The Fight of Gordon's Life BBC Scotland Investigates


The Fight of Gordon's Life

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Gordon Aikman is dying.

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Motor neurone disease is shutting down his body.

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In six months' time I'll be in a wheelchair.

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I'd probably be talking to you through a computer.

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In a year I'll be dead.

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But Gordon's not giving in without a fight.

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The most important thing is finding a cure.

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Demanding better care...

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..raising cash to help find a cure.

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One... Whoo!

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For the past year we've followed him from the depths of despair...

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I was trapped for five hours, lying on the floor in just absolute agony,

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thinking I was going to die.

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..to the heights of delight.

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It is my pleasure to declare you married and you may kiss.

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APPLAUSE

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It's an inspiring story.

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This is the fight of Gordon's life.

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This is Gordon Aikman before he got ill -

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young, fit and fighting to keep Scotland in the UK

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as research director with the Better Together campaign.

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With less than a year to the referendum,

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he hasn't got time to be unwell.

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But he can't ignore the signs that something is far wrong.

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The first thing I noticed was my hands -

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I wasn't able to do the buttons on my shirt

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and I was struggling with cutlery, typing, tying my shoelaces.

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Very simple, very ordinary, everyday things.

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And I just thought, "I need to get this checked out."

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After months of tests, Gordon's doctor gives him

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a devastating diagnosis.

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You know, I remember sitting opposite my neurologist

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telling me they think I had motor neurone disease.

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I just didn't believe the words that were coming out of his mouth.

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So, Gordon was in with the doctor for a good 20, 25 minutes

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and then the doctor came out to get me,

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and I could see from the doctor's face

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that something very bad had happened.

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And I went into the room and Gordon was in tears.

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The odds are stacked against me.

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Half of people die within 14 months of diagnosis.

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You know, it's a pretty...

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..pretty bleak outlook to be facing when some...you know, at 29.

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At the start of 2015, Gordon is still able to walk.

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With his friend Joanna,

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he's off to the cinema to see the film about Professor Stephen Hawking

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who, like Gordon, has motor neurone disease - MND.

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The diagnosis scene is very powerful.

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I think in many ways it was very, very similar to how I was diagnosed.

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It's called motor neurone disease. Life expectancy is two years.

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When Eddie Redmayne is sitting in the bath looking at his hands

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and sort of looking at them as his fingers curl and his skin twitches,

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you know, I've been there, I've done that. I just stare at my own body

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and watch it twitch away incessantly.

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-A singularity...

-Space-time singularity.

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It's set in a particular time period.

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Since then, there really hasn't been any significant progress

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made in the kinds of treatments or understanding since his diagnosis.

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Here we are, here's Dr Davenport.

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There is no cure and no effective treatment

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and doctors think Gordon, unlike Professor Hawking,

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has a form of MND that will cut his life cruelly short.

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So, if we look at your hands, it's very obvious that the loss

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of muscle, particularly here in this muscle here, which is

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usually quite a chunky muscle if you look at my hand.

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It attacks your brain, your spinal cord, your nerves.

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It leads to muscle weakness

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and then I'll become increasingly disabled and ultimately paralysed.

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A lot of the muscle has been lost here,

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which is one of the hallmarks of motor neurone disease, of course.

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He's much younger than most patients with this diagnosis,

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so that's unusual.

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But I think what has impressed and amazed us is his positivity,

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the way that he's decided to deal with this head on.

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Three, two, one... Whoo!

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Gordon's fundraising frenzy begins almost straight away.

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The Ice Bucket Challenge is a big hit.

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My partner will lose the ability to walk, to eat and to talk.

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Go for it!

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Everyone seems to be soaking to support MND research.

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The most important thing is finding a cure and that can only come

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if we raise a serious amount of money.

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This pub quiz in Edinburgh, hosted by Gordon and his partner Joe,

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is one of many charity nights.

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In London, the Prime Minister's wife puts on a special

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reception for MND campaigners in Number Ten.

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By November, Gordon's Fightback has raised £100,000 and is impressing

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the judges at the Scottish Politician of the Year Awards.

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It is an enormous honour to present this special judges' award

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to Gordon Aikman.

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APPLAUSE

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In six months' time I'll be in a wheelchair.

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I'd probably be talking to you through a computer.

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In a year I'll be dead.

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So we must - we must - act now.

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People need to run marathons and organise bake sales

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so I can die with dignity.

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Now, that all needs to change -

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everyone is this room can agree that.

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It's not difficult, and you know what? It's not even that expensive.

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We just need the political will.

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So, Nicola, First Minister, please let's get round a table

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and let's get this fixed. Ladies and gentlemen, thank you very much.

