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...

Thursday, 19 December 2013

Cascais near Lisbon

A couple of weeks or so back I found myself in Cascais, 20 miles west of Lisbon, for a conference. I say 'I found myself' probably conveys the wrong impression. Rather like saying, after a stag night, that 'I found myself' naked in a roadside skip near Arbroath, handcuffed to a Puerto Rican stripagram girl and with the word Dolores tattooed across my chest. We've all been there.

No, this time I actually chose to be there. In Cascais not Arbroath. You knew that.

So why Cascais, a well-known and wealthy seaside resort, the Monte Carlo of Portugal indeed, adjacent to Estoril where the yachted aristocracy of Europe would meet for the Portuguese Grand Prix? Not, you might think, a particularly representational venue for an academic conference. And in that you would be right. Since the legislation on pharma-funded conferences tightened, these have been dour, grey affairs so unattractive that there would be no chance of mistaking them for any pharmaceutical jolly. No indeed. These conferences are calls of duty rather than freebies. Food is grey and uninteresting, served by staff of the same ilk. And should you ask for a second helping of anything, you are greeted like a latterday Oliver Twist. Believe me, short of conducting proceedings in a Turkish prison, it's hard to see how they could be less incentivised.

Dissatisfied even with these austerity measures, at least one drug company is rumoured to be terminating all paid relationships with physicians. That includes sponsorship for doctors to attend conferences and honoraria for work on advisory boards. Now call me an old cynic (and many do) but I don't see this working. Okay, there may be those amongst the company who feel that this amounts to a strong occupation of the moral high ground. They may even be right. In a utopian society, doctors might well work for free and give up their annual leave for the greater good, even spend the money set aside for the family holiday in order to attend a conference.

No, really.

Meanwhile, back in reality, I suspect the truth is rather more predictable. Given the choice between unpaid work for a drug company and a round of golf with friends, I think we know who is holding all the clubs. To believe in altruism on this scale you would need to have a strong faith in porcine aviation. The simple reality is that doctors will seek sponsorship from other sources. That means other drug companies. Rival drug companies. The moral high ground can be a pretty lonely place sometimes.

It reminds me of the old Soviet Cold War joke:

Q: what's the definition of a string quartet in Russia?

A: a symphony orchestra after a tour of the West.

Don't get me wrong -- I'm not advocating a return to the gravy train days of old where influential physicians were (allegedly) kept sweet with all sorts of nonsensical and inappropriate inducements. Stories of paid 'fact-finding' trips to the Bahamas, although probably apocryphal, helped create the perception of widespread abuses by an industry grown cynical. Austerity was seen as the only reasonable antidote. And predictably, as so often with regulatory measures, the pendulum swung dramatically. Conference venues, instead of being upmarket hotels were suddenly gulags.

But of course if the pharmaceutical industry is not covering the bar bill, none of the above restrictions apply. And without lavishing speakers with carriage clocks, laptops, iPads and other sundry electronics, it is still possible to make the conference experience more enjoyable. Cascais, where you can walk along the beach at dawn before the scientific sessions, is just such an experience. A place you want to return to and people you want to work with again.

Do I feel sullied by such comparative opulence? Do I feel corrupted by such generous hospitality? Do I believe that my opinions have been in some way bought? No, not in the least. It's just nice to have a conference in an environment that is conducive to productive work and not an attempt to faithfully recreate the film set of Midnight Express.

Obrigado Cascais. Obrigado.

Monday, 25 November 2013


I've been thinking a lot about biscuits recently. Partly this is the result of some idle meanderings for another book I'm writing about my childhood growing up in Yorkshire. But when you think about it, the link is obvious. It's the Garibaldi. You remember -- dead fly biscuits? I can still remember my little sister's look of lip curling disgust as I invited her to entertain the possibility that I might just have crushed a real fly on the biscuit she had just eaten with her milk. She stood up suddenly and, fearing retribution of the kind only a sister can mete out, I made a dash for the door.

She made a dash to the bathroom.

Even my nonchalant whistling as I passed my mother on the landing could not mask the sound of retching from the bathroom.

"What's wrong with your sister?"

"Something she ate?" I ventured.

It can have been no more than two minutes before I heard my mother bellow "Jonathan" down the stairs.

That was the problem with the Garibaldi -- not a trustworthy biscuit. Well, in the wrong hands anyway.

But I digress. My childhood is the subject of another book and now, nearly 50 years on, I wouldn't dream of adding flies to biscuits. I have matured, moved on if you will, in my biscuit appreciation. No longer do I see the biscuit as little more than a vehicle for sibling discomfort. In any case, my sister has never eaten a Garibaldi since.

Nowadays I wouldn't even contemplate such a biscuit -- and why should I, faced with the cornucopia of different biscuit experiences available to me now. Having what doctors euphemistically call a life limiting condition, I don't plan to spend it looking balefully at rich tea fingers or the humble digestive. Even my mother called them 'suggestive' biscuits to make them seem more interesting. She never tired of the joke, chuckling anew each time. Her ability to find laughter in such barren ground only confirms once more to me that there was nothing on television throughout the entire 1960s. Entire sitcoms were based on little more.

Suggestive or otherwise, they're not a biscuit that really comes above the radar. Not even when chocolate coated. And that's saying something since it has been my long considered opinion that pieces of linoleum tile, if dipped in chocolate, would make a perfectly serviceable between-meals snack. But even chocolate, the great Redeemer, cannot breathe life into the digestive biscuit. A biscuit for the mentally congestive.

The rich tea finger is little better. Even the name suggests stolid worthiness. It's a biscuit that makes you think of high tea in the chilly front parlour with nothing but Aunt Primrose, the living prune, and the slow tick of the mantelpiece clock for company. A biscuit that spoke of a wartime of deprivation and grim self-denial. An apology for a biscuit. Even now I can remember Aunt Primrose's look of arched irritation when I asked her if she had any other biscuits.

No, these were good enough for her father and his father before him. I held myself back from enquiring whether these were the actual biscuits so popular with her ancestors. In any case, it was clear enough that, to want any other biscuits was tantamount to putting on airs and graces, a character flaw comparable in 1960s Yorkshire to being a homosexual. Or a Tory.

I made some feeble excuse and it was never mentioned again.

When the glorious Revolution comes and I shall have chance to settle old scores, the rich tea biscuit will be the first to face the firing squad. Quickly followed by the suggestive digestive.

