0:00:02 > 0:00:04Gordon Aikman is dying.
0:00:04 > 0:00:09Motor neurone disease is shutting down his body.
0:00:09 > 0:00:11In six months' time I'll be in a wheelchair.
0:00:11 > 0:00:14I'd probably be talking to you through a computer.
0:00:14 > 0:00:16In a year I'll be dead.
0:00:16 > 0:00:20But Gordon's not giving in without a fight.
0:00:20 > 0:00:23The most important thing is finding a cure.
0:00:23 > 0:00:24Demanding better care...
0:00:26 > 0:00:28..raising cash to help find a cure.
0:00:28 > 0:00:30One... Whoo!
0:00:30 > 0:00:34For the past year we've followed him from the depths of despair...
0:00:34 > 0:00:39I was trapped for five hours, lying on the floor in just absolute agony,
0:00:39 > 0:00:42thinking I was going to die.
0:00:42 > 0:00:44..to the heights of delight.
0:00:44 > 0:00:47It is my pleasure to declare you married and you may kiss.
0:00:47 > 0:00:50APPLAUSE
0:00:50 > 0:00:52It's an inspiring story.
0:00:52 > 0:00:54This is the fight of Gordon's life.
0:01:03 > 0:01:06This is Gordon Aikman before he got ill -
0:01:06 > 0:01:10young, fit and fighting to keep Scotland in the UK
0:01:10 > 0:01:14as research director with the Better Together campaign.
0:01:14 > 0:01:17With less than a year to the referendum,
0:01:17 > 0:01:19he hasn't got time to be unwell.
0:01:19 > 0:01:23But he can't ignore the signs that something is far wrong.
0:01:23 > 0:01:26The first thing I noticed was my hands -
0:01:26 > 0:01:29I wasn't able to do the buttons on my shirt
0:01:29 > 0:01:33and I was struggling with cutlery, typing, tying my shoelaces.
0:01:33 > 0:01:36Very simple, very ordinary, everyday things.
0:01:36 > 0:01:40And I just thought, "I need to get this checked out."
0:01:40 > 0:01:44After months of tests, Gordon's doctor gives him
0:01:44 > 0:01:46a devastating diagnosis.
0:01:46 > 0:01:49You know, I remember sitting opposite my neurologist
0:01:49 > 0:01:52telling me they think I had motor neurone disease.
0:01:52 > 0:01:55I just didn't believe the words that were coming out of his mouth.
0:01:55 > 0:01:58So, Gordon was in with the doctor for a good 20, 25 minutes
0:01:58 > 0:02:00and then the doctor came out to get me,
0:02:00 > 0:02:03and I could see from the doctor's face
0:02:03 > 0:02:07that something very bad had happened.
0:02:07 > 0:02:10And I went into the room and Gordon was in tears.
0:02:10 > 0:02:13The odds are stacked against me.
0:02:13 > 0:02:18Half of people die within 14 months of diagnosis.
0:02:18 > 0:02:20You know, it's a pretty...
0:02:22 > 0:02:26..pretty bleak outlook to be facing when some...you know, at 29.
0:02:30 > 0:02:35At the start of 2015, Gordon is still able to walk.
0:02:35 > 0:02:36With his friend Joanna,
0:02:36 > 0:02:40he's off to the cinema to see the film about Professor Stephen Hawking
0:02:40 > 0:02:44who, like Gordon, has motor neurone disease - MND.
0:02:44 > 0:02:47The diagnosis scene is very powerful.
0:02:47 > 0:02:52I think in many ways it was very, very similar to how I was diagnosed.
0:02:52 > 0:02:57It's called motor neurone disease. Life expectancy is two years.
0:02:58 > 0:03:01When Eddie Redmayne is sitting in the bath looking at his hands
0:03:01 > 0:03:08and sort of looking at them as his fingers curl and his skin twitches,
0:03:08 > 0:03:13you know, I've been there, I've done that. I just stare at my own body
0:03:13 > 0:03:16and watch it twitch away incessantly.
0:03:16 > 0:03:19- A singularity... - Space-time singularity.
0:03:19 > 0:03:20It's set in a particular time period.
0:03:20 > 0:03:24Since then, there really hasn't been any significant progress
0:03:24 > 0:03:30made in the kinds of treatments or understanding since his diagnosis.
