a way of making our world his. If we were interested in cricket or football he would make sure he was knowledgeable enough to be part of the conversation. He would ask for my thoughts on Edrich or Boycott as openers for England, whether Tommy Smith was too impetuous at full-back for Liverpool, whether it would be Connors or Rosewall at Wimbledon.

What we didn’t realise was that he was sharpening our social skills. He despised knee-jerk responses to questions. He wanted us to reason and argue. It was an education far greater than I was aware of at the time. Those lessons have stuck with me throughout my life. And those of my brother and sister.

And we are competitive even within the family. For instance I played intermittently for my local village’s 4th XI. My brother had a trial for Yorkshire, even bowling a future test opener in his short spell. My son appears to have acquired his uncle’s rather than his father’s cricketing skills.

Basically, we were competitive kids and became competitive adults.

I don’t know why I seem to have exempted my mother from all this, perhaps conveying – erroneously as it happens – the notion that she believed only in taking part. But in her own ways she was every bit as fierce a competitor. A game of Scrabble or canasta brought out the worst in her. She took defeat badly and was known to upend the Scrabble table when facing defeat.

Only once did she accept a defeat when playing an ageing Dowager aunt from Pietermaritzburg who played Scrabble to an almost international level. She would visit us for a month every summer, driving my mother to distraction and subjecting her to daily linguistic beatings. On the last day of her holiday before we shipped the old bat out to South Africa again, my mother had the letters in her hand to win the game but generously and perhaps wisely chose not to win. I still don’t think that aunt Ivy was quite ready for CLITORIS across a triple word score.

Keep taking the tablets

Every day I take levodopa, rasagiline, entacapone, carbidopa, propranolol, metformin, simvastatin, benserazide, clonazepam, rotigotine and a modest number of vitamin supplements. These amount to 19 tablets/capsules/patches usually at six timed intervals. That’s 133 a week, 6935 a year. Yes, count them.

Some are delivered to me in bottles, others in those infernal blister packs which seem to serve little purpose other than to destroy one’s nails. They certainly don’t make it easy.

And they come in pretty much every colour of the rainbow, albeit with a preponderance of white. My propranolol tablets are a rather fetching pink (usually – occasionally they are white thus making them indistinguishable from the amitriptyline tablets of the same dose and in identical packaging) and have the letters embossed on them although you would need the magnification of the Hubble space telescope to read them, so minuscule are they.

Two tablets, on the face of it identical, are apparently distinguishable as well. Clonazepam (pale whitish peach) and simvastatin (pale peachy white) I understand can be distinguished from each other by their embossed lettering. Clonazepam also has a kind of score mark down the middle. No chance of a drug error there then.

I’m told that you can have your daily tablets lovingly sealed into your own personal blister packs by your pharmacist should you so wish. Also, bearing in mind just had diabolically difficult blister packs can be, deliberately sequestering one’s medication into such an inaccessible format seems perverse.

Moreover the resulting blister packs (certainly those that I’ve seen) are virtually the size of an A4 document wallet. And secondly, as was the case this month, pharmacists make mistakes. In this case they managed to double the dose of one of my drugs. Oh well, that’s life (or death).

There are some medications where this makes little difference but in the case of others can have serious consequences. At the end of the day it is quite important to be able to distinguish your different drugs especially when, as in my case, there are so many.

There is also the psychology of colour to factor in. For example, drugs affecting the heart and circulation tend to be red, orange or yellow – bright colours for brighter days. Conversely drugs affecting the mind and brain tend to be more muted – muted purples and blues, perhaps hinting at the dark arts of psychopharmacology and neuropharmacology.

These are not just mere flights of fancy. The colours and shapes of tablets to reflect marketing considerations and integral part of the overall promotion [1]. A recent paper found that different shapes of tablet also has an effect on patient responses [2].