But the Yorkshire of my childhood was a drab monochrome place and the monochrome Aunt Primrose was no more than an embodiment of that. It is against that grey, colliery-scarred landscape that I remember my first jammy dodger. And if ever there was a biscuit to excite a 10-year-old boy, this was it. Firstly, it was red. Or at least the middle was. Unnaturally red. The kind of red achieved as a by product of the petrochemical industry rather than lush fields of ripening summer strawberries. It was brash and bold. A biscuit that spoke of youth and exuberance. If the rich tea biscuit was an Austin 1100, the jammy dodger was a Cadillac Eldorado. Here was a biscuit that spoke of horizons beyond Cantley or Armthorpe. Here was a biscuit that whispered Worksop or Rotherham.

It was the kind of biscuit you would even kiss your sister for.

Monday, 11 November 2013

Battered shark

You sometimes get the feeling that everything has a price. Every little joy in life has to be balanced with a comparable disappointment. And vice versa. You acquire Parkinson's for instance but are compensated for this by the amazing new friends you meet. You pass your GCSEs with stellar grades only to get home and find the dog has died. You miss your train home only to meet a childhood sweetheart in the taxi queue. That sort of thing. Checks and balances. It's as though the Almighty won't let you be miserable without some compensation. And nor will He want you to get too uppity.

Take today as a case in point.

Evidently Anton has offended the motoring gods. His first real outing in The Shark, to see Manchester United play Arsenal at Old Trafford has been, at best, only a qualified success but nonetheless fits this pattern. The central part of the day, the game itself, has pretty much gone as well as could have been hoped from a Mancunian perspective. One nil to United with the goal scored by Arsenal old boy Robin Van Persie. The words 'salt' and 'wounds' spring to mind.

Taken in isolation, the game and the result would normally equate to a fine day trip bracketed by a 200 mile snarl in The Shark. One can almost hear Lou Reed's 'Perfect Day' playing in the soundtrack of life. Unfortunately, as already explained, that's not how life works. A famous victory calls for redress of similar magnitude. You can almost imagine God reaching for his pocket calculator. "Let me see ..... good seats at Old Trafford .... Man United victory .... goal by Robin Van Persie .... perfect weather". He sucks the air through his teeth "Oooh, that's going to cost".

Inevitably therefore, according to my hypothesis, the hours running up to the game are rather less Lou Reed and rather more Elvis Costello. Specifically his 1979 single 'Accidents Will Happen' as The Shark finds itself part of a pile up, rear-ended on the motorway. Anton and his son Tom are thankfully fine but The Shark is not. Although the least damaged of the cars involved, the back of the car is still going to take more than a smear of T cut and a few minutes polishing. The boot has visible dents and one of the exhausts is bent back on itself. It's lucky the fuel tank was not punctured. A hat-trick by Rooney and who knows!

To me, a car crash would be sufficient cue to forget the match, head home and curl up in a bundle on the sofa with comfort food and a glass of whisky. And if Anton ever at any stage entertains this notion, it is swiftly scotched by Tom, whose determination to see the match is undiminished by something so trivial as a mere motorway car crash. After all, what's a little whiplash between friends? Anton correctly demonstrates that, unlike his football crazed son, he is still in possession of his faculties and insists on at least subjecting the car to the scrutiny of the AA. Tom meanwhile, frothing at the mouth with every minute lost, spends his time productively updating Facebook with the latest roadside bulletin.

I stumble upon this situation inadvertently. As my wife shops in Marks & Spencer, I check my Facebook, in half expectation of a briefing document from a US colleague. No sign of any spreadsheet but plenty of pictures of mangled metal and car parts on the hard shoulder. Only when I see the number plate do I realise that this is Anton's car. Despite initial panic, I soon realise that he and Tom must be unhurt. Even Tom would presumably not update Facebook if his father was in mortal danger. Well, maybe discreetly.

Nevertheless, as the principal proponent of the successful 'Jag for Anton' campaign, I feel it my duty to try and instil a little common sense in the dynamic due. I leave largely unheeded messages on Facebook until the phone rings. It is Freia, maker of the best biscotti north of Turin and in all respects a great friend apart from her abject failure to understand the male need for Jaguar ownership. She is surprisingly calm. Apparently the AA man has bent the exhaust back into approximately the right shape with a length of metal piping before giving The Shark a clean bill of health -- well, clean enough to get to Manchester and back.

They arrive in time for the game. Anton finds a parking place a short walk from the ground and off they troop. Two hours later, the Reds have beaten the yellow peril (Arsenal are playing in their away strip) and all seems much better with the world. But inevitably the triumph of red over yellow calls for a price.

As they approach the car, Anton notices something yellow in a plastic envelope on the windscreen. He peels it off. In the distance he can hear the maniacal laugh of a traffic warden.

Tuesday, 5 November 2013

The gene genie (Part 2)

Where were we? Oh yes, I remember. I was about to get my genetic results.

Of course the first thing you notice when you log on is -- well -- very little. There are no glaring warnings, no headlines, nothing on the screen to suggest that they know you're there. Not that I was expecting a reception committee -- "Ah Mr Bond, we've been expecting you".

My first piece of genetic information, to whet the appetite so to speak, is a polite suggestion that I should avoid eating raw oysters -- I am particularly susceptible to the most common form of Norovirus -- you know, the diarrhoea and vomiting bug. Nice.

But it's not long before you get into the swing of things. There is a lot of genetic information here, mostly of little importance. A sort of genetic amuse bouche before the opening salvoes -- a list of 52 conditions of known genetic inheritance. And for me, of no genetic interests either since my genome is unpolluted by these little malefactors. Of 52 conditions with known inheritance, I have none. No phenylketonuria. No Gaucher's disease, no Pendred syndrome nor familial Mediterranean fever. And those are just the ones I can pronounce. I'm also in the clear on Medium-Chain Acyl-CoA Dehydrogenase (MCAD) Deficiency and certainly out of the woods on Rhizomelic Chondrodysplasia Punctata Type 1 (RCDP1) . Just imagine my relief.

In fact I don't have around 45 conditions that, until now, I didn't know it was possible to have. And how can you be afraid of something that you didn't even know existed. Unless you're Donald Rumsfeld.

But surely I hear you ask them must be more for your $99 than an all clear on the unpronounceable diseases and gentle advice to avoid oysters which, bearing in mind that they have the taste and consistency of snot, will not take much further inducement.

Not surprisingly then there is a whole lot more information available from my loquacious little genome. In the debit column, I have a slightly elevated risk of psoriasis. Okay, mildly irritating perhaps but, when I discover that it's counterbalanced by a dramatic reduction in my likelihood of contracting Alzheimer's, it's a trade I'm more than prepared to make. And I couldn't help but raise a wry smile on discovering that my genetic predisposition to Parkinson's is actually some 20% lower than the general population based on my expression of different alleles in that smorgasbord of genes associated with Parkinson's.