0:03:30 > 0:03:33Here we are, here's Dr Davenport.
0:03:33 > 0:03:37There is no cure and no effective treatment
0:03:37 > 0:03:40and doctors think Gordon, unlike Professor Hawking,
0:03:40 > 0:03:45has a form of MND that will cut his life cruelly short.
0:03:45 > 0:03:49So, if we look at your hands, it's very obvious that the loss
0:03:49 > 0:03:52of muscle, particularly here in this muscle here, which is
0:03:52 > 0:03:55usually quite a chunky muscle if you look at my hand.
0:03:55 > 0:03:58It attacks your brain, your spinal cord, your nerves.
0:03:58 > 0:04:00It leads to muscle weakness
0:04:00 > 0:04:05and then I'll become increasingly disabled and ultimately paralysed.
0:04:05 > 0:04:07A lot of the muscle has been lost here,
0:04:07 > 0:04:10which is one of the hallmarks of motor neurone disease, of course.
0:04:10 > 0:04:13He's much younger than most patients with this diagnosis,
0:04:13 > 0:04:14so that's unusual.
0:04:14 > 0:04:20But I think what has impressed and amazed us is his positivity,
0:04:20 > 0:04:24the way that he's decided to deal with this head on.
0:04:24 > 0:04:28Three, two, one... Whoo!
0:04:28 > 0:04:32Gordon's fundraising frenzy begins almost straight away.
0:04:32 > 0:04:35The Ice Bucket Challenge is a big hit.
0:04:35 > 0:04:41My partner will lose the ability to walk, to eat and to talk.
0:04:41 > 0:04:43Go for it!
0:04:43 > 0:04:48Everyone seems to be soaking to support MND research.
0:04:53 > 0:04:58The most important thing is finding a cure and that can only come
0:04:58 > 0:05:00if we raise a serious amount of money.
0:05:00 > 0:05:05This pub quiz in Edinburgh, hosted by Gordon and his partner Joe,
0:05:05 > 0:05:07is one of many charity nights.
0:05:07 > 0:05:10In London, the Prime Minister's wife puts on a special
0:05:10 > 0:05:15reception for MND campaigners in Number Ten.
0:05:15 > 0:05:21By November, Gordon's Fightback has raised £100,000 and is impressing
0:05:21 > 0:05:25the judges at the Scottish Politician of the Year Awards.
0:05:25 > 0:05:29It is an enormous honour to present this special judges' award
0:05:29 > 0:05:31to Gordon Aikman.
0:05:31 > 0:05:33APPLAUSE
0:05:34 > 0:05:37In six months' time I'll be in a wheelchair.
0:05:37 > 0:05:40I'd probably be talking to you through a computer.
0:05:40 > 0:05:42In a year I'll be dead.
0:05:44 > 0:05:47So we must - we must - act now.
0:05:47 > 0:05:51People need to run marathons and organise bake sales
0:05:51 > 0:05:54so I can die with dignity.
0:05:54 > 0:05:55Now, that all needs to change -
0:05:55 > 0:05:58everyone is this room can agree that.
0:05:58 > 0:06:02It's not difficult, and you know what? It's not even that expensive.
0:06:02 > 0:06:05We just need the political will.
0:06:05 > 0:06:08So, Nicola, First Minister, please let's get round a table
0:06:08 > 0:06:12and let's get this fixed. Ladies and gentlemen, thank you very much.
0:06:12 > 0:06:13Have a great night.
0:06:13 > 0:06:15APPLAUSE
0:06:17 > 0:06:22Can I begin by saying that over the course of this remarkable year,
0:06:22 > 0:06:26nothing and no-one has inspired me
0:06:26 > 0:06:28more than the bravery of Gordon Aikman?
0:06:28 > 0:06:30APPLAUSE
0:06:30 > 0:06:32Gordon...
0:06:33 > 0:06:37..you rightly threw down a challenge to me this evening
0:06:37 > 0:06:41and I am happy to pick that challenge up,
0:06:41 > 0:06:45and I look forward to speaking to you more about it very, very soon.
0:06:52 > 0:06:56- Andrea?- Hi, Gordon. - Shall we do my legs?- OK, coming.
0:06:59 > 0:07:03Gordon's carer is helping him at home three times a week.
