Ela (2026) Movie Script
1
It hit me like a bucket of cold water.
It was an incurable disease,
a neurological condition,
and in most cases,
the prognosis was very short-term.
The only hope I had was that someone
had to be the first to be cured.
Why couldn't it be my son?
It was like a bullet to the head.
Yes, they'd already told me...
I was going to die.
ALS
They asked me to come
and I said to my daughter,
"Come with me,
because what they'll say won't be good."
Well, I accepted it from the very start
because I knew I had something bad.
On 21 December 2015, the diagnosis came.
You have ALS.
Not even an explanation of the disease.
Absolute silence.
And you drive home on your own
after that devastating blow.
This happens to whoever it happens to.
You can't buy your way out of it.
It's your turn and that's it.
Age doesn't matter, nothing does.
There's nothing you can do.
Well, it was a rather peculiar moment
because I'm a doctor.
And from my perspective as a doctor,
the ALS diagnosis...
I'm an ophthalmologist,
so it hit me like a disease,
from which I remembered
from 30 years earlier,
when I was studying medicine,
that it was an incurable disease.
That it was a neurological disease.
And that the prognosis in most cases,
was very short-term.
So when they told me, of course,
it hit me like a bucket of cold water.
I'd been doing sport five days a week.
And suddenly I was in a hospital
where they tell me this.
Dr Death told me he wasn't sure,
as my physical appearance
didn't fit the profile of the disease.
And the next day he told me it was ALS.
It was quite unpleasant
as the doctor tactlessly dropped on me
that I had less than five years to live.
It was a disappointment
because, when I retired,
I thought I'd be able to do lots of things
and travel.
We used to travel a lot,
and that was cut short completely.
On 21 December 2015, the diagnosis came.
You have ALS.
And I got the diagnosis
in a very unpleasant way.
They called me while I was at work
and asked me to go
to the hospital urgently
because they needed to speak to me.
They didn't suggest I come with anyone,
knowing that I live in Torrejn
and worked in Tres Cantos,
more than 30 kilometres
from that hospital.
And when they told me I had ALS,
they didn't even explain the disease.
Complete silence.
And you drive home on your own
after that devastating blow.
I burst into tears,
because we'd suspected as much.
And besides, I had lived through
this disease from the outside.
I knew it was harsh,
cruel and had a tragic ending.
And worst of all,
it wasn't the law of life.
Well, I was at the hospital.
My daughter was with me.
They'd asked me to come
and I said to my daughter,
"Come with me,
because what they'll say won't be good."
Because I'd been asking
for favours for a year,
begging them to examine me,
and tell me what was wrong with me.
Then just like that, they told me.
Well, I accepted it straight away,
because I already knew
I had something bad.
THE DISEASE
Taking care of all my basic needs,
doing it all by myself,
without having to ask for help.
And that was the hardest part.
Because your nose might itch,
you might be thirsty,
but if nobody gives it to you...
well, you don't drink any water.
So you need...
someone, in this case my wife,
someone to do everything for me.
And that's when you realise...
how hard it is
to be unable to do anything.
And always asking.
It's like a light switch.
It switches on and off
in a second, doesn't it?
And that's what life is like
for someone with ALS.
You go to the doctor, flick the switch
and your life's been taken away.
Like the light.
In a second.
Yes, because at first
I thought I had Parkinson's.
I was falling all the time.
And when I started looking into it,
I thought it could be
multiple sclerosis or atrophy.
And it turned out to be the case.
When they told me it was ALS,
I thought at least I know what I'm in for.
I ended up in a wheelchair, okay.
But as long as I can speak
and my mind is working, I can carry on.
I've had it for four years now.
At first, I spent nearly three years
without anyone knowing what I had.
I had pain in my arms,
pain in my shoulders.
I had no strength in my hands.
And last year,
exactly a year ago tomorrow,
I was diagnosed with ALS.
I first noticed the symptoms
in June 2015
and, the truth is, several strange things
happened at the beginning.
From getting startled by nothing,
getting emotional over silly things,
a bit of fatigue when speaking quickly
or climbing the stairs.
But what really made me worry
was picking up a pen one day
to jot something down in my work diary
and realising I couldn't grip
the pen properly or write.
Like when your hand is frozen
in winter and it's hard to write.
A few days earlier,
I'd felt very clumsy with chopsticks.
But of course, I didn't think much of it.
When I looked closely
at my right index finger,
I realised it took a great deal
of effort to straighten it completely.
At first you think
you're trapped in a nightmare.
When you realise you're not waking up,
you refuse to believe it.
You think this can't possibly
be happening to you.
I'd like people to know
that it can happen to anyone.
The disease isn't caused
by poor self-care
or living an unhealthy lifestyle.
Well, for me it was quite hard.
I was working abroad when she rang.
She was with her daughter
when they told her.
I had to come back in a hurry.
And I couldn't come to terms with it.
I was off work for seven months.
On medication, with...
Completely different to how she is.
Completely different.
She's the cheerful one
and I'm the depressed one.
I mean, she's giving me strength.
For me it's much worse than for her.
The spirit she has,
I haven't had in my life.
That's really bad.
What's the hardest thing for me?
That it happened to my son.
ROUTINE AND LIMITATIONS
I'm gradually becoming incapacitated,
and every day I realise
I'm able to do fewer things.
Now I'm really slowing down.
And my left hand's no good either,
and every day I feel more useless.
Well, the hardest thing at the time
to accept about the disease
was realising that the progression of ALS
was going to prevent me
from playing sport the way I liked to.
I mean, playing football,
playing five-a-side,
taking part in various sports activities
like swimming and cycling.
But well, I had to adapt and that's it.
I'm still playing sports,
but in an adapted way.
ALWAYS IN OUR HEARTS
Well, there are lots
of things you don't realise
until you lose them, right?
Because I played football
and I always really enjoyed running.
And losing that, well,
it makes your internal life hard too.
Because your character changes.
Perhaps you find yourself
snapping at people quite often.
There were many things
I couldn't do while working.
Things I can do now.
And I enjoy it and live it.
And people often say to me,
"Hey, Dara, what if they told you
you could go back to work?"
I'd say, "Working the way I used to, no."
But I do things I couldn't do before.
I mean, things I value more now.
I didn't have them before
and couldn't appreciate them either.
That's why I tell people
to find the positive side of the disease.
Never dwell on the bad stuff.
I actually have to travel tomorrow.
I have to go to the doctor's.
And it's in Huelva.
It's about 45 minutes by ambulance.
An ambulance that I say,
was ready for the scrap heap
and was assigned to us for transport.
And the road isn't exactly
suitable for taking us either.
These are the shared ambulances.
They don't just take me.
They take other people
unless it's an emergency,
in which case I'd go on my own.
But this one carries other people.
It takes at least five people.
And from the moment we leave home,
it's a bit of a bumpy ride.
And if we hit a pothole, just imagine.
It's a bit rough.
ALS PATIENTS PROTEST AT THE CONGRESS
AGAINST SANCHEZ'S NEGLECAND SMOKE SCREENS
Dozens protest the government's
political exploitation of their disease,
one year after the ALS Law was passed.
My current daily life is quite routine,
because you need a set routine
to make the day more bearable.
I don't get up very early in the morning.
By 9 o'clock, they administer
my medication and first feed via the tube.
While the food passes,
which takes an hour or an hour and a half,
I watch TV series or films
while I'm still in bed.
When the food finishes, they clean
the PEG and tracheostomy sites,
the holes, so to speak.
Next, they brush my teeth, and then
we start with the stretching
and physiotherapy exercises.
After that, it's time
for my personal hygiene routine in bed.
Once that's done,
they put the harness on me and,
with the hoist, take me to the living room
and place me into the recliner,
where I'll stay all day
until I go back to bed.
By this point, I'm already connected
to the world and to everyone,
as they've set up my computer for me.
This is around 11 or 11.15 in the morning.
From then on, I'm on my own.
