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