All of this genetic shenanigans proves that I have a common or garden genome. In fact you would struggle to find a less interesting genome than mine. Even geneticists, trying to find excitement where there is none, must have absentmindedly picked their fingernails when challenged to say something interesting about my genetic composition. Ordinary. Very ordinary. Jon 'Ordinary' Stamford.

It's rather like reading my school report -- 'Try as he may, Stamford has a very ordinary genome. It is unlikely his genome will amount to anything. He has performed adequately in all subjects, but without distinction in any. As goalie, he kept a clean sheet in the Nature v Nurture house cup. His performance as third bystander in the school play went largely unnoticed. The careers master suggests he tries his hand at something mundane and unimaginative. Accountancy perhaps. Or politics.

Just as I'm about to write my genome off, I stumble across the 'Traits' section of the website. Here, stashed away like some cabinet of Victorian curiosities, are all the things that won't harm you or help you. Or do anything really. They're just part of you.

And here I discover that I am unlikely to get male pattern baldness. True enough -- I have a full head of hair. Grey hair certainly but at my age you just happy to be able to hold your head high when buying a comb in Boots. No need for any awkward moments there. Moreover, my hair is apparently slightly curlier than average. Right again. Only slightly mind you -- we're not talking Afro here. And my eyes are likely to be blue. In actual fact they are a sort of pale blue -- more a steel grey I think. They match my hair.

And when it comes to muscle performance the report tells me I'll be an unlikely sprinter due to a lack of fast twitch muscle fibres. Going back to school again, it should be said that my track and field performances were legendary. I achieved a 100m time that was considered slow for the 200m and remain to this day the only person at the school ever to injure himself on his own javelin. They wouldn't even let me pick up the discus.

It also transpires that I have two different alleles that make you brighter if you are breastfed (which I was). According to the genome's prediction, and I'm happy to go along with it, I should be around 12 IQ points higher than average. Actually (trying hard not to look smug) I think that figure is nearer 30 or so. And I'm a dunce compared to the kids.

But all of this genetic information pales into insignificance when stacked against what, for me, is unequivocally the most memorable finding. I possess the CC form of the ABCC11 gene which means that I am condemned to a life of wet ear wax. Even 23andme's scholarship comes up short on this one and they have to confess, rather limply, that they know of no evolutionary advantage to having wet rather than dry earwax.

Don't laugh -- scientists get paid to do this stuff.

Friday, 25 October 2013

Football at Wembley (but not as we know it)

The last time I was at Wembley for a sporting event was on 16 November 1977 when I watched England beat Italy 2-0 in a World Cup qualifier with goals from Kevin Keegan in the 11th minute setting us on our way before Trevor Brooking finished the job in the 80th minute. The team that day would moisten the eye of the most jaded football fans -- Ray Clemence, Phil Neal, Trevor Cherry, Ray Wilkins, Dave Watson, Emlyn Hughes, Kevin Keegan, Steve Coppell, Dave Latchford, Trevor Brooking and Peter Barnes.

This Sunday I shall be at Wembley again, to watch the San Francisco 49ers take on the Jacksonville Jaguars. And despite Jacksonville's feline sobriquet, I shall not be putting my faith in that particular type of Jaguar. I am a diehard 49ers fan, having watched them every Sunday night since the days of Dwight Clark, Roger Craig, Joe Montana, Jerry Rice, Steve Young through to the current stars -- Frank Gore, Colin Kaepernick, Vernon Davis, Aldon Smith, Donte Whitner and Patrick Willis.

Of course, beyond the name and location, there's not much to link the Wembley I visited in 1977 with Sunday's stadium. Gone are the twin towers of the old stadium, long since replaced by a sort of arch or rainbow or what have you. It's progress I suppose.

But even more startling is the imposed code of behaviour. In 1977, the stewards would relieve you of any bottles, largely for your own safety, but were fairly relaxed about beer cans. In any case, pelting the travelling Italian fans with empty cans of Skol in the half-time interval was only to be expected. In fact it was more or less mandatory. Many were thrown back.

I certainly don't recall receiving any more detailed information on restrictions than that. Of course times have changed and now, in these days of comedy litigation, things have to be spelt out. And the letter that came with my tickets for Sunday indicated strongly that I should check the website for details of proscribed items.

Of course it is not really a valid comparison -- a European football match a third of a century ago and an all American event that is little more than coincidentally on British soil. In 1977, we had experienced 32 years of peace, whereas in 2013, one feels that we're almost on a war footing.

Or so it would seem from the list of banned items. This is all, and I kid you not, taken from the website. And while some of it undoubtedly makes sense, other items take a bit of explaining. I can understand for instance a restriction on "bottles", "weapons" and "knives". There are, after all, always a few dimwits who think that a knife is as essential as a wallet. But do we really need to be told that we should not bring explosives to the ground. I can understand a ban on smoke flares (which incidentally are listed) but how many American football fans would normally attend the ball game with their pockets full of dynamite? Well, maybe in Los Angeles I suppose.

Camcorders and cameras are also banned. But what about smart phones? Let's see them try to relieve the Wembley crowd of 90,000 iPhones then. I don't think so. And binoculars are also prohibited. Bad luck if, like me, you're shortsighted. Apparently I only paid to attend the game. Actually seeing it is extra. Or maybe they're worried about people carrying binoculars full of gunpowder.

Bags are right out. Whether they are coolers, camera cases, backpacks, duffle bags or even supermarket bags, it matters not. All luggage is banned. I can just imagine the security guards quaking in terror at the sight of an army of football fans strolling down Wembley Way armed with Tesco carrier bags. If only they had been deployed in Iraq...

It gets better. Glass is forbidden. No exemptions. Just glass. So that presumably includes glass jewellery does it Mr Security Guard? No, don't look at me -- these are your rules not mine. Okay, if they are allowed, how about bracelets? Small dishes? Sushi platters? Chandeliers?

The fun police will also dispossess you of any banners in your possession or flags with poles longer than a metre -- you know, the kind of thing sports fans take to ball games. That's right. The same goes for vuvuzelas, rattles and horns. Actually I'm with them on the vuvuzelas.

No animals either, apart from the usual guide dogs. To be honest, it had never crossed my mind -- until now -- to take an animal to a football game. But now you mention it, I can see the possibilities. Already I'm formulating a plan to sneak Monty the iguana into the ground dressed as an ice cream vendor. And I can't wait to see how the locusts go down.

