Speech to World Parkinson’s Congress


Thank you Dr Lees for that kind introduction.

Good evening Ladies and Gentlemen.

I am truly honoured to have been given the opportunity to address this the Second World Parkinson Congress.

As you know the patient address at the First Congress was delivered by Michael J Fox.

I have been a fan of Michael’s since I was a teenager.

One of my first trips to the cinema was with my sister Christine to see “Back to the Future” . I thought it was a fantastic film.

As we left the cinema I said two things to Christine. The first I have no problem with.

I said: “Michael J Fox is so cool.”

The second statement I am now not so sure about. I said:  “I wish I was just like him”.

Four years on from the first Congress I am delighted to welcome you to Scotland. Many of you are new to Glasgow and I am sure you will enjoy your stay in this wonderful city.

Glasgow is known throughout the world as a city of culture, as a city of invention and industry, and as you will discover, a city inhabited by colourful, humorous and optimistic characters.

For me Glasgow is a great place to have Parkinson’s.

It is also the ideal place for our community of carers, clinicians, patients and researchers, to come together and plot the demise of this horrific disease.

As a patient, I extend a particularly warm welcome to the clinicians and researchers. In the past four years you have been responsible for the improved understanding of Parkinson’s, for the developments in methods of treatment, and for the identification of compounds with the potential to eradicate this unforgiving condition.

One day, you will cut the key that will unlock our bodies.

On behalf of the patients and carers I thank you wholeheartedly for your work.

All of us arrive at this Congress with a common goal.

To improve the lives of people with Parkinson’s disease.

Everybody in this room has something to contribute.

The clinicians and researchers bring extraordinary science and potential therapies to be discussed and dissected.

But this is not just a science meeting. This is a Congress.

This is a gathering of the whole Parkinson’s community and the patients and carers bring an extraordinary contribution too.

We bring the experience, we bring the knowledge, and we bring the passion that comes from living with this disease.

The value of this experience, knowledge and passion should not be underestimated.

The patients and carers bring something else to this Congress.

Something  that only a person who lives with this disease, day in, day out, can truly understand.

Urgency

What Martin Luther King referred to as the fierce urgency of now.

I’ve only been diagnosed a few short years and already I have had enough.

My wife and my two little girls have had enough.

My friends who have been walking miles, running miles, and swimming miles to raise awareness have seriously had enough.

Their aching limbs and cramped feet long for a cure almost as much as mine do.

A cure that’s been sitting tantalizingly below the horizon since before I was diagnosed.

A sunrise waiting to happen.

Every day I ask myself what can I do?

As a group of patients and carers what can we do?

What can we offer to advance the work of you, the clinicians and researchers?

We can offer you commitment, we can offer you cooperation and we can offer you collaboration.

Clinicians and researchers we can be your Advocates.

As Advocates we can dispel the myths of Parkinson’s.

The outside world believes this is a disease of elderly. We know it isn’t.

The outside world believes there are drugs that will see you serenely through your life. We know there aren’t.

The outside world believes the cure is five years away.  We know people who were told that 30 years ago.

As Advocates we can mobilise ourselves to deliver volunteers for clinical trials more quickly.

As Advocates we can become positive nuisances, pestering politicians, badgering budget holders and nagging decision-makers.

As Advocates we can express ourselves and the concerns of our community in a way which will deliver results.

As a community of Parkinson’s Advocates we can be a resource for you the clinicians & researchers.

But to be effective we need your commitment, we need your cooperation and we need your collaboration.

We need your support and your encouragement to bring the value of our experience, knowledge and passion to bear.

We need your guidance to plan our journey, to point us in the right direction, and to propel us to the destination all of us here want to reach.

A partnership of equals.

This Congress is not just for the scientists to demonstrate what they hope to do for the patients, it is also an opportunity for us the patients to demonstrate what we can do to eradicate Parkinson’s.

If the delegates whose life’s work is Parkinson’s, collaborate with those who live with Parkinson’s, together we can deliver a future without Parkinson’s.

But the road must start here. The opportunity exists this week. In this city. At this Congress.

Urgency. Ladies and gentlemen, Urgency.

The fierce urgency of now.

Now is the time to realise the promises of science.

Now is the time to bring our urgency to bear and deliver a future of hope for the victims of this disease.

Now is the time for a steady hand, a strong voice and a keen sense of smell for the opportunities that await us.

A steady hand.

A strong voice.

A keen sense of smell.

I had them once.

I want them back.

Welcome to Scotland.

Welcome to Glasgow.

Welcome to the World Parkinson Congress.

Thank you very much.