Friday, 27 May 2016
Moving on
All future blog postings will be at www.jonstamford.com - please redirect your browser there.
Tuesday, 9 June 2015
TEATIME
No matter how busy we are in the office, there's always time for tea. Somebody will finish a phone call, send an e-mail, sign a cheque and decide that this is a convenient moment for tea. There is an almost Zen like quality to the moment, similar to the tachi-ai in sumo, when, from that tiny moment of stillness, pandemonium erupts. Well, I say pandemonium but what I really mean is flickering of interest.
And in an office largely full of girls, I should immediately clarify that the point of similarity is that Zen-like stillness, not the imminent collision of mountains of flesh. That's how misunderstandings happen.
I think I have probably rather overstretched this simile to be honest. I'd probably better disguise their names as well. Better safe than sorry.
Anyway, I digress. Someone calls "tea anyone?" and pandemonium erupts. Sorry, mild interest. Funnily enough, the words "mild flicker of interest" are not usually followed by the word "erupts". Sometimes the English language can be strangely restrictive.
Where was I? Oh yes, tea. I don't usually come into the office more than a day a week. Mostly I work from home and, in a domestic context, tea time largely fails to reproduce that frisson of excitement found in the office. It takes on the quality more of a refuelling stop. A chance to take on fluid and nothing more. But in the office, there is always the unwritten possibility of more. If there has been a board meeting in the morning, or a committee, or working party, there is always the promise of flapjacks, millionaire shortbread or even, if we have been visited by knights of the realm, an outside chance of Jaffa cakes.
But irrespective of the circumstances, there is the business of tea itself. It would be easy if everyone drank exactly the same formulation of tea -- say one tea bag, milk and 1 teaspoon of sugar. That would be easy. Predictably, in an office full of larger-than-life characters (no, girls, I mean metaphorically -- not a sumo reference), everyone takes their tea slightly differently.
Of course, being in the office together full-time, each knows the others' preferences. They barely have to nod to each other. It's the kind of unwritten communication that you find in a flange of gorillas or a congress of baboons. Again, I'm not likening the girls in the office to groups of primates. They may share make-up tips but I have never seen them picking insects off each other.
Anyway, as a less frequent visitor to the flange, sorry office, I find myself struggling to remember who takes what in their tea. Or even who takes tea. In the space of 10 yards, from the office door to the kitchen, I have forgotten not only how people wanted their tea but also who wanted tea at all. On a bad day I may even forget who is in the office.
To resolve this, I hit on a master plan. Being by nature a scientist, I would prepare a crib sheet of everyone's tea preferences (and coffee for that matter) and put this in the kitchen, where needed. If Ellen wanted coffee (she doesn't drink tea), I would simply check the appropriate column, add a level teaspoon of coffee powder and pour a splash of milk into the cup. Or if Lisa wanted tea, she would prefer it without milk but with a single sugar.
Foolproof, I think you'll agree. And I could hardly wait until 3 PM to put my system to the test. Finally, there would be no barely veiled looks of disappointment from the team when presented with unsolicited or incorrectly prepared beverages. Nothing was left to chance. I had all their preferences down in black-and-white. This would be a triumph of science over chaos.
Except that on this particular occasion, Ellen elected, for the first time in a decade, to take tea instead of coffee. Hannah refused to submit to my coffee formula by insisting that she would only drink real coffee and, as for tea, would only touch a formulation she had encountered somewhere in the far east. And Lisa's tea went to Sam, since I had somehow failed to notice she had left the office three hours earlier. Observation is not my strong suit.
Still it's not without benefits -- it's highly unlikely I will ever be asked to make the tea again. Silver linings and all that.
And in an office largely full of girls, I should immediately clarify that the point of similarity is that Zen-like stillness, not the imminent collision of mountains of flesh. That's how misunderstandings happen.
I think I have probably rather overstretched this simile to be honest. I'd probably better disguise their names as well. Better safe than sorry.
Anyway, I digress. Someone calls "tea anyone?" and pandemonium erupts. Sorry, mild interest. Funnily enough, the words "mild flicker of interest" are not usually followed by the word "erupts". Sometimes the English language can be strangely restrictive.
Where was I? Oh yes, tea. I don't usually come into the office more than a day a week. Mostly I work from home and, in a domestic context, tea time largely fails to reproduce that frisson of excitement found in the office. It takes on the quality more of a refuelling stop. A chance to take on fluid and nothing more. But in the office, there is always the unwritten possibility of more. If there has been a board meeting in the morning, or a committee, or working party, there is always the promise of flapjacks, millionaire shortbread or even, if we have been visited by knights of the realm, an outside chance of Jaffa cakes.
But irrespective of the circumstances, there is the business of tea itself. It would be easy if everyone drank exactly the same formulation of tea -- say one tea bag, milk and 1 teaspoon of sugar. That would be easy. Predictably, in an office full of larger-than-life characters (no, girls, I mean metaphorically -- not a sumo reference), everyone takes their tea slightly differently.
Of course, being in the office together full-time, each knows the others' preferences. They barely have to nod to each other. It's the kind of unwritten communication that you find in a flange of gorillas or a congress of baboons. Again, I'm not likening the girls in the office to groups of primates. They may share make-up tips but I have never seen them picking insects off each other.
Anyway, as a less frequent visitor to the flange, sorry office, I find myself struggling to remember who takes what in their tea. Or even who takes tea. In the space of 10 yards, from the office door to the kitchen, I have forgotten not only how people wanted their tea but also who wanted tea at all. On a bad day I may even forget who is in the office.
To resolve this, I hit on a master plan. Being by nature a scientist, I would prepare a crib sheet of everyone's tea preferences (and coffee for that matter) and put this in the kitchen, where needed. If Ellen wanted coffee (she doesn't drink tea), I would simply check the appropriate column, add a level teaspoon of coffee powder and pour a splash of milk into the cup. Or if Lisa wanted tea, she would prefer it without milk but with a single sugar.
Foolproof, I think you'll agree. And I could hardly wait until 3 PM to put my system to the test. Finally, there would be no barely veiled looks of disappointment from the team when presented with unsolicited or incorrectly prepared beverages. Nothing was left to chance. I had all their preferences down in black-and-white. This would be a triumph of science over chaos.
Except that on this particular occasion, Ellen elected, for the first time in a decade, to take tea instead of coffee. Hannah refused to submit to my coffee formula by insisting that she would only drink real coffee and, as for tea, would only touch a formulation she had encountered somewhere in the far east. And Lisa's tea went to Sam, since I had somehow failed to notice she had left the office three hours earlier. Observation is not my strong suit.
Still it's not without benefits -- it's highly unlikely I will ever be asked to make the tea again. Silver linings and all that.
Thursday, 4 June 2015
DESPERATION OR INSPIRATION
When you are newly diagnosed with Parkinson's, you find yourself on an information rollercoaster. You are inundated with information, weighed down with websites, pummelled by pamphlets and awash with advice. Everyone seems determined to tell you what you should do, when you should do it and what will happen if you don't (or sometimes even if you do). We talk of Parkinson's as a journey and, just as we're slipping on our metaphorical trainers, people are hastening to tell us about the rigours of the journey and the toll it will take. Whether they believe themselves to be helpful or not, there seems to be a need among some of the gloomier 'old hands' to make you share their despondency, their apathy and loss of spirit.
For these people, all life was sucked out of their bodies by the diagnosis. They sit quietly in a corner of God's waiting room waiting for their appointment. These are people who never get beyond the 'why me' question, people whose sense of victimisation by the illness gnaws at their being. These are people for whom wallowing in self-pity is the norm,
Misery attracts misery. The glums are never happier than when sharing their wealth of experience with a Parkinson's rookie, watching cannibalistically as they draw the life force out of their victim. Some don't even realise they're doing it. Others take some perverted comfort in dragging people down rather than lifting them up.
Parkinson's is like that. As a good friend of mine explained, the same thing that makes us frail also gives us power. The value of that experience is incalculable. Our narrative of the illness can be used for good or bad. We can do irreparable harm or inestimable good. We can become dementors or beacons. And these are not predetermined paths, the unalterable expression of Parkinson's on the human psyche.
These are choices. We have the capacity, when faced with Parkinson's, to avert our gaze and cower, beaten, in a corner. It's the soft option, passive and victimised. Or we can stand tall, stare this intruder in the eye and decide to do our best. Not just for ourselves, but also for others.
Parkinson's gives us that power. And it does so in direct proportion to our experience. The longer we have had Parkinson's, the more valuable and credible is our experience of the condition and the more sought-after is our opinion. That is power. But with that power comes responsibility. We can wield that strength for good or bad.
I've been lucky. Although my early experience of Parkinson's, and people with Parkinson's, was dispiriting, it was not terminally disabling. Among the many dementors, somehow I found, or was attracted to, people whose indomitable spirit fought back against the condition -- people who, as the condition took more and more from them, seemed to find more to give. People who would not submit to the condition but resisted with fearless determination. People who come from all walks of life -- a teacher from Tennessee, a surveyor from Hertfordshire, a boxer from Norfolk, a nurse from New Zealand and more.
Parkinson's is tough, certainly. It is, as Michael J Fox once memorably said 'the gift that keeps on taking'. It will make demands on you as it progresses and how you face those demands will say much about you as a person. I have been fortunate to have met people who, in the words of Val Doonican (and I can't quite believe that I am quoting the prince of knitwear), " walk tall, walk straight and look the world right in the eye".
For these people, all life was sucked out of their bodies by the diagnosis. They sit quietly in a corner of God's waiting room waiting for their appointment. These are people who never get beyond the 'why me' question, people whose sense of victimisation by the illness gnaws at their being. These are people for whom wallowing in self-pity is the norm,
Misery attracts misery. The glums are never happier than when sharing their wealth of experience with a Parkinson's rookie, watching cannibalistically as they draw the life force out of their victim. Some don't even realise they're doing it. Others take some perverted comfort in dragging people down rather than lifting them up.
Parkinson's is like that. As a good friend of mine explained, the same thing that makes us frail also gives us power. The value of that experience is incalculable. Our narrative of the illness can be used for good or bad. We can do irreparable harm or inestimable good. We can become dementors or beacons. And these are not predetermined paths, the unalterable expression of Parkinson's on the human psyche.
These are choices. We have the capacity, when faced with Parkinson's, to avert our gaze and cower, beaten, in a corner. It's the soft option, passive and victimised. Or we can stand tall, stare this intruder in the eye and decide to do our best. Not just for ourselves, but also for others.
Parkinson's gives us that power. And it does so in direct proportion to our experience. The longer we have had Parkinson's, the more valuable and credible is our experience of the condition and the more sought-after is our opinion. That is power. But with that power comes responsibility. We can wield that strength for good or bad.
I've been lucky. Although my early experience of Parkinson's, and people with Parkinson's, was dispiriting, it was not terminally disabling. Among the many dementors, somehow I found, or was attracted to, people whose indomitable spirit fought back against the condition -- people who, as the condition took more and more from them, seemed to find more to give. People who would not submit to the condition but resisted with fearless determination. People who come from all walks of life -- a teacher from Tennessee, a surveyor from Hertfordshire, a boxer from Norfolk, a nurse from New Zealand and more.
Parkinson's is tough, certainly. It is, as Michael J Fox once memorably said 'the gift that keeps on taking'. It will make demands on you as it progresses and how you face those demands will say much about you as a person. I have been fortunate to have met people who, in the words of Val Doonican (and I can't quite believe that I am quoting the prince of knitwear), " walk tall, walk straight and look the world right in the eye".