But this one really is a sign of the times -- there is a blanket ban on laptops and laser pointers. Indeed. Now I spend more time than most in front of a computer screen but even I suspect I can get through a couple of hours of football without recourse to PowerPoint. I mean really -- not even Bill Gates would take a computer to a sporting event.

My favourite prohibition is probably the blanket ban on pool and beach equipment. No beachballs are allowed near the hallowed turf. And goodness knows what the security guards would make of rubber rings, lilos, dinghies and inflatable crocodiles. It's nearly November -- who on earth is thinking about pool accessories four days before Halloween?

And you're not to bring hairspray with you. Now I don't want to trigger a gender war here but I'm prepared to bet that most of the crowd at this game will be male. And, whilst just about plausible for the fairer sex, I struggle to believe that there will be any male hair grooming emergency of sufficient severity as to require the immediate application of hairspray. Call me old-fashioned but I am prepared to bet that they will not be a single man travelling to the game with a can of hairspray about his person. In any case there is no room in his pockets -- they're full of dynamite.

Incidentally there is also a ban on pepper spray and mace. Probably wise -- you wouldn't want to confuse that with hairspray.

But I've saved the best till last -- Wembley has, believe it or not, a ban on footballs. Understandable really -- I mean who would want to see a football at Wembley...

Saturday, 19 October 2013

Anton's cat

When you reach my age, birthdays are less a cause for celebration than for surprise that one is still around.

It was my birthday yesterday and my daughters particularly excelled themselves this year, finding ever more creative ways of telling me that I'm old. Catherine's card, over a picture of a particularly lugubrious Bassett hound, bore the words "Another birthday and another year older -- it's hard to keep the joy and excitement under control" while Alice's contribution read chillingly "In dog years, you're dead".

If you take my birthday as beginning when my daughters handed over their birthday cards, then my birthday had technically started on Wednesday when I met the girls for a meal in London, as we do from time to time.

The deal is very straightforward. The girls invite a parent out for a meal. All eat. Parent pays. Despite the certainty, I've noticed that there is nonetheless a certain etiquette to be followed at the conclusion of the meal. Although it is tacitly understood that the parent will pay (they are after all penniless students), we still go through the fumbling-around-in-the-handbag-because-we-will-split-the-bill ritual before the parent offers to pay. This is of course followed by the oh-well-if-you're-absolutely-sure ritual of feigned surprise. Occasionally, a peck on the cheek and the you're-the-best-mum/dad* (*delete as applicable)-in-the-world ritual brings matters to a conclusion.

I am met at Charing Cross station by my daughters, Alice wearing a new dark lipstick that lends her a certain Cruella Daville mien. But when it comes to scary, I can top them all. Somehow earlier in the day, and largely unbeknownst to me, I have managed to burst a blood vessel in my right eye and, whilst it does not cause me any particular difficulty, does tend to unsettle others. In fact, the whole eye is red to the point where I look one of those Tory scaremongering election posters about Tony Blair. Catherine has a sharp intake of breath when I look up from my newspaper before telling me that I look like Scar from The Lion King.

On this particular occasion, and presumably because my daughters find themselves especially hungry, we go to an "all you can eat" sushi bar in Covent Garden where we eat -- well -- sushi, washed down with plum wine and sake. Incidentally, all-you-can-eat is not very much with sushi. Despite the fact that it looks like little more than a few bits of rice glued together with wallpaper paste, it doesn't take many nigiri, sashimi or kakinoha to fill you up.

That was Wednesday. My actual birthday, Friday, had been set aside for filming. We had to prepare publicity films for a forthcoming patient meeting. Eros, our video expert, takes one look at me and shakes his head. "There's no way we can film" he says "you look like a zombie with that eye". I draw his attention to the fact that the broadcast will be going out on Halloween and suggest therefore this is less of an issue. He is unmoved by this argument and is already packing up the studio lights before I can reason further.

It is not long after I arrive home that Freia appears, bearing gifts. She has abandoned her brother to monopoly with the kids and turns up with a rather fine bottle of Tokai, one of my absolute favourite dessert wines, and home-made biscotti. Claire opens a bottle of wine (mercifully not the Tokai) and we set about rectifying the world's problems. Not least of which is Anton who, despite intending to take a half day on Friday, is still at home at nine o'clock.

I'm still not quite sure how the idea originated but somehow it is mooted that, as a special birthday treat, I might like to drive Anton's Jag to pick him up from the station. Bear in mind that I have not driven the car before and will be driving it on my insurance, I suggest that a little familiarisation might not go amiss. Amazingly Freia agrees and we take the beast for a snarl up the dual carriageway.

It has to be said that the beast is a wonderful thing to drive. Especially on the open road -- you always have the sense that it is champing at the bit in town but, once out on the dual carriageway, it can -- how shall I say -- express itself a little better. It is beautifully poised and enormously powerful -- I ought to know since I persuaded him to buy it. It is with some reluctance that I drop Freia at her house and head to the station to pick up Anton.

Top birthday present.

Thankfully Anton's eyesight is good enough in the darkness to realise, before kissing me, that it is not his wife at the controls.

Sunday, 13 October 2013

Waistline v Wardrobe

In the war being waged between waistline and wardrobe, it is increasingly clear that there will only be one winner. I came to this stark realisation about a month before Montréal. In a rare episode of self organisation, I decided to check just how many of my trousers actually still fit me.

The sensible answer that question should of course be all of them. If they are in the wardrobe then, by definition, they should fit you, right. Unfortunately in my case, my reaction to increasing girth (and therefore decreasing available clothing) has always been to retain the clothes on the spurious grounds that I will, one day, slim down enough to wear them again.

Leaving aside the absurd overoptimism of this philosophy -- my weight increases as inexorably as the tides come in - there is the question of fashion. Anyone who's ever met me knows that I am not prey to the vagaries of fashion but, even if I were able to slim down sufficiently, there is little point in squeezing unwilling flesh into bell bottom jeans and flower power shirts. Unless of course I want to look like a pimp. Or audition for Starsky and Hutch.

There are garments here my mother made me.

And if I was too fat to fit into them in 1978, the chances of me achieving that objective in 2013 are approximately one divided by Avogadro's number. Unless I ever wish to mince down the street looking like the love child of Huggy Bear and Jabba the Hutt, the clothes have to go. And I'm amazed to discover that even charity shops draw the line somewhere. Oxfam have stopped returning my calls.

The last time I had a wardrobe clear out, I mistakenly asked my younger daughter Alice, sharp tongued fashionista that she is, for assistance. By the time she was finished, 90% of my clothing was in the bin. The rest was on Facebook. And my entire remaining wardrobe consisted of little more than a pair of Y fronts. It felt like a mugging.

