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.