Thursday, 7 May 2015
VOTE VOTE VOTE
This election is complicated by the additional presence of UKIP (United Kingdom Independence party). UKIP, for the benefit of overseas friends, is essentially a single issue party. Normally such a thing could be swiftly discounted but, such is the potency of that message to some socioeconomic strata, there is a realistic possibility, if the papers are to be believed, that they may hold the balance of power in a hung parliament. There is even the spectre, however remote, that they might be elected.
I suspect tonight will be an all nighter, watching as the results come in on the drama unfolds. Although we have never had proportional representation, the UK prides itself that its "first past the post" version of democracy allows for strong government and prevents electoral extremism. Today will be the toughest possible test of that tenet.
Although only a small island in northern Europe, the UK remains disproportionately influential on a world stage and we will not be deluding ourselves when we say that the eyes of the political world will be on us today. Our position in Europe and the world, indeed our credibility as a democratic country, is at stake. It is not melodramatic to say that the future of world democracy hangs in some way on the actions we, the voters, take today.
Today is the day for serious decisions. We have a responsibility to ourselves, our families and the family of nations to use our vote wisely. Whether we vote for the status quo, a step into the unknown or any point in between, we should do what we have to do with our heads held high. We may look back on today, either with hope or fear, as the day which changed the world. It's that important.
Thursday, 14 August 2014
A memorable road trip
In 1986, not long after I had received my Ph.D., I was working in Indiana as a postdoctoral student. During that summer, I was asked to present a lecture at the University of Kansas. For more reasons than one that turned out to be a memorable trip. Here's what I wrote about it a few years ago.
This account is taken from my first book SLICE OF LIFE, obtainable from Amazon. http://www.amazon.co.uk/Jon-Stamford/e/B00JBEPPY2/ref=sr_tc_2_0?qid=1408005163&sr=1-2-ent
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Two decades ago, I worked in Indiana, part of America’s almost mythical Midwest. Bloomington, a college town and home of the Hoosiers was little more than a small dab of green paint on a huge agricultural canvas. It was high summer and rain hadn’t fallen in nearly six months. Fields, normally, shoulder-high and plump with corn, were dry, bleached flats that stretched out to infinity. When the tractors weren’t shimmering in the heat on the open plains, they raised dusty swirls, twists and eddies that glided silently like spectral figures over the distant horizon. Television talked of The Dust Bowl, and those who lived through the 1930s spoke of the similarities and drew anxious parallels. This was the land of Steinbeck, of Tom Joad and the Grapes of Wrath.
Along with friends, I was invited to speak at a conference in Kansas, 500 miles away. We could have flown but chose to drive, in a rattling hired sedan without air conditioning, hour after soporific hour, on arrow-straight undulating roads strung with telegraph poles, the monotony broken only by occasional animal carcasses or rusted flatbeds, abandoned where they had fallen. "Welcome to nowhere" read the faded graffiti on one decaying Chevy. Through Vincennes, St Louis, Columbia and Independence, and on towards Lawrence on Interstate 70, we played away the hours with tapes of Tom Waits, as we gradually assumed the manners and personae of Kerouac, Cassady and Ginsberg. We left the interstate, with its honking horns, and set off on a two-lane blacktop. Apart from occasional trucks, we had the road to ourselves
Night fell swiftly in August on the summer plains and, as the stars filled that ink-black prairie sky, the fuel gauge gradually slipped into the red, and we thumbed the map for our location. Nowhere - just as the graffiti had said. As Joe tapped the fuel gauge, we reached another brow in the road. A flickering sign in the distance read "Food. Gas" with that laconic precision so prevalent throughout the plains states. As the car coughed, we pulled in to a tiny one-pump gas station. It felt like a step back in time. On the far side of the road was a chalk-white steer skull on a pole. While Joe fuelled the car, Lesley and I stretched our legs, the air still hot from the day. A man in faded overalls and a grease-stained baseball cap emerged from a tiny shack-shop of breeze blocks with a tin roof, kicking the dust as he walked. "Do you have food?" I asked. There was the long pause of a man used to spending his words carefully. "Got all you need there" he said, nodding to the shop "Annie Mae’ll help you"
A moth fluttered behind a dirty cracked window next to an antique Coke machine that groaned and burped as its refrigerator fought hopelessly against the heat. A small bell tinkled as I opened the door. Somewhere in the distance the long prairie wail of a goods train pierced the night’s silence. I picked Monterey Jack cheese, ham, sesame rolls and rootbeer and placed them on the cracked red Formica counter next to a small tarnished brass bell. As I reached for the bell, there was a rustle of the fly curtain at the back of the shop. "Hello" I called. "Be with you" said a girl’s voice. "Annie Mae?" I asked and she smiled, all freckles and dimples, as she totted up the groceries on the corner of a newspaper in her childish hand. She licked the pencil tip then pronounced "That be five dollars and forty three cents". She held up her open hand to signal ‘five’ and giggled. I saw she was missing a thumb. "Funny girl" I said. She laughed.
I realised my wallet was missing the moment I reached into my trousers and slapped my pockets in the reflex movements of a man unexpectedly penniless. "Vincennes" I said to myself, as I remembered leaving it on the counter of the Dairy Queen, where we had stopped for cones in the late afternoon. Five hours earlier and two hundred miles back on the Interstate. "I have money in the car" I said in explanation. "Back in a minute".
"Well we need to find a bank in the morning" said Lesley "cos I've just spent our last fifteen bucks on gas". Like royalty, Joe never carried money, always relying on Lesley. I explained about the ice cream parlour in Vincennes.
"Annie Mae, I have no money. I'm really sorry" I stuttered and began to put the groceries back. Even in the half light of the shop, my beetroot red face must have been obvious. "It's okay" she said "take the food. You can pay on your way back".
I protested. But Annie Mae would have none of it. "Just don't tell my pop" she winked. And giggled.
As we spluttered out onto the highway again and gathered speed, I told Joe and Lesley about Annie Mae and the food. "Real cute" said Lesley. "Real dumb" said Joe, sparking a row between the two.
We were in Lawrence for two days. Two days hot enough to fry eggs on the bonnet of the car. I did the lecture, with voice barely audible over the air conditioning, my slides buckling in the heat from the projector. I told the listeners of dopamine receptors and the nigrostriatal pathway, of dysregulation and dopamine transporters. Everything I knew about Parkinson’s (I used to be a neuroscientist, remember). There were questions too, mostly interested in why an Englishman was in Kansas. "Just following the Yellow Brick Road" I said until it wasn’t funny any more. I was shown around the labs, invited to dinner with the faculty members, and guest of honour at a lake party on a bright yellow pontoon boat where we ate slices of watermelon washed down with Coors from the cooler.
Thursday came, muffins and ham for breakfast and then on the road to Nowhere. Or wherever it was that we had stopped for gas and food on Monday night. On a two to one majority, we persuaded Joe to drive back to the garage and give Annie Mae her five dollars and forty three cents, all in shiny new coins. As Joe grumbled and muttered, we looked out for the garage. Mile after mile of dusty emptiness.
Then I saw the cattle skull. We pulled over and I picked up the envelope with the money. The garage looked different. They must have replaced the aged single pump. Two fancy new Texaco pumps stood there.
I looked around. Where was the shop? The breezeblock hut was nowhere. Instead a small glass fronted shop with plastic fittings occupied the space. A middle-aged man emerged. "Need gas?" he asked. "No" I said "I need to give some money to the girl".
He screwed up his eyes. "What girl? Ain’t no girl here".
"Annie Mae" I said "Freckles? Missing a thumb".
He looked down and flicked some cigarette ash off his overalls. "She's not here" he said quietly. A long pause. "She’ll come around sometimes. When there are strangers mostly".
I waited a moment, but no further explanation was forthcoming. "So where is she now?" I asked.
He nodded in the direction of the corn field opposite. "She bin in the field some twenty years now". His voice faltered. "Buried her there the night her pop brought her in, knocked down by a truck. Folks left their food behind so she ran across the road after them. She was kind like that. Always looking to help. Buried her pop a week later. Wouldn't eat or drink. His little angel she was. Called her Angel Annie somedays".
My mouth was dry and, although he kept talking, I heard nothing else he said as I crossed the road into the field, the corn rustling in the dusty breeze. I reached into my envelope for the five dollars and forty three cents. Shiny new coins glinting in the sun. With a bellow that echoed off the distant grain elevators, I hurled them as far as I could and stood for a moment listening to their pitter patter as they fell among the corn. I turned back towards the car.
Tuesday, 8 July 2014
Opening the vault
As many of you know, SLICE OF LIFE ceased to be an active, regularly updated blog in March 2014. Nonetheless many of you have generously said that you enjoyed it and want to reread it.
There are essentially two options. The first is to buy the books. More than four years of blog can be found in the books on the left. In order of publication (and chronological order), they are SLICE OF LIFE, COMING TO TERMS, A PIECE OF MY MIND and finally HEADS OR TALES. The books are available direct from the publisher (www.lulu.com) or from Amazon. They cost around £10 each and, if it helps you to decide, half of the royalties go to The Cure Parkinson's Trust, a charity devoted to finding a cure for this illness.
But for many, dipping into the blog is all you want. And with that in mind, I have decided to publish a random blog from the archive each week. Depending on time and suchlike, I may update each posting with new information, comments, jokes or whatever springs to mind. If nothing else, they will be a nostalgic ramble through past moments. And although Slice of Life is essentially retired, just to keep you on your toes, I might even slip in the occasional new posting.
Does that sound like a plan?
There are essentially two options. The first is to buy the books. More than four years of blog can be found in the books on the left. In order of publication (and chronological order), they are SLICE OF LIFE, COMING TO TERMS, A PIECE OF MY MIND and finally HEADS OR TALES. The books are available direct from the publisher (www.lulu.com) or from Amazon. They cost around £10 each and, if it helps you to decide, half of the royalties go to The Cure Parkinson's Trust, a charity devoted to finding a cure for this illness.
But for many, dipping into the blog is all you want. And with that in mind, I have decided to publish a random blog from the archive each week. Depending on time and suchlike, I may update each posting with new information, comments, jokes or whatever springs to mind. If nothing else, they will be a nostalgic ramble through past moments. And although Slice of Life is essentially retired, just to keep you on your toes, I might even slip in the occasional new posting.
Does that sound like a plan?
Monday, 17 March 2014
So long
When I started writing Slice of Life, I never seriously imagined that I would write as many words as I have. Nor indeed that anyone would wish to read them. It was intended as a bit of fun, a writing exercise in part, and a way of coming to terms with a life that was to be changed by Parkinson's.
I resolved from the first that this would not be a detailed medical appraisal of life with Parkinson's. Nor would it chart family life in isolation from the condition. I intended it to be a reflection of my way of dealing with these things, light-hearted and positive. And for the most part I would like to think that I have succeeded in those objectives. I don't believe in dwelling on those things that one cannot change. I do believe in channelling one's energies into those arenas where an impact can be made.
A lot has changed in the five years since I started writing. In 2009, Catherine and Alice were teenagers, getting to grips with GCSEs and A-levels. Family life was boisterous and brash, Hogarthian almost. Mealtimes were rowdy and stimulating as everyone chattered about their day. Problems were aired, solved and softened. The house was littered with musical instruments, cricket bats, homework and clothes. Bedlam.
And my Parkinson's, barely two years post diagnosis and no more than an irritating tremor, barely impinged. We joked about spaghetti and soup, shaking cocktails and so on. We knew all the jokes and in many ways, it was little more than a joke.