0:07:04 > 0:07:06But he knows that's no longer enough.
0:07:07 > 0:07:10Yeah, yesterday, because I don't have you guys, carers,
0:07:10 > 0:07:13on a Tuesday, it took me - and Joe was out -
0:07:13 > 0:07:17from early yesterday morning, it took me almost an hour.
0:07:17 > 0:07:22Andrea is getting him ready for a day out with his family in Fife.
0:07:22 > 0:07:25It's hard for her to watch him weaken.
0:07:25 > 0:07:27It's very difficult to cope emotionally.
0:07:27 > 0:07:32We do get on well and we have developed a good relationship.
0:07:32 > 0:07:37Gordon is my youngest client that I've ever looked after
0:07:37 > 0:07:39and, yeah, it won't be easy.
0:07:43 > 0:07:47I am able to still drive a car and that feeling of freedom,
0:07:47 > 0:07:51of independence, of being able to just put your foot down
0:07:51 > 0:07:52and get where you want to go,
0:07:52 > 0:07:55when you struggle to walk from, you know,
0:07:55 > 0:07:59here to the end of the street, is an amazing feeling and it's...
0:07:59 > 0:08:00You know, that is...
0:08:00 > 0:08:04It's given me a good few months of increased independence,
0:08:04 > 0:08:09which I think is so, so important to people with MND.
0:08:09 > 0:08:12The way I think about it is this is as healthy as I'm ever going to be.
0:08:12 > 0:08:15Today is my healthiest day, so I've got to get out and enjoy life
0:08:15 > 0:08:16while I can.
0:08:20 > 0:08:22I've probably seen more of my mum
0:08:22 > 0:08:26and my family in the last few months than ever before.
0:08:26 > 0:08:30I think when you're given a, you know, a terminal diagnosis,
0:08:30 > 0:08:34a shock like that, you reprioritise things and you...
0:08:36 > 0:08:38You focus on different things.
0:08:38 > 0:08:41So, yeah, I'm back home in Fife every few weeks.
0:08:43 > 0:08:45With his mum, Gordon has come to collect
0:08:45 > 0:08:50a cheque from Kirkcaldy Gymnastics Club at his old school.
0:08:50 > 0:08:53As a youngster, Gordon was a member here.
0:08:53 > 0:08:56He competed for Scotland and became a coach.
0:08:56 > 0:08:58His sister Lorraine runs the club
0:08:58 > 0:09:02and organised a sponsored obstacle course to raise money for MND.
0:09:02 > 0:09:05So, on behalf of Kirkcaldy Gymnastics Club,
0:09:05 > 0:09:09we'd like to hand over two cheques - one to Autism Rocks (Fife)
0:09:09 > 0:09:14and one to Gordon's Fightback campaign for £757.30.
0:09:14 > 0:09:17- Big cheer!- Wow! Thank you.
0:09:17 > 0:09:19APPLAUSE AND CHEERING
0:09:19 > 0:09:22- There you are.- Thank you. - Can you manage to hold this?
0:09:22 > 0:09:26- You might need to hold it with me. - Do you want to help Gordon hold it?
0:09:26 > 0:09:28- Aw, thank you. - You're better than me.
0:09:28 > 0:09:30My hands aren't very good, you see. There we go.
0:09:30 > 0:09:33This is going to make a big, big difference, you know?
0:09:33 > 0:09:35It's all going to go on research so that they can find out
0:09:35 > 0:09:38what's wrong with me and other people like me.
0:09:38 > 0:09:40So thank you very much, this is a very kind thing
0:09:40 > 0:09:42and it's going to make a big difference.
0:09:42 > 0:09:45It's difficult and I've looked back at pictures of me
0:09:45 > 0:09:49doing backflips and somersaults and handstands and cartwheels.
0:09:51 > 0:09:54I loved exercise and sport but...
0:09:54 > 0:09:57And I still dream of being able to run.
0:09:57 > 0:09:59I can barely walk, so it's a dream
0:09:59 > 0:10:01that I'm never going to realise again.
0:10:05 > 0:10:07Good to see you.
0:10:07 > 0:10:09- Good to see you.- How are you doing? - I'm very well, thank you.
0:10:09 > 0:10:11Thank you very much for agreeing to meet me.