Anyway, to cut a long story short, I decided that I needed a couple of suits, for Montréal and beyond. And rather than risk seeing them appear at some future point on Alice's Facebook above acronyms like LOL and LMAO, I settled fleetinglu on classic English tailoring before a quick shuffle round Austin Reed and Marks & Spencer swiftly dispossessed me of that notion. Classical though their suits were, they appeared at first sight to be priced in Italian Lira.

And then I had a brainwave. Why not try eBay. After all, everybody on the planet seems to be selling stuff to everybody else on the planet. Somebody somewhere must be selling a suit or two that would fit the bill. Certainly Claire, my wife, seems to think so. New dresses arrive practically hourly. And many, I have to admit, look pretty good.

The key to eBay, I've learnt, is to bid and forget. Tap in the highest price you are prepared to pay, click 'send' and forget about it. If you start to monitor the price shifts, you will find yourself quickly paying more than you intended. It's human competitiveness in action. The same misplaced enthusiasm that annually plays havoc at the Harrods sale. Just click and go. Sometimes you will win, sometimes not. Shrug your shoulders.

I placed what I thought were relatively derisory bids on a few clothes items with short deadlines and, later that day, found myself the owner of a dark two piece Next suit for £10 and, best of all, a beige/cream linen suit for the princely sum of 99 pence. Both fit nicely and the linen suit especially works well -- very much the Englishman abroad. A sort of 'Our Man in Havana' look minus the panama. And the gin and tonic.

Buoyed by my success, I also picked up a pale duck egg blue linen jacket. Although it looks excellent, even on me, I'm not sure it will stay. Catherine said it looked "pretty fly" while Alex gave me a wink and said I looked like "a player". Alice has yet to pronounce judgement.

Should I be worried?

Friday, 11 October 2013

Plain speaking

Montréal was a remarkable epiphany for many who attended. Particularly among the patients but also, if a little less obvious, among the researchers, there was a genuine sense of community, a perceptible family bond. There was the feeling that we were each looking out for each other. Many of us vowed as much. And although we arrived as separate groups, within three days we were one tribe. A feast of friends.
Parkinson's is a notoriously variable condition with some barely noting deterioration year on year while other less fortunate patients seem to be plummeting toward akinesia. And the speed of progression can vary even for any one individual. Whenever people with Parkinson's meet, they invariably ask two questions. First, "when were you diagnosed?" and, secondly, "what are you taking?". And these questions are loaded. They are to help you establish whether your interlocutor is doing better or worse than you. In other words to provide reassurance to the questioner. It doesn't always work. I lose track of the number of people who have had the condition a decade longer, yet appear ready to face an Olympic decathlon while I struggle with the 25 m waddle.
In Montréal it was both reassuring and alarming to see the extent to which some friends had changed. Or not. And I'm not talking solely about motor symptoms. Montréal had it all -- people who were unmedicated and others who were popping pills like going out of fashion. For every well-controlled, carefully managed Parky, there were at least as many who were either accidentally or deliberately making life needlessly difficult for themselves.
This brings me to my point. And if I can couch this in the form of a question, it is this: how long should one stand by and watch friends harm themselves either by refusing medication or overdosing? Should I stand by and let my friends destroy themselves or should I risk their friendship and intervene?
Maybe you take the view that it's their life and I have no right to impose my thoughts upon them. Perhaps you're right.
But perhaps also that's the coward's way out. A way of justifying your inaction. A way of making you comfortable with your refusal to grasp the nettle.
It's not a simple matter. Have you ever tried to make a delusional, obsessive, impulsive man realise that popping dopamine agonists like Smarties does not make him the life and soul of the party. It makes him a junkie. The last decade has shown us clearly the dark side of agonist abuse. And it can take you to some pretty dark places.
At the other end, what do you do with a friend whose stubborn refusal to take medication is quietly killing him. When I was diagnosed in 2006, the jury was still out on whether early medication had any advantage. That's changed. The old days of "wait-and-see" are gone. The scientific data now overwhelmingly shows that early medication improves quality of life and that if you delay, you will never catch up. By the time you decide to take medication, there will be no benefit left. The horse will have bolted.
I've been wrestling with this all night. Is it any of my business? Do I say nothing and watch this wilful self-destruction? Or do I of speak out, and lose their friendship? Do I value their friendship above their lives?
I'll let you know.

Wednesday, 9 October 2013

The canine Carol Vorderman

There is a wholly understandable propensity among pet owners to ascribe incredible feats of bravery or intellect to their pets.

I have to say that I'm more inclined to believe the former than the latter. Dogs for instance can be quite extraordinarily bonded to their owners, dragging them clear of burning cars or protecting them from other animals. Horses will literally run till they drop for their owners and even cats can be persuaded to show behaviour that passes for affection, at least to the untrained eye.*

In large part this is an evolutionarily sensible trait. Domesticated animals are doubtless aware in some form that their destiny as a species is inextricably linked to that of the species that domesticated them -- that's us by the way. Do try to keep up at the back. Or, put more simply, they knew which side their bread is buttered. In purely Darwinian terms, they are looking to back the winner.

Alex told me yesterday of a sheepdog he has seen on television that can perform simple calculations. Briefly Bonzo hears the calculation, say two plus one, and taps his forepaw three times. Bonzo can also do simple subtraction. Although in fairness, he never gets square roots right and is rubbish at long division. He's no Pythagoras. Still, within limits, it's fairly impressive.

Our own dog, the otherwise profoundly dippy Louis, excels mainly in feats of gymnastics. He stands on his hindlegs with ease and enjoys a sort of dancing/boxing from that posture, although he is no Muhammad Ali. Unless you can imagine Ali in a tutu. Or Dame Margot Fonteyn in a pair of Lonsdale boxer shorts.

Float like Madam Butterfly, sting like a BeeGee.

Still, Louis proved his mathematical prowess earlier this evening. I was late feeding him supper and decided to give him one cup of biscuits rather than two. He put his head on one side and raised one eyebrow in quizzical disdain thus proving one of two things -- either he can count to two or he is the canine reincarnation of my mother.

*Before you bombard me with pro-feline hate mail, please bear in mind that I am -- mainly -- joking. I am sure there are dozens of cats that are genuinely affectionate.

Tuesday, 8 October 2013

Leopards and spots

Conferences have changed over the years. Back in their heyday, conference delegates would be showered with expensive enticements, gifts and so on. Rolex desk clocks, Gucci conference bags, Mont Blanc fountain pens. That sort of thing. Okay, I exaggerate but there was still a culture that regarded expensive desk paraphernalia as a the way to a physician's prescribing of their medicines.

