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.

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

Bonds

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. 

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?

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].

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..

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.