0:10:11 > 0:10:15One dream Gordon may be able to realise is better care
0:10:15 > 0:10:17for MND patients.
0:10:18 > 0:10:22He's taken the First Minster up on the meeting she offered him
0:10:22 > 0:10:24at the Politician of the Year Awards.
0:10:24 > 0:10:26- Good to see them do their stuff. - Indeed, indeed.
0:10:26 > 0:10:30Your speech was fantastic. Very, very powerful.
0:10:30 > 0:10:35His big ask is for the government, rather than charity, to pay for
0:10:35 > 0:10:39specialist MND nurses and for their number to double in Scotland to 12.
0:10:41 > 0:10:44Within weeks, Gordon gets a result.
0:10:48 > 0:10:52A patient with motor neurone disease has won his campaign for NHS
0:10:52 > 0:10:55funding to double the number of specialist nurses.
0:10:55 > 0:10:59- Hi!- How are you doing?- I'm fine, how are you?- In you come.- Thank you.
0:10:59 > 0:11:04Judith Newton is the specialist nurse supervising Gordon's care.
0:11:04 > 0:11:08She's helping him secure his first electric wheelchair.
0:11:08 > 0:11:09So, how do they run it?
0:11:09 > 0:11:13Is it clinics that you need to go to or is it just appointments or...?
0:11:13 > 0:11:15Judith makes sure Gordon has the equipment,
0:11:15 > 0:11:20medicine and help he needs to cope with his physical decline.
0:11:20 > 0:11:22Then they match you up to the appropriate chair
0:11:22 > 0:11:26and look at how you're actually going to drive and control.
0:11:26 > 0:11:30As one of six nurses covering the whole of Scotland, she's stretched.
0:11:30 > 0:11:34Being part of a bigger team should mean the 400 people living
0:11:34 > 0:11:37with MND get much better nursing care.
0:11:39 > 0:11:42WHISTLE BLOWS
0:11:42 > 0:11:44Gordon has a new target.
0:11:44 > 0:11:46As the UK general election approaches,
0:11:46 > 0:11:49he's getting other politicians on side...
0:11:52 > 0:11:56..winning their support for a big increase in state funding
0:11:56 > 0:11:58for MND research.
0:11:58 > 0:12:02I wish I could actually run around and kick a ball just like everyone
0:12:02 > 0:12:04else here today, but that's not possible
0:12:04 > 0:12:07because of what's happening to me.
0:12:07 > 0:12:10Hopefully today we've raised awareness and we've, you know,
0:12:10 > 0:12:13sent the message loud and clear that if we want to find a cure
0:12:13 > 0:12:17we've got to double the amount of money we spend on research.
0:12:17 > 0:12:22The parties are sympathetic, but funding is allocated independently
0:12:22 > 0:12:26to avoid research becoming a political football.
0:12:32 > 0:12:35As well as raising money for MND research,
0:12:35 > 0:12:38Gordon has decided to donate some of his own body tissue.
0:12:40 > 0:12:46Lignocaine, 1%, and it expires 5/2016. OK.
0:12:46 > 0:12:49The nurses are preparing to take sample tissue,
0:12:49 > 0:12:51known as a punch biopsy.
0:12:51 > 0:12:55It's important for research that they've got samples from people
0:12:55 > 0:12:59like me that have motor neurone disease, so, you know, I think
0:12:59 > 0:13:04it's something that I can give and hopefully can make a difference.
0:13:04 > 0:13:08This tiny piece of flesh could contain vital clues to what
0:13:08 > 0:13:12causes MND and what drugs might be used to treat it.
0:13:15 > 0:13:19Gordon's sample is being used in stem cell research
0:13:19 > 0:13:21at Edinburgh University.
0:13:21 > 0:13:25MND expert Professor Siddharthan Chandran
0:13:25 > 0:13:29is taking Gordon to see the work his team is doing.
0:13:29 > 0:13:32That's the skin biopsy and over time - several weeks -
0:13:32 > 0:13:35from the skin biopsy out grow other cells.
0:13:35 > 0:13:37They happen to be called fibroblasts,
0:13:37 > 0:13:39and those fibroblasts over time
0:13:39 > 0:13:43will cover the entire cover slip like a carpet.
0:13:43 > 0:13:47And it's those fibroblasts that you convert into the master stem cell.
