You're a pretty clued up audience about Parkinson's, and I think you've been told in your programmes
That I have Parkinson's
But supposing we could take 400 people off the street
And bring them in here without the context of Parkinson's
What do you think you would make of the individuals standing before you?
Middle aged man - not carrying too much weight, looks reasonably fit, perhaps an athletic type?
If I told you I was 68 in a couple of days time, you'd probably think - well, he's not too bad for his age
Looks after himself, not much wrong with him
And that might be your instant judgement on seeing me for the first time
And of course all of that is superficially true
But you, or a good many of you in the audience will know
That it's not quite like that - there is another side
There's the bit that the casual observer does not see
He doesn't see the bit that sees me thrashing about in bed at night because my legs won't settle down
Or they're wrecked with cramps
They won't see me in the morning faced with the pain of getting up
And exercising to try and get those stiff and painful limbs moving
They won't see the bit that sees me shuffling around the house until the first of the days drugs kicks in
And I can make a reasonable attempt at shirt buttons or show laces
They won't see the mixture of drugs that help to keep me stable for reasonable periods
The drugs to treat the Parkinson's
Drugs to treat the unwanted effects of the drugs that I take to treat the Parkinson's
Drugs to control the violent nightmares, medicines to stop the bowels seizing up
And pills to help me control my bladder
All the things that are critical, really, to getting me through the day
And sustaining me more of less like this
And so far it's worked for me
My wife says it's like waking up with an old man who gets younger through the course of the day
(Laughter)
Unfortunately, it doesn't last (laughter)
she goes to bed with the same old man that crawled out of bed in the morning!
(Laughter)
But despite all that I've had a pretty good run in the 13 years since I was diagnosed
But what of the future?
Well, things are starting to kick in for me
Driving is pretty nearly gone, I'm at the point of giving that up
My reactions and awareness are failing quite quickly
I'm starting to get freezing of moment and many of you will know what that's all about
There are times where I can't seem to think about what to do next
If I drop a cup or a glass I feel rooted to the ground whilst other people clear up the wreckage around me
Balance is failing - I had a couple of heavy falls and I don't seem to be able to react quickly enough
To recover from a trip or to protect myself on the way down
I'm getting the initial signs of dyskinesia, and I'm starting to experience some cognitive problems
I could go on
The truth is that Parkinson's is an insidious and destructive condition
Which saps ones energy, ones independence, ones freedom of movement, ones ability to communicate
Even very simple things, like joining in a lively conversation
It's gone before you've thought of the words and want to come in
Or kicking a football around the park with your grandchildren
It doesn't take away your life, but it does take away your pleasure in living
And it is relentless - everyday it wants a little bit more from me
So it's a battle, a challenge that takes place in this body of mine
To try and get through each day without getting worse
To try and do today what I could do yesterday
That's what someone with Parkinson's wakes up with every morning
And fighting that battle - day in, day out, week in, week out, year in, year out - it's wearisome
And it's not surprising that people get fed up with the battle or lose the energy and the will to keep fighting
Now my friends and colleagues know that I rarely talk about my own Parkinson's symptoms
Not for any other reason than I do not want to be seen through the prism of Parkinson's
But as a person I don't want to be seen as a 'person with Parkinson's', but just as a person
In an ideal world Parkinson's should not be the first thing that people find out about me
Rather it should be the last
And if somebody says to me, having met them for the first time and had a conversation with them
At the end says "gosh, I didn't realise you had Parkinson's" I think yeah, result!
So why have I gone about it this evening?
Because I wanted to put the reality of the challenge people with Parkinson's face
Alongside the hope that research brings perhaps for us, and certainly for the future
It's the light at the end of the tunnel
And as I wake up every morning facing the challenge of getting through the day with my Parkinson's
I can reflect that all other the country, and indeed all over the world, there are researchers waking up to their
Daily Parkinson's challenge. Going to their Universities, their institutions, working in their labs, experimenting
Writing thesis, conducting clinical trials, testing new hypothesis
People seeking to get a step nearer to a complete understanding of this strange set of symptoms which I've described
People for whom their daily challenge is to take a step nearer to a better treatment, or closer to a cure
When I visit research establishments I always have a mix of emotion
I have a sense of humility - people are devoting a huge range of skills, time, knowledge, even entire careers
To understanding the strange condition which I have
I have a sense of wonder at the things they can do
If I'm honest it's mixed with a sense of impatience
These people are so clever, they know so much, they have fantastic equipment
Why is it so difficult to reach out and pluck down that cure?
I don't know
But most of all I come away with a sense of hope
And I know that behind all that research an army of people - organisations and individuals
That are equally passionate about finding the answers and encourage and support that research effort
And just as Parkinson's is relentless, really, in it's assault on those unlucky enough to have it
The progress to a complete understanding, and ultimately a cure, is equally relentless
Yes, there's impatience to do it quicker
But slowly and surely we will get there
And what a legacy to pass on to the next generation - just think of it, a world free of Parkinson's
Think of all the needless suffering that would alleviate
And to be part of it, to be able to say "I was there, my research contributed to that" or "I helped to make it possible"
My 3 year old granddaughter came up to me a few weeks ago and said
"Bob-oops, why do you walk like a penguin?"
(Laughter)
Well, I had to say "that's a very good question."
"I don't know, but there are lots and lots of very clever people trying to find out"
But wouldn't it be great if her children didn't have to ask the question?
Well, we've heard tonight about some of the key steps in pursuit of that objective
All of which reinforces my sense that we are making real progress
And events such as this which bring together key players, leading academics and researches, and our supporters
And people with Parkinson's, are an important means of sustaining that momentum
And I'm delighted to say there are 2 more such events in the diary
There's the Gretschen Amphlet Memorial Lecture in Cambridge on the 14th of April
And the Ian Fowler Memorial Lecture in Manchester on the 13th of May
And we're really grateful to the families of Gretschen and Ian for making these events possible
And if you'd like to find out any more about any of them then please approach one of the Parkinson's UK staff
As for this evening, I would like to thank our lecturers Alison Noice and Michelle Hew and to wish them every
Success in their research
(Applause)
Thanks very much. Thanks also to Steve Ford and to Arthur Roach, our new Director of Research
And thanks to all the team with Parkinson's UK who've helped to make this event possible
Thanks to you all for coming, thank you for your interest
And thank you for your support - have a safe journey home (applause)