I was Dad. Shaky Dad I grant you. But still untouched by the illness.
But that's the thing with Parkinson's. It's like grandmother's footsteps. You turn your back for a fraction of a second and, in a thousand little ways, it creeps up on you. You can't turn your back for a minute. But if you don't turn your back on the illness, you find yourself turning your back on life. The desire to fight the illness becomes all-consuming. The desire to resist each new symptom, each new advance of the frontline, takes over your life. Not overnight. But gradually and by degrees.
Fighting Parkinson's is a war. Keeping the family together is another. We shouldn't be surprised that this battlefield is littered with casualties. Over the seven years since I was diagnosed with Parkinson's, I have met wonderful people -- good men and true -- destroyed by an inability to fight on two fronts. I have seen people keep symptoms at bay only at the expense of the destruction of their families. I have seen men walk away from their families, unable to share the journey any more. And there are others who remain doting fathers and loyal husbands to their families, who sob themselves to sleep at night, dropping the mask only when alone.
The drugs don't help. Well, of course, they do. Before the advent of levodopa, there was next to nothing to treat Parkinson's. From diagnosis to death took around five years. If I had been born into the world 50 years earlier, and diagnosed in 1956, it would have been a different story. There would have been no blog to read. I would have lost the ability to write by 1958. I would not be able to feed myself by 1960. And in 1961, as the Beatles played at the Cavern Club, you would have laid me in my grave. I would not have seen my children grow up. I would not have seen them leave home. And their enduring memories of their father would have been a frozen, bedridden, hospitalised skeleton unable to feed himself. Not much of a legacy.
So yes, the drugs do help. I am alive today because they help. But there is a price to pay. Sure, I can still walk. Sometimes even run. And I can still feed myself. In fact, on the basis of my expanding girth, this is an area I have completely bossed. And my tremors are not yet disabling. All things considered, I am fighting the good fight against the Parkinson's. I have a lot to be thankful for. And believe me, I am truly thankful. In some ways, the blog and the books are my way of saying how thankful I am.
But sometimes Parkinson's takes you to places you don't want to go. It can make you into another person. Someone you don't recognise. Somebody you don't even like. It may even be a coping mechanism, a way of living with the illness, for all I know.
For the last five years, I have chronicled my life with Parkinson's. I have tried to be honest about the impact it has on my family. Time moves on, the illness moves on and, in many ways, the family moves on. The girls have now left home and Alex is absorbed with everything that being a 16-year-old boy entails. Mealtimes are quiet. He misses his sisters. I miss my daughters.
And I sometimes feel that I have spent so much time writing about family life that I have become an observer rather than a participant. Perhaps, in chronicling life, I have become detached from it. Will my children look back on this time and wonder who the imposter pretending to be Dad actually was. Seven years ago, fighting Parkinson's was my battle. And the blog was part of that battle.
Today things are different. I need to push the Parkinson's aside as much as I can. And that means that I need to stop writing about it. It's enough that I work in the field from nine till five. It needs to be held in perspective.
A year or so ago, Catherine made a remark.
"I like reading the blog, Dad. It's the only way I know what you're doing and thinking".
I laughed at the time. But it doesn't seem so funny now.
Thank you for reading this blog over the last five years. It won't be easy but it's time to put down the pen. My children deserve their father back.
I resolved from the first that this would not be a detailed medical appraisal of life with Parkinson's. Nor would it chart family life in isolation from the condition. I intended it to be a reflection of my way of dealing with these things, light-hearted and positive. And for the most part I would like to think that I have succeeded in those objectives. I don't believe in dwelling on those things that one cannot change. I do believe in channelling one's energies into those arenas where an impact can be made.
A lot has changed in the five years since I started writing. In 2009, Catherine and Alice were teenagers, getting to grips with GCSEs and A-levels. Family life was boisterous and brash, Hogarthian almost. Mealtimes were rowdy and stimulating as everyone chattered about their day. Problems were aired, solved and softened. The house was littered with musical instruments, cricket bats, homework and clothes. Bedlam.
And my Parkinson's, barely two years post diagnosis and no more than an irritating tremor, barely impinged. We joked about spaghetti and soup, shaking cocktails and so on. We knew all the jokes and in many ways, it was little more than a joke.
I was Dad. Shaky Dad I grant you. But still untouched by the illness.
But that's the thing with Parkinson's. It's like grandmother's footsteps. You turn your back for a fraction of a second and, in a thousand little ways, it creeps up on you. You can't turn your back for a minute. But if you don't turn your back on the illness, you find yourself turning your back on life. The desire to fight the illness becomes all-consuming. The desire to resist each new symptom, each new advance of the frontline, takes over your life. Not overnight. But gradually and by degrees.
Fighting Parkinson's is a war. Keeping the family together is another. We shouldn't be surprised that this battlefield is littered with casualties. Over the seven years since I was diagnosed with Parkinson's, I have met wonderful people -- good men and true -- destroyed by an inability to fight on two fronts. I have seen people keep symptoms at bay only at the expense of the destruction of their families. I have seen men walk away from their families, unable to share the journey any more. And there are others who remain doting fathers and loyal husbands to their families, who sob themselves to sleep at night, dropping the mask only when alone.
The drugs don't help. Well, of course, they do. Before the advent of levodopa, there was next to nothing to treat Parkinson's. From diagnosis to death took around five years. If I had been born into the world 50 years earlier, and diagnosed in 1956, it would have been a different story. There would have been no blog to read. I would have lost the ability to write by 1958. I would not be able to feed myself by 1960. And in 1961, as the Beatles played at the Cavern Club, you would have laid me in my grave. I would not have seen my children grow up. I would not have seen them leave home. And their enduring memories of their father would have been a frozen, bedridden, hospitalised skeleton unable to feed himself. Not much of a legacy.
So yes, the drugs do help. I am alive today because they help. But there is a price to pay. Sure, I can still walk. Sometimes even run. And I can still feed myself. In fact, on the basis of my expanding girth, this is an area I have completely bossed. And my tremors are not yet disabling. All things considered, I am fighting the good fight against the Parkinson's. I have a lot to be thankful for. And believe me, I am truly thankful. In some ways, the blog and the books are my way of saying how thankful I am.
But sometimes Parkinson's takes you to places you don't want to go. It can make you into another person. Someone you don't recognise. Somebody you don't even like. It may even be a coping mechanism, a way of living with the illness, for all I know.
For the last five years, I have chronicled my life with Parkinson's. I have tried to be honest about the impact it has on my family. Time moves on, the illness moves on and, in many ways, the family moves on. The girls have now left home and Alex is absorbed with everything that being a 16-year-old boy entails. Mealtimes are quiet. He misses his sisters. I miss my daughters.
And I sometimes feel that I have spent so much time writing about family life that I have become an observer rather than a participant. Perhaps, in chronicling life, I have become detached from it. Will my children look back on this time and wonder who the imposter pretending to be Dad actually was. Seven years ago, fighting Parkinson's was my battle. And the blog was part of that battle.
Today things are different. I need to push the Parkinson's aside as much as I can. And that means that I need to stop writing about it. It's enough that I work in the field from nine till five. It needs to be held in perspective.
A year or so ago, Catherine made a remark.
"I like reading the blog, Dad. It's the only way I know what you're doing and thinking".
I laughed at the time. But it doesn't seem so funny now.
Thank you for reading this blog over the last five years. It won't be easy but it's time to put down the pen. My children deserve their father back.
Thursday, 6 March 2014
Preston goes nuclear!
I'm not in the habit of commenting on the news but every once in awhile there is a news item so extraordinary that it simply cannot be ignored. And in the news this week is the story of Jamie Edwards's school science project. Not for Jamie the usual schoolboy trivia. No seed trays full of germinating broad beans. No circuit boards with lightbulbs and buzzers.
Jamie has chosen to try and build a nuclear reactor.
This is the kind of ambition that school teachers in my day used to reward with a gold star or a clip around the ears depending on their perception of the schoolboy's intent. Honest ambition, however misplaced, was laudable. A desire to belittle the syllabus with facetious and time wasting plundering of the equipment stores was treated equally decisively. Evidently Jamie's teachers concluded the former. I'm sure they even had their words ready to praise the valiant attempt. All well and good except for one tiny detail.
He succeeded.
Jamie Edwards has has built a nuclear reactor.
That's right -- nuclear reactor as in Sellafield. Something that creates new isotopes and releases energy. Evidently Jamie Edwards is not the kind of lad who wastes time fiddling around with magnets and iron filings in double science, or sending smutty texts to Katrina Biggs in 5C. No, he is clearly made of different stuff. And I don't want to prejudge matters but I'm going to stick my neck out here and say that I'm pretty certain he is on for an A* in his GCSEs. It's going to be pretty brave examiner who picks him up on spelling.
And I wouldn't want to be Frankie Barton who once held his head down the toilet before games. After all, it's not every day that you wake up to find your victim is now a global nuclear superpower. By any standards of bullying, that is an epic fail.
Mum: How was school today?
Jamie: Good. we made a nuclear reactor.
Mum: That's nice dear. Did you remember to hand in your geography?
Jamie: We made a nuclear reactor, Mum
Mum: And did you have to do detention again?
Jamie: We made a nuclear reactor. Lots of journalists came.
Mum: Well I hope you remembered your pleases and thankyous. It's pizza for tea.
Jamie: Do you know what a nuclear reactor is, Mum?
Mum: Is it one of those things Mrs Treadwell had for getting rid of moles in the garden?
Jamie: No Mum, it's a way of producing energy. A lot of energy.
Mum: Well if it helps you get you out of bed in the morning, that's good. Oh and somebody called Cameron phoned for you thisorning. Didn't say what he wanted. I expect he is one of those Social Security snoopers.
The nuclear reactor itself is, you will be interested to hear, the size of a lunchbox. In fact it's exactly the size of a lunchbox. To all intents and purposes, it is a lunchbox. And I don't know whether to find out comforting or alarming. Comforting in the sense that it is less likely to cause the next Harrisburg, Chernobyl or Fukuhima. Or alarming that so much power can be found in something so small.
You can imagine Mr Curry, the science master, conducting his risk assessment before they started the project. Safety spectacles -- check, lab coat -- check, notebook -- check, pencils and Biro -- check, fire extinguisher -- check, 3 m thickness lead enclosure -- oops, environmental radiation monitoring -- oops again. Oh never mind, tell the prefects to lock the lab door. And don't let 3C eat their sandwiches in there.
It's all very well putting Preston on the map. But I can't help thinking that, in the wrong hands, it could very well have taken Preston off the map.
I don't want to be a wet blanket but I can't help feeling that there are few Health and Safety issues here. The school's manual has plenty to say about bullying, nits, and drugs but is decidedly light on advice for safe management of nuclear power stations. It doesn't come up that often. And probably not issues that are covered by the standard manual.
As for Jamie, he's already thinking toward A-levels. His next project is a hadron collider. He's begun collecting empty baked bean tins.
And you wouldn't bet against him. After all, it's not every 13-year-old boy who has President Obama on Snap Chat.
Jamie has chosen to try and build a nuclear reactor.
This is the kind of ambition that school teachers in my day used to reward with a gold star or a clip around the ears depending on their perception of the schoolboy's intent. Honest ambition, however misplaced, was laudable. A desire to belittle the syllabus with facetious and time wasting plundering of the equipment stores was treated equally decisively. Evidently Jamie's teachers concluded the former. I'm sure they even had their words ready to praise the valiant attempt. All well and good except for one tiny detail.
He succeeded.
Jamie Edwards has has built a nuclear reactor.