0:13:47 > 0:13:49What we're doing and what the research community is doing
0:13:49 > 0:13:53is to use it to discover aspects of the disease
0:13:53 > 0:13:56and then also use it to test and screen drugs.
0:13:56 > 0:14:01It's fascinating to, you know, realise that skin cells
0:14:01 > 0:14:07of patients like me are really helping in the research,
0:14:07 > 0:14:09and that's really important.
0:14:13 > 0:14:16Gordon's taking a break from the campaign.
0:14:16 > 0:14:20He's off to Washington, DC with Joe, who works as a journalist.
0:14:21 > 0:14:24As people who like their politics,
0:14:24 > 0:14:28the trip wouldn't be complete without a tour of the White House.
0:14:28 > 0:14:33That was incredible. Wow, just absolutely incredible, yeah. We...
0:14:33 > 0:14:37Just, it's a dream come true. It's something where you...
0:14:38 > 0:14:40Quite surreal being in there.
0:14:40 > 0:14:44I don't think I would have been able to do this without Joe.
0:14:44 > 0:14:47I can't get up and get on with my day without Joe.
0:14:47 > 0:14:49I just depend on him for so much.
0:14:49 > 0:14:52He is a massive support in so many ways.
0:14:52 > 0:14:57It's tough, of course. It's made the relationship way more intense.
0:14:57 > 0:15:00- It's turbo-charged, in a way, isn't it? It's...- Yeah.
0:15:08 > 0:15:10Because Gordon's so ill,
0:15:10 > 0:15:15he and Joe are determined to make the most of their time together.
0:15:15 > 0:15:19On their last day in Washington, Joe springs a big surprise.
0:15:21 > 0:15:24We had a really nice walk along the waterfront and just as the sun
0:15:24 > 0:15:29was setting, Joe got down on one knee and proposed to me.
0:15:29 > 0:15:32So me and Joe are getting married,
0:15:32 > 0:15:35which is super exciting and, yeah,
0:15:35 > 0:15:38just kind of topped off an amazing, amazing holiday.
0:15:38 > 0:15:39Yeah.
0:15:41 > 0:15:43DEEP BREATHING
0:15:51 > 0:15:54Just as Gordon's legs and arms are getting weaker,
0:15:54 > 0:15:57so are the muscles that control his breathing.
0:15:58 > 0:16:03He uses a ventilator to top up his oxygen supply and prevent headaches.
0:16:05 > 0:16:07To begin with it was horrible.
0:16:07 > 0:16:10You know, I really hated this thing.
0:16:10 > 0:16:12But, you know, as...
0:16:14 > 0:16:16You know, it only took me
0:16:16 > 0:16:21a day or two to realise that I felt better after using it
0:16:21 > 0:16:25and it was helping me and it wasn't my enemy, it was actually a friend.
0:16:25 > 0:16:29His lungs are rested in time for some friends to arrive
0:16:29 > 0:16:31to celebrate his engagement to Joe.
0:16:31 > 0:16:35- Hi, how's it going? - Good, how are you?
0:16:35 > 0:16:40Joanna and her husband Lawrence like to prepare meals for Gordon.
0:16:40 > 0:16:41Ditch this in the kitchen, yeah.
0:16:41 > 0:16:45Gordon loves his food but is no longer able to cook for himself.
0:16:45 > 0:16:51Yeah, Gordon, you're not coming to the MND ball on Friday?
0:16:51 > 0:16:54No, I'm getting my...
0:16:54 > 0:16:58In my stomach, my stomach-feeding tube thing.
0:16:58 > 0:17:01He's having a feeding tube surgically fitted
0:17:01 > 0:17:05because there may come a time when he can no longer eat.
0:17:05 > 0:17:08Too hungry! It's eight o'clock, we're all starving.
0:17:08 > 0:17:10- Cheers.- Cheers.
0:17:10 > 0:17:14- Cheers, cheers, cheers. - Cheers, cheers, cheers.
0:17:14 > 0:17:16Happy meals on wheels.
0:17:19 > 0:17:23It's the day of the operation at Edinburgh's Western General Hospital.
0:17:23 > 0:17:26I think it's quite difficult for Gordon
0:17:26 > 0:17:28because although his life has got more and more difficult
0:17:28 > 0:17:31over the past year, this is the first time, really,
0:17:31 > 0:17:34that he's had any significant treatment.
