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.

The call of the croissant

It is often enough said in the context of Parkinson’s that our past is gone, our future uncertain and therefore the only remaining reality upon which to cling is the present. We live for the moment, squeezing joy out of that toothpaste of misery.

That certainly applies to me. My friends and family often accuse me of wilful impulsivity. Accuse is perhaps too strong a word. But there is no doubt that my predilection for unusual and unexpected actions does sometimes wrongfoot them, leaving them wondering why and how. Take this morning for instance.

Actually let’s back up a bit to put everything in context. The pub in which I commonly imbibe, The Broken Arms, had a terrible week with barmaids falling like the casualties at Passchendaele. One by one they succumbed until, by Sunday, even Lady Eleanor and Amazing Grace had to concede defeat. This is not normally amongst my more successful or appropriate expressions to use with the fairer sex but it was the case that they “looked like death warmed up”. I suspect I’m no longer on either of their Christmas card lists because of this inappropriate transgression.

Eventually, more or less anyone who could pull a pint found themselves behind the bar. It was pretty much as I would imagine a World War I trench to be. Just step over the bodies. That sort of thing.

First thing Monday morning, I knew something was not right. A definite tickle at the back of the throat, my cheeks pink and my temperature rising sharply. By lunchtime, my temperature was now one of the reactor cores at Chernobyl, and my cheeks as red and inflamed as a baboon’s arse. Not pretty. I retired to bed.

Fortunately this particular bug, whatever the little blighter was but Covid it wasn’t, was one of those 48-hour types. I felt like death warmed up. My mouth and throat looked like one of the Lascaux cave paintings, only messier. Leaving aside the associated nausea and flatulence (I may have to destroy the mattress), the entire episode passed through my system like Hurricane Ian.

By this morning, the storm had passed and apart from a slight feeling of weakness and a sense that I had not really kept enough fluids down on the previous few days I felt fine. I woke early (around 4:30 AM as I recall), with an overwhelming and inexplicable hunger for croissants.

Under normal circumstances the ensuing chain of events would go something like this: awaken, yawn several times, be vaguely aware of pastry in some form, turn over and go back to sleep.

Occasionally a variant of this along the following lines might occur: awaken, a bit of yawning as before, stretch, extract myself from bedclothes and attempt to stand vertically, gingerly make my way downstairs, dazzled every few seconds by the newly installed motion sensitive lights. Find some of last night’s pasta on the side in the kitchen. Eat it, at the same time wondering why it tastes better now than it did when served six hours earlier. Continue to ponder this weighty matter as I head back upstairs and attempts to go back to sleep.

You will however notice that both of these activities involve waking up and going back to bed. None of them involve getting dressed, picking up money, car keys, a four pack of Red Bull and a McDonald’s sausage and egg muffin, and heading up to Maidstone to join the M20 to Folkestone, then the Channel Tunnel and France.

This one did.

And had it not been for my failure to pick up my passport would have ended even further from home. After a very brief flirtation with the idea of trying to see if my credit card served as a sufficient ID to get into France (it probably would have done pre-Brexit), I pulled over into a layby, switched off the engine and fell asleep. Couple of hours later and I was back at home, in bed and wondering if I had dreamt it.

The fast food wrapper and half drunk Red Bull proved otherwise. I have always been impulsive even before Parkinson’s but this was Royal impulsivity in velvet robes and ermine, encrusted with precious stones.

I spoke to Shel about it. She knows me better than practically anybody outside my family. I don’t think even she couldn’t quite believe it.

“You know” she said “you can get croissants in Britain”.

The Union Jack

Like most of the country, perhaps most of the world, I watched much of the coverage of Elizabeth II’s obsequies. It has to be said that we do this kind of pageantry, pomp and ceremony awfully well in this country. The music was well chosen and magnificent. Pipes and drums by the hundred. I have to confess a weakness for the skirl of the bagpipes, despite having not one drop of Scottish blood in my make up.

One can talk, and Hugh Edwards the BBC anchorman, did at some length of the symbolism of every last detail of the ceremony, down to the very flowerbeds from which the flowers for the wreath were chosen – three palaces no less! Nothing of the quick trip to the local garden centre here.

Over the last few decades the Union Jack has, to my mind, taken on along with the cross of St George, a darker edge, being so often misappropriated by right-wing groups and by sporting hooligans. Perhaps I’m oversensitive but these co-opted uses and associations of the Union Jack have made me uncomfortable. The flag was seen often as an aggressive image, inviting confrontation. Over the last few decades, this has been a gradual erosion of the more noble associations of the flag.

I think that changed yesterday. I think the Union Jack once more became a symbol of unification. The images of skinheads, hooligans and the worst kind of football tribalism were, with one great arc of pageantry, swept aside. The Union Jack became once more a proud symbol of the unification of kingdoms. Nothing could demonstrate better to the thug element how unwelcome they were. The Union Jack, once again, is a symbol of the best of us, the better angels of our nature. It is, once more flag I would feel comfortable flying.