That's right -- nuclear reactor as in Sellafield. Something that creates new isotopes and releases energy. Evidently Jamie Edwards is not the kind of lad who wastes time fiddling around with magnets and iron filings in double science, or sending smutty texts to Katrina Biggs in 5C. No, he is clearly made of different stuff. And I don't want to prejudge matters but I'm going to stick my neck out here and say that I'm pretty certain he is on for an A* in his GCSEs. It's going to be pretty brave examiner who picks him up on spelling.
And I wouldn't want to be Frankie Barton who once held his head down the toilet before games. After all, it's not every day that you wake up to find your victim is now a global nuclear superpower. By any standards of bullying, that is an epic fail.
Mum: How was school today?
Jamie: Good. we made a nuclear reactor.
Mum: That's nice dear. Did you remember to hand in your geography?
Jamie: We made a nuclear reactor, Mum
Mum: And did you have to do detention again?
Jamie: We made a nuclear reactor. Lots of journalists came.
Mum: Well I hope you remembered your pleases and thankyous. It's pizza for tea.
Jamie: Do you know what a nuclear reactor is, Mum?
Mum: Is it one of those things Mrs Treadwell had for getting rid of moles in the garden?
Jamie: No Mum, it's a way of producing energy. A lot of energy.
Mum: Well if it helps you get you out of bed in the morning, that's good. Oh and somebody called Cameron phoned for you thisorning. Didn't say what he wanted. I expect he is one of those Social Security snoopers.
The nuclear reactor itself is, you will be interested to hear, the size of a lunchbox. In fact it's exactly the size of a lunchbox. To all intents and purposes, it is a lunchbox. And I don't know whether to find out comforting or alarming. Comforting in the sense that it is less likely to cause the next Harrisburg, Chernobyl or Fukuhima. Or alarming that so much power can be found in something so small.
You can imagine Mr Curry, the science master, conducting his risk assessment before they started the project. Safety spectacles -- check, lab coat -- check, notebook -- check, pencils and Biro -- check, fire extinguisher -- check, 3 m thickness lead enclosure -- oops, environmental radiation monitoring -- oops again. Oh never mind, tell the prefects to lock the lab door. And don't let 3C eat their sandwiches in there.
It's all very well putting Preston on the map. But I can't help thinking that, in the wrong hands, it could very well have taken Preston off the map.
I don't want to be a wet blanket but I can't help feeling that there are few Health and Safety issues here. The school's manual has plenty to say about bullying, nits, and drugs but is decidedly light on advice for safe management of nuclear power stations. It doesn't come up that often. And probably not issues that are covered by the standard manual.
As for Jamie, he's already thinking toward A-levels. His next project is a hadron collider. He's begun collecting empty baked bean tins.
And you wouldn't bet against him. After all, it's not every 13-year-old boy who has President Obama on Snap Chat.
Sunday, 2 March 2014
Personality Test
On the whole, I'm not someone who fills out magazine quizzes and questionaires designed to provide glib psychological profiles. These kind of things, far from being validated job recruitment tools, are closer to horoscopes. They paint in a broad brushstrokes. Beyond confirming that you are not an axe-wielding psychopath any more than the imminent tall dark stranger, so popular with horoscope writers. Although they fall short of telling me that it is the age of Aquarius, or that Jupiter is aligned with Mars, their credibility is on a par with these astrological cliches. I don't want to labour the point, but it's a short step from here to the divination of character by ink blots, tea leaves or chicken entrails. And one could argue a case for the chicken guts because you would at least have a decent casserole at the end of the day of interviewing.
Anyway, against my better judgement, I completed one of these pieces of cappuccino psychobabble, brought to my attention by Facebook. Twenty multiple choice questions and the questionnaire would spit out a two word stereotype.
It will surprise nobody to learn that I am a "Dreamy Idealist". The report put flesh on these bones with the reassurance that this was "one of the introverted personality types".
You don't say.
In an effort to further expand the stereotype, I learned that I "prefer a quiet work environment, free from repeated distractions". So the circus clowns, wild animals and dancing girls who would normally fill my home office have to go then?
Apparently, the report goes on, I am "grateful for a certain measure of order and structure" and my "capability to concentrate is unusually great", which seems to stand at odds with my need for a quiet work environment. If my concentration is that brilliant, couldn't the dancing girls stay?
I am apparently a man of paradoxes. I need peace and solitude yet also enjoy working together with others. Come on guys -- pick one. Either I am a misanthropic loner or a happy-go-lucky team player. But then Mr Happy-Go-Lucky would not "take critique and negative feedback very personally". That response would sit more naturally with Mr Misanthropic Loner, plugging bullets into the clip of an AK-47.
It also turns out that I "enjoy the opportunity for exchanges with other people". Exchanges as in exchanges of fire perhaps? And apparently my notion of teamwork is "a few hand picked colleagues who truly move on your wavelength". This sounds less like an ideal office environment than the formula for a terrorist cell. My suspicions are further raised in line or two later when the report concludes that "It is best when you share the same high ideals and important objectives and together can fight for the same good cause". Maybe it's just me but there is something about the combination of high ideals and social misfits that makes me uneasy.
Yet amazingly, and despite the many glaring paradoxes, this is the kind of profile that companies increasingly use to try and match applicants to jobs. And for that matter, it is intended also to provide the profilee with some indication of those employment options to which they are best suited. Adrenaline fuelled, power crazed yuppies are likely to make poor librarians for instance. And so on. But it's hardly an exact science -- or science at all really. You might as well use ink blots.
Thinking of ink blots takes me back 40 years to my school and, at that time a fairly decent traditional boys boarding school education. Unfortunately, tradition still substituted for intelligent career guidance. For generations, a third of the sixth form each year had gone to Oxford or Cambridge, another third to "other" universities and the remainder were mopped up by Sandhurst. In the face of this rigid progression, careers advice at my school was predictably lamentable.
My best subjects were languages. The careers master suggested employment in the Foreign Office would be appropriate. Sensing my disinterest, he volunteered, with a note of weary resignation, that there ws always teaching. Even with my detailed psychological profile at his disposal, I doubt if he would have come up with anything more intelligent in the way of advice. In some way I had to be made to pay for decades of his own thwarted ambitions.
Tuesday, 25 February 2014
Toasters
Some 40 years ago, my parents, in an almost unprecedentedly impulsive purchase, acquired one of the early Goblin Teasmades. They reasoned that ... well, to be honest, I don't know what they reasoned, because they were never truly happy with it. According to the blurb, the device would brew a cup of tea and then wake you through its alarm clock. In actual fact it did little more than splutter boiling water in the face of my sleeping parents while simultaneously making a sort of intestinal bubbling sound at the volume of a space shuttle launch. The alarm clock component of the device was entirely redundant. Firstly you couldn't hear it above the sound of the tea maker, and secondly, my parents were already awake, often applying flannels to scalded areas of the face.
All of which technological ineptitude was surprising. Mankind had just put a man on the moon. How difficult, by comparison, could it possibly be to make a cup of tea?
My father, born of good Yorkshire stock, has never been prone to impulse purchases. He believes now, and believed even more then, in the value of taking your time over decision-making. We were the last house in Doncaster to have colour television. And it is only in the last year, with my father in his 80s, that he has tentatively enquired about computers. Back in the 1970s, my father was in his pomp. When it came to buying white goods, he would ensure that he knew the price of every comparable refrigerator within a five-mile radius. Armed with this information, he would then stride into Currys to buy the product in question at the price he had mentally set. The conclusion was foregone, and experienced salesmen usually capitulated immediately rather than face a negotiating style that, to this day, I believe was the model for Darth Vader.
Not surprisingly then, the Teasmade was a memorable blot on his copy book.
My attitude to purchasing household goods has strong elements of my father's thoroughness and sense of value (Yorkshire genes are of course dominant), but is executed more rapidly thanks to Google. The same diligent research, of which my father would be proud, can now be conducted in minutes rather than weeks, giving it a somewhat impetuous, nay impulsive, air.
And I'm constantly surprised at the range of prices available for consumer items. Take photography for instance. As broad a church as there is. Everything from the happy snappy through to the career professional. A camera can cost £10 or £10,000. And it's understandable -- these are fancy bits of kit. The same goes for hi-fi. All perfectly plausible for state-of-the-art electronics.
But what about simpler products. Say a toaster.
The cheapest toaster I could find (made by a company called Lloytron -- and no, I've never heard of them) cost £11.34 and was available in a choice of three colours. For this price, the toaster featured a seven stage variable control and a "midcycle cancel button" although I imagine unplugging it would achieve much the same. There is also a slide out crumb tray. So, not perhaps the most sophisticated device on earth but then all it has to do is make toast.
And it's hard to see how the process could be made more sophisticated or more expensive. After all, a device that (a) makes toast and (b) allows you to make it to your preference would appear to achieve somewhere between 99% and 100% of the functionality required of a toaster.
Apparently not.
At the opposite end of the price range, and representing the aristocracy of toast making is a roller toaster made by Paderno (nope, I've never heard of them either). I've no idea what a roller toaster is although, with a pricetag of £1818.13, it costs about as much as a Roller. And yes, that is not a typo. It really is possible to spend the best part of two grand on a toaster.
Now I don't want to be a curmudgeon but I would take quite a bit of persuading to buy the Paderno. For that price I could have 160 Lloytron toasters, enough to cater for an army of toast eaters. Or I could have a brand-new toaster every week for more than three years. And I can't even compare the specification. Nowhere on the Internet is there a single review of this toast making colossus. Not a single person is prepared to tell me why a machine which costs as much as 36,000 slices of bread is an essential addition to my kitchen.
Perhaps I'm barking up the wrong tree with the toaster. Let's simplify things further -- how about the electric kettle? There isn't even a need to vary the temperature here. All it has to do is boil water. Nothing fancier than that.
At the bottom of the price range, checking in at a mere £12.95 is a cordless white jug kettle made by Elgento (yet another make I have never heard of). It boils water. It switches off. That's it. And at the other end of the Amazon price spectrum is a cordless jug kettle from an unspecified manufacturer, weighing in at a staggering £318.75. It too boils water and switches off. And if you've recovered from that surprise, believe me when I say that one of the reviews on Amazon even went so far as to say that this was a "great value for money product". If it was made of platinum, perhaps.
Heaven help any man who tried to sell my father a £300 kettle.
All of which technological ineptitude was surprising. Mankind had just put a man on the moon. How difficult, by comparison, could it possibly be to make a cup of tea?
My father, born of good Yorkshire stock, has never been prone to impulse purchases. He believes now, and believed even more then, in the value of taking your time over decision-making. We were the last house in Doncaster to have colour television. And it is only in the last year, with my father in his 80s, that he has tentatively enquired about computers. Back in the 1970s, my father was in his pomp. When it came to buying white goods, he would ensure that he knew the price of every comparable refrigerator within a five-mile radius. Armed with this information, he would then stride into Currys to buy the product in question at the price he had mentally set. The conclusion was foregone, and experienced salesmen usually capitulated immediately rather than face a negotiating style that, to this day, I believe was the model for Darth Vader.
Not surprisingly then, the Teasmade was a memorable blot on his copy book.
My attitude to purchasing household goods has strong elements of my father's thoroughness and sense of value (Yorkshire genes are of course dominant), but is executed more rapidly thanks to Google. The same diligent research, of which my father would be proud, can now be conducted in minutes rather than weeks, giving it a somewhat impetuous, nay impulsive, air.