I was a scientist rather than a clinician in those days. And even then there was a caste system. I remember a medical congress in Venice couple of decades or so ago where I was presenting some data from a study sponsored by a drug company. The basic scientists flew cattle class and stayed in a B&B on one of the more stagnant canals while the clinicians, arriving first class, were wined and dined at the Cipriani. A fleet of water taxis took them to and from the Congress. We were given a weekly ticket for the vaporetto.

 Nowadays it's different. So tightly regulated is the industry today that pharmaceutical representatives cannot speak to their target audience without first obtaining the kind of security clearance associated with piloting nuclear bombers or attendance at a White House dinner.

A friend of mine (and I digress here) once went to a White House dinner or Capitol Hill reception -- I forget. His overwhelming memory was of the sunglassed security guards and the overwhelming sense that all they wanted to do was shoot you. They were just waiting for a cue, any cue, that would allow them to empty the magazine of a submachinegun into you.

Times have changed. And I for one think it's for the better. But it's amazing how long the old perceptions of pharmaceutical companies persist. There is still somehow the notion that a leopard cannot change its spots. The perception that, left unregulated, the industry would revert to the old ways.

I don't buy that. Not only are those practices gone, so are their proponents. And this coincides, in my opinion, with the rise of patient power. Patients are the new opinion leaders. We may not yet be on equal footing but that will come. And patients are no mugs. As the ultimate stakeholders, our opinions cannot be bought by carriage clocks, cases of wine or sides of smoked salmon. We want treatments, pure and simple. And, as so often, the patients have been the catalyst of that change.

Ironically, patients are in many ways the most adversarial group, the lobby least likely to acknowledge its success. Many still remain unable to recognise that pharma has cleaned up its act and persist in bleating the same old "four legs good, two legs bad" dogma. We are perhaps our own worst enemies when we cannot recognise our own successes. The words 'pissup' and 'brewery' come to mind.

Thursday, 3 October 2013

What I said

Yesterday, I  had the honour of opening the scientific sessions of the WPC, as I stood up to begin the plenary session. Many since asked me for a copy of what I said.

So here it is:

Welcome to the first plenary session of the Third World Parkinson congress. Bonjour tout le monde Parkinson et bienvenue a Montreal.

I’m Jon Stamford and it is my pleasure to co-chair with Prof Tom Gasser this session on why specific neurons die in Parkinson’s and what can be done about it.
I am a neuroscientist by training. But, since 2006, I'm also a person with Parkinson's. And it’s in this capacity that I have been asked to say a few words on behalf of the patient community and also to the community..

Last night, Bob Kuhn mentioned hope in his opening address. For me, science is the practical embodiment of that hope. Science is the expression of aspiration. Science is the vocabulary of hope and science is the roadmap to victory in this war on Parkinson's.

And this is a war. Make no mistake. For many of us with Parkinson’s, this is a very real fight to the death. But you also need to know one thing. This is a war that our enemy cannot win. We will prevail. It's not a case of if we win, it’s a case of when we win. 

And this is not a fight for others to win on our behalf. This requires a very real and personal commitment. It requires us to fight every inch of the battlefield for every minute of the battle. We fight for ourselves but also for our brothers and sisters who can no longer fight. And we fight for those who do not yet know they will have to fight. And know this - the scientists stand shoulder to shoulder with us in this fight.

I firmly believe that we will be the generation that will see Parkinson’s beaten. And it is conferences like this with its wonderful span of the whole community where we will find those insights.
WPC is special. There is a buzz. There's a sense in the air that something is going to happen there is something we will make this conference memorable. It may be the company of good friends, the new scientific discoveries or new clinical trials. But this congress will not leave you unchanged.  And maybe, just maybe, this conference will be the one that sets us on the road to a cure.  

The title of this session is a distillate of everthing about Parkinson’s. So today, we have four superb speakers who will report from their part of the battlefield

Tuesday, 1 October 2013


Now I'm not normally one to be gushing, as you know. But there is something special about the Parkinson's community that goes beyond friendship. And there is something special too about actually meeting people face-to-face even if you know their faces from the Facebook profiles or from Skype. Yesterday I met Jill and Israel for the first time in the flesh – although we have worked together for ages – and there was a genuine sense of meetings a long lost brother or sister. We hugged for what seems like an eternity and I honestly think we were all close to tears.

And in a way that emotion is understandable. We are soldiers fighting in the same cause. And it's not an exaggeration to say that, in a very real and tangible sense, we are trusting each other with our lives. I think anyone would be emotional. 

Early in the morning I ran into Bob. Bob and I go back to a period before the last WPC. And it was great to see him again. I've always thought we have a particular special friendship. Again, as I've said elsewhere, there is a bittersweet feeling about meeting old friends. It's great to see them again but painful to see how the condition is taking grip. 

And Bob is no exception. His tremor is worse and I don't doubt for one second he must've felt the same about me. We both resent in our own ways what the condition has done to each other. We went for a walkbefore the policy forum started and I was increasingly reassured, as we spoke, that the new shakier Bob is still the same man underneath. Still positive, still strong, and more than anything, still thinking about the ways in which he can help. We traded family news, congratulated, commiserated and continued. 

And yesterday was in some respects where the battle began, with the Policy Forum – an arena for us to look at the global impact of Parkinson's and to put it in context as a health burden of the next decade or so. And at the end of the day we letterhead down a little – those of us that have had to let down – with a rather fine dinner. I was lucky enough to be in a seat  between Lizzie Graham, the driving force behind the EPDA, and Bas Bloem, the doyen of Dutch neurologists. Funnily enough we talked sport mainly and finally both agreed that the best international goal ever scored is by Marco van Basten in 1988. 

This is why we have these conferences. 

Monday, 30 September 2013

A definite buzz

It's five o'clock in the morning and I've been awake since three, one of the more discombobulating dimensions of international travel. But before you get the wrong end of the stick and feel that I'm about to parade a sundrenched holiday in the Seychelles before you, let me assure you this is business.

I'm here in Montréal for the Third World Parkinson Congress, a triennial gathering of all the great and the good in the fields of Parkinson's. That's everybody from the top professors down to, well, us lot in the trenches – people with Parkinson's. It' a time when the entire. community pulls together. The congresses are infrequent enough that each is special yet still sufficiently closely spaced that delegates remember each other's names from previous encounters. Rather like a shaky version of Oberammergau I imagine.

It's fair to say that I have never been so excited about a scientific meeting before. Not even when I was an active scientist rather than the muttering  Brando-esque "I could've been a contender" figure you see today.

