Cure Parkinson's Trust

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0:00:07 > 0:00:1114 years ago, my wife and I were told she had Parkinson's.

0:00:11 > 0:00:14It obviously came as a massive shock to us both.

0:00:14 > 0:00:15She wasn't even 40.

0:00:15 > 0:00:19We soon realised that life would never be the same again.

0:00:21 > 0:00:22When Diane was diagnosed,

0:00:22 > 0:00:25our children were both still very young.

0:00:25 > 0:00:28We didn't know how to tell them or whether we should tell them at that stage.

0:00:28 > 0:00:31My mood really dropped once I'd been diagnosed

0:00:31 > 0:00:34and for quite a few weeks I was very low.

0:00:34 > 0:00:37Parkinson's is a degenerative brain disorder

0:00:37 > 0:00:41affecting nearly 130,000 people in the UK.

0:00:41 > 0:00:45While it's mostly diagnosed in people over 60,

0:00:45 > 0:00:49one in 10 patients have early-onset Parkinson's, like Diane.

0:00:51 > 0:00:55She has dealt courageously with the many ways the disease

0:00:55 > 0:00:59has affected her, from the intense muscular pain and stiffness

0:00:59 > 0:01:02to the disturbed sleep and loss of her sense of smell.

0:01:03 > 0:01:07It's frustrating, exhausting and relentless.

0:01:07 > 0:01:10Of course, as a family, we do keep positive

0:01:10 > 0:01:13and we do keep going because we do know there is a chance

0:01:13 > 0:01:17that a cure for Parkinson's is within reach.

0:01:17 > 0:01:19And that's because of a brilliant charity

0:01:19 > 0:01:21called The Cure Parkinson's Trust

0:01:21 > 0:01:24and I want to tell you about the work they do

0:01:24 > 0:01:27because it's become a very important part of our lives.

0:01:29 > 0:01:31The Cure Parkinson's Trust

0:01:31 > 0:01:33was set up by a group of people with Parkinson's.

0:01:33 > 0:01:39They funded trials into treatments with the potential to slow, stop

0:01:39 > 0:01:42or even reverse the disease, which is caused by nerve cells

0:01:42 > 0:01:46dying in the area of the brain which manages movement.

0:01:47 > 0:01:50And they are making some exciting discoveries

0:01:50 > 0:01:53with drugs already used to treat other conditions.

0:01:55 > 0:01:59Professor Tom Foltynie is one of the neurologists collaborating

0:01:59 > 0:02:01with the charity.

0:02:01 > 0:02:04We designed a trial and we found a clear signal

0:02:04 > 0:02:08that one of the diabetes drugs appears to be helpful

0:02:08 > 0:02:10in patients with Parkinson's disease.

0:02:10 > 0:02:13I'm hugely excited about this.

0:02:13 > 0:02:17The work of The Cure Parkinson's Trust is fundamental

0:02:17 > 0:02:21and together we are making important, exciting inroads

0:02:21 > 0:02:23into developing a cure for Parkinson's disease.

0:02:24 > 0:02:28But until that cure is found, some Parkinson's patients

0:02:28 > 0:02:31turn to other methods to alleviate their symptoms.

0:02:32 > 0:02:36Today, Professor Foltynie is with Rachel...

0:02:36 > 0:02:37Come in, come in.

0:02:37 > 0:02:39..who, just six months ago,

0:02:39 > 0:02:42had surgery to put an implant in her brain.

0:02:42 > 0:02:47It's known as deep brain stimulation and helps with movement control.

0:02:48 > 0:02:50What I want to do is to check your balance.

0:02:50 > 0:02:52Are you ready?

0:02:53 > 0:02:54Good.

0:02:54 > 0:02:56Rachel was diagnosed in her late 30s

0:02:56 > 0:03:00and has been living with Parkinson's for nearly ten years.

0:03:00 > 0:03:04I was running with some friends and my right leg used to veer off

0:03:04 > 0:03:08to the right, so I knew that legs didn't do that.