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Have a great night.

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APPLAUSE

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Can I begin by saying that over the course of this remarkable year,

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nothing and no-one has inspired me

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more than the bravery of Gordon Aikman?

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APPLAUSE

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Gordon...

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..you rightly threw down a challenge to me this evening

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and I am happy to pick that challenge up,

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and I look forward to speaking to you more about it very, very soon.

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-Andrea?

-Hi, Gordon.

-Shall we do my legs?

-OK, coming.

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Gordon's carer is helping him at home three times a week.

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But he knows that's no longer enough.

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Yeah, yesterday, because I don't have you guys, carers,

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on a Tuesday, it took me - and Joe was out -

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from early yesterday morning, it took me almost an hour.

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Andrea is getting him ready for a day out with his family in Fife.

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It's hard for her to watch him weaken.

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It's very difficult to cope emotionally.

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We do get on well and we have developed a good relationship.

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Gordon is my youngest client that I've ever looked after

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and, yeah, it won't be easy.

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I am able to still drive a car and that feeling of freedom,

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of independence, of being able to just put your foot down

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and get where you want to go,

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when you struggle to walk from, you know,

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here to the end of the street, is an amazing feeling and it's...

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You know, that is...

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It's given me a good few months of increased independence,

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which I think is so, so important to people with MND.

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The way I think about it is this is as healthy as I'm ever going to be.

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Today is my healthiest day, so I've got to get out and enjoy life

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while I can.

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I've probably seen more of my mum

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and my family in the last few months than ever before.

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I think when you're given a, you know, a terminal diagnosis,

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a shock like that, you reprioritise things and you...

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You focus on different things.

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So, yeah, I'm back home in Fife every few weeks.

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With his mum, Gordon has come to collect

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a cheque from Kirkcaldy Gymnastics Club at his old school.

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As a youngster, Gordon was a member here.

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He competed for Scotland and became a coach.

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His sister Lorraine runs the club

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and organised a sponsored obstacle course to raise money for MND.

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So, on behalf of Kirkcaldy Gymnastics Club,

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we'd like to hand over two cheques - one to Autism Rocks (Fife)

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and one to Gordon's Fightback campaign for £757.30.

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-Big cheer!

-Wow! Thank you.

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APPLAUSE AND CHEERING

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-There you are.

-Thank you.

-Can you manage to hold this?

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-You might need to hold it with me.

-Do you want to help Gordon hold it?

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-Aw, thank you.

-You're better than me.

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My hands aren't very good, you see. There we go.

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This is going to make a big, big difference, you know?

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It's all going to go on research so that they can find out

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what's wrong with me and other people like me.

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So thank you very much, this is a very kind thing

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and it's going to make a big difference.

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It's difficult and I've looked back at pictures of me

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doing backflips and somersaults and handstands and cartwheels.

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I loved exercise and sport but...

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And I still dream of being able to run.

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I can barely walk, so it's a dream

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that I'm never going to realise again.

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Good to see you.

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-Good to see you.

-How are you doing?

-I'm very well, thank you.

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Thank you very much for agreeing to meet me.

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One dream Gordon may be able to realise is better care

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for MND patients.

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He's taken the First Minster up on the meeting she offered him

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at the Politician of the Year Awards.

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-Good to see them do their stuff.

-Indeed, indeed.

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Your speech was fantastic. Very, very powerful.

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His big ask is for the government, rather than charity, to pay for

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specialist MND nurses and for their number to double in Scotland to 12.

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Within weeks, Gordon gets a result.

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A patient with motor neurone disease has won his campaign for NHS

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funding to double the number of specialist nurses.

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-Hi!

-How are you doing?

-I'm fine, how are you?

-In you come.

-Thank you.

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Judith Newton is the specialist nurse supervising Gordon's care.

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She's helping him secure his first electric wheelchair.

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So, how do they run it?

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Is it clinics that you need to go to or is it just appointments or...?

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Judith makes sure Gordon has the equipment,

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medicine and help he needs to cope with his physical decline.

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Then they match you up to the appropriate chair

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and look at how you're actually going to drive and control.

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As one of six nurses covering the whole of Scotland, she's stretched.

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Being part of a bigger team should mean the 400 people living

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with MND get much better nursing care.

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WHISTLE BLOWS

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Gordon has a new target.

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As the UK general election approaches,

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he's getting other politicians on side...

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..winning their support for a big increase in state funding

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for MND research.

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I wish I could actually run around and kick a ball just like everyone

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else here today, but that's not possible

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because of what's happening to me.

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Hopefully today we've raised awareness and we've, you know,

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sent the message loud and clear that if we want to find a cure

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we've got to double the amount of money we spend on research.