0:17:34 > 0:17:38This is something that's invasive, it's something...
0:17:38 > 0:17:42A tube that will be permanently sticking out of his stomach.
0:17:42 > 0:17:45And I think although he realises that it just has to be done,
0:17:45 > 0:17:48just get it out of the way and get it over with,
0:17:48 > 0:17:51I think it's not a particularly nice thing to go through,
0:17:51 > 0:17:54it's not something that he's looking forward to.
0:17:57 > 0:18:00This is really important that I do this. It's...
0:18:00 > 0:18:02I'm not going to need to use it straight away
0:18:02 > 0:18:04but it's an insurance policy for the future.
0:18:07 > 0:18:09The procedure goes well,
0:18:09 > 0:18:12but Gordon hasn't left himself much time to recover.
0:18:19 > 0:18:22Just two weeks later, it's the big day.
0:18:26 > 0:18:27One of my big hopes was actually
0:18:27 > 0:18:30that I'd be able to walk down that aisle.
0:18:31 > 0:18:36I had my leg splints on, I had my walking stick
0:18:36 > 0:18:39and then I had Joe propping me up
0:18:39 > 0:18:43with my other arm and I made it down the aisle.
0:18:43 > 0:18:48So, first, Gordon, can you take Joe's left hand?
0:18:48 > 0:18:52I call upon these persons here present to witness that I,
0:18:52 > 0:18:58Gordon Lewis Aikman, solemnly and sincerely declare that I accept you,
0:18:58 > 0:19:01Joseph Timothy Pike, in marriage
0:19:01 > 0:19:04as my lawfully wedded husband.
0:19:04 > 0:19:08To have and to hold from this day forward,
0:19:08 > 0:19:10for better or for worse,
0:19:10 > 0:19:13for richer or for poorer,
0:19:13 > 0:19:15till death us do part.
0:19:15 > 0:19:16Thank you, Gordon.
0:19:18 > 0:19:22Gordon and Joe, it is my pleasure to declare you married,
0:19:22 > 0:19:23and you may kiss.
0:19:23 > 0:19:25APPLAUSE AND CHEERING
0:19:34 > 0:19:37Weddings at the best of times are always very,
0:19:37 > 0:19:38very emotional occasions
0:19:38 > 0:19:42and obviously this one has that kind of extra emotion to it.
0:19:42 > 0:19:43Was there a tear in your eye?
0:19:43 > 0:19:47More than one, yeah, at different points in the ceremony.
0:19:47 > 0:19:49It was just absolutely beautiful.
0:19:49 > 0:19:51Really proud to be a part of it, more than anything.
0:19:55 > 0:19:59The wedding was one of the last times Gordon walked.
0:19:59 > 0:20:02By the summer, he's collecting an honorary degree
0:20:02 > 0:20:06from the University of Edinburgh in his electric wheelchair.
0:20:06 > 0:20:08I think dying has taught me...
0:20:09 > 0:20:10..a lot about living.
0:20:12 > 0:20:13Life can be short.
0:20:15 > 0:20:18Cherish those you care about most,
0:20:18 > 0:20:20many of whom are here with us today.
0:20:22 > 0:20:23Be true to yourself...
0:20:24 > 0:20:27..and live your own life.
0:20:27 > 0:20:29And...
0:20:29 > 0:20:31if you can...
0:20:31 > 0:20:35fight to make things that little bit better for those that follow.
0:20:35 > 0:20:36Thank you.
0:20:37 > 0:20:42It's now 13 months since Gordon was diagnosed with MND.
0:20:45 > 0:20:48The thing that I'm most scared of is losing my voice.
0:20:48 > 0:20:51I think that would be incredibly difficult.
0:20:51 > 0:20:56So not only are you paralysed, unable to move,
0:20:56 > 0:21:01you then suddenly not be able to communicate and speak and,
0:21:01 > 0:21:02you know, be...
0:21:02 > 0:21:05You know, it's such a huge part of who you are.
0:21:09 > 0:21:11Just try that one again.
0:21:11 > 0:21:15They were quick to respond to the unfolding revolution.
0:21:15 > 0:21:17Technology offers a solution.
0:21:19 > 0:21:23Gordon is giving speech samples to Edinburgh University,
0:21:23 > 0:21:27where researchers are developing a cutting-edge digital voice bank.