And I start with the thousand things
I do each day.
Things I don't have hours in the day for,
and which I'll list later.
At lunchtime,
they hook me up to the feeding tube
and give me another round of tablets.
I'm completely limited.
For one thing, I can't get
into places in my wheelchair.
And for another,
I don't feel like going out either.
Because I go out in the morning,
but by the afternoon
I don't feel like going out anymore.
Although I can get out onto the street,
I have to rely on someone
to help me get down.
But, as the neurologist told me,
the disease is progressing adequately.
What do we do in the morning?
Let's just take a stroll
back home, and that's it.
It's about having fun.
Enjoying what's around you, that's all.
And being happy with what's around you.
I mean, as far as is possible.
But I do enjoy it.
In my own way, I do enjoy it.
Yes, because it's like looking at someone
and knowing you're helping
someone who needs it.
Without it turning into pity.
I want to emphasise that.
Empathy above all,
without slipping into pity.
I don't want, so to speak,
to be a burden to anyone.
Because everyone has their own problems.
My husband, the person who comes to help.
So, I can still look after myself a bit.
And they help me a great deal.
But the day I become dependent
on them for absolutely everything...
Well, yes, that does scare me.
NO 10,000 EUROS, NO PHYSIOTHERAPIST:
ALS PATIENTS FEEL BETRAYED
BY SPANISH GOVERNMENT.
AdELA claims the law has yet
to be implemented after a year,
and that the 500 million euros
in aid promised
would reach few patients
(who aren't receiving it).
What gives me the most strength is simple.
My will to live.
As a good engineer, I'm agnostic.
I believe only
in that for which there is evidence.
And this is the only life
that is 100% known to exist.
And I'm terrified of disappearing,
of ceasing to exist.
That's why we must live
and make the most of this life.
The key to having
a will to live is to feel useful,
to have goals, however small they are,
and to do things you like and enjoy.
I also draw strength from spending time
with my family and friends.
Like watching my niece grow up.
And why not say it,
finding a partner with whom
I can enjoy everyday life.
After all, as my current life motto says,
ALS has robbed me of my ability to move,
to speak and even to breathe.
But it will never take away
my will to live, to love and to be loved.
The problem with ALS is
that it completely changes your life.
That is to say,
you become totally dependent
in a very short time.
It left me in a wheelchair within a year.
It made it impossible for me to work
in little more than that.
I was a surgeon, and obviously,
a surgeon's skill is essential.
I'd already started,
although it began with my lower limbs.
There were already
small signs in my upper limbs.
And that made me decide
that I obviously had to give it up.
I had to give up my job,
a very difficult decision.
When you're mentally
more than ready for it.
You can cope.
You can cope because it's her.
She has more courage than anyone else.
If she were depressed, I'd be done for.
She's the one who cheers everyone up,
the one who lifts them up.
THE CAREGIVERS
We were two free spirits
who found ourselves grounded.
We used to be more independent.
She worked, and so did I. Had my life.
- I used to work.
- It was "good morning" and little else.
Sometimes he didn't know that I was here.
We used to have a different life.
Abael was young too,
and I think he needed his freedom.
And now, of course,
his freedom is limited.
As for the other care we receive...
We don't have 24-hour care.
No one has that sort
of help at the moment.
Home help is three hours a day.
I sometimes wonder,
"Does that mean that after three hours,
I no longer have ALS?"
If I only have those three hours of help,
the rest of the day,
there's nothing for me.
You do it because, in my case,
I love my husband so much
that you just do it without realising it.
You just start to care, care, care.
But the years go by,
because Toni's illness has,
thank God, progressed slowly.
But you start to care for him
and you don't look after yourself.
You forget everything.
Or if I got sick,
I didn't look after myself.
The caregiver is
the eternally forgotten one,
and we don't have the luxury
of getting sick ourselves.
Unless something serious comes along,
as was my case.
After many years of looking after him...
I started having memory lapses.
It was because of some medication
I was given.
I got scared because I'd also taken care
of my mother who had Alzheimer's.
I thought I had early-onset Alzheimer's.
I went to see a neurologist
and they examined me.
And after running all the tests and so on,
they ruled out Alzheimer's,
but they told me I had
to undergo life-or-death surgery.
I had a brain malformation,
which I still have,
and a cerebral aneurysm.
This is why I needed the operation
because I could have died at any moment.
And I didn't know if I'd come out
of the operating room alive or not.
And the first thing I thought of was him.
If something happens to me?
Who'll look after him?
Well, Jorge Braga often said,
and it's true,
day after day after day.
And I don't say a word to him.
But you know, you look at him,
you keep your mouth shut
and you swallow it and just look at him.
Day in, day out, and that's it.
And the people who see you...
I love putting on make-up
and wearing lipstick...
Then people will say,"Oh, oh."
But I honestly don't care.
It's what's on the inside that counts.
What you have inside.
SIX YEARS LATER,
NO SUPPORT FOR ALS PATIENTS.
On 28 February 2026,
ALS patient Jordi Sabat
posted the following message
on his social media accounts:
"It's been six years today
since Pedro Snchez publicly promised me
that his government would provide
living allowances for ALS patients."
Me too.
Well, my brothers call me, and you know...
But well, they also say, "Damn it."
But that's it.
No...
It builds up, you know?
The caregiver thing, after so many years,
it builds up.
In fact, every four or five months
I have to keep seeing the psychiatrist.
Just for a "How are you?", "I'm fine."
"Medication?", " Well, no."
Or now yes, or I don't know.
An Orfidal to sleep.
And that's just how it is.
But you can cope with it.
Sometimes with pills, but you cope.
So you don't have
a single minute away from...
But well.
Whether it's ALS
or any other disease like that is
so severely limiting,
It's tiring.
It's tiring because I'm here
with her all day long.
Whether in the living room or my room,
or doing whatever.
But every so often,
"Move me, put me to bed,
get me a glass of juice,
change the channel..."
And it's a bit tiring.
But it is what it is.
Tony was a person...
We'd never had a single argument.
We've always travelled a great deal.
We've lived life to the full.
And once this disease set in,
not in the early years,
but as the disease began to evolve,
well, he started to change.
I understand that because
he's the one trapped inside his own body.
But what I've always tried to make him see
is that he has the disease
and he's the one who suffers it.
But I'm his hand, his arms, his voice.
He speaks but I'm his voice.
I talk to the doctors.
I'm the one in the midst
of this huge battle we're in.
And I suffer from ALS too.
Denial, like everyone else.
Total denial.
Denial.
The only hope I had was that someone
had to be the first to be cured.
Why couldn't it be my son?
That was my obsession.
The idea of...
But then every day it got worse.
Every day he was...
He was getting worse and worse.
He actually didn't want us
to ask him, "How are you today?"
He'd say, "Why are you asking me?
You know how I am.
Worse than yesterday."
The day to day, well actually...
Our situation is a bit unusual,
because he doesn't live here.
He lives 300 kilometres away.
They say out of sight, out of mind.
But that isn't true.
So what has changed is that perhaps
you stop doing things just in case.
I never make long-term plans.
Short-term plans
with him and with my partner,
and I socialise a lot.
I don't just sit at home.
The walls aren't caving in on me.
On the day of the blackout,
I wasn't at home.
That day was...
Well, I don't want to live it again.
The power went out at work.
Then you find out it's all over Spain.
Then you think...
I think of Jorge straight away.
I think of his devices.
WhatsApp isn't working either.
I knew they had a talk
at a high school in Torrejn de Ardoz.
Did it catch them in the lift?
Had they already got home?
You start imagining all sorts of things.
Well.
I managed to find out
that it had caught them
with Jorge already
settled in the armchair,
because that's electric too.
They'd just got back from the school.
And by then Jorge was settled in his spot.
But in one of the messages
that came through every now and then,
Jorge said he had
eight hours of battery life left.
I went crazy.
They treated him really well.
But of course, you don't know that
because there's no communication.
So, what was going on?
What was going on?