0:03:08 > 0:03:11And I was very lucky, I saw my neurologist really quickly

0:03:11 > 0:03:14and he knew straight away as I stood up from the chair

0:03:14 > 0:03:17in the waiting room that I had it, Parkinson's disease,

0:03:17 > 0:03:20because I was so slow, I had a masked face,

0:03:20 > 0:03:24my arm didn't swing, so he knew straight away.

0:03:24 > 0:03:27It just was a bit of a shock to me.

0:03:31 > 0:03:33Rachel's symptoms gradually increased

0:03:33 > 0:03:36and severely affected her family life.

0:03:36 > 0:03:38We couldn't plan holidays,

0:03:38 > 0:03:41we couldn't do normal things like go swimming,

0:03:41 > 0:03:44I couldn't even go to the shops,

0:03:44 > 0:03:47I couldn't pick up the kids in the car, reliably.

0:03:47 > 0:03:48Like my wife Diane,

0:03:48 > 0:03:52she opted for the brain operation to ease her symptoms.

0:03:52 > 0:03:55At the moment my movement is a lot more reliable.

0:03:55 > 0:03:59However, I know that it's really just controlling my symptoms

0:03:59 > 0:04:02and that the Parkinson's is still getting worse.

0:04:03 > 0:04:06The trouble is, the surgery doesn't stop the progression

0:04:06 > 0:04:08of Parkinson's disease.

0:04:08 > 0:04:12Over time, balance issues, problems with speech and swallowing

0:04:12 > 0:04:14and problems with memory and thinking

0:04:14 > 0:04:18can become more and more of an issue and this is why we need to develop

0:04:18 > 0:04:22a cure that is going to either slow down, stop

0:04:22 > 0:04:25or even reverse the progression of Parkinson's disease

0:04:25 > 0:04:28and that is exactly what The Cure Parkinson's Trust is about.

0:04:28 > 0:04:32Each person with Parkinson's has their own experience

0:04:32 > 0:04:33of its progression.

0:04:33 > 0:04:37It makes you unable to do things as fast as you would like to do them.

0:04:37 > 0:04:39Simple things like cleaning the bath,

0:04:39 > 0:04:43I wanted to do it quicker but I couldn't. My hands wouldn't move.

0:04:43 > 0:04:46Writing Christmas cards took me much longer than normal

0:04:46 > 0:04:48so I had to get friends round to help me do these things.

0:04:50 > 0:04:54People often associate Parkinson's with unpredictable jerky movements.

0:04:54 > 0:04:59However, the reality is, it's more like stiffness and rigidity.

0:04:59 > 0:05:04People take a combination of drugs in order to move more freely.

0:05:04 > 0:05:08However, as time marches on, these drugs become less effective

0:05:08 > 0:05:13and this can give people exhausting fluctuations in their movement.

0:05:14 > 0:05:18David was diagnosed six years ago aged only 29

0:05:18 > 0:05:21and has to manage a daily rollercoaster of symptoms

0:05:21 > 0:05:24as well as the side effects of medication

0:05:24 > 0:05:26that constantly come and go.

0:05:26 > 0:05:29We use the term patient to describe people with Parkinson's

0:05:29 > 0:05:32and that's indeed what we're not, we're not patient,

0:05:32 > 0:05:36we need better treatments now, better support to find a cure.

0:05:36 > 0:05:40Without the money to fund that, it's never going to happen.

0:05:40 > 0:05:44Today, David has to balance the effects of the disease

0:05:44 > 0:05:48and his drugs simply to carry on with daily activities.

0:05:48 > 0:05:51Until recently, he worked as a teacher

0:05:51 > 0:05:53at a sixth form college in Bolton.

0:05:53 > 0:05:56The biggest problem you have with working is that everybody

0:05:56 > 0:05:59has to be in at a certain time of the day, finish at a certain time.