0:21:29 > 0:21:32It goes into our speech synthesis software
0:21:32 > 0:21:36and gets spliced up into all the individual speech sounds,
0:21:36 > 0:21:39gets blended with donor voices who have similar characteristics
0:21:39 > 0:21:43to your own voice, and then we can create a synthesised voice
0:21:43 > 0:21:46based on the recording that you made earlier.
0:21:46 > 0:21:48- So you just type in a message... - Yeah. Thank you.
0:21:48 > 0:21:51..and then press the "speak" button at the top there.
0:21:51 > 0:21:53Yeah.
0:21:56 > 0:22:00Hello, my name is Gordon. Do you think this sounds like me?
0:22:00 > 0:22:02Yeah, I think it does.
0:22:04 > 0:22:08At Holyrood, there's cross-party support for better access
0:22:08 > 0:22:12to voice technology and a new commitment from the government.
0:22:12 > 0:22:16Gordon Aikman and MND Scotland have been campaigning for those
0:22:16 > 0:22:20who need voice equipment to have a statutory right to it.
0:22:20 > 0:22:24So I can announce today that we will provide such a statutory right.
0:22:24 > 0:22:28That's a big change and that will affect people not just with MND.
0:22:28 > 0:22:32People who lose their voice for any number of different reasons,
0:22:32 > 0:22:34that will have a big impact.
0:22:36 > 0:22:39No matter how much his campaign is succeeding,
0:22:39 > 0:22:42nothing can stop Gordon's body failing.
0:22:45 > 0:22:50He can no longer feed or wash himself, walk or drive.
0:22:50 > 0:22:54Andrea and her care team visit three times every day.
0:22:54 > 0:22:58Big change from when we started here.
0:22:59 > 0:23:04It's tough seeing the deterioration over the last few months,
0:23:04 > 0:23:10from being able to walk and now using the stand aid all the time.
0:23:12 > 0:23:13But it's, erm...
0:23:15 > 0:23:18That's it. I get quite emotional, thinking about it.
0:23:18 > 0:23:22It is difficult because Gordon's only a few years younger than me.
0:23:23 > 0:23:28Between care visits, when Joe's at work, Gordon's often home alone.
0:23:28 > 0:23:33And without help at hand, routine tasks can easily go wrong.
0:23:35 > 0:23:38I was using my teeth to open the curtains
0:23:38 > 0:23:41and I was sort of biting the curtains as I was
0:23:41 > 0:23:45using the power of my wheelchair to pull them open,
0:23:45 > 0:23:49and I basically just went back over this side here.
0:23:49 > 0:23:55My head was right back, just, you know, inches from the floor.
0:23:55 > 0:23:57This is such a crap way to die.
0:23:57 > 0:24:00I thought, right, I need to chuck myself on the floor
0:24:00 > 0:24:01so I can breathe.
0:24:01 > 0:24:04Then I got my feet, my legs all tangled up in the wheelchair
0:24:04 > 0:24:07and then that cut off the blood supply to my legs.
0:24:07 > 0:24:10I was trying to shout out the door cos I knew the door was
0:24:10 > 0:24:12a little bit ajar. Nobody was coming.
0:24:12 > 0:24:14For five hours he'd been screaming,
0:24:14 > 0:24:16screaming for help.
0:24:17 > 0:24:21I don't think I've ever felt more alone than I did lying...
0:24:23 > 0:24:27..on the floor, on the carpet, just that day.
0:24:27 > 0:24:30And when I got home Gordon was...
0:24:30 > 0:24:32he was very distressed.
0:24:32 > 0:24:35I was an absolute mess when they found me.
0:24:35 > 0:24:38I was kind of sobbing, delirious, I'd been sick.
0:24:38 > 0:24:41I was just an absolute mess.
0:24:41 > 0:24:43But I think that was a real knock to him.
0:24:43 > 0:24:45That was a real knock to his confidence...
0:24:47 > 0:24:50..a real knock to any real idea of independence.
0:24:52 > 0:24:54It was a very difficult moment.
0:24:57 > 0:25:01After a week in hospital, Gordon's back home with Joe.
0:25:01 > 0:25:04What they are going through would test some relationships
0:25:04 > 0:25:07to destruction, so what's their secret?