They sorted it out really well.
Later I found out
that the police and the ambulances
had carried him down the stairs
and taken him to the hospital
in Torrejn de Ardoz,
where they already had generators.
And when I found that out,
I burst into tears.
It all came flooding out.
It all came flooding out
because it was no longer eight hours.
Well, that probably made me more patient,
and him more impatient.
We used to be the opposite.
So we complement each other like that.
But what do I value?
Well, I value being with my family and...
And in a manner of speaking,
I'm thankful to God
that we're retired and I can do this.
Because I used to work, of course.
So I couldn't dedicate more time...
Quality time, so to speak.
So, now we go out,
go for walks or do a route
that's accessible for a wheelchair.
We look for alternatives.
Well, positive.
I've got to stay positive.
I can't just curl up in a corner and cry.
Because I've got to fight.
We do, we have that thing.
We make a lot of jokes.
I tease her a lot.
I might turn up in the morning
and tell her how many kilometres I've run.
She also asks me if my back hurts.
She tells me to put on some cream.
That today she doesn't feel
like getting her hands dirty.
She tells me not to put the cream on
as she doesn't want dirty hands.
That's how we joke about the disease.
We do.
Manolo's more serious about that, right?
The husband's more serious.
But the two of us are a couple of jokers.
And it goes on all day.
At first, it was really frustrating
not being able to understand his gestures.
Because when he's not on the computer,
how do you understand him?
But little by little
you start to understand him.
You also get to know his little quirks.
And it's all a matter of time.
Little by little you start
to understand each other.
And you come to know
what bothers him and what doesn't.
So...
And you learn something new every day.
Every day there's something new,
where you think I've got to change this
because it's better that way.
Jorge as a boss, is just like anyone else.
He's got his character.
He's not afraid to tell you things.
Perhaps he lacks a bit of tact at times,
but it's always to improve.
And my relationship with him is the same.
I'll always tell him if something
makes me uncomfortable or bothers me.
But always with respect.
It's like everything.
In the bad or frustrating moments,
I tell myself I'm here because
many good things have happened to me.
So it's not all bad.
Don't focus on the negative.
It's not all bad.
And we really enjoy watching football,
watching motor racing, Formula 1, MotoGP.
So there are lots of things
to do and share with him.
What I want to emphasise most is empathy,
and not to feel sorry for him.
Because if I don't feel pity
for a normal person, let's say,
under normal circumstances,
I don't have to feel
pity for a sick person
simply because they are sitting down.
No, quite the opposite.
They need our attention,
our support, our love,
just like anyone else.
So I think the most important
message I can leave is
empathy without resorting to pity.
BARRIERS
The other day I went out for a walk
and...
I came across a zebra crossing
where the kerbs hadn't been lowered.
I couldn't cross the street.
So I kept going along that pavement,
a narrow one,
where my wheelchair just fit.
And to my surprise, I came across
a lamppost right there
on that same pavement.
So I couldn't get past it.
Thank goodness I could back up
and managed to get a bit of control.
But I could very easily
have fallen off the kerb.
A kerb about 15 centimetres high.
And I could have hurt myself badly.
And I might have been stuck there,
because I can't...
If I fall to the ground,
I can't get up or move my hands.
I was with someone at the time.
But I'm a dead weight,
which is very hard for one person to lift.
And the wheelchair weighs 150 kilos.
And well, those problems,
those obstacles...
People who don't have them don't see them.
That happened to me too,
because I used to be fine
and didn't see those problems.
I'd see people
in wheelchairs or on crutches.
But I didn't really see them.
And now I see it all.
I had a rental car that I had to swap
because the electric wheelchair
didn't fit in the boot.
So I got another one,
and shortly afterwards
I had to swap again.
I found a taxi driver
who was getting rid of an adapted car,
so we took it.
Another loan, another whatnot.
But now we have an adapted van,
an old taxi with 300,000 kilometres.
But we don't mind.
In Zaragoza it's easy,
you get about by taxi.
But maybe she wants
to go to the village or we're off to...
If we can.
Tomorrow we're off to Bilbao to the home
of a father whose son who died of ALS.
It used to be a cider house.
Do you know it?
And he's very fond of us, of all patients.
We're going for a few days
to get away from it all.
And that's the freedom of the car.
But not everyone has that.
I mean, we're privileged.
We're privileged now.
Even if we're the poorest people
in the world, we're privileged.
Because you see cases
in the association where you think,
a person alone, or a young kid
with parents in their 70s or 80s
can't even move them.
And you think, damn, that's a real shame.
MEDIA CRITICISM
So, will there be a cure?
Yes, the problem is when.
Because, as hard as it may seem to us,
when society doesn't care about something,
it just doesn't care.
We've seen it with COVID.
Why was a vaccine for COVID,
with all its risks, whatever the debate,
found so quickly?
Because a vaccine
usually takes years and years.
Because it was a matter of urgency.
Because millions of people were dying.
And so it was easier
and more sensible to take certain risks
than to let everyone die.
This is the same thing.
It is, thank God, a minority disease.
But that's unfortunate
for the person who has it.
Because it's not of obvious interest.
If this were two million people,
politicians would be scrambling
for those two million votes.
That's the problem.
If it were two million,
they'd be scrambling.
And they wouldn't care.
But as there are four thousand people,
they don't really
want to say they don't care,
but God forbid anyone else
ever goes through this again.
But I can't imagine the responsibility
that falls on a person
who has had the power to pass a law,
which tomorrow
might affect them personally.
If the full message never reaches
the public or the politicians...
It doesn't matter if you send
politicians the message or not.
They don't care.
I mean, they've got themselves
in an issue and a downward spiral.
And they won't get out of it
until it affects one of them personally.
Who am I? I don't know.
But they cut a lot.
The press is very, how do you say it,
very heavily censored.
Because there are things
that they don't want to be said.
Both with this disease
and others, mind you.
The same thing
is happening with other diseases.
They censor.
And I think a lot of people
don't even know what's going on.
They don't know.
Many people have told me,
"You can't complain with the ALS Law."
I say, "What Law?
I'm not getting anything."
I say yes, but I'm not getting anything.
Otherwise I wouldn't be protesting.
People think
they're helping us when it's a lie.
And we need to let people know
that they make promises,
but their words don't match their actions.
ALS PATIENTS LAMENT THE LACK OF AID
SEVEN MONTHS AFTER THE LAW WAS PASSED:
"NOT ONE MORE DAY OF NEGLECT!"
Deep down, it's the same old story.
The world is driven by money.
And a law without economic support
is just paper.
I think this applies to all governments.
Let's not try to politicise this.
But we're especially
outraged by this one
because they've lived this situation
and are deceiving us.
But they didn't do anything before either.
We're here now
because of those in power now
and those before them.
Let's not forget this law was postponed
nearly 50 times
during the previous legislature.
By the very people who had approved it.
And this government kept postponing it.
Because of the parties in this government.
And when the legislature changed,
during the last vote,
the bill was scrapped.
And political parties had to resubmit it.
And it was rejected several times because
it couldn't be included in the budget.
There was no money.
And then they presented not one,
but three ALS laws.
Three political parties presented them
on the very same day
that some were voting on it.
There were three bills.
One proposed, if I remember correctly,
by Junts, another proposed
by Sumar and the PSOE,
and another proposed
by the Partido Popular.
And everyone taking photos.
And a law without support
or funding is useless.
PEOPLE WITH ALS SAY "ENOUGH"
AND SUE SPANISH STATE
FOR NOT ENFORCING THE LAW:
"SO THAT MANY CAN LIVE WITH DIGNITY."
Six months after the ALS Law
was passed, it still lacks funding.
EMOTIONAL DIGNITY
This disease isn't contagious.
It doesn't spread.
That's good.
Yes, because that happened to me.
People who used to see me
and would give me a kiss.
And when they saw me that day,
they didn't even want to come near me.
And I'd tell them, it's fine.
Because I think that a kiss
is one of those things
that was imposed on people.