Of course little of this applies to generic drugs. Once a drug’s patent expires it is a free for all. Every Tom, Dick or Harry can make and market their own version of Sinemet. And they don’t have to make it even look like the original’s comforting pastel pink and baby blue capsules.

Generic drugs are a minefield in terms of regulation. But that’s for another day.

[1] Drug Tablet Design: Why Pills Come in So Many Shapes and Sizes. https://ftloscience.com/drug-tablet-design/

[2] Olesya Blazhenkova, Kivilcim Dogerlioglu-Demi. The shape of the pill: Perceived effects, evoked bodily sensations and emotions. PLoS One. 2020; 15(9): e0238378. published online 2020 Sep 8. doi: 10.1371

DBS Diary 14 – airport security gates

As many of you know, I had a DBS operation (deep brain stimulation) a year ago which has given me a huge new lease of life. But you still have to be on the ball to avoid circumstances that will disable the apparatus.

It’s a party trick for many Parkies to switch off their DBS to demonstrate how quickly their symptoms, particularly tremor, return sometimes even to the extent of being unable to restart the device. I tend to eschew these kind of demonstrations – I’m not a performing seal despite my flappy fins. No exhibiti in a freakshow. I won’t perform for your entertainment.

A situation we DBS chappies are invited to avoid is that of the metal detectors used by airports. There have been occasions I gather when such devices have switched off cardiac pacemakers and, since the DBS system is fundamentally a brain pacemaker, one can reasonably suppose that the same might apply. With that in mind I’m quite belligerent about these portals.

Returning from Paris on the Eurostar last weekend I was faced with just such a scenario. Younger daughter waltzes through the portal without so much as a bleep or a ping. But no way am I going to do the same.

“S’il vous plait monsieur” I call out to the armed officer standing disinterested nearby. He strolls over languidly with a vague air of irritation at the Englishman who had torn him away from an interesting conversation with a very fetching female colleague.

“Monsieur?” he says

I point to the gate portal and say in what I think is pretty decent French when you consider the last lesson I had was nearly 50 years ago. “Je suis desolee mais je ne peut pas passer par ce porte la parce que j’ai un pacemaker” I gesture to my chest.

“stimulateur cardiaque”. I emphasise, leaving nothing to chance (and suddenly remembering the word).

“Pas de probleme, monsieur” he says and points to a small paragraph of text in French, English and German explaining that the portal is safe for people with pacemakers “in the majority of cases”.

Now, I don’t know about you but for me “the majority of cases” falls a little way short of the kind of reassurance I need in this situation. So I have to raise the stakes and it is at this point that I have a mental block and forget the word for doctor (which is of course ‘medecin’ as I recall a few minutes later) and substitute the halfway plausible ‘docteur’ which sounds like it could be right.

“Mon docteur m’a dit absolument pas” I say, throwing in an appropriate gesture of finality to emphasise the point.

Meanwhile, younger daughter turns round to see what the kerfuffle is all about. This confuses the customs man.

“Your docteur?” He says pausing briefly before his lightbulb moment “your daughter”. He points to my daughter. This confuses matters further.

“My daughter” I say abandoning all efforts at French “not my doctor”.

Younger daughter decides that we stand a better chance of getting through the gate if we fess up about the DBS.

“It’s not really a pacemaker “she begins, thereby immediately attracting the attention of the customs officials who now feel they have been misled. “It’s a brain pacemaker” she says and points to my head.

“zen ‘e can go through ze gate.” says the customs man.

Younger daughter shakes her head slowly for extra gravitas. “No” she says. “If he goes through this portal” she says suddenly and forcefully extending her arms widely “his head will explode “

“Pouf- just like that” she adds for emphasis.

Well-intentioned though her intervention doubtless is, it becomes immediately apparent that words like “explode” are not ones to use in the presence of security type people. Especially those who don’t speak English. And have guns.