And I'm constantly surprised at the range of prices available for consumer items. Take photography for instance. As broad a church as there is. Everything from the happy snappy through to the career professional. A camera can cost £10 or £10,000. And it's understandable -- these are fancy bits of kit. The same goes for hi-fi. All perfectly plausible for state-of-the-art electronics.
But what about simpler products. Say a toaster.
The cheapest toaster I could find (made by a company called Lloytron -- and no, I've never heard of them) cost £11.34 and was available in a choice of three colours. For this price, the toaster featured a seven stage variable control and a "midcycle cancel button" although I imagine unplugging it would achieve much the same. There is also a slide out crumb tray. So, not perhaps the most sophisticated device on earth but then all it has to do is make toast.
And it's hard to see how the process could be made more sophisticated or more expensive. After all, a device that (a) makes toast and (b) allows you to make it to your preference would appear to achieve somewhere between 99% and 100% of the functionality required of a toaster.
Apparently not.
At the opposite end of the price range, and representing the aristocracy of toast making is a roller toaster made by Paderno (nope, I've never heard of them either). I've no idea what a roller toaster is although, with a pricetag of £1818.13, it costs about as much as a Roller. And yes, that is not a typo. It really is possible to spend the best part of two grand on a toaster.
Now I don't want to be a curmudgeon but I would take quite a bit of persuading to buy the Paderno. For that price I could have 160 Lloytron toasters, enough to cater for an army of toast eaters. Or I could have a brand-new toaster every week for more than three years. And I can't even compare the specification. Nowhere on the Internet is there a single review of this toast making colossus. Not a single person is prepared to tell me why a machine which costs as much as 36,000 slices of bread is an essential addition to my kitchen.
Perhaps I'm barking up the wrong tree with the toaster. Let's simplify things further -- how about the electric kettle? There isn't even a need to vary the temperature here. All it has to do is boil water. Nothing fancier than that.
At the bottom of the price range, checking in at a mere £12.95 is a cordless white jug kettle made by Elgento (yet another make I have never heard of). It boils water. It switches off. That's it. And at the other end of the Amazon price spectrum is a cordless jug kettle from an unspecified manufacturer, weighing in at a staggering £318.75. It too boils water and switches off. And if you've recovered from that surprise, believe me when I say that one of the reviews on Amazon even went so far as to say that this was a "great value for money product". If it was made of platinum, perhaps.
Heaven help any man who tried to sell my father a £300 kettle.
Thursday, 20 February 2014
Called home
I've said it before, perhaps not in so many words, but there is something special about having Parkinson's. And it has nothing to do with the manifold indignities of the condition itself, its capacity to test everything you hold dear to destruction, or its shameless pickpocketing of your mental and physical abilities. No, these are merely the price you pay to be a part of what you might almost considered to be, in Parkinson's terms, the rapture.
I have long held the view that life has a habit of equalising happiness and sadness, pleasure and pain, joy and despair. And for everything this hateful condition has taken away from me, it has given me recompense in that most valuable currency of all -- friendship.
I have made friends that I know will stay with me for the rest of my life. Who are they? They come from far and wide -- from Berwick, Stockholm, Hexham, Australia, Texas, Vancouver, Norfolk, Tennessee, Arizona, New England, Pennsylvania, Manchester, North London, Sri Lanka, Hungary, Gravesend, Sarratt, Pewsey, Malaysia and beyond. They are the Viking, the Angel of the North, the Southern Belle, Lola, The Butcher, the Walker, the Battler and more.
They are the network for my survival, just as I hope I may be part of theirs. They brighten my day and sing me to sleep at night. We are the children of the night and daytime sprites. We tell each other the truths we need to hear and the lies we hope to hear. We watch each other's backs and walk in each others footsteps. We build sand castles on that Parkinson's beach and watch as, one by one, the sea takes them from us. We dry each others' tears and mop each other's brows. We chase away each others' fears and share each other's joy. We bandage each other's wounds.
We are a family. We bicker, we squabble, we hug, we treasure. Some think, some act, some talk, some listen. We all share. And we all dream.
We dream of the day when we'll be delivered from this pestilence. The day when our sandcastles are not lost to the tide. The day when we will stand on that beach, and hold hands, our eyes screwed tight against the sunset and feel the warmth of the sun on our faces. That day when we will wash our hands clean of every word we wrote, every trial we endured, every step we took to bring us to this place. The day when we are called home.
People with Parkinson's are lucky. We have two families. We are blessed.
I have long held the view that life has a habit of equalising happiness and sadness, pleasure and pain, joy and despair. And for everything this hateful condition has taken away from me, it has given me recompense in that most valuable currency of all -- friendship.
I have made friends that I know will stay with me for the rest of my life. Who are they? They come from far and wide -- from Berwick, Stockholm, Hexham, Australia, Texas, Vancouver, Norfolk, Tennessee, Arizona, New England, Pennsylvania, Manchester, North London, Sri Lanka, Hungary, Gravesend, Sarratt, Pewsey, Malaysia and beyond. They are the Viking, the Angel of the North, the Southern Belle, Lola, The Butcher, the Walker, the Battler and more.
They are the network for my survival, just as I hope I may be part of theirs. They brighten my day and sing me to sleep at night. We are the children of the night and daytime sprites. We tell each other the truths we need to hear and the lies we hope to hear. We watch each other's backs and walk in each others footsteps. We build sand castles on that Parkinson's beach and watch as, one by one, the sea takes them from us. We dry each others' tears and mop each other's brows. We chase away each others' fears and share each other's joy. We bandage each other's wounds.
We are a family. We bicker, we squabble, we hug, we treasure. Some think, some act, some talk, some listen. We all share. And we all dream.
We dream of the day when we'll be delivered from this pestilence. The day when our sandcastles are not lost to the tide. The day when we will stand on that beach, and hold hands, our eyes screwed tight against the sunset and feel the warmth of the sun on our faces. That day when we will wash our hands clean of every word we wrote, every trial we endured, every step we took to bring us to this place. The day when we are called home.
People with Parkinson's are lucky. We have two families. We are blessed.
Tuesday, 18 February 2014
That sinking feeling
For a long time it was alien abduction that exercised my half-waking hours. One minute I would be queueing in the '10 items or less' aisle with this week's Exchange and Mart and a bag of fun size Mars bars. I blink and suddenly I'm surrounded by funny little blue people with their brains on the outside talking to me, all squiggeldy bloop, while attaching jump leads to my nipples and prodding pipe cleaners into parts untouched by daylight. Typically this is where I wake up. Or wet myself.
And in any case, it should be "10 items or fewer". That's basic stuff. Even Martians know that.
Recently the focus of my daymares has shifted. And whilst I don't wish to downplay the alien menace, my current worry is sinkholes. You know the kind of thing -- huge, house size holes in the Earth's crust that appear spontaneously and swallow your car, caravan or dinghy. Or worse still, your house. You may be sat on the toilet with the Sunday Times crossword when suddenly half your house detaches itself and tumbles towards the Earth's core leaving you waving to the neighbours across the abyss and wondering if it took the refrigerator.
Now I know that this is statistically less likely than being struck by lightning or being gored by wild boar, but that's not the point. It's rather like being told on a flight that only one plane in every hundred thousand crashes. Frankly I don't care about the other 99,999 planes. I only care about this one. And if there have already been 99,999 flights without incident, obviously a crash is overdue.
Again, my head knows that statistics don't work like that. But it still didn't stop me thinking about alien abductions and giving funny looking kids with big heads and blue T-shirts a wide berth.
Wikipedia, that source of unquestionable online authority, tells us that common factors in many sinkholes are the presence of underground aquifers combined with persistent torrential rainfall. Certainly that was the case in the 2010 Guatamala City sinkhole, 20 m wide and 100 m deep, which swallowed a three story office block. And if you have never seen a picture of a sinkhole, look that one up on Wikipedia.
All this would be of little more than academic interest to me, were it not for two niggling facts.
Firstly, we live in a spa town and, without detailing my precise address, suffice it to say that the name of our street has a decidedly aquatic ring to it -- River Road, Aqua Avenue, Tsunami Street, Monsoon Mews. That sort of thing. I also know for a fact that a freshwater spring emerges from the ground less than 100 yards from our front door. Underground aquifers -- tick.
All we need now is persistent torrential rainfall.
Oh, well I guess we can tick that box as well, as we face the wettest December, January and February on record.
Suddenly, we are, in a very real sense, potentially staring into the abyss. To be honest, I was a lot happier worrying about the little blue guys and their electrodes than the possibility that our ground floor might become Ground Zero.
And to think that I was going to recarpet this year.
And in any case, it should be "10 items or fewer". That's basic stuff. Even Martians know that.
Recently the focus of my daymares has shifted. And whilst I don't wish to downplay the alien menace, my current worry is sinkholes. You know the kind of thing -- huge, house size holes in the Earth's crust that appear spontaneously and swallow your car, caravan or dinghy. Or worse still, your house. You may be sat on the toilet with the Sunday Times crossword when suddenly half your house detaches itself and tumbles towards the Earth's core leaving you waving to the neighbours across the abyss and wondering if it took the refrigerator.
Now I know that this is statistically less likely than being struck by lightning or being gored by wild boar, but that's not the point. It's rather like being told on a flight that only one plane in every hundred thousand crashes. Frankly I don't care about the other 99,999 planes. I only care about this one. And if there have already been 99,999 flights without incident, obviously a crash is overdue.
Again, my head knows that statistics don't work like that. But it still didn't stop me thinking about alien abductions and giving funny looking kids with big heads and blue T-shirts a wide berth.
Wikipedia, that source of unquestionable online authority, tells us that common factors in many sinkholes are the presence of underground aquifers combined with persistent torrential rainfall. Certainly that was the case in the 2010 Guatamala City sinkhole, 20 m wide and 100 m deep, which swallowed a three story office block. And if you have never seen a picture of a sinkhole, look that one up on Wikipedia.
All this would be of little more than academic interest to me, were it not for two niggling facts.
Firstly, we live in a spa town and, without detailing my precise address, suffice it to say that the name of our street has a decidedly aquatic ring to it -- River Road, Aqua Avenue, Tsunami Street, Monsoon Mews. That sort of thing. I also know for a fact that a freshwater spring emerges from the ground less than 100 yards from our front door. Underground aquifers -- tick.
All we need now is persistent torrential rainfall.
Oh, well I guess we can tick that box as well, as we face the wettest December, January and February on record.
Suddenly, we are, in a very real sense, potentially staring into the abyss. To be honest, I was a lot happier worrying about the little blue guys and their electrodes than the possibility that our ground floor might become Ground Zero.
And to think that I was going to recarpet this year.
Friday, 14 February 2014
A Soho Club
I want to tell you about a little place I've discovered in Soho. It's not widely known and I suppose you could say it's a kind of gentlemen's club. Located about halfway along Old Compton Street is a door, set slightly back from the street. There's no sign on the outside to tell you. You just have to know. This discreet door, next to an off-licence, opens onto a steep, narrow staircase up to a first-floor room. I was met there on Tuesday by a slim girl with blue hair called Zoe who, over the course of a couple of hours, transported me and my friend Nigel to some amazing places. It was an education in every sense and worth every penny.
I'm talking of course about the Soho Whisky Club and one of their tutored whisky tastings -- why, what were you thinking?
The tickets for this were a birthday present from my daughters. A deal they had found online. And it specified that I should bring a friend. Nigel and I have always enjoyed a dram or two, setting the world to rights and so on. And I know of few other friends locally who have embraced the whisky journey as much. So naturally, he had to come on my Soho trip.