Kissing as a sign of friendship,
but the genuine kiss,
I don't think that exists.
So, I think she was right not to kiss me,
because if she had kissed me,
she'd have been like Judas, right?
So...
But it really hurt me,
that she thought
my disease was contagious.
Generally speaking, I do feel understood.
There's always that one person
who doesn't know the disease.
And they think I can't hear
or don't understand them.
But my caregivers
always make it very clear.
But what does happen a lot
is people looking at my computer screen
while I'm writing or doing things.
They don't understand that this is
disrespectful and invades my privacy.
When I'm doing things,
it's easy to understand.
It's like someone standing behind you,
looking at what you're doing
on your mobile.
Would you like that?
Well, it's the same.
And when I'm talking to someone,
you shouldn't look at the computer screen
while I'm writing either,
unless I tell you to or you can't hear me
because there's too much noise.
Perhaps because there's no eye contact
with the person you're talking to.
Just as you wouldn't talk to someone
standing behind you without turning round.
Another reason is that they start
guessing out loud what you mean
while you're writing words
letter by letter.
It's as if they're getting in your head
while you think about what to say.
And another thing that is tricky
is not changing the subject
until you know if the person communicating
with their eyes wants to say about it.
Or, as we write very slowly,
not remembering or linking our comment
to the topic that was discussed,
and having to waste more time
explaining the context of your comment.
Those are the situations
that frustrate me the most.
INSTITUTIONAL INACTION
Honestly,
the only place I feel "supported",
is the Miquel Valls Foundation,
which is the one we have,
whether we need a toilet seat
or the doorbell that's broken.
Other than that, I don't believe
in associations or foundations, nothing.
Right from the start,
I threw myself into this fight.
I set up the Reto Todos Unidos collective.
We were the ones who took to the streets.
And that's when ALS started
to become visible, to be heard.
But when you get into this world,
you realise it's all a charade.
For me, it's a charade.
All they care about is their subsidies.
They'd tell us
they needed our support for the march,
to come along on the marches.
No, if we go on the marches,
they might take away our subsidies.
Sorry, but...
you're supposed to be looking after us.
And standing up for us, right?
What I can't stand,
are all these photos,
all this charade,
all this talk and then doing nothing.
I'm involved with the ALS group,
the ALS family group,
and also the lawsuit.
The lawsuit my wife filed,
because she only receives 450 euros.
She used to work,
but dealing with this disease
requires a lot of money.
It's not just about money.
And thank God I'm on disability benefit
because I worked for 40 years.
But there are people
who receive very little
and so can't afford
the care that the disease requires.
ALS PATIENTS SUE THE CENTRAL GOVERNMENFOR FAILING TO COMPLY
WITH THE COMPREHENSIVE CARE LAW.
What everyone needs to realise
is that people are dying.
They talk about the genocide in Gaza.
I don't argue any of that.
But if you let Spanish patients die,
who paid into the system
all their lives...
What do you call that?
Genocide.
We're not going to soften
the term because it isn't that.
So if, because you feel like it,
you let a thousand people die every year,
you're doing the same thing.
I get really angry when I watch the news.
I go crazy.
They talk about human rights
for Palestine.
They talk about aid to hospitals
totalling over 400 million.
They talk about this and that.
And they forget
that it was paid for with my taxes.
But with my taxes, you've passed a law,
with 350 deputies,
and you've done nothing.
You haven't paid a penny.
And it's not just the PSOE.
I don't care, they've all had their turn.
Those very same people
who meet to, I don't know,
forgive a debt or whatever,
could get together, even without the PSOE,
to say, "We've got to give them this."
But they don't do that.
I just don't get it.
I don't understand this.
What we're asking for is very simple,
that Toni receives 24-hour care.
Just like, for example,
what was done through a royal decree
recently approved by the Minister,
which essentially provides a subsidy.
This 10-million-euro subsidy
is to be distributed
by an association
and used to pay all caregivers
for 24 hours coverage,
depending on the needs.
Because in the final stages of ALS,
and often in the early stages too,
there are difficulties not only
with swallowing but also with breathing.
There is a great fear
of choking at night, for example.
So, what we're asking for is very simple.
Then the administration
can work out how to organise it,
to put it bluntly.
We're simply asking
for 24-hour home care for Toni,
so that he, and Yolanda as well,
can live a full life.
Because if Yolanda were
to die from exhaustion one day...
Exhausted.
She nearly had a stroke last year.
Then Toni would die a few hours later.
And that is a silent tragedy
unfolding every day
in hundreds of Spanish families.
ALS PATIENTS DEFEAT GOVERNMENT IN COURT:
"IMMEDIATE HOME CARE FOR ANTONIO."
A Barcelona court ordered authorities
to urgently assist Antonio Luque,
the first patient to sue
following failure to implement the law.
And Yolanda is the proof in the sense
that we already have an admission ruling
and we know that, without fail,
there will be proceedings and a judgement.
I formalized the lawsuit yesterday.
I made an initial request,
which may be more or less complex.
The parties made allegations
to see if it was admissible,
following procedure
because it was debated,
following the proper procedure
set by this court.
And then there is an order
that anticipates the ruling.
Because it's an order
of more than eight pages,
extraordinarily technical,
very logical,
that leaves no room for doubt
regarding the substance of the case.
Complete inaction by the administration,
which causes harm
that is protected by law
and must be prevented,
protected under Articles 14 and 15
of the Constitution.
I would almost say
it anticipates the ruling.
It is highly unlikely
that we will not win this case.
So I waited as long as possible,
until I had this order,
so that another 40 people
who have been involved from the very start
can join what is called
a class action suit.
But strictly speaking, a class action suit
consists, for technical reasons,
of the sum of each individual lawsuit.
We've been at this
for many years and it's all lies.
Total neglect.
There's nothing.
Broken promises, one after another,
after another, after another.
It's something...
There are lots of people
in this country receiving
five hundred euros for nothing.
Give them a thousand
and prepare them to work.
Give them a decent wage
so they can support these people.
Because it's very hard
when the person you love...
It's very frustrating to see
that you can't help them.
It's incredibly frustrating.
That's unjust, given the amount
of money being wasted in this country.
It's being flushed
down the drain for nothing.
So when they tell me
there's no money for the ALS Law,
that's a lie.
There's money for what they want,
especially to take it out of Spain.
I mean, they're completely abandoned.
Completely abandoned.
Why did they legalise euthanasia?
Because it's much easier.
Providing euthanasia is much easier
than providing a dignified life.
Nothing.
Nothing is being done.
Not in research nor in support.
I think it's just political rhetoric,
nothing more.
We think what everyone else thinks.
It gets passed there
but nothing comes of it.
Absolutely nothing.
Yes, ALS is a nightmare.
But for her, for the caregivers and for...
And thank God, I repeat, we're privileged.
But for the caregiver, it's very hard.
It really is hard.
You get used to it.
Look, in the association
we've seen families torn apart.
Truly torn apart.
From the onset of the disease,
a husband and wife
of 30 years splitting up.
You look after the girl,
you dont, whatever.
Splitting up, tearing families apart.
Tearing them apart.
And several of them.
They should provide support,
so we can at least have a dignified life.
We're not asking to live like kings.
A life that's
at the very least, dignified.
And let the caregivers have a break too.
They suffer the disease as well.
And if they go under, so do the patients.
First to Mnica Garca,
the Minister of Health.
It's unbelievable
that they can laugh at us.
An anesthesiologist,
she worked at the 12 de Octubre Hospital.
She's forcing injections on us.
What is she trying to do?
She's passing the buck
to an umbrella organisation.
She's passing the buck.
On top of that,
when you criticise her, she says,
"But I've already reached
an agreement with ConELA.
We have an agreement."
What's more, the very lawsuit
you're preparing the report for...
The judges, the prosecutor's office,
in the lawsuit filed by Yoli,
tell her they already
have the help from ConELA.
But they haven't received a penny.