The last meeting in Glasgow was life changing and to be honest I think people expect nothing less from this one.

But this meeting is different from its forerunners. I've only been here a matter of hours but there is already the feeling of something in the air, the notion that something is going to happen . Nobody is sure what. Just something.

Will it be a new scientific breakthrough announced? Maybe some huge new understanding of the pathology of Parkinson's? Or perhaps a greater communication between the patients and scientists of what it is like to experience this condition? Nobody knows yet. But that buzz is definitely in the air. And the sense that maybe, just maybe, we the patients will leave this congress with genuine scientifically-founded cause for optimism rather than blind hope. Would that be too much to ask?

Monday, 23 September 2013

The gene genie (Part 1)

When it comes to genetics, there really is nowhere to hide. Your genes speak more eloquently about you than a Times obituary. Everything that makes you you and me me (sorry, this sounds like a giant panda mating) is encoded in our genes. They can even make educated guesses on how we live and die.

As my regular readers know, I have had Parkinson's for the last seven years. I was diagnosed at the age of 49 which, although not in any way unique, is still a relatively young age. Young enough that you might reasonably suspect some predisposing factor to be at play. Such as genetics for instance.

Over the last decade or so, we've learnt a lot about genetic involvement in Parkinson's. Although the overwhelming majority of cases are classed as idiopathic, a fancy word meaning that we don't know the exact cause, a small proportion are less enigmatic. In a small proportion of cases, there is one or more genetic risk factors.

Current thinking, and I won't bore you with the scientific details here, suggests that there is somewhere in the region of 15 separate genes where mutations will increase the risk of developing Parkinson's or speed its progression. In the worst cases, mutant genes can treble the odds of developing Parkinson's. The resulting conditions are, in essence, forms of genetic Parkinson's. As I said, these subtypes are rare, affecting only the small proportion of people. But this proportion of genetic Parkinson's is higher among the young onset group of.

Now I don't delude myself for one second that forty nine is young or in any way in the first flush of youth. But it still, if I'm honest, rankles that I should have got Parkinson's ahead of the crowd. Let's face it -- this is not a queue that anyone wants to jump. So, at the back of my mind is the thought that there might be some genetic component to my Parkinson's.

Maybe, I reason, I have one of the genetic forms. The odds are against it but it is the least possible.

Does it matter? Well, in the grand scheme of things and if I was the only person concerned, it probably doesn't. You shrug your shoulders and get back to the Times crossword.

But it isn't just me. Genetics in this context touches two important aspects of life -- the genes that we receive from our parents, and the genes we pass on to our children. And to put the thing in a nutshell, my biggest worry is not whether I have a genetic form of Parkinson's. It's the kids.

When I 'came out' about my Parkinson's, all the children separately asked two questions:

"Are you going to die?"

"Will I get it?"

The first one is easy, maybe too easy. No, the Parkinson's will shorten my lifespan a little and certainly make it rather more challenging, but it will not kill me directly, at least not over the kind of timeframe they feared.

The second question is harder to answer and, in the absence of any definitive reply, I trotted out the old statistics -- that fewer than one in 10 have a genetic form of Parkinson's and therefore a form that can be inherited. In other words, it was highly unlikely that they would 'catch' Parkinson's from me.

For a long time that seemed a satisfactory response. Either the children were satisfied or wanted to be satisfied. Or reassured. And in 2006, that seemed a reasonable position to take.

But that's the problem with truth -- it's an absolute. Truth doesn't deal in probabilities. At the end of the day 'highly unlikely' is not the same as 'definitely not'.

And truth gnaws.

What starts out as a vague feeling that it would be nice to know one way or the other becomes, in the fullness of time, an overwhelming need to be certain. A need to find unequivocal reassurance or to know with certainty how deep is the abyss.

I've always believed in serendipity. And I was thinking on the subject of genetic testing a couple of months ago when I stumbled across an ad for 23andme. As many know, they offer a service, for a price, that will tease your genome apart and look for these dodgy genes, in amongst the other genetic dross of course.

The service comes to around £100 per genome, the price of three quarters of a tank of petrol for the Jag, a week's shopping or maybe a dozen CDs. So, in relation to the amount of information to be gathered, a trifling sum. And such is the speed of progress in this field of science that projects to sequence the entire human genome, initiated in 1990, were projected to take around 15 years and cost about as much in real terms as putting a man on the moon. It tied up huge research laboratories and occupied some of the finest minds in science for a decade. It was Big Science.

Now, a little over a decade after the sequence was announced, the technology exists to offer it as a simple test, in the same way you would test blood cholesterol for instance. Even as little as five years ago this would have necessitated a second mortgage. The speed of progress is breathtaking. And at the risk of sounding like a commercial, it's piffly easy. The company sends a plastic container, you spit in it, seal it and send it back to them. 4 to 6 weeks later, you get an e-mail saying your results are available online. And you also receive a much longer preparatory explanation to the effect that this is big league stuff. You might not like the answers provided by your genes. It's a case of 'open at your own peril'. And bearing in mind that we are potentially looking at life changing illnesses, the caveat is probably necessarily sobering.

There is no counselling offered. Nothing to sweeten the pill if necessary. You are very much on your own. They say as much.

My e-mail arrived three weeks ago. I read the disclaimer and thought for a second or two whether to login or not. What would the report show? Was I even remotely prepared?

In any case, you can never get the genie back in the bottle.

I took a gulp of coffee and clicked the link.

[Check into the next blog to read about the results].

Thursday, 5 September 2013

It's a jungle

Ocean waves or tropical rainforest?

And no, this is not the first question asked by the family to help triage potential holiday destinations. Nor is it the kind of fanciful name popular with shampoo manufacturers. Nor even one of those "if you can only save one of these, which would it be?" questions so popular with bearded environmentalists. Having said that, I should tread carefully since many of my friends are indeed bearded environmentalists. And that's just the girls.

Joking! You know I'm joking -- don't give me that look.

Anyway, having managed to alienate half my friends within the first paragraph, let me try to entertain those that still tarry. Eventually of course I shall find there is nobody left to offend. Will the last reader to leave please switch off the lights.

I sleep very badly. This has been a problem for nigh on a year now. Without bandying needless statistics, it's estimated that perhaps three quarters of all people with Parkinson's have disrupted sleep in some form or another. So I'm not alone. Nor am I alone in seeking nonpharmacological solutions to the problem (nonpharmacological just means no drugs, but why use two syllables when seven will do).

My friend Cloud had an idea. And no, that's not her given name in case you were wondering. Were she born in the 60s, such a thing would be understandable. This after all was a time when every other child was called Butterfly, Pixie, Moon Shadow, or Unicorn Tears. Cloud was born three decades later, when girls were Jessica, Ashley, Brittany, Kayla or Courtney. But I digress.

