Cure Parkinson's Trust Lifeline

14 years ago, my wife and I were told she had Parkinson's.

It obviously came as a massive shock to us both.

She wasn't even 40.

We soon realised that life would never be the same again.

When Diane was diagnosed,

our children were both still very young.

We didn't know how to tell them or whether we should tell them at that stage.

My mood really dropped once I'd been diagnosed

and for quite a few weeks I was very low.

Parkinson's is a degenerative brain disorder

affecting nearly 130,000 people in the UK.

While it's mostly diagnosed in people over 60,

one in 10 patients have early-onset Parkinson's, like Diane.

She has dealt courageously with the many ways the disease

has affected her, from the intense muscular pain and stiffness

to the disturbed sleep and loss of her sense of smell.

It's frustrating, exhausting and relentless.

Of course, as a family, we do keep positive

and we do keep going because we do know there is a chance

that a cure for Parkinson's is within reach.

And that's because of a brilliant charity

called The Cure Parkinson's Trust

and I want to tell you about the work they do

because it's become a very important part of our lives.

The Cure Parkinson's Trust

was set up by a group of people with Parkinson's.

They funded trials into treatments with the potential to slow, stop

or even reverse the disease, which is caused by nerve cells

dying in the area of the brain which manages movement.

And they are making some exciting discoveries

with drugs already used to treat other conditions.

Professor Tom Foltynie is one of the neurologists collaborating

with the charity.

We designed a trial and we found a clear signal

that one of the diabetes drugs appears to be helpful

in patients with Parkinson's disease.

I'm hugely excited about this.

The work of The Cure Parkinson's Trust is fundamental

and together we are making important, exciting inroads

into developing a cure for Parkinson's disease.

But until that cure is found, some Parkinson's patients

turn to other methods to alleviate their symptoms.

Today, Professor Foltynie is with Rachel...

Come in, come in.

..who, just six months ago,

had surgery to put an implant in her brain.

It's known as deep brain stimulation and helps with movement control.

What I want to do is to check your balance.

Are you ready?

Good.

Rachel was diagnosed in her late 30s

and has been living with Parkinson's for nearly ten years.

I was running with some friends and my right leg used to veer off

to the right, so I knew that legs didn't do that.

And I was very lucky, I saw my neurologist really quickly

and he knew straight away as I stood up from the chair

in the waiting room that I had it, Parkinson's disease,

because I was so slow, I had a masked face,

my arm didn't swing, so he knew straight away.

It just was a bit of a shock to me.

Rachel's symptoms gradually increased

and severely affected her family life.

We couldn't plan holidays,

we couldn't do normal things like go swimming,

I couldn't even go to the shops,

I couldn't pick up the kids in the car, reliably.

Like my wife Diane,

she opted for the brain operation to ease her symptoms.

At the moment my movement is a lot more reliable.

However, I know that it's really just controlling my symptoms

and that the Parkinson's is still getting worse.

The trouble is, the surgery doesn't stop the progression

of Parkinson's disease.

Over time, balance issues, problems with speech and swallowing

and problems with memory and thinking

can become more and more of an issue and this is why we need to develop

a cure that is going to either slow down, stop

or even reverse the progression of Parkinson's disease

and that is exactly what The Cure Parkinson's Trust is about.

Each person with Parkinson's has their own experience

of its progression.

It makes you unable to do things as fast as you would like to do them.

Simple things like cleaning the bath,

I wanted to do it quicker but I couldn't. My hands wouldn't move.

Writing Christmas cards took me much longer than normal

so I had to get friends round to help me do these things.

People often associate Parkinson's with unpredictable jerky movements.

However, the reality is, it's more like stiffness and rigidity.

People take a combination of drugs in order to move more freely.

However, as time marches on, these drugs become less effective

and this can give people exhausting fluctuations in their movement.

David was diagnosed six years ago aged only 29

and has to manage a daily rollercoaster of symptoms

as well as the side effects of medication

that constantly come and go.

We use the term patient to describe people with Parkinson's

and that's indeed what we're not, we're not patient,

we need better treatments now, better support to find a cure.

Without the money to fund that, it's never going to happen.

Today, David has to balance the effects of the disease

and his drugs simply to carry on with daily activities.

Until recently, he worked as a teacher

at a sixth form college in Bolton.

The biggest problem you have with working is that everybody

has to be in at a certain time of the day, finish at a certain time.

I had classrooms of 30 children and that was a massive challenge for me,

to the point whereby my symptoms started to interfere with that

and I made the conscious decision to think, something has to change.

David now has a fulfilling role in the college's website

and marketing department.

He's also a blogger and advocate,

active in the community of people with Parkinson's online.

And he's refused to allow Parkinson's to stop him pursuing

his passion for music.

Believe it or not, I play the piano. I really do.

I find it's a really good way to help me keep dextrous and moving

in terms of my hands.

It also keeps you engaged cognitively.

# Rain, rain go away

# Save it for another day... #

I wrote that song about my son George.

Life's going to get worse and harder but don't grow up too fast

and let me enjoy it while I still can, you know?

# The clouds may come but I'm not ready yet... #

Knowing The Cure Parkinson's Trust is out there doing the work

they're doing, founded by people with PD like myself,

is so comforting because I know that hopefully in the future,

through better funding and research,

they can find a better outcome and a cure for me and others.

The Cure Parkinson's Trust needs us to do our bit

so that they can continue to fund that vital research.

Rachel certainly is in no doubt about the value of raising awareness

and money for the charity.

A friend of mine and myself, we cycled from London to Paris

a few years ago and we raised thousands of pounds

and it's great to know that every penny

goes to finding a cure for Parkinson's disease.

The cure Parkinson's trust is determined to find a cure

for this devastating disease.

Already they have six clinical trials underway

and with your support we can help fund another three.

These trials have the potential to change

the course of the disease forever.

And every donation you make can help give people like Rachel,

David and Diane the chance of a life without Parkinson's.

So please give what you can.

To give by phone, call 0800 011 011.

Calls are free from mobiles and landlines.

You can also donate £10 by texting DONATE

to 70121.

Texts cost £10 plus your standard network message charge

and the whole £10 goes to The Cure Parkinson's Trust.

For full terms and conditions or to make a donation online,

visit the Lifeline website at bbc.co.uk/lifeline

Or if you'd like to post a donation,

please make your cheque payable to The Cure Parkinson's Trust

and send it to FREEPOST BBC Lifeline Appeal,

writing The Cure Parkinson's Trust on the back of the envelope.

-Thank you.

-Yes, thanks so much indeed.