They don't even know
how to implement it.
The prosecutor himself
seems to have a deal with ConELA.
Even the Ombudsman,
who also spoke out recently,
said that we had help.
And thank God the judge said,
"Gentlemen, these are fundamental rights."
Fundamental rights apply to everyone.
For the poor people
arriving on small boats,
for the Palestinians, for the Ukrainians.
They do have fundamental rights.
For us, there's nothing.
You're on your own, sort it out yourself.
If you go bankrupt, that's it.
Because 90% of families
with ALS are bankrupt.
They're bankrupt.
If they want to live
a somewhat normal life,
without having to shit in a bucket.
They're ruined.
Ten percent or five,
I really don't know how many,
have power...
They have financial power
and can sustain it.
But the other 90% doesn't.
That's what I can't understand.
With the 10 million, nor the aid from...
The ALS Law is the ALS Law.
And from the very first minute,
which is when it's hardest,
from minute 1 to minute 100,
until it's over.
But it's for everyone, not just for...
Let's wait for the tracheostomy,
and then give them money.
Like with the 10 million.
But people can't make it
to the tracheostomy.
They can't make it.
The first thing the doctor asks
is if you have means.
No.
Well look, euthanasia is free.
Right, very well.
Some people do want it.
Some people want the tracheostomy.
Some people want it but can't.
Olga is convinced she doesn't.
Me too, practically.
But there are people
who want to have their trache...
But they can't afford it.
You're killing them, it's genocide.
There's genocide?
This is genocide.
THE DECISION OF CARLOS, THE ALS PATIENT.
IN THE FACE OF A LACK OF SUPPORT:
"I DON'T WANT TO LIVE IN SUFFERING."
THE ALS COMMUNITY
I have a friend who also has ALS,
from Juntumbra.
Rafael,
who worked at the same company I did.
He was a teacher
and I worked in the kitchen.
But we knew each other.
He used to eat there every day.
And I found out that he had ALS too.
When I spoke to my boss and he told me,
I got in touch with him.
And through him,
I've improved a great deal.
I always thought
that tomorrow would be mine.
I had plans for a different future.
And he's helped me enormously with that.
Because of course,
he told me there is no tomorrow.
We have to take each day
as it comes and that's true.
And then there was Jorge Murillo.
I started following him later.
Those two were
a really big help to me.
- Support?
- Yes.
And from there I met Yoli,
I met Isa,
I got to know people
who joined the lawsuit,
and I'm with them now.
What motivates me
is setting myself sports challenges
and also setting myself challenges
in the fight against ALS.
In that regard, I have two projects
that are very interesting to me.
The Team Neobux vs ELA project,
which is a great way
to raise funds for ALS
via a website,
where each participant
can raise up to 10 dollars
by dedicating one minute
of their time each day.
And apart from that,
another project
with far-reaching implications
would be to create
a digital currency for ALS.
This would also serve to raise funds
both for ALS research and to improve
the quality of life
for people living with ALS.
Those two are the projects
I'm most excited about right now.
As well as doing sport,
continuing to set myself
sports challenges and taking part
in events, such as the Alicante Marathon.
It leaves from Elche.
Yes, from Elche to Alicante.
It isn't easy, and it depends a lot
on how the disease takes over your body.
But fortunately,
we are closer to the point
where financial circumstances
won't dictate your life
or that of your loved ones.
The great community
of people living with ALS
and their families will accompany you,
help you, and solve the doubts
that arise along the way.
And who knows when scientists
will make a breakthrough
and find something that halts
or even reverses the disease.
And something very important,
find new hobbies,
goals and reasons for living
to keep your mind off
the disease and negative thoughts.
Well, a lot has changed,
some for the better, others for the worse.
The best part is realising
which people are by your side,
those who are always there for you.
That life is today,
that it's now, that it's this very moment.
It's talking to you right now.
Tomorrow, we don't know.
I've also discovered
a little more about myself.
And that's very important and positive.
And the worst things?
Well, you also realise
that there are people
you thought would be by your side,
but aren't.
I tell everyone who stops me,
when they ask me how I am,
moving forward, always moving forward,
just like the people of Alicante.
This is something that takes its time,
and that's just how it is.
With my wife and my son by my side,
I don't want anyone else.
There's really no advice to give.
I just think that everyone
has to deal with it themselves,
assess it, think it through
and realise that in this life,
this happened to me but it could...
I'd tell everyone to live
as if it were their last day,
because we worry
and stress over trivial things,
and we pay no attention
to what's really important.
I'd tell them above all,
to have plenty of patience.
To live life as best they can.
To keep themselves very distracted.
And to take it all in their stride.
Because this keeps moving forward
and there's nothing to stop it.
No matter how angry or upset we get,
it keeps moving forward
and eats away at you from the inside.
So just stay calm and accept it.
Well, I'd like them
to remember me as someone
who was always smiling and cheerful,
just as I've always been.
And I'd like everyone
to remember me fondly,
not with pity, feeling sorry for me.
No.
None of us are poor souls
just because we're ill.
Each of us will have to face
whatever illness comes our way.
Bear it with the utmost dignity
but let them remember me with joy.
Always with joy, how funny I've been,
the catchphrases
my friends say I have
a whole dictionary of,
all those things.
I want them to remember me with joy
and above all as a fighter,
so that this disease becomes visible
and is researched.
Above all research, into this disease.
I reckon that in ten years' time,
things will have changed significantly.
I believe we'll make progress
and that they'll manage to chronify it.
But I want people to remember me,
above all with joy.
I want joy.
I used to be able to say,
I had a friend, a lover, everything.
Now I have a friend, and he's ill.
But we just celebrated
our 50th anniversary.
How could I leave him now?
I don't know.
It wouldn't be in my heart,
nor would it be me as a person.
I'm going to turn 65.
And I've been with her since I was 13.
Thirteen years.
I said, "Let's see,
if you have to leave me,
leave me when I'm all good."
I say she won't leave me when I'm ill.
But maybe she'll leave me when I'm better.
She's not going to leave me.
Back when I could still walk a bit,
one day I reached for a hanger
in the closet and I fell inside it.
Once I'd checked nothing was broken,
I burst out laughing.
This is what I call coming out.
Someone pull me out of the closet
because I can't get out on my own.
Of course you laugh
because what other choice is there?
If someone gives me a better choice,
I'll take it.
But I think humour
is the only thing that saves us from...
whatever.
ALS has robbed me of my ability
to move, to speak and even to breathe.
But it will never
take away my will to live,
to love and be loved.
Because with the right support,
you can be happy, even with ALS.
I've been very stressed all my life.
And now I'm at peace.
The disease has also
brought me peace of mind.
Me of course, but not those around me.
It's given me a lot of peace of mind.
And I'm happy, I can't say I'm not happy.
Fight for dignity
and 24-hour care as a right.
ALS exists, and together we will beat ALS.
It hit me like a bucket of cold water.
It was an incurable disease,
a neurological condition,
and in most cases,
the prognosis was very short-term.
The only hope I had was that someone
had to be the first to be cured.
Why couldn't it be my son?
It was like a bullet to the head.
Yes, they'd already told me...
I was going to die.
ALS
They asked me to come
and I said to my daughter,
"Come with me,
because what they'll say won't be good."
Well, I accepted it from the very start
because I knew I had something bad.
On 21 December 2015, the diagnosis came.
You have ALS.
Not even an explanation of the disease.
Absolute silence.
And you drive home on your own
after that devastating blow.
This happens to whoever it happens to.
You can't buy your way out of it.
It's your turn and that's it.
Age doesn't matter, nothing does.
There's nothing you can do.
Well, it was a rather peculiar moment
because I'm a doctor.
And from my perspective as a doctor,
the ALS diagnosis...
I'm an ophthalmologist,
so it hit me like a disease,
from which I remembered
from 30 years earlier,
when I was studying medicine,
that it was an incurable disease.
That it was a neurological disease.
And that the prognosis in most cases,
was very short-term.