Cloud suggested something called an iPillow or similar. Now I've tried all sorts of pillows beneath the Stamford bonce -- neck support, orthopaedic, memory foam, etc. None work for me. But the iPillow is different. It has a speaker and plays subliminal environmental sounds while you rest. These sounds, Cloud told me earnestly and with a much straighter face than I expected, could be waves crashing on the beach or the sound of birds in a tropical rainforest.

As regular readers will know, this is exactly the kind of product that raises my hackles. Normally I would have dismissed it out of hand with a withering arch of the eyebrow. But on this occasion, and it is probably a mark of my desperation, I decided to look into it. When I found one on Amazon, reduced by 60% but accompanied by five-star reviews, I took the plunge.

The said iPillow arrived yesterday afternoon. The thing is easy enough to use and with the investment of a further 69 pence on a CD of restful sounds that I could loop all night, I went to bed in optimistic mood.

"What exactly is that, Dad?" asked Alice with the same arched eyebrow. I explained the theory about restful sleep as the eyebrow headed further north.

"Okay" I said "which should I play -- waves on the shore or tropical rainforest noises?"

"Well if you play the rainforest stuff, you'll spend the whole night listening out for jaguars and anacondas...." she said.

"Then beach sounds it is" I said.

"As long as you're not afraid of sharks" she smiled

I checked the label on the Tranquil Nature Sounds for Meditation CD. It said nothing about listeners being crushed to death by snakes or devoured by sharks. I decided to chance it with the "Bird Calls in the Jungle" track. After first checking under the bed for predatory wildlife....

I woke up this morning at my usual hour -- around 4:30 am. But this time I managed to get back to sleep to add a further two and a half hours to my tally. I was impressed by how realistic the sounds were. And somehow transmitted through the depths of the pillow, they were softened too. The soundtrack itself had everything -- parrots, monkeys, and any number of insects. The mosquitoes were particularly realistic. They could have been in the room with me.

Only as I pulled on my pants did I realise that the mozzies were more than just realistic. A long trail of reddened blotches bore witness to their presence.

I counted the bites. Seventeen.

I've been eaten alive..

Sunday, 18 August 2013

The Shark

It's Friday and Anton and I are heading to Hertfordshire on a mission. To buy a new car for Anton. I am going along in my role as friend and, because I have owned two Jags, as 'expert advisor'. Because Anton is not just going to buy a car. He is planning to buy a Jaguar XK coupe. The classic grand tourer. And although second-hand, this is still a financially ball-busting purchase and needs to be handled properly.

In any case the fact that this trip is taking place at all is partly due to me. I have felt for some time that Anton needed a Jag and have told them so. It has to be said that what I consider gentle persuasion, pointing out the many interesting features of the modern Jaguar, Freia perceives as a sustained and subliminal war of attrition. An attempt to turn her husband to the dark side of motoring. Personally, and considering that Anton once bought a Fiat Multipla, I see this more in terms of motoring salvation.

"But I liked the Multipla" protests Anton "people used to wave at me".
"Yes" I say "there are reasons for that".

I should say immediately that Anton and I have very different approaches to car buying. Take the occasion when I bought my present car. Jag 1 was crashed at 8:30 AM, written off by the insurance at midday. Jag 2 was test driven at 5 PM and bought at 5.30 PM. Let's just say I don't like to let the grass grow under my feet.

Anton on the other hand (and this may have something to do with why he is wealthy and I'm penniless) is Dossier Man. He is the same with jobs, holidays etc. He believes in doing his homework and making sure that nothing is left to chance. In fact the complete opposite to me, Impulse Man. Strangely, we get on brilliantly and have done for years. But that's friendship for you -- no rhyme or reason!

I phone Freia on Thursday evening to check that Anton is still up for this trip. He is, and according to Freia, has produced the kind of dossier that would shame a government quango. What feels like every Jaguar XK in the south-east of Britain has been subjected to Anton's eagle eye. No detail is too trivial to be entered in the database. And as if printing a rainforest of literature is not enough, there is also an Excel spreadsheet of a size associated with Third World debt relief. Anton has excelled himself. For what seems like every Jag in the Southeast, Anton has information. He knows how many miles it has done, how many owners it has had and which extras the car has. We're talking numbers of cupholders here. Everything is logged.

I turn up at their house, as agreed, at 10 AM. Freia opens the door with the world-weary look of a woman who just wants this to be over. "Please don't let him return without a car" says Freia, now reconciled to the inevitable and, in any case, increasingly worried about the ongoing deforestation in their household.

"No problem" I say "we're 80 miles from the showroom, we have a full tank of petrol and we're wearing sunglasses". Freia gives me one of her "whatever" looks, clearly missing my Blues Brothers reference. Anton makes two espressos and we sit down over the dossier and spreadsheet. He is keen to compare his short list (of about 20 cars) with mine (about two cars). I take the view that this is rather like Blind Date and that we should go and see the cars for real. Hear them roar, see them glint in the sunshine, smell the leather.

Eventually we have married up shortlists, and are on the road. At a snail's pace. This is the worst I have seen the M25 in years and by the time we arrive at the garage, we're much later than we had expected. But the garage itself is Jag heaven -- an independent retailer specialising in high performance Jaguars. If we can't find a car here, there is no hope.

Anton's eyes dart hither and thither. "Just stick to your guns" I say "remember what we came for". The salesman largely lets us be. No high-pressure sales here -- he knows these cars sell themselves. He starts up a few cars and boy do they sound good. We wander round the forecourt, sit in several, rev up a few and finally pick the one we wish to take out on the road. It is a brute of a car -- metallic charcoal grey, with shark gills on the side, brushed aluminium interior and just enough space in the boot to fit two cricket bags.

Getting the car out onto the road proves quite a challenge. Rather like one of those puzzles where you can only move one square at a time, the salesman shuffles XKs and XJs until he has finally liberated The Shark.

"You know something Jon "says Anton as we sit ready to testdrive the car "I've never driven an automatic before".

I quickly run over the salient points and Anton is good to go. Fifteen minutes later and his mind is made up. Actually, if the smile is anything to go by, his mind is made up the moment he presses the start button. Half an hour and a bit of forthright financial negotiation later, Anton signs on the dotted line. The car is his.

The M25 is even worse on the way home. We eventually return to base around seven. Anton is babbling. He is one happy bunny. While Anton jabbers on about the car, Freia opens a bottle of wine and puts a portion of soufflé in front of me.

"Thank you" she says.