This is a story of amyotrophic lateral sclerosis,
known as ALS or sometimes MND,
and how researchers
and people with this terminal disease
leave a legacy for future generations.
I was seven years old.
So, my dad got diagnosed in ’97.
He was in a wheelchair for quite a while
before his voice started to really go
and then he started to use a lightwriter
to communicate after that
so I don't really remember…
I don't have a memory of him communicating
and talking to me kind of in the flesh
which is strange.
MND or ALS
is the progressive degeneration
of the motor neurones.
There's a lot of variability in the age of onset.
There's a variability in the site of onset
so it might start with a weakness in the hand
or in the leg
and with difficulty swallowing or speaking.
There are kind of like gradual losses,
so initially there are losses with walking
or your hands or your speech,
so you gradually have time
to get used to those things,
but like with most things
you don't miss it until it's really gone and, yeah,
we didn't think about recording his voice
because it wasn't even thought about at that time.
[Phone ringing]
We are currently unable to answer your call
at the moment
but if you’d like to leave your name
and telephone number after the tone,
we’ll return your call as soon as possible.
And there's probably a three-second gap
where he's breathing into it,
trying to figure out which button to press to save it
and that's the end of it, yeah.
My first memory of it being really important to me
was coming home from school
and dad was in the hospice by this point.
Somebody had just phoned the house
and so I just caught the tail end of the answer phone
message of him.
I figured out that you could press a button on it
and it would replay this message so, yeah,
I would just listen to that
quite a number of times repeatedly,
just to hear his voice
because it was a way to remember
what he used to sound like.
And obviously once he did die, again,
it was really important for me as well
to keep hearing his voice.
In the terms of my research
is I've wanted to try and understand
what's been going wrong in the motor neurons.
There's multiple different reasons
why they may be dying.
If you imagine a motor neuron,
the cell body can actually be in the base of your spine
and the length of the axon
goes all the way down your leg
and may be controlling the muscle
that moves your big toe.
So that's an enormous cell
when we actually think of cells
normally as being sort of microscopic.
So it just goes to show how challenging
these neurological diseases are.
When I started doing the PhD here
I knew I wanted to do something
that was going to help young people
that have been in a similar situation to me
so I started to think about what had helped me.
The research is about people recording a video legacy
so that it could be purposely given to a child,
a young person, in the family
to use in the future.
So it means that once they've gone
the child or young person
has a way to kind of replay a message in video form,
to remember the person that's passed away.
So it's kind of revolutionary for them
as it was for me to kind of look back
and see the person or hear the person
as they once were.
This is Dean…
Dean Richard Mucklow.
One thing I always say to you two is I love you,
because I really do.
Dean was diagnosed in May 2013
and uses a legacy video app
called ‘record me now’
to leave messages for his friends,
family and young children.
I was scared walking down the aisle
to marry your mom, but again,
I was scared
but it was the best thing I ever did.
I was scared to have children.
As soon as you have children
you never stop being scared or worried.
Scared makes you alive so embrace it, use it.
Never let it stop you
because the most successful people in life
have been scared but they overcome it.
One of the things I was drawn to actually
was the challenges
and there's a lot of challenges for people with MND.
Not only have you got the challenges
of making sure that you're ready to think about
the fact you're going to die
and accept that and think to yourself
that you want to create this digital legacy,
it's really quite a short window
where people are physically able to do it
because they've still got their voice
and perhaps use technology.
But they may not be kind of mentally ready
to get into that place yet…
to actually get down and start the ball rolling
and start doing it.
It's really hard.
You're having to think about the messages
that you want your child to know in the future
because you're not going to be able to say it.
You're having to think about
who you're communicating to
because your knowledge is your child at a young age
but it might be that the video that you're recording
is for them when they're a lot older,
getting married or something,
so you're having to think about
what that person might be like in the future.
The patient population is so supportive
in participating in the trials.
They are continually aware
that they may be giving samples
that ultimately may not be…
the findings will not be of benefit to them
but they may be of benefit to the next generation.
Yes there's quite a sense of achievement
that people have been able to create something
in a time when they aren't able to do a lot of things
they used to be able to do.
It's quite a gift for the young person.
The speciality I had
was touching my nose with my tongue.
Can you do that? I think not.
How special am I?
A lot of times, when people are on camera
people want to be a polished version of themselves
and that's not what people,
young people especially, want to see.
They want to see the real person.
I remember a time where I was trying to
go further along in the tape.
I remember he had problems in recording the message
so I was hoping I would be able to hear him swear
or something like that,
just to hear that aspect of my dad.
It's not just about creating a purposeful legacy
– it's just about having some sort of legacy
in general I think.
This has been the hardest thing
I've ever done in my life…
trying to find the right words.
I want to thank each and every person
that has ever helped or supported us during this time
and I just want to say I love you all.
Take care and keep smiling.