So when they told me, of course,
it hit me like a bucket of cold water.
I'd been doing sport five days a week.
And suddenly I was in a hospital
where they tell me this.
Dr Death told me he wasn't sure,
as my physical appearance
didn't fit the profile of the disease.
And the next day he told me it was ALS.
It was quite unpleasant
as the doctor tactlessly dropped on me
that I had less than five years to live.
It was a disappointment
because, when I retired,
I thought I'd be able to do lots of things
and travel.
We used to travel a lot,
and that was cut short completely.
On 21 December 2015, the diagnosis came.
You have ALS.
And I got the diagnosis
in a very unpleasant way.
They called me while I was at work
and asked me to go
to the hospital urgently
because they needed to speak to me.
They didn't suggest I come with anyone,
knowing that I live in Torrejn
and worked in Tres Cantos,
more than 30 kilometres
from that hospital.
And when they told me I had ALS,
they didn't even explain the disease.
Complete silence.
And you drive home on your own
after that devastating blow.
I burst into tears,
because we'd suspected as much.
And besides, I had lived through
this disease from the outside.
I knew it was harsh,
cruel and had a tragic ending.
And worst of all,
it wasn't the law of life.
Well, I was at the hospital.
My daughter was with me.
They'd asked me to come
and I said to my daughter,
"Come with me,
because what they'll say won't be good."
Because I'd been asking
for favours for a year,
begging them to examine me,
and tell me what was wrong with me.
Then just like that, they told me.
Well, I accepted it straight away,
because I already knew
I had something bad.
THE DISEASE
Taking care of all my basic needs,
doing it all by myself,
without having to ask for help.
And that was the hardest part.
Because your nose might itch,
you might be thirsty,
but if nobody gives it to you...
well, you don't drink any water.
So you need...
someone, in this case my wife,
someone to do everything for me.
And that's when you realise...
how hard it is
to be unable to do anything.
And always asking.
It's like a light switch.
It switches on and off
in a second, doesn't it?
And that's what life is like
for someone with ALS.
You go to the doctor, flick the switch
and your life's been taken away.
Like the light.
In a second.
Yes, because at first
I thought I had Parkinson's.
I was falling all the time.
And when I started looking into it,
I thought it could be
multiple sclerosis or atrophy.
And it turned out to be the case.
When they told me it was ALS,
I thought at least I know what I'm in for.
I ended up in a wheelchair, okay.
But as long as I can speak
and my mind is working, I can carry on.
I've had it for four years now.
At first, I spent nearly three years
without anyone knowing what I had.
I had pain in my arms,
pain in my shoulders.
I had no strength in my hands.
And last year,
exactly a year ago tomorrow,
I was diagnosed with ALS.
I first noticed the symptoms
in June 2015
and, the truth is, several strange things
happened at the beginning.
From getting startled by nothing,
getting emotional over silly things,
a bit of fatigue when speaking quickly
or climbing the stairs.
But what really made me worry
was picking up a pen one day
to jot something down in my work diary
and realising I couldn't grip
the pen properly or write.
Like when your hand is frozen
in winter and it's hard to write.
A few days earlier,
I'd felt very clumsy with chopsticks.
But of course, I didn't think much of it.
When I looked closely
at my right index finger,
I realised it took a great deal
of effort to straighten it completely.
At first you think
you're trapped in a nightmare.
When you realise you're not waking up,
you refuse to believe it.
You think this can't possibly
be happening to you.
I'd like people to know
that it can happen to anyone.
The disease isn't caused
by poor self-care
or living an unhealthy lifestyle.
Well, for me it was quite hard.
I was working abroad when she rang.
She was with her daughter
when they told her.
I had to come back in a hurry.
And I couldn't come to terms with it.
I was off work for seven months.
On medication, with...
Completely different to how she is.
Completely different.
She's the cheerful one
and I'm the depressed one.
I mean, she's giving me strength.
For me it's much worse than for her.
The spirit she has,
I haven't had in my life.
That's really bad.
What's the hardest thing for me?
That it happened to my son.
ROUTINE AND LIMITATIONS
I'm gradually becoming incapacitated,
and every day I realise
I'm able to do fewer things.
Now I'm really slowing down.
And my left hand's no good either,
and every day I feel more useless.
Well, the hardest thing at the time
to accept about the disease
was realising that the progression of ALS
was going to prevent me
from playing sport the way I liked to.
I mean, playing football,
playing five-a-side,
taking part in various sports activities
like swimming and cycling.
But well, I had to adapt and that's it.
I'm still playing sports,
but in an adapted way.
ALWAYS IN OUR HEARTS
Well, there are lots
of things you don't realise
until you lose them, right?
Because I played football
and I always really enjoyed running.
And losing that, well,
it makes your internal life hard too.
Because your character changes.
Perhaps you find yourself
snapping at people quite often.
There were many things
I couldn't do while working.
Things I can do now.
And I enjoy it and live it.
And people often say to me,
"Hey, Dara, what if they told you
you could go back to work?"
I'd say, "Working the way I used to, no."
But I do things I couldn't do before.
I mean, things I value more now.
I didn't have them before
and couldn't appreciate them either.
That's why I tell people
to find the positive side of the disease.
Never dwell on the bad stuff.
I actually have to travel tomorrow.
I have to go to the doctor's.
And it's in Huelva.
It's about 45 minutes by ambulance.
An ambulance that I say,
was ready for the scrap heap
and was assigned to us for transport.
And the road isn't exactly
suitable for taking us either.
These are the shared ambulances.
They don't just take me.
They take other people
unless it's an emergency,
in which case I'd go on my own.
But this one carries other people.
It takes at least five people.
And from the moment we leave home,
it's a bit of a bumpy ride.
And if we hit a pothole, just imagine.
It's a bit rough.
ALS PATIENTS PROTEST AT THE CONGRESS
AGAINST SANCHEZ'S NEGLECAND SMOKE SCREENS
Dozens protest the government's
political exploitation of their disease,
one year after the ALS Law was passed.
My current daily life is quite routine,
because you need a set routine
to make the day more bearable.
I don't get up very early in the morning.
By 9 o'clock, they administer
my medication and first feed via the tube.
While the food passes,
which takes an hour or an hour and a half,
I watch TV series or films
while I'm still in bed.
When the food finishes, they clean
the PEG and tracheostomy sites,
the holes, so to speak.
Next, they brush my teeth, and then
we start with the stretching
and physiotherapy exercises.
After that, it's time
for my personal hygiene routine in bed.
Once that's done,
they put the harness on me and,
with the hoist, take me to the living room
and place me into the recliner,
where I'll stay all day
until I go back to bed.
By this point, I'm already connected
to the world and to everyone,
as they've set up my computer for me.
This is around 11 or 11.15 in the morning.
From then on, I'm on my own.
And I start with the thousand things
I do each day.
Things I don't have hours in the day for,
and which I'll list later.
At lunchtime,
they hook me up to the feeding tube
and give me another round of tablets.
I'm completely limited.
For one thing, I can't get
into places in my wheelchair.
And for another,
I don't feel like going out either.
Because I go out in the morning,
but by the afternoon
I don't feel like going out anymore.
Although I can get out onto the street,
I have to rely on someone
to help me get down.
But, as the neurologist told me,
the disease is progressing adequately.
What do we do in the morning?
Let's just take a stroll
back home, and that's it.
It's about having fun.
Enjoying what's around you, that's all.
And being happy with what's around you.
I mean, as far as is possible.
But I do enjoy it.
In my own way, I do enjoy it.
Yes, because it's like looking at someone
and knowing you're helping
someone who needs it.
Without it turning into pity.
I want to emphasise that.
Empathy above all,
without slipping into pity.
I don't want, so to speak,
to be a burden to anyone.
Because everyone has their own problems.
My husband, the person who comes to help.
So, I can still look after myself a bit.
And they help me a great deal.
But the day I become dependent
on them for absolutely everything...