0:25:07 > 0:25:11I think if you love someone, you love someone.
0:25:11 > 0:25:13Everything else is irrelevant.
0:25:13 > 0:25:17That's the way I feel, but it's easy for me to say that cos...
0:25:18 > 0:25:20You know, I think it's harder for Joe.
0:25:20 > 0:25:24When you're in a situation like we are, of course it's difficult.
0:25:25 > 0:25:26But...
0:25:28 > 0:25:33..no challenge is insurmountable and at the base of our friendship
0:25:33 > 0:25:38is love and really caring about each other.
0:25:38 > 0:25:41- We're in this together and... - We've got this far.
0:25:41 > 0:25:43We're a team, we work well together.
0:25:43 > 0:25:46We've got through a lot so far, I'm sure we can...
0:25:46 > 0:25:49I'm sure we can cope with a few more things.
0:25:52 > 0:25:57At 30 years of age, Gordon has had to plan his own funeral.
0:25:57 > 0:26:00Today he has appointments at an Edinburgh hospice that
0:26:00 > 0:26:04provides end-of-life counselling and care.
0:26:04 > 0:26:07It's a happy place, it's a nice place. It's, erm...
0:26:07 > 0:26:09I come in here and I don't feel like a patient.
0:26:09 > 0:26:11You know, an option for me would be to come
0:26:11 > 0:26:15and spend my, sort of, final days and weeks here.
0:26:15 > 0:26:17But for me, I think I want to be at home.
0:26:17 > 0:26:20I want to be in my own space, surrounded by my own friends
0:26:20 > 0:26:22and my own family.
0:26:22 > 0:26:26You are heaping a huge amount of emotion, pain, pressure...
0:26:28 > 0:26:31..onto someone when you die. I think that's inevitable.
0:26:31 > 0:26:35I think there's no point kidding yourself it's going to be easy
0:26:35 > 0:26:38for my mum to see her son pass in her own lifetime...
0:26:40 > 0:26:44..for my...for Joe to see his husband die.
0:26:46 > 0:26:47I'm not going to sit here
0:26:47 > 0:26:50and pretend it's going to be easy for them.
0:26:51 > 0:26:55But I want them to know that I love them more than anything
0:26:55 > 0:26:58and, you know, I...
0:26:58 > 0:27:02They've made me who I am and I couldn't be more grateful to them.
0:27:10 > 0:27:15Gordon is determined to live the rest of his life to the full.
0:27:15 > 0:27:19Tonight he's kilted up because for the second time he's among
0:27:19 > 0:27:22the nominees at the Scottish Politician of the Year Awards.
0:27:22 > 0:27:27And the winner of Public Campaigner of the Year is Gordon Aikman.
0:27:27 > 0:27:29APPLAUSE AND CHEERING
0:27:37 > 0:27:42Last year I was here in this room I walked up those stairs over there,
0:27:42 > 0:27:45I walked across that stage and I stood at that podium.
0:27:46 > 0:27:49This year I can't take a single step unaided.
0:27:50 > 0:27:52I wish I could.
0:27:52 > 0:27:54You know, last year I ate my own dinner.
0:27:54 > 0:27:56This year, I had to be fed by a carer.
0:27:58 > 0:28:02For me personally it's been a year of big changes.
0:28:02 > 0:28:04But more importantly, it's been a year of big,
0:28:04 > 0:28:07positive changes that will make a massive difference,
0:28:07 > 0:28:11not just to people with MND but people right across Scotland.
0:28:15 > 0:28:17I just felt I had to do something.
0:28:17 > 0:28:20It's what I could do, it's what I could contribute,
0:28:20 > 0:28:22it's what I could give back, it's what...
0:28:22 > 0:28:24It's how I could make a difference.
0:28:26 > 0:28:31In December, another award - the British Empire Medal is bestowed
0:28:31 > 0:28:35for a campaign that's on course to raise half a million pounds.
0:28:38 > 0:28:42In the year ahead, Gordon and Joe hope to have their honeymoon.
0:28:43 > 0:28:47Gordon also wants to spend more time with his new niece, Eilidh.
0:28:49 > 0:28:53And with Lawrence and Joanna's new baby, who has been given Gordon
0:28:53 > 0:28:57as his middle name in honour of an inspiring young man.