0:05:59 > 0:06:03I had classrooms of 30 children and that was a massive challenge for me,

0:06:03 > 0:06:06to the point whereby my symptoms started to interfere with that

0:06:06 > 0:06:10and I made the conscious decision to think, something has to change.

0:06:10 > 0:06:13David now has a fulfilling role in the college's website

0:06:13 > 0:06:15and marketing department.

0:06:16 > 0:06:18He's also a blogger and advocate,

0:06:18 > 0:06:22active in the community of people with Parkinson's online.

0:06:25 > 0:06:28And he's refused to allow Parkinson's to stop him pursuing

0:06:28 > 0:06:30his passion for music.

0:06:30 > 0:06:33Believe it or not, I play the piano. I really do.

0:06:33 > 0:06:37I find it's a really good way to help me keep dextrous and moving

0:06:37 > 0:06:39in terms of my hands.

0:06:42 > 0:06:45It also keeps you engaged cognitively.

0:06:45 > 0:06:49# Rain, rain go away

0:06:50 > 0:06:53# Save it for another day... #

0:06:53 > 0:06:55I wrote that song about my son George.

0:06:55 > 0:06:59Life's going to get worse and harder but don't grow up too fast

0:06:59 > 0:07:02and let me enjoy it while I still can, you know?

0:07:03 > 0:07:08# The clouds may come but I'm not ready yet... #

0:07:09 > 0:07:12Knowing The Cure Parkinson's Trust is out there doing the work

0:07:12 > 0:07:15they're doing, founded by people with PD like myself,

0:07:15 > 0:07:18is so comforting because I know that hopefully in the future,

0:07:18 > 0:07:21through better funding and research,

0:07:21 > 0:07:24they can find a better outcome and a cure for me and others.

0:07:24 > 0:07:27The Cure Parkinson's Trust needs us to do our bit

0:07:27 > 0:07:31so that they can continue to fund that vital research.

0:07:31 > 0:07:35Rachel certainly is in no doubt about the value of raising awareness

0:07:35 > 0:07:37and money for the charity.

0:07:37 > 0:07:41A friend of mine and myself, we cycled from London to Paris

0:07:41 > 0:07:44a few years ago and we raised thousands of pounds

0:07:44 > 0:07:47and it's great to know that every penny

0:07:47 > 0:07:49goes to finding a cure for Parkinson's disease.

0:07:50 > 0:07:53The cure Parkinson's trust is determined to find a cure

0:07:53 > 0:07:55for this devastating disease.

0:07:55 > 0:07:58Already they have six clinical trials underway

0:07:58 > 0:08:02and with your support we can help fund another three.

0:08:02 > 0:08:05These trials have the potential to change

0:08:05 > 0:08:07the course of the disease forever.

0:08:07 > 0:08:11And every donation you make can help give people like Rachel,

0:08:11 > 0:08:16David and Diane the chance of a life without Parkinson's.

0:08:16 > 0:08:18So please give what you can.

0:08:19 > 0:08:23To give by phone, call 0800 011 011.

0:08:23 > 0:08:26Calls are free from mobiles and landlines.

0:08:26 > 0:08:29You can also donate £10 by texting DONATE

0:08:29 > 0:08:31to 70121.

0:08:31 > 0:08:35Texts cost £10 plus your standard network message charge

0:08:35 > 0:08:39and the whole £10 goes to The Cure Parkinson's Trust.

0:08:39 > 0:08:43For full terms and conditions or to make a donation online,

0:08:43 > 0:08:48visit the Lifeline website at bbc.co.uk/lifeline

0:08:48 > 0:08:50Or if you'd like to post a donation,

0:08:50 > 0:08:54please make your cheque payable to The Cure Parkinson's Trust

0:08:54 > 0:08:57and send it to FREEPOST BBC Lifeline Appeal,

0:08:57 > 0:09:01writing The Cure Parkinson's Trust on the back of the envelope.

0:09:01 > 0:09:04- Thank you. - Yes, thanks so much indeed.