Well, yes, that does scare me.
NO 10,000 EUROS, NO PHYSIOTHERAPIST:
ALS PATIENTS FEEL BETRAYED
BY SPANISH GOVERNMENT.
AdELA claims the law has yet
to be implemented after a year,
and that the 500 million euros
in aid promised
would reach few patients
(who aren't receiving it).
What gives me the most strength is simple.
My will to live.
As a good engineer, I'm agnostic.
I believe only
in that for which there is evidence.
And this is the only life
that is 100% known to exist.
And I'm terrified of disappearing,
of ceasing to exist.
That's why we must live
and make the most of this life.
The key to having
a will to live is to feel useful,
to have goals, however small they are,
and to do things you like and enjoy.
I also draw strength from spending time
with my family and friends.
Like watching my niece grow up.
And why not say it,
finding a partner with whom
I can enjoy everyday life.
After all, as my current life motto says,
ALS has robbed me of my ability to move,
to speak and even to breathe.
But it will never take away
my will to live, to love and to be loved.
The problem with ALS is
that it completely changes your life.
That is to say,
you become totally dependent
in a very short time.
It left me in a wheelchair within a year.
It made it impossible for me to work
in little more than that.
I was a surgeon, and obviously,
a surgeon's skill is essential.
I'd already started,
although it began with my lower limbs.
There were already
small signs in my upper limbs.
And that made me decide
that I obviously had to give it up.
I had to give up my job,
a very difficult decision.
When you're mentally
more than ready for it.
You can cope.
You can cope because it's her.
She has more courage than anyone else.
If she were depressed, I'd be done for.
She's the one who cheers everyone up,
the one who lifts them up.
THE CAREGIVERS
We were two free spirits
who found ourselves grounded.
We used to be more independent.
She worked, and so did I. Had my life.
- I used to work.
- It was "good morning" and little else.
Sometimes he didn't know that I was here.
We used to have a different life.
Abael was young too,
and I think he needed his freedom.
And now, of course,
his freedom is limited.
As for the other care we receive...
We don't have 24-hour care.
No one has that sort
of help at the moment.
Home help is three hours a day.
I sometimes wonder,
"Does that mean that after three hours,
I no longer have ALS?"
If I only have those three hours of help,
the rest of the day,
there's nothing for me.
You do it because, in my case,
I love my husband so much
that you just do it without realising it.
You just start to care, care, care.
But the years go by,
because Toni's illness has,
thank God, progressed slowly.
But you start to care for him
and you don't look after yourself.
You forget everything.
Or if I got sick,
I didn't look after myself.
The caregiver is
the eternally forgotten one,
and we don't have the luxury
of getting sick ourselves.
Unless something serious comes along,
as was my case.
After many years of looking after him...
I started having memory lapses.
It was because of some medication
I was given.
I got scared because I'd also taken care
of my mother who had Alzheimer's.
I thought I had early-onset Alzheimer's.
I went to see a neurologist
and they examined me.
And after running all the tests and so on,
they ruled out Alzheimer's,
but they told me I had
to undergo life-or-death surgery.
I had a brain malformation,
which I still have,
and a cerebral aneurysm.
This is why I needed the operation
because I could have died at any moment.
And I didn't know if I'd come out
of the operating room alive or not.
And the first thing I thought of was him.
If something happens to me?
Who'll look after him?
Well, Jorge Braga often said,
and it's true,
day after day after day.
And I don't say a word to him.
But you know, you look at him,
you keep your mouth shut
and you swallow it and just look at him.
Day in, day out, and that's it.
And the people who see you...
I love putting on make-up
and wearing lipstick...
Then people will say,"Oh, oh."
But I honestly don't care.
It's what's on the inside that counts.
What you have inside.
SIX YEARS LATER,
NO SUPPORT FOR ALS PATIENTS.
On 28 February 2026,
ALS patient Jordi Sabat
posted the following message
on his social media accounts:
"It's been six years today
since Pedro Snchez publicly promised me
that his government would provide
living allowances for ALS patients."
Me too.
Well, my brothers call me, and you know...
But well, they also say, "Damn it."
But that's it.
No...
It builds up, you know?
The caregiver thing, after so many years,
it builds up.
In fact, every four or five months
I have to keep seeing the psychiatrist.
Just for a "How are you?", "I'm fine."
"Medication?", " Well, no."
Or now yes, or I don't know.
An Orfidal to sleep.
And that's just how it is.
But you can cope with it.
Sometimes with pills, but you cope.
So you don't have
a single minute away from...
But well.
Whether it's ALS
or any other disease like that is
so severely limiting,
It's tiring.
It's tiring because I'm here
with her all day long.
Whether in the living room or my room,
or doing whatever.
But every so often,
"Move me, put me to bed,
get me a glass of juice,
change the channel..."
And it's a bit tiring.
But it is what it is.
Tony was a person...
We'd never had a single argument.
We've always travelled a great deal.
We've lived life to the full.
And once this disease set in,
not in the early years,
but as the disease began to evolve,
well, he started to change.
I understand that because
he's the one trapped inside his own body.
But what I've always tried to make him see
is that he has the disease
and he's the one who suffers it.
But I'm his hand, his arms, his voice.
He speaks but I'm his voice.
I talk to the doctors.
I'm the one in the midst
of this huge battle we're in.
And I suffer from ALS too.
Denial, like everyone else.
Total denial.
Denial.
The only hope I had was that someone
had to be the first to be cured.
Why couldn't it be my son?
That was my obsession.
The idea of...
But then every day it got worse.
Every day he was...
He was getting worse and worse.
He actually didn't want us
to ask him, "How are you today?"
He'd say, "Why are you asking me?
You know how I am.
Worse than yesterday."
The day to day, well actually...
Our situation is a bit unusual,
because he doesn't live here.
He lives 300 kilometres away.
They say out of sight, out of mind.
But that isn't true.
So what has changed is that perhaps
you stop doing things just in case.
I never make long-term plans.
Short-term plans
with him and with my partner,
and I socialise a lot.
I don't just sit at home.
The walls aren't caving in on me.
On the day of the blackout,
I wasn't at home.
That day was...
Well, I don't want to live it again.
The power went out at work.
Then you find out it's all over Spain.
Then you think...
I think of Jorge straight away.
I think of his devices.
WhatsApp isn't working either.
I knew they had a talk
at a high school in Torrejn de Ardoz.
Did it catch them in the lift?
Had they already got home?
You start imagining all sorts of things.
Well.
I managed to find out
that it had caught them
with Jorge already
settled in the armchair,
because that's electric too.
They'd just got back from the school.
And by then Jorge was settled in his spot.
But in one of the messages
that came through every now and then,
Jorge said he had
eight hours of battery life left.
I went crazy.
They treated him really well.
But of course, you don't know that
because there's no communication.
So, what was going on?
What was going on?
They sorted it out really well.
Later I found out
that the police and the ambulances
had carried him down the stairs
and taken him to the hospital
in Torrejn de Ardoz,
where they already had generators.
And when I found that out,
I burst into tears.
It all came flooding out.
It all came flooding out
because it was no longer eight hours.
Well, that probably made me more patient,
and him more impatient.
We used to be the opposite.
So we complement each other like that.
But what do I value?
Well, I value being with my family and...
And in a manner of speaking,
I'm thankful to God
that we're retired and I can do this.
Because I used to work, of course.
So I couldn't dedicate more time...
Quality time, so to speak.
So, now we go out,
go for walks or do a route
that's accessible for a wheelchair.
We look for alternatives.
Well, positive.
I've got to stay positive.
I can't just curl up in a corner and cry.
Because I've got to fight.
We do, we have that thing.
We make a lot of jokes.
I tease her a lot.
I might turn up in the morning
and tell her how many kilometres I've run.
She also asks me if my back hurts.
She tells me to put on some cream.
That today she doesn't feel
like getting her hands dirty.
She tells me not to put the cream on
as she doesn't want dirty hands.