The Queen has been perhaps our country’s best export, our best ambassador. With simple manners and a notion of service that few brought up in post-millennial Britain would understand, she has put forward the best face possible of the UK.

Reading the above you would probably conclude that I was an out and out royalist, prepared to throw down my life for my country. You would be wrong. If anything, my views are marginally in the direction of republican inasmuch as I reflect on these matters at all. But symbols are important as yesterday showed in abundance. In the space of nine hours, the union Jack once more became the symbol of the best of our country and not the worst. We have taken the flag away from the hooligans and thugs. It represents us once more, not them. Thank you your Majesty, thank you.

A beloved monarch

It was clear by early afternoon that this was not a simple health scare. The gathering at Balmoral of her children was clear indication that this was the final act of her Majesty’s life. Details were sketchy, as perhaps they should be, but ‘medical supervision’ is a bleak euphemism for pain relief and dignified management once the outcome is clear.

The formal announcement later in the afternoon was sombre, measured and simple. Her Majesty was as dignified in death as she was in life.

I find it difficult to express my feelings clearly. Perhaps I am, like much of the nation, experiencing my own personal recapitulation of bereavement. Certainly, I find myself reflecting on the death of my own mother and father and my feelings around that. And, at the end of the day, the Royal family are still a family first and foremost. Stiff upper lip extends only just so far.

Much has been said of her longevity, dignity, honesty and perpetuation of what might now be considered old-fashioned values. There is little I can add to what will undoubtedly be a torrent of analysis over the coming days and weeks. Wherever one’s political leanings lie, whether left or right, red or blue, they are today irrelevant. Whether monarchist or republican, let’s seek unity not division .

The clocks have stopped on one of the most remarkable reigns in history. But they have also brought to an end the life of a much loved mother, grandmother and great-grandmother.

The family needs time to grieve. And grieving rarely follows a timetable.

Across the river and into the trees

I have been a lucky man. Life has, thus far, been kind. Those may seem absurd sentences for someone who has had Parkinson’s for 16 years, type II diabetes and even a heart condition thrown in for good measure. A year ago I had neurosurgery to implant electrodes that would control my shaking hands and restless feet. Hardly the medical history of a lucky man you might think.

You would be wrong.

I often feel a fraud. I know many with Parkinson’s, crippled by the vicious tarantella of dyskinesias and the agony of dystonia. I know many whose nights are full of terrors, stalked by demons, prey to wild beasts. Or riding that ragged edge between sleep and dreams toward the gates of delirium. I know diabetics, models of compliance, entering their later years as amputees, their digits, one by one plucked from them by neuropathies, vascular insufficiencies too numerous to mention, and the blackening of sores and gangrene.

Were these afflictions to afflict me, I would doubtless rail against the injustice, the savagery and relentless onslaught of the condition. But instead the Almighty, by whatever pronouns you know him/her, has seen fit to give me more time to reflect.

Before L-dopa, life expectancy with Parkinson’s was six years from diagnosis. That would take me to 2012. I would not have seen my eldest musician daughter graduate from university let alone my younger children. No paediatric intensive care nurse. No skilled paramedic. I would have missed all of it, serving only as food for worms. And even within a life expectancy of six years, they would have been pretty grim. A slow waltz into darkness.

Worst of all, I would have missed the last series of Game of Thrones.

Primo Levi, in “The Drowned and the Saved” touched upon it in the apparently arbitrary murders in the WW2 concentration camps. The suicide rates amongst survivors of the death camps reflected their inability to reconcile their own survival against the extermination of many other similar individuals. This paradox drove many (the author included in all likelihood) to take their own lives, unable to understand their salvation in the context of the greater drowning.

Yet others, better patients than I, can write with authority about the screaming agonies of dystonia, the tarantella dance of dyskinesia and the many invisible symptoms of this sordid syndrome. Not me. I may preach from the same pulpit but my words if not my authority are carried away on the breeze.

I am not alone. I know of others who whether vocally or sotto voce, feel equally uncomfortable. Often in the aftermath of successful DBS, our bodies react to this liberation by making us feel guilty about advocacy. I can (but won’t) name friends who feel equally uncomfortable. So how do you speak to the “drowning” from the comparative security of the lifeboat.

If one of the central pillars of advocacy is the acknowledgement of experience, then we are muted. Yet I would argue that it is that transition from drowned to saved that is, in itself, informative.

So brothers and sisters, perhaps you should be the judge of this. Is my voice no longer relevant or meaningful. Do we press on in the hope of regaining our authority or do we, like Stonewall Jackson recognised the need to collect our thoughts once more and “cross over the river and rest under the shade of the trees”.