And it has to be said that this was a whisky tasting with a difference. Over the course of the evening, we learnt how to marry perceptions and expectations in a whisky, how the senses of sight, smell and taste need to used in sequence in order to get the most from each drink. The evening was orchestrated to take us from the low lands, with their smooth understated simplicity through to the peated sea monsters of Islay and their smoky, salty, craggy beauty. From lowland Auchentoshan and what, for me, was too meagre a flavour, we rolled north to Blair Athol, as typical a Highland malt as there is. Not outstanding in any particular dimension but representative of the genre. From the Highlands to the islands and specifically to Orkney and Scotland's most northerly distillery. And despite this bleak terroir, the distillery produces one of the most perfectly balanced of all whiskies -- soft, lingering, slightly sweet and honeyed, with the peat held in dignified proportion. A lady's whisky I have often thought and certainly one that Claire enjoys too. From Orkney, we stepped back on to the mainland, lurching our way down the east coast to Clynelish in Brora. A clean dry whisky, a little more peaty, but elegant and slightly nutty. Of course no tour of the whisky landscape would be complete without a visit to Islay and its smoky beauties. And this for me is what whisky is all about. Even the names -- Bowmore, Bunnahabhain, Bruichladdich, Ardbeg and Laphroaig -- are Celtic poetry. And on that Tuesday, our journey ended at my own favourite, Lagavulin. From its fortress on the coast, the distillery produces a whisky that bowls you over with flavour. Powerful, muscular, peaty, salty and yet somehow also fruity and perfumed. This is Renaissance Whisky.
Our guide on this tour was as improbable an expert as you can imagine. I think we were all expecting perhaps a portly, middle-aged man of ruddy complexion in a Harris tweed jacket as our guide. Nothing prepared us for the effervescent brilliance of Zoe Toolan, pierced nose and blue hair topping a catwalk model's physique. And Zoe, self-styled whisky missionary, clearly delights in turning the conventional on its head. A spirited artist, she shook all our preconceptions about whisky, its character and the people who drink it. Her no-nonsense approach and playfully iconoclastic delivery helped make our whisky journey so enjoyable. She is a rising star. And I have no doubt we will hear more of her in the future. Personally I think she should have her own TV series!
It got me thinking as well. If I could sum up the Scotch Whisky industry in five drinks, which would they be? Any choice is of course always going to be personal but here goes.
Springbank -- one of only a couple of Campbeltown malts left. Perfectly balanced, clean and elegant.
Macallan -- simply can't be ignored. Their sherry cask philosophy led away long before it was fashionable.
Caol Ila -- stops short of the awesome smoky brutality of Ardbeg. But not that far short.
Glenfarclas -- the archetypal Speyside malt. Full flavoured, open and welcoming
Talisker -- I still regret the passing of the rough, edgy eight-year-old bottling but, even in its Sunday best at 10 years, it is still the one whisky I would take to a desert island. A whisky of happy memories and wonderful friends.
A wonderful evening in Soho. I suspect Nigel and I will be back for more.
I'm talking of course about the Soho Whisky Club and one of their tutored whisky tastings -- why, what were you thinking?
The tickets for this were a birthday present from my daughters. A deal they had found online. And it specified that I should bring a friend. Nigel and I have always enjoyed a dram or two, setting the world to rights and so on. And I know of few other friends locally who have embraced the whisky journey as much. So naturally, he had to come on my Soho trip.
And it has to be said that this was a whisky tasting with a difference. Over the course of the evening, we learnt how to marry perceptions and expectations in a whisky, how the senses of sight, smell and taste need to used in sequence in order to get the most from each drink. The evening was orchestrated to take us from the low lands, with their smooth understated simplicity through to the peated sea monsters of Islay and their smoky, salty, craggy beauty. From lowland Auchentoshan and what, for me, was too meagre a flavour, we rolled north to Blair Athol, as typical a Highland malt as there is. Not outstanding in any particular dimension but representative of the genre. From the Highlands to the islands and specifically to Orkney and Scotland's most northerly distillery. And despite this bleak terroir, the distillery produces one of the most perfectly balanced of all whiskies -- soft, lingering, slightly sweet and honeyed, with the peat held in dignified proportion. A lady's whisky I have often thought and certainly one that Claire enjoys too. From Orkney, we stepped back on to the mainland, lurching our way down the east coast to Clynelish in Brora. A clean dry whisky, a little more peaty, but elegant and slightly nutty. Of course no tour of the whisky landscape would be complete without a visit to Islay and its smoky beauties. And this for me is what whisky is all about. Even the names -- Bowmore, Bunnahabhain, Bruichladdich, Ardbeg and Laphroaig -- are Celtic poetry. And on that Tuesday, our journey ended at my own favourite, Lagavulin. From its fortress on the coast, the distillery produces a whisky that bowls you over with flavour. Powerful, muscular, peaty, salty and yet somehow also fruity and perfumed. This is Renaissance Whisky.
Our guide on this tour was as improbable an expert as you can imagine. I think we were all expecting perhaps a portly, middle-aged man of ruddy complexion in a Harris tweed jacket as our guide. Nothing prepared us for the effervescent brilliance of Zoe Toolan, pierced nose and blue hair topping a catwalk model's physique. And Zoe, self-styled whisky missionary, clearly delights in turning the conventional on its head. A spirited artist, she shook all our preconceptions about whisky, its character and the people who drink it. Her no-nonsense approach and playfully iconoclastic delivery helped make our whisky journey so enjoyable. She is a rising star. And I have no doubt we will hear more of her in the future. Personally I think she should have her own TV series!
It got me thinking as well. If I could sum up the Scotch Whisky industry in five drinks, which would they be? Any choice is of course always going to be personal but here goes.
Springbank -- one of only a couple of Campbeltown malts left. Perfectly balanced, clean and elegant.
Macallan -- simply can't be ignored. Their sherry cask philosophy led away long before it was fashionable.
Caol Ila -- stops short of the awesome smoky brutality of Ardbeg. But not that far short.
Glenfarclas -- the archetypal Speyside malt. Full flavoured, open and welcoming
Talisker -- I still regret the passing of the rough, edgy eight-year-old bottling but, even in its Sunday best at 10 years, it is still the one whisky I would take to a desert island. A whisky of happy memories and wonderful friends.
A wonderful evening in Soho. I suspect Nigel and I will be back for more.
Wednesday, 22 January 2014
Glasses
It comes to something when I can say, without a hint of irony, that I lose track of the number of times I've lost track of my glasses. They seem to be perpetually in a place I'm not. If I am in the house, my glasses are in the car. If I am in the car, the glasses are in the shed. Or on the mantelpiece, down the side of the sofa, underneath a pile of newspapers, or beside my toothbrush in the bathroom.
Bizarrely, my glasses seem not only to be in places I'm not but, sometimes, in places I have no recollection of ever being. Or in places where I can think of no rational explanation as to how they came to be there. I can just about explain how they could have found their way into the refrigerator - until recently when they changed the formulation, I kept my Neupro patches in the salad crisper. In an improbable act of tidiness, I could just possibly have put my glasses there while putting the Neupro box back.
You're right. I don't really believe that explanation myself.
And how they found their way into the big 25 kg bag of dog food I shall never know, although alien abduction increasingly looks favourite.
It also seems to be a ground rule that the implausibility of locating the glasses is directly proportional to the necessity of finding them. If you don't need the glasses until next Tuesday, there they are on the cocktail cabinet. If you have five minutes before leaving to take the mother-in-law to Wednesday afternoon bridge, you can be sure that the glasses have inadvertently been left in a pair of khaki shorts you lent to the next-door neighbour to use while trekking in Nepal. You get my drift.
There has to be a better way. Some way of ensuring I don't find myself optically challenged. Alex's suggestion of attaching them to my head with a staple gun, whilst certainly a sort of solution, is probably not one I shall be taking up any time soon. Moreover, it suggests he spends too much time playing video games. We really should hide the Xbox.
So when Alice told me the other day that contact lenses worked for her, my reaction was pretty much "Bingo!" Actually my first reaction was "I didn't know you wore contacts".
"Dad, until last weekend, you didn't realise I wore glasses" she said "for the last four years".
"I've been busy" was the best I could muster in reply.
"And you wonder why I have middle child syndrome" she said, eyebrow arched.
Note to self -- must try harder. No, really must try harder.
I picked up the phone. It was a toss up between the opticians or the Samaritans.
"Hello" I said "can I make an appointment to be fitted for contact lenses please".
[To be continued]
Bizarrely, my glasses seem not only to be in places I'm not but, sometimes, in places I have no recollection of ever being. Or in places where I can think of no rational explanation as to how they came to be there. I can just about explain how they could have found their way into the refrigerator - until recently when they changed the formulation, I kept my Neupro patches in the salad crisper. In an improbable act of tidiness, I could just possibly have put my glasses there while putting the Neupro box back.
You're right. I don't really believe that explanation myself.
And how they found their way into the big 25 kg bag of dog food I shall never know, although alien abduction increasingly looks favourite.
It also seems to be a ground rule that the implausibility of locating the glasses is directly proportional to the necessity of finding them. If you don't need the glasses until next Tuesday, there they are on the cocktail cabinet. If you have five minutes before leaving to take the mother-in-law to Wednesday afternoon bridge, you can be sure that the glasses have inadvertently been left in a pair of khaki shorts you lent to the next-door neighbour to use while trekking in Nepal. You get my drift.
There has to be a better way. Some way of ensuring I don't find myself optically challenged. Alex's suggestion of attaching them to my head with a staple gun, whilst certainly a sort of solution, is probably not one I shall be taking up any time soon. Moreover, it suggests he spends too much time playing video games. We really should hide the Xbox.
So when Alice told me the other day that contact lenses worked for her, my reaction was pretty much "Bingo!" Actually my first reaction was "I didn't know you wore contacts".
"Dad, until last weekend, you didn't realise I wore glasses" she said "for the last four years".
"I've been busy" was the best I could muster in reply.
"And you wonder why I have middle child syndrome" she said, eyebrow arched.
Note to self -- must try harder. No, really must try harder.
I picked up the phone. It was a toss up between the opticians or the Samaritans.
"Hello" I said "can I make an appointment to be fitted for contact lenses please".
[To be continued]
Saturday, 11 January 2014
Trivial Pursuit
I was rummaging around in the loft a couple of days ago, picking my way among last year's Christmas decorations and some kind of construction with pulleys that bore the hallmark of a long neglected science project when I stumbled across the characteristic blue box of Trivial Pursuit. Bearing in mind that I had last played this game before I was married, I was amazed that it had been retained through various bedsitter, flat and house moves. I was even more amazed that it appeared to be intact -- the individual carousels and their slices of cake as we used to think of them were still present. I think we bought it around 1986. Certainly it was more than a quarter of a century ago.
And, if good sense had prevailed, that should have been that. Rather like Howard Carter's expedition to the Valley of the Kings, I should have kept my discovery to myself, reburied it under the newspapers of that year and let it lie. Instead, I thought it would be interesting for the children to see this piece of board game history and brought it down from the loft for their inspection. This simple act, like Carter's excavation of the tomb of Tutankhamen, somehow unleashed The Curse of the Board Game.
I should probably explain.
We, that is the Stamford family, do not have a great record with board games. Whereas for many other -- and I shall call them normal -- families, a game of cards, Ludo, Buckaroo or Monopoly provides an opportunity for some family bonding and genteel banter, none of this applies in the Stamford household. Where normal families play together like the Waltons, we are closer to the Borgias. Even my mother, normally the most gentle of all souls, became a she-devil when thwarted at her favourite boardgames. I learned very early on that the price of beating her at Scrabble generally resulted in a withdrawal of all catering services in the household for the rest of the day. It was not unknown for my mother to upend the board or simply sweep the letters onto the floor when facing a heavy defeat. She was, by any standards, a sore loser.