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The parties are sympathetic, but funding is allocated independently

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to avoid research becoming a political football.

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As well as raising money for MND research,

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Gordon has decided to donate some of his own body tissue.

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Lignocaine, 1%, and it expires 5/2016. OK.

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The nurses are preparing to take sample tissue,

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known as a punch biopsy.

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It's important for research that they've got samples from people

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like me that have motor neurone disease, so, you know, I think

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it's something that I can give and hopefully can make a difference.

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This tiny piece of flesh could contain vital clues to what

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causes MND and what drugs might be used to treat it.

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Gordon's sample is being used in stem cell research

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at Edinburgh University.

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MND expert Professor Siddharthan Chandran

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is taking Gordon to see the work his team is doing.

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That's the skin biopsy and over time - several weeks -

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from the skin biopsy out grow other cells.

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They happen to be called fibroblasts,

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and those fibroblasts over time

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will cover the entire cover slip like a carpet.

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And it's those fibroblasts that you convert into the master stem cell.

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What we're doing and what the research community is doing

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is to use it to discover aspects of the disease

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and then also use it to test and screen drugs.

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It's fascinating to, you know, realise that skin cells

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of patients like me are really helping in the research,

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and that's really important.

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Gordon's taking a break from the campaign.

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He's off to Washington, DC with Joe, who works as a journalist.

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As people who like their politics,

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the trip wouldn't be complete without a tour of the White House.

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That was incredible. Wow, just absolutely incredible, yeah. We...

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Just, it's a dream come true. It's something where you...

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Quite surreal being in there.

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I don't think I would have been able to do this without Joe.

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I can't get up and get on with my day without Joe.

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I just depend on him for so much.

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He is a massive support in so many ways.

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It's tough, of course. It's made the relationship way more intense.

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-It's turbo-charged, in a way, isn't it? It's...

-Yeah.

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Because Gordon's so ill,

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he and Joe are determined to make the most of their time together.

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On their last day in Washington, Joe springs a big surprise.

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We had a really nice walk along the waterfront and just as the sun

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was setting, Joe got down on one knee and proposed to me.

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So me and Joe are getting married,

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which is super exciting and, yeah,

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just kind of topped off an amazing, amazing holiday.

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Yeah.

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DEEP BREATHING

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Just as Gordon's legs and arms are getting weaker,

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so are the muscles that control his breathing.

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He uses a ventilator to top up his oxygen supply and prevent headaches.

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To begin with it was horrible.

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You know, I really hated this thing.

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But, you know, as...

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You know, it only took me

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a day or two to realise that I felt better after using it

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and it was helping me and it wasn't my enemy, it was actually a friend.

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His lungs are rested in time for some friends to arrive

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to celebrate his engagement to Joe.

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-Hi, how's it going?

-Good, how are you?

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Joanna and her husband Lawrence like to prepare meals for Gordon.

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Ditch this in the kitchen, yeah.

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Gordon loves his food but is no longer able to cook for himself.

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Yeah, Gordon, you're not coming to the MND ball on Friday?

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No, I'm getting my...

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In my stomach, my stomach-feeding tube thing.

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He's having a feeding tube surgically fitted

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because there may come a time when he can no longer eat.

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Too hungry! It's eight o'clock, we're all starving.

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-Cheers.

-Cheers.

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-Cheers, cheers, cheers.

-Cheers, cheers, cheers.

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Happy meals on wheels.

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It's the day of the operation at Edinburgh's Western General Hospital.

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I think it's quite difficult for Gordon

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because although his life has got more and more difficult

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over the past year, this is the first time, really,

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that he's had any significant treatment.

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This is something that's invasive, it's something...

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A tube that will be permanently sticking out of his stomach.

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And I think although he realises that it just has to be done,

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just get it out of the way and get it over with,

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I think it's not a particularly nice thing to go through,

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it's not something that he's looking forward to.

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This is really important that I do this. It's...

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I'm not going to need to use it straight away

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but it's an insurance policy for the future.

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The procedure goes well,

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but Gordon hasn't left himself much time to recover.

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Just two weeks later, it's the big day.

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One of my big hopes was actually

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that I'd be able to walk down that aisle.

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I had my leg splints on, I had my walking stick

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and then I had Joe propping me up

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with my other arm and I made it down the aisle.

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So, first, Gordon, can you take Joe's left hand?

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I call upon these persons here present to witness that I,

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Gordon Lewis Aikman, solemnly and sincerely declare that I accept you,

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Joseph Timothy Pike, in marriage

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as my lawfully wedded husband.

