I received a clear brief for this speech. The brief was ‘be brief’. Well being brief is not really what people with Parkinson’s do well. We tend to be rather slow so bear with me.
By any standard, James Parkinson was a remarkable man. We tend to think of him as a medical man but his early interests were elsewhere. He was particularly interested in palaeontology and geology. He was even elected as a fellow of the geological Society and published several books on dinosaur fossils.
Another major interest was politics. He campaigned strongly for universal suffrage for instance, years to decades before it became accepted. And there is some evidence that he was involved in the 1794 attempt to assassinate King George III, which became known as the popgun plot, an attempt to fire a poison dart from a popgun. It’s the kind of thing that sounds more like a schoolboy prank than an attempt to bring down the monarchy. Either way it probably cost him his knighthood. Fortunately for all parties he turned away from regicide and back into medicine.
Over the course of his career he published on many aspects of medicine particularly gout and appendicitis but also, perhaps most intriguingly, the correct way of wearing a surgical truss. Mercifully out of print. He even wrote a children’s book about dangerous sports.
But by far his most well-known work was “An Essay on the Shaking Palsy” published in 1817.
This was the first work ever to describe what later became known as Parkinson’s disease, with its tremor, muscle rigidity, immobility and balance problems. Normally my tremor is not this bad. But then normally, I’m not speaking to 150 livery men. As with most illnesses at that time, treatment consisted of a mixture of toxic potions and leeches. “Take two leeches and call me in the morning”.
Fast forward 200 years and the Parkinson’s disease we see today is very similar to what James Parkinson himself described. Parkinson himself would have easily recognised the condition although he probably would have wondered where all the leeches had gone. He would probably also wonder where his house had gone – it’s now a wine bar. And yes, that probably is the sound of him turning in his grave
So, if I can be serious for a moment, what does it feel like to be diagnosed with Parkinson’s?
Nowadays, we have CT scans, MRI images and more blood tests than even the leeches could manage in order to help make as accurate a diagnosis as possible. But in the end it comes down to the same thing. Being diagnosed with Parkinson’s is a life changing experience.
Not least because you learn two new words. You learn that it is neurodegenerative which means it will get worse. And you learn that it is incurable. By any standards that is a lot to take in. And for many people, that is as far as it goes. You accept your lot. That is the hand that life has dealt you.
But what if you don’t accept your lot? What if you decide to do something about it? What if you question why it is incurable? Many illnesses start out incurable. But medicine somehow finds a way to change that. Polio, smallpox, and nowadays some forms of cancer. Why not Parkinson’s disease?
The simple truth was that nobody had asked the question. Everyone had accepted that it was incurable. Until 10 years ago when the Cure Parkinson’s Trust was founded.
And it was not founded by scientists. It was not founded by physicians. It was founded by patients. By patients who did not accept their lot in life. Patients who knew that life is not about the hand you’re dealt but how you play that hand.
And over the last decade CPT has grown from two people and a typewriter to what it is now – an international charity funding some of the most exciting, innovative and ambitious research into a cure for Parkinson’s. It’s a charity utterly focused on one objective – to put itself out of business. (And incidentally you can help here by supporting the Masters dinner on 17 May). Above all, it’s a charity that never allows people to give up hope.
I have had Parkinson’s for 12 years and I’ve learnt one or two things about how to live with the condition. So I would like to end with some pieces of advice in case you should ever get Parkinson’s.
Rule number one – Be careful what you eat.
If you have a tremor, and I think you can see I have, you have to be careful what you eat. Not because of any critical diet requirements, just the mechanics of transferring food from your plate to your mouth. And not over your left shoulder. Or into your right ear.
When we have dinner parties at home, I always tell guests to wear old clothes. Especially they will be seated next to me. Spaghetti is the worst. I pick up the Parmesan cheese and 30 seconds later the table looks like a winter nativity scene. That’s the thing with Parkinson’s – you run out of clean clothes faster than you run out of hope.
Rule number two – don’t go to auction houses.
his is an environment where raising an eyebrow is enough to make a bid. Involuntary movements can get you into big trouble. There is nothing more disconcerting than hearing the hammer go down and realising you have just outbid the National Gallery for a Michelangelo sculpture. So my advice is either don’t go at all or get a friend to duck tape you to the chair.
Rule number three – – my final piece of advice. Don’t make assumptions.
When travelling anywhere these days my walking stick helps get a seat on crowded trains. Most people will offer me their seat. Sometimes I accept but at other times, if I’m feeling well, I will decline. I was on the underground the other day waiting at Southwark station. A train pulled in, the doors opened and, as I stepped aboard, a young man started to get to his feet and gestured to his seat. I felt okay and shook my head in polite refusal. Again he gestured to the seat. It was very kind of him but I made my point by gently pushing him back down and thanking him. I vaguely heard him say something as the train doors closed.
“I’m sorry” I said as the train moved off “I didn’t catch that”.
“That was my stop” he said.
I would like to say one last thing.
Because I am a neuroscientist as well as a person Parkinson’s, I’m often asked whether I really believe in a cure. And my answer is the same today as it was back in 2006. The answer is yes, we will cure it.
There has never been a better time to have Parkinson’s.