This ferocious competitive streak is clearly carried down the female line. My sister Venetia was much the same with card games. Blessed with glacially cool judgement and a penchant for the theatrical, she was a fearsome opponent and played canasta with the kind of ferocity one might associate with the linebacker corps of the New York Giants. "Relentless" is not normally the kind of adjective associated with parlour card games but somehow strangely appropriate in my sister's case -- watching her put my aunt Kath out of her misery was like witnessing Arctic trawlermen clubbing baby harp seals.
All Stamfords are competitive, I'm sorry to say. But here, as in so many areas of endeavour, the female of the species is more deadly than the male. In my experience, there is nothing more likely to disrupt the fragile spirit of Christmas goodwill than a family board game. Monopoly brings out the worst in every member of my family. Each has their own inflexible opinion of how the game should be played, the best strategy, the value of custodial sentences when the board is a minefield of hotels, and the constant intransigence over making deals. In our house however there is only one certainty -- Alice wins. Consistently. Somehow she has a knack of quietly accumulating the kind of war chest that would shame a Third World dictator. Inevitably, we don't play monopoly much these days.
It was only a few minutes after I had put the Trivial Pursuit board on the dining table before the family investigated. Rather like hyenas circling a fresh kill, they examined the board, questions and 'cheeses'. I suggested a game. Once we had weathered the usual blood feud over choice of colours, which in itself should have been a clear warning sign, we tentatively got underway. Gradually the rules came back to me, as did many of the questions and answers.
It soon became clear that I had something of an unfair advantage. Although history doesn't change -- that's why it's history -- questions on entertainment tend to be ephemeral. Not surprisingly, none of the children knew who had a cat named Bobby in Coronation Street (Minnie Caldwell), the year in which Diana Dors died (1984), nor which 1957 film starred Elvis Presley (Jailhouse Rock). Some of the geography questions, especially those pertaining to African countries also no longer apply. The same goes for science and nature. Pluto is no longer the outermost planet. Nor indeed a planet at all. And it is a fairly pitiful indictment of 1980s culture that "how many pieces of Kentucky fried chicken are in a bucket?" should be considered a legitimate question in the sports and leisure section. Still, the other sections were at least impervious to time's arrow. The war that ended with the signing of the 1856 Treaty of Paris is, readers will be reassured to read, still the Crimean War. Similarly, it is Shrove Tuesday that falls 39 days before Good Friday. No change there.
Of course all boardgames lend themselves to teasing and banter. Especially in our house. But it takes a special sort of game to fuel sledging on a scale worthy of the Australian slip cordon, the kind of mental disintegration advocated by Steve Waugh and his teammates. And goodness knows there was plenty of material to work with. I honestly don't know what they teach them in schools these days. There seems to be no general knowledge. If it's not part of the national curriculum, nobody pays attention to it.
So to set the record straight for those of my brood who got the answers wrong, the manufacturer of the Eclat sports car was Lotus. Lotus is a type of flower not a large swarming insect. That's a locust, Alice. Secondly, the lobster still only has ten legs. Yes Alex, the board game is 20 years old but no, evolution does not operate that quickly. The force that bears the motto "Per Ardua Ad Astra" is not gravity, Catherine. The Royal Air Force was the answer they were looking for.
While we're on the subject, Albert DeSalvo was the Boston Strangler, not one of the three tenors. Sydney's famous surfing beach is Bondi (not Bondage) and the US state famous for orange juice is Florida, not Alaska. Same number of syllables but no other connection.
Eventually, despite diversions, we had a winner. And I was shocked to see that even Catherine, the least competitive of my brood, was not above sending her boyfriend a video clip of her winning the game, accompanied by what I can only describe as a victory dance not dissimilar to the Haka.
The Trivial Pursuit is back in the loft. I'm guessing it will be another 20 years...
And, if good sense had prevailed, that should have been that. Rather like Howard Carter's expedition to the Valley of the Kings, I should have kept my discovery to myself, reburied it under the newspapers of that year and let it lie. Instead, I thought it would be interesting for the children to see this piece of board game history and brought it down from the loft for their inspection. This simple act, like Carter's excavation of the tomb of Tutankhamen, somehow unleashed The Curse of the Board Game.
I should probably explain.
We, that is the Stamford family, do not have a great record with board games. Whereas for many other -- and I shall call them normal -- families, a game of cards, Ludo, Buckaroo or Monopoly provides an opportunity for some family bonding and genteel banter, none of this applies in the Stamford household. Where normal families play together like the Waltons, we are closer to the Borgias. Even my mother, normally the most gentle of all souls, became a she-devil when thwarted at her favourite boardgames. I learned very early on that the price of beating her at Scrabble generally resulted in a withdrawal of all catering services in the household for the rest of the day. It was not unknown for my mother to upend the board or simply sweep the letters onto the floor when facing a heavy defeat. She was, by any standards, a sore loser.
This ferocious competitive streak is clearly carried down the female line. My sister Venetia was much the same with card games. Blessed with glacially cool judgement and a penchant for the theatrical, she was a fearsome opponent and played canasta with the kind of ferocity one might associate with the linebacker corps of the New York Giants. "Relentless" is not normally the kind of adjective associated with parlour card games but somehow strangely appropriate in my sister's case -- watching her put my aunt Kath out of her misery was like witnessing Arctic trawlermen clubbing baby harp seals.
All Stamfords are competitive, I'm sorry to say. But here, as in so many areas of endeavour, the female of the species is more deadly than the male. In my experience, there is nothing more likely to disrupt the fragile spirit of Christmas goodwill than a family board game. Monopoly brings out the worst in every member of my family. Each has their own inflexible opinion of how the game should be played, the best strategy, the value of custodial sentences when the board is a minefield of hotels, and the constant intransigence over making deals. In our house however there is only one certainty -- Alice wins. Consistently. Somehow she has a knack of quietly accumulating the kind of war chest that would shame a Third World dictator. Inevitably, we don't play monopoly much these days.
It was only a few minutes after I had put the Trivial Pursuit board on the dining table before the family investigated. Rather like hyenas circling a fresh kill, they examined the board, questions and 'cheeses'. I suggested a game. Once we had weathered the usual blood feud over choice of colours, which in itself should have been a clear warning sign, we tentatively got underway. Gradually the rules came back to me, as did many of the questions and answers.
It soon became clear that I had something of an unfair advantage. Although history doesn't change -- that's why it's history -- questions on entertainment tend to be ephemeral. Not surprisingly, none of the children knew who had a cat named Bobby in Coronation Street (Minnie Caldwell), the year in which Diana Dors died (1984), nor which 1957 film starred Elvis Presley (Jailhouse Rock). Some of the geography questions, especially those pertaining to African countries also no longer apply. The same goes for science and nature. Pluto is no longer the outermost planet. Nor indeed a planet at all. And it is a fairly pitiful indictment of 1980s culture that "how many pieces of Kentucky fried chicken are in a bucket?" should be considered a legitimate question in the sports and leisure section. Still, the other sections were at least impervious to time's arrow. The war that ended with the signing of the 1856 Treaty of Paris is, readers will be reassured to read, still the Crimean War. Similarly, it is Shrove Tuesday that falls 39 days before Good Friday. No change there.
Of course all boardgames lend themselves to teasing and banter. Especially in our house. But it takes a special sort of game to fuel sledging on a scale worthy of the Australian slip cordon, the kind of mental disintegration advocated by Steve Waugh and his teammates. And goodness knows there was plenty of material to work with. I honestly don't know what they teach them in schools these days. There seems to be no general knowledge. If it's not part of the national curriculum, nobody pays attention to it.
So to set the record straight for those of my brood who got the answers wrong, the manufacturer of the Eclat sports car was Lotus. Lotus is a type of flower not a large swarming insect. That's a locust, Alice. Secondly, the lobster still only has ten legs. Yes Alex, the board game is 20 years old but no, evolution does not operate that quickly. The force that bears the motto "Per Ardua Ad Astra" is not gravity, Catherine. The Royal Air Force was the answer they were looking for.
While we're on the subject, Albert DeSalvo was the Boston Strangler, not one of the three tenors. Sydney's famous surfing beach is Bondi (not Bondage) and the US state famous for orange juice is Florida, not Alaska. Same number of syllables but no other connection.
Eventually, despite diversions, we had a winner. And I was shocked to see that even Catherine, the least competitive of my brood, was not above sending her boyfriend a video clip of her winning the game, accompanied by what I can only describe as a victory dance not dissimilar to the Haka.
The Trivial Pursuit is back in the loft. I'm guessing it will be another 20 years...
Tuesday, 31 December 2013
Is this punding? You decide
While I appreciate that starting any blog with the word Wagner is usually enough to have readers abandoning the page like lemmings, you might want to stick around for this one. Trust me, it will make sense -- well, inasmuch as anything I write makes sense.
Because dear reader, and you may already be in the singular rather than plural, I want to tell you how the music of Richard Wagner has alerted me to possible new developments in my Parkinson's. And no, despite the man's overwhelming sense of self-importance, not even he claimed to be a neurologist. Pretty much everything besides -- musician, composer, poet, political activist, author and general philanderer. But not a neurologist.
Let me backtrack a little.
As many of you who know me would be the first to acknowledge, I like music. And my tastes are catholic, albeit with a few gaping holes. I can't imagine the day dawning when I will buy my first Eminem record for instance. And Lady Gaga should probably not rely on me to bolster sales in the post-Christmas lull. But other than a few egregious examples, I like most music. And some music, I absolutely adore. Many of you will already be hearing the possible direction this is taking. But bear with me.
Anyway, to cut a long story short (and when have I ever), I discovered that, over some 30 years of purchasing, I have amassed just over 3500 classical CDs. Leaving aside the fact that this amounts to a cash outlay of somewhere in the region of a year's salary, it also represents a substantial listening time commitment. People often ask me how I find time to listen to them all. Well, the answer is of course that I don't. Assuming a conservative estimate of 60 minutes per disc, and an average listening day of say 10 hours (just to make the mathematics easy), I could start at Albinoni at 9 AM on January 1, 2014 and only reach the closing bars of Zemlinsky's Sinfonietta at around supper time on 14 December.
I would have put Beethoven behind me in late February, before hearing Delius's 'First Cuckoo in Spring' appropriately enough in mid-March. April would be spent wading through the deep waters of Elgar oratorios before summer marched in around June with Mahler's hymn to nature, the mighty 3rd Symphony. By August, we are humming 'O Mio Babbino Caro' and ''Nessun Dorma' with a glass of Barolo in hand, before Sibelius's Tapiola accompanies a distinct nip in the September air. As we rummage for jumpers in October, Stravinsky's Rite of Spring seems a world away. Slippers by the fireside in November can only mean the whoop of Valkyries, before Walton invites us to Belshazar's Feast, just as the office Christmas bashes gets underway.
I f I took an hour off for lunch each day, we would be into 2015 before I had popped the cork on Strauss's Champagne Gallop. And if I allowed myself music free weekends, we would be surrounded by Sugar Plum fairies until well after Easter 2015. And if the restriction was a mere one hour per day (and I have to concede that there are some people out there who listen to as little Wagner as this), we would have changed presidents not once but twice during the course of my classical record collection. In fact it's not beyond the realms of possibility that, by the time Wagner reaches the end of the world in Gotterdammerung, the world could actually have ended. Now that would be a production worth seeing ...