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To have and to hold from this day forward,

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for better or for worse,

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for richer or for poorer,

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till death us do part.

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Thank you, Gordon.

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Gordon and Joe, it is my pleasure to declare you married,

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and you may kiss.

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APPLAUSE AND CHEERING

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Weddings at the best of times are always very,

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very emotional occasions

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and obviously this one has that kind of extra emotion to it.

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Was there a tear in your eye?

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More than one, yeah, at different points in the ceremony.

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It was just absolutely beautiful.

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Really proud to be a part of it, more than anything.

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The wedding was one of the last times Gordon walked.

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By the summer, he's collecting an honorary degree

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from the University of Edinburgh in his electric wheelchair.

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I think dying has taught me...

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..a lot about living.

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Life can be short.

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Cherish those you care about most,

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many of whom are here with us today.

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Be true to yourself...

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..and live your own life.

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And...

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if you can...

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fight to make things that little bit better for those that follow.

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Thank you.

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It's now 13 months since Gordon was diagnosed with MND.

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The thing that I'm most scared of is losing my voice.

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I think that would be incredibly difficult.

0:20:480:20:51

So not only are you paralysed, unable to move,

0:20:510:20:56

you then suddenly not be able to communicate and speak and,

0:20:560:21:01

you know, be...

0:21:010:21:02

You know, it's such a huge part of who you are.

0:21:020:21:05

Just try that one again.

0:21:090:21:11

They were quick to respond to the unfolding revolution.

0:21:110:21:15

Technology offers a solution.

0:21:150:21:17

Gordon is giving speech samples to Edinburgh University,

0:21:190:21:23

where researchers are developing a cutting-edge digital voice bank.

0:21:230:21:27

It goes into our speech synthesis software

0:21:290:21:32

and gets spliced up into all the individual speech sounds,

0:21:320:21:36

gets blended with donor voices who have similar characteristics

0:21:360:21:39

to your own voice, and then we can create a synthesised voice

0:21:390:21:43

based on the recording that you made earlier.

0:21:430:21:46

-So you just type in a message...

-Yeah. Thank you.

0:21:460:21:48

..and then press the "speak" button at the top there.

0:21:480:21:51

Yeah.

0:21:510:21:53

Hello, my name is Gordon. Do you think this sounds like me?

0:21:560:22:00

Yeah, I think it does.

0:22:000:22:02

At Holyrood, there's cross-party support for better access

0:22:040:22:08

to voice technology and a new commitment from the government.

0:22:080:22:12

Gordon Aikman and MND Scotland have been campaigning for those

0:22:120:22:16

who need voice equipment to have a statutory right to it.

0:22:160:22:20

So I can announce today that we will provide such a statutory right.

0:22:200:22:24

That's a big change and that will affect people not just with MND.

0:22:240:22:28

People who lose their voice for any number of different reasons,

0:22:280:22:32

that will have a big impact.

0:22:320:22:34

No matter how much his campaign is succeeding,

0:22:360:22:39

nothing can stop Gordon's body failing.

0:22:390:22:42

He can no longer feed or wash himself, walk or drive.

0:22:450:22:50

Andrea and her care team visit three times every day.

0:22:500:22:54

Big change from when we started here.

0:22:540:22:58

It's tough seeing the deterioration over the last few months,

0:22:590:23:04

from being able to walk and now using the stand aid all the time.

0:23:040:23:10

But it's, erm...

0:23:120:23:13

That's it. I get quite emotional, thinking about it.

0:23:150:23:18

It is difficult because Gordon's only a few years younger than me.

0:23:180:23:22

Between care visits, when Joe's at work, Gordon's often home alone.

0:23:230:23:28

And without help at hand, routine tasks can easily go wrong.

0:23:280:23:33

I was using my teeth to open the curtains

0:23:350:23:38

and I was sort of biting the curtains as I was

0:23:380:23:41

using the power of my wheelchair to pull them open,

0:23:410:23:45

and I basically just went back over this side here.

0:23:450:23:49

My head was right back, just, you know, inches from the floor.

0:23:490:23:55

This is such a crap way to die.

0:23:550:23:57

I thought, right, I need to chuck myself on the floor

0:23:570:24:00

so I can breathe.

0:24:000:24:01

Then I got my feet, my legs all tangled up in the wheelchair

0:24:010:24:04

and then that cut off the blood supply to my legs.

0:24:040:24:07

I was trying to shout out the door cos I knew the door was

0:24:070:24:10

a little bit ajar. Nobody was coming.

0:24:100:24:12

For five hours he'd been screaming,

0:24:120:24:14

screaming for help.

0:24:140:24:16

I don't think I've ever felt more alone than I did lying...

