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.

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.

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.

I looked him square in the eye and told him I was going to be a scientist.



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.

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.

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.

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.