Of course these calculations make the assumption that I do not buy a single CD between now and the election of Obama's successor's successor (or the end of the world, whichever comes first). And let's face it, that's not going to happen.
For many of you, the prospect of listening to my record collection for the next decade would be about as popular as eight years of Republican government. And probably about as productive.
Okay, enough of these diversions. Let's get down to the serious business of what I have to say. Amusing though the above may be (I hope it made you laugh), the very detail of it reveals the number of important aspects of Parkinson's. How a record collection can be indicative of symptom progression is something that many of you may find puzzling. But in amongst all those fripperies, are some key facts.
1) I have an abnormally large number of CDs.
2) I have expended significant time and energy counting them
3) I have arranged them in alphabetical order
4) I have performed several unnecessary (if amusing) calculations on these CDs.
From a neurological stance, these activities are evidently pointless. It really doesn't matter how many CDs I have nor the length of time the music would play for. Not one of these mental exercises has the slightest value. These are essentially repetitive and unproductive behaviour elements. And there is a word for this behaviour.
It's called punding.
Punding is essentially the unproductive repetition of small behavioural components, to the exclusion of other behaviours. Typical examples might be the collection and sorting of objects according to size or shape for instance. Taking things to pieces and reassembling them might be another example, particularly amongst men. Women will often repeatedly sort through their handbags or tidy continuously. Many people with Parkinson's who exhibit punding find it comforting, rewarding or in some way enjoyable and are frustrated when diverted from the activity. Most who pund retain insight into their behaviour.
On the face of it, and in the absence of any other information, you would reasonably suppose that I was showing signs of punding. Collecting and sorting are hallmarks of punding. So, were I to present myself to an uninitiated neurologist -- a trainee for instance -- they might draw that conclusion and treat accordingly.
We know that this is a dopaminergic behaviour as it was first observed in amphetamine and cocaine users, both of which drugs release dopamine in the brain. A recent paper (Fasano & Petrovic, 2010) appeared to implicate the dopamine agonists in general and those with actions on D1 and D2 receptors particularly.
But am I actually punding? If the hypothetical neurologist trainee knew me a little better, might they draw a different conclusion?
The key thing here is the premorbid personality. What was the patient (me) like before I had Parkinson's? Is this apparent punding a new behaviour, entirely out of character, or is it merely an exaggeration of the behaviour I exhibited before Parkinson's? Is it even exaggeration at all?
So, to help answer this question, let me take you back more than 40 years. A 10-year-old Jon has a bedroom at the end of a long corridor. Sharing his bedroom are 4 floor-to-ceiling industrial shelf units. And covering (literally covering) every inch of space are model aeroplanes of every shape or form. More than 200 as I recall, and here memory fails me. And these planes were divided up thematically. Two shelves were occupied by First World War aircraft -- Sopwiths, Fokkers, Spads and so on, surrounding the pride of my collection, a Handley Page bomber. And so it went on, each shelf organised according to nationality or time period (e.g. Second World War American bombers). On those four shelves was an entire Airfix airforce. Were these planes real, they would have amounted to a significant strategic deterrent.
So my point is this. The 10-year-old Jon did not have Parkinson's and did not take any medication beyond the usual aspirin or paracetamol. Juvenile Jon was nonetheless of a rather obsessive persuasion and although I did not wash my hands hundreds of times a day, I always avoided the cracks in pavements.
I would submit, your honour, that what at first sight looks like an open and shut case of punding is rather more complex. I don't rule punding out but I do believe that it is important to take into account the patient's own personality, however quirky!
Finally, before I subject my case to you for scrutiny, I should just like to respond to each of the points I enumerated above:
1) 3500 CDs is not unique. David Mellor has more.
2) It’s only a ballpark figure, accurate to ~50 or so.
3) Well, since they occupy 8 metres of shelf space, how would you find any CD otherwise
4) Actually only once - for the amusement of readers of this blog.
Over to you -- am I punding?
Fasano A, Petrovic I (2010) Insights into pathophysiology of punding reveal possible treatment strategies. Mol Psychiatry. 15: 560-73.
Tuesday, 24 December 2013
Come dine with me...
About a year ago I received a letter inviting me if I would like to participate in a program called "Come Dine with Me" on Channel 4 as I recall. There was a paragraph or two explaining the nature of the show -- basically five contestants she take it in turns to cook for the others. Then, at the end of it all, everyone votes to decide who cooked the best meal. The show is also punctuated by brief interviews with each contestant in which they say what they liked and disliked.
Sounds innocuous enough I thought and mentioned it to Alice.
"You should definitely do it Dad" she said "the contestants cook awful food and say bitchy and sarcastic things about each other. You'd be perfect".
I think she intended it as a kind of complement.
But if I had ever entertained even the briefest flicker of interest in participating, Alice's rather overcandid appraisal of my suitability pretty much snuffed it out.
I pretended to be hurt.
After all, if the principal pre-requisite for the show is to be sarcastic and cook dreadful food, it's rather unsettling that, in Alice's eyes, I have both bases already covered.
She's probably right about the corrosive tongue. Despite repeatedly being told, as a child, that it was neither big nor clever, I've always found sarcasm to be both. You only have to look at the number of nations without an equivalent of this rapier-sharp linguistic weapon to acknowledge its power. It is something peculiarly British. Our language, with nearly 3 times as many words as others, is particularly conducive to sarcasm.
I'm probably also bang to rights on the food. Nobody who has ever experienced my lentil and bean sprout clafoutis would query my ability to create something inedible from normally promising ingredients, to somehow snatch culinary defeat from the jaws of gastronomic victory. My family lose track of the occasions where I have somehow managed to turn say eggs, milk and flour into a sort of chilled-omelette-sorbet-thing rather than the classic hot soufflé they were perhaps anticipating. My explanation about the spiritual value of walking the path less travelled is brushed aside as swiftly as the food itself.
But even with my impeccable qualifications for the show, it quickly becomes clear that the participants are infinitely worse, taking the word 'scathing' to dizzying new heights. It transpires that, in addition to passing judgement on the food, the guests are expected to wander around their host''s dwelling, treating the viewing public to their thoughts on the contents of sock drawers, wardrobes and wine cellars. Every nook, cranny and crevice is poked, prodded and probed. All is laid bare -- whether you buy your clothes at Top Man or at Gieves and Hawkes, all is fair game to the perfidious vipers who participate in the show.
By any standards, it's grim viewing. To be stuck in a room with one self opinionated narcissist is purgatory. Take five, all with volume control issues, and it's as near to hell as I can imagine. One minute the guests are oozing fulsome praise for the host and for his adventurous sprout terrine with a cabbage jus, only to then liken it, for the benefit of the cameras, it to a luminous green cowpat,
The whole notion of the show is, in any case, a ridiculous contrivance. If you put Tarquin Chinless-Wonder, Gazza and Betty Boop around the same table, it's a fair bet that conversation will be, at best, stilted. Betty will know as little about plover's eggs as Tarquin does about pink feather boas. But then of course, if they all got on like a house on fire, there would be no television programme.
I remember Castaway a decade or so ago, ostensibly a social experiment on the concept of community, where a group of people were abandoned on the island of Tarantsay. As a social experiment it was a success. For the most part, the people got on reasonably well. As a piece of prime-time television however, it was pretty lame. Until the producers hit upon the idea that the islanders needed to relax and also to find more of their own food. Their solution to this two-pronged conundrum was to supply the islanders with alcohol and guns respectively. Suddenly the program had an edge. Although, for the most part, still resolved through a series of civil verbal exchanges, there was now the possibility, however remote, that differences of opinion might instead find themselves subject to an armed response.
Castaway at least had some kind of sociological or scientific pretensions. But a situation as contrived as Come Dine with Me does not even have that. It's is more unreality than reality TV. With regard to scientific merit, it is rather like stamping on woodlice to see if they can support the weight of a human being.
But the show has served one useful purpose. I'm satisfied that no matter how sarcastic I become and no matter how badly I cook, I will never appear on the programme.
Well, maybe if there were guns...
Sounds innocuous enough I thought and mentioned it to Alice.
"You should definitely do it Dad" she said "the contestants cook awful food and say bitchy and sarcastic things about each other. You'd be perfect".
I think she intended it as a kind of complement.
But if I had ever entertained even the briefest flicker of interest in participating, Alice's rather overcandid appraisal of my suitability pretty much snuffed it out.
I pretended to be hurt.
After all, if the principal pre-requisite for the show is to be sarcastic and cook dreadful food, it's rather unsettling that, in Alice's eyes, I have both bases already covered.
She's probably right about the corrosive tongue. Despite repeatedly being told, as a child, that it was neither big nor clever, I've always found sarcasm to be both. You only have to look at the number of nations without an equivalent of this rapier-sharp linguistic weapon to acknowledge its power. It is something peculiarly British. Our language, with nearly 3 times as many words as others, is particularly conducive to sarcasm.
I'm probably also bang to rights on the food. Nobody who has ever experienced my lentil and bean sprout clafoutis would query my ability to create something inedible from normally promising ingredients, to somehow snatch culinary defeat from the jaws of gastronomic victory. My family lose track of the occasions where I have somehow managed to turn say eggs, milk and flour into a sort of chilled-omelette-sorbet-thing rather than the classic hot soufflé they were perhaps anticipating. My explanation about the spiritual value of walking the path less travelled is brushed aside as swiftly as the food itself.
But even with my impeccable qualifications for the show, it quickly becomes clear that the participants are infinitely worse, taking the word 'scathing' to dizzying new heights. It transpires that, in addition to passing judgement on the food, the guests are expected to wander around their host''s dwelling, treating the viewing public to their thoughts on the contents of sock drawers, wardrobes and wine cellars. Every nook, cranny and crevice is poked, prodded and probed. All is laid bare -- whether you buy your clothes at Top Man or at Gieves and Hawkes, all is fair game to the perfidious vipers who participate in the show.
By any standards, it's grim viewing. To be stuck in a room with one self opinionated narcissist is purgatory. Take five, all with volume control issues, and it's as near to hell as I can imagine. One minute the guests are oozing fulsome praise for the host and for his adventurous sprout terrine with a cabbage jus, only to then liken it, for the benefit of the cameras, it to a luminous green cowpat,
The whole notion of the show is, in any case, a ridiculous contrivance. If you put Tarquin Chinless-Wonder, Gazza and Betty Boop around the same table, it's a fair bet that conversation will be, at best, stilted. Betty will know as little about plover's eggs as Tarquin does about pink feather boas. But then of course, if they all got on like a house on fire, there would be no television programme.
I remember Castaway a decade or so ago, ostensibly a social experiment on the concept of community, where a group of people were abandoned on the island of Tarantsay. As a social experiment it was a success. For the most part, the people got on reasonably well. As a piece of prime-time television however, it was pretty lame. Until the producers hit upon the idea that the islanders needed to relax and also to find more of their own food. Their solution to this two-pronged conundrum was to supply the islanders with alcohol and guns respectively. Suddenly the program had an edge. Although, for the most part, still resolved through a series of civil verbal exchanges, there was now the possibility, however remote, that differences of opinion might instead find themselves subject to an armed response.
Castaway at least had some kind of sociological or scientific pretensions. But a situation as contrived as Come Dine with Me does not even have that. It's is more unreality than reality TV. With regard to scientific merit, it is rather like stamping on woodlice to see if they can support the weight of a human being.
But the show has served one useful purpose. I'm satisfied that no matter how sarcastic I become and no matter how badly I cook, I will never appear on the programme.
Well, maybe if there were guns...
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