0:24:170:24:21

..on the floor, on the carpet, just that day.

0:24:230:24:27

And when I got home Gordon was...

0:24:270:24:30

he was very distressed.

0:24:300:24:32

I was an absolute mess when they found me.

0:24:320:24:35

I was kind of sobbing, delirious, I'd been sick.

0:24:350:24:38

I was just an absolute mess.

0:24:380:24:41

But I think that was a real knock to him.

0:24:410:24:43

That was a real knock to his confidence...

0:24:430:24:45

..a real knock to any real idea of independence.

0:24:470:24:50

It was a very difficult moment.

0:24:520:24:54

After a week in hospital, Gordon's back home with Joe.

0:24:570:25:01

What they are going through would test some relationships

0:25:010:25:04

to destruction, so what's their secret?

0:25:040:25:07

I think if you love someone, you love someone.

0:25:070:25:11

Everything else is irrelevant.

0:25:110:25:13

That's the way I feel, but it's easy for me to say that cos...

0:25:130:25:17

You know, I think it's harder for Joe.

0:25:180:25:20

When you're in a situation like we are, of course it's difficult.

0:25:200:25:24

But...

0:25:250:25:26

..no challenge is insurmountable and at the base of our friendship

0:25:280:25:33

is love and really caring about each other.

0:25:330:25:38

-We're in this together and...

-We've got this far.

0:25:380:25:41

We're a team, we work well together.

0:25:410:25:43

We've got through a lot so far, I'm sure we can...

0:25:430:25:46

I'm sure we can cope with a few more things.

0:25:460:25:49

At 30 years of age, Gordon has had to plan his own funeral.

0:25:520:25:57

Today he has appointments at an Edinburgh hospice that

0:25:570:26:00

provides end-of-life counselling and care.

0:26:000:26:04

It's a happy place, it's a nice place. It's, erm...

0:26:040:26:07

I come in here and I don't feel like a patient.

0:26:070:26:09

You know, an option for me would be to come

0:26:090:26:11

and spend my, sort of, final days and weeks here.

0:26:110:26:15

But for me, I think I want to be at home.

0:26:150:26:17

I want to be in my own space, surrounded by my own friends

0:26:170:26:20

and my own family.

0:26:200:26:22

You are heaping a huge amount of emotion, pain, pressure...

0:26:220:26:26

..onto someone when you die. I think that's inevitable.

0:26:280:26:31

I think there's no point kidding yourself it's going to be easy

0:26:310:26:35

for my mum to see her son pass in her own lifetime...

0:26:350:26:38

..for my...for Joe to see his husband die.

0:26:400:26:44

I'm not going to sit here

0:26:460:26:47

and pretend it's going to be easy for them.

0:26:470:26:50

But I want them to know that I love them more than anything

0:26:510:26:55

and, you know, I...

0:26:550:26:58

They've made me who I am and I couldn't be more grateful to them.

0:26:580:27:02

Gordon is determined to live the rest of his life to the full.

0:27:100:27:15

Tonight he's kilted up because for the second time he's among

0:27:150:27:19

the nominees at the Scottish Politician of the Year Awards.

0:27:190:27:22

And the winner of Public Campaigner of the Year is Gordon Aikman.

0:27:220:27:27

APPLAUSE AND CHEERING

0:27:270:27:29

Last year I was here in this room I walked up those stairs over there,

0:27:370:27:42

I walked across that stage and I stood at that podium.

0:27:420:27:45

This year I can't take a single step unaided.

0:27:460:27:49

I wish I could.

0:27:500:27:52

You know, last year I ate my own dinner.

0:27:520:27:54

This year, I had to be fed by a carer.

0:27:540:27:56

For me personally it's been a year of big changes.

0:27:580:28:02

But more importantly, it's been a year of big,

0:28:020:28:04

positive changes that will make a massive difference,

0:28:040:28:07

not just to people with MND but people right across Scotland.

0:28:070:28:11

I just felt I had to do something.

0:28:150:28:17

It's what I could do, it's what I could contribute,

0:28:170:28:20

it's what I could give back, it's what...

0:28:200:28:22

It's how I could make a difference.

0:28:220:28:24

In December, another award - the British Empire Medal is bestowed

0:28:260:28:31

for a campaign that's on course to raise half a million pounds.

0:28:310:28:35

In the year ahead, Gordon and Joe hope to have their honeymoon.

0:28:380:28:42

Gordon also wants to spend more time with his new niece, Eilidh.

0:28:430:28:47

And with Lawrence and Joanna's new baby, who has been given Gordon

0:28:490:28:53

as his middle name in honour of an inspiring young man.

0:28:530:28:57

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