There is a brief sound of holsters being unclipped, guns cocked. In what felt like a lifetime but was probably only a few seconds, the security guards realise that I am no threat to them (especially with an imminently exploding head). They offer to search me instead which seems a much more reasonable prospect. I immediately volunteer to be searched by the rather gorgeous blonde but in the end it is the rather rough and unshaven Neanderthal. Still, better than having an exploding head.

A small American child, behind us in the queue, is visibly disappointed. After all, an exploding head is not something you see every day. Even in America. Sorry lad, can’t help.

A message from the lettuce

“Today, as we say goodbye to Mrs Truss, we can be proud of our Tory MPs. For this, fellow vegetables, is not simply a victory for one iceberg lettuce. This is a victory for all lettuces – Lolo Rosso, friseee, endive, romaine and beyond. Indeed lettuces throughout the country can hold their heads high and be satisfied with work well done. Mrs truss has learnt the true strength of the salad lobby. No longer will lettuces be marginalised to small side dishes. Lettuces throughout the country can expect, nay demand, to be centre plate.

And it doesn’t stop at lettuces. Radishes, cherry tomatoes, sliced beans in vinaigrette can emerge from the shadows and take their rightful place on the dinnerplate. We have a right to speak under right to be heard.

The Tories have led the country for too long. It is time for salad items and vegetables in general to stand up and be counted. I believe we need a swift transition of power from Mrs Truss and her government and I will expect to appoint my cabinet within a week. This will be a cabinet without prejudice against minority groups and, yes, sprouts will be represented in this new government of vegetable unity as we move into the broad sunlit uplands of consensus politics. I thank you for your attention”.

Paxman, whining buffoon

Let me first explain to the non-British amongst you. Last night saw the broadcast of a supposed ‘documentary’ about Parkinson’s. So far so good. However this shed little light on the condition itself and rather more light on the presenter Jeremy Paxman, recently diagnosed with PD. Jeremy Paxman for those of you unaware of him, is a British news and current affairs sort of person renowned (if that is the word) for his aggressive combative interview style. Not everybody’s cup of tea then. Some of his interviews are legendary such as those in which he sought albeit unsuccessfully to bring then Home Secretary Michael Howard to account (https://youtu.be/Uwlsd8RAoqI?t=244). He has also hosted many episodes of University challenge (that’s Paxman not Howard) with a style as abrasive as Bamber Gascoigne was adulatory.

Paxman has of course, one imagines, rather cultivated this reputation and it’s probably the case that politicians generally deserve this kind of treatment more than in times of yore. Times change, politics change, our respect for them changes. In some ways we created Jeremy Paxman.

Okay enough of the preamble. Let’s get to the point. Parkinson’s is a cruel condition yet some people are somehow elevated by their Parkinson’s (Tom Isaacs springs to mind, Perry Cohen too), spurred on to great deeds, and able to somehow improve the lot of others not just themselves. Many others are, not surprisingly diminished by the condition, defeated even. Paxman is one of those, a man with little to say of the condition but an hour of prime-time television in which to do so.

Sure, complain about the condition and its many vicissitudes but to package a series of unrelated visual anecdotes into an hour ‘documentary’ about Paxman’s tribulations with Parkinson’s fell a little short of the mark. Did we really need to see him picking up faeces from his dog? And what was that entirely unprovoked outburst “Brian Blessed is a wanker” about? From what dark recess of Paxman’s mind did that emerge? More so, why was it left in by the editor? One moment we see Paxman surrounded by many books, a byword for scholarship, Renaissance man even. The next he is the pub bore, desperate for a laugh, or at least a reaction.

The program ultimately was a mishmash of separate little vignettes about Parkinson’s which ultimately did much less to illuminate the condition than one might have hoped. There were tantalising glimpses of a future both positive and negative punctuated largely by profanities from Paxman. I’m sorry Jeremy but I think you have diminished yourself in many people’s eyes. But at least the program wasn’t entirely irredeemable – we did get to hear about Joy Milne and her remarkable ability to detect Parkinson’s with her nose. Now there was real hope.