That's how we joke about the disease.
We do.
Manolo's more serious about that, right?
The husband's more serious.
But the two of us are a couple of jokers.
And it goes on all day.
At first, it was really frustrating
not being able to understand his gestures.
Because when he's not on the computer,
how do you understand him?
But little by little
you start to understand him.
You also get to know his little quirks.
And it's all a matter of time.
Little by little you start
to understand each other.
And you come to know
what bothers him and what doesn't.
So...
And you learn something new every day.
Every day there's something new,
where you think I've got to change this
because it's better that way.
Jorge as a boss, is just like anyone else.
He's got his character.
He's not afraid to tell you things.
Perhaps he lacks a bit of tact at times,
but it's always to improve.
And my relationship with him is the same.
I'll always tell him if something
makes me uncomfortable or bothers me.
But always with respect.
It's like everything.
In the bad or frustrating moments,
I tell myself I'm here because
many good things have happened to me.
So it's not all bad.
Don't focus on the negative.
It's not all bad.
And we really enjoy watching football,
watching motor racing, Formula 1, MotoGP.
So there are lots of things
to do and share with him.
What I want to emphasise most is empathy,
and not to feel sorry for him.
Because if I don't feel pity
for a normal person, let's say,
under normal circumstances,
I don't have to feel
pity for a sick person
simply because they are sitting down.
No, quite the opposite.
They need our attention,
our support, our love,
just like anyone else.
So I think the most important
message I can leave is
empathy without resorting to pity.
BARRIERS
The other day I went out for a walk
and...
I came across a zebra crossing
where the kerbs hadn't been lowered.
I couldn't cross the street.
So I kept going along that pavement,
a narrow one,
where my wheelchair just fit.
And to my surprise, I came across
a lamppost right there
on that same pavement.
So I couldn't get past it.
Thank goodness I could back up
and managed to get a bit of control.
But I could very easily
have fallen off the kerb.
A kerb about 15 centimetres high.
And I could have hurt myself badly.
And I might have been stuck there,
because I can't...
If I fall to the ground,
I can't get up or move my hands.
I was with someone at the time.
But I'm a dead weight,
which is very hard for one person to lift.
And the wheelchair weighs 150 kilos.
And well, those problems,
those obstacles...
People who don't have them don't see them.
That happened to me too,
because I used to be fine
and didn't see those problems.
I'd see people
in wheelchairs or on crutches.
But I didn't really see them.
And now I see it all.
I had a rental car that I had to swap
because the electric wheelchair
didn't fit in the boot.
So I got another one,
and shortly afterwards
I had to swap again.
I found a taxi driver
who was getting rid of an adapted car,
so we took it.
Another loan, another whatnot.
But now we have an adapted van,
an old taxi with 300,000 kilometres.
But we don't mind.
In Zaragoza it's easy,
you get about by taxi.
But maybe she wants
to go to the village or we're off to...
If we can.
Tomorrow we're off to Bilbao to the home
of a father whose son who died of ALS.
It used to be a cider house.
Do you know it?
And he's very fond of us, of all patients.
We're going for a few days
to get away from it all.
And that's the freedom of the car.
But not everyone has that.
I mean, we're privileged.
We're privileged now.
Even if we're the poorest people
in the world, we're privileged.
Because you see cases
in the association where you think,
a person alone, or a young kid
with parents in their 70s or 80s
can't even move them.
And you think, damn, that's a real shame.
MEDIA CRITICISM
So, will there be a cure?
Yes, the problem is when.
Because, as hard as it may seem to us,
when society doesn't care about something,
it just doesn't care.
We've seen it with COVID.
Why was a vaccine for COVID,
with all its risks, whatever the debate,
found so quickly?
Because a vaccine
usually takes years and years.
Because it was a matter of urgency.
Because millions of people were dying.
And so it was easier
and more sensible to take certain risks
than to let everyone die.
This is the same thing.
It is, thank God, a minority disease.
But that's unfortunate
for the person who has it.
Because it's not of obvious interest.
If this were two million people,
politicians would be scrambling
for those two million votes.
That's the problem.
If it were two million,
they'd be scrambling.
And they wouldn't care.
But as there are four thousand people,
they don't really
want to say they don't care,
but God forbid anyone else
ever goes through this again.
But I can't imagine the responsibility
that falls on a person
who has had the power to pass a law,
which tomorrow
might affect them personally.
If the full message never reaches
the public or the politicians...
It doesn't matter if you send
politicians the message or not.
They don't care.
I mean, they've got themselves
in an issue and a downward spiral.
And they won't get out of it
until it affects one of them personally.
Who am I? I don't know.
But they cut a lot.
The press is very, how do you say it,
very heavily censored.
Because there are things
that they don't want to be said.
Both with this disease
and others, mind you.
The same thing
is happening with other diseases.
They censor.
And I think a lot of people
don't even know what's going on.
They don't know.
Many people have told me,
"You can't complain with the ALS Law."
I say, "What Law?
I'm not getting anything."
I say yes, but I'm not getting anything.
Otherwise I wouldn't be protesting.
People think
they're helping us when it's a lie.
And we need to let people know
that they make promises,
but their words don't match their actions.
ALS PATIENTS LAMENT THE LACK OF AID
SEVEN MONTHS AFTER THE LAW WAS PASSED:
"NOT ONE MORE DAY OF NEGLECT!"
Deep down, it's the same old story.
The world is driven by money.
And a law without economic support
is just paper.
I think this applies to all governments.
Let's not try to politicise this.
But we're especially
outraged by this one
because they've lived this situation
and are deceiving us.
But they didn't do anything before either.
We're here now
because of those in power now
and those before them.
Let's not forget this law was postponed
nearly 50 times
during the previous legislature.
By the very people who had approved it.
And this government kept postponing it.
Because of the parties in this government.
And when the legislature changed,
during the last vote,
the bill was scrapped.
And political parties had to resubmit it.
And it was rejected several times because
it couldn't be included in the budget.
There was no money.
And then they presented not one,
but three ALS laws.
Three political parties presented them
on the very same day
that some were voting on it.
There were three bills.
One proposed, if I remember correctly,
by Junts, another proposed
by Sumar and the PSOE,
and another proposed
by the Partido Popular.
And everyone taking photos.
And a law without support
or funding is useless.
PEOPLE WITH ALS SAY "ENOUGH"
AND SUE SPANISH STATE
FOR NOT ENFORCING THE LAW:
"SO THAT MANY CAN LIVE WITH DIGNITY."
Six months after the ALS Law
was passed, it still lacks funding.
EMOTIONAL DIGNITY
This disease isn't contagious.
It doesn't spread.
That's good.
Yes, because that happened to me.
People who used to see me
and would give me a kiss.
And when they saw me that day,
they didn't even want to come near me.
And I'd tell them, it's fine.
Because I think that a kiss
is one of those things
that was imposed on people.
Kissing as a sign of friendship,
but the genuine kiss,
I don't think that exists.
So, I think she was right not to kiss me,
because if she had kissed me,
she'd have been like Judas, right?
So...
But it really hurt me,
that she thought
my disease was contagious.
Generally speaking, I do feel understood.
There's always that one person
who doesn't know the disease.
And they think I can't hear
or don't understand them.
But my caregivers
always make it very clear.
But what does happen a lot
is people looking at my computer screen
while I'm writing or doing things.
They don't understand that this is
disrespectful and invades my privacy.
When I'm doing things,
it's easy to understand.
It's like someone standing behind you,
looking at what you're doing
on your mobile.
Would you like that?
Well, it's the same.
And when I'm talking to someone,
you shouldn't look at the computer screen
while I'm writing either,
unless I tell you to or you can't hear me
because there's too much noise.
Perhaps because there's no eye contact
with the person you're talking to.
Just as you wouldn't talk to someone
standing behind you without turning round.
Another reason is that they start
guessing out loud what you mean
while you're writing words
letter by letter.
It's as if they're getting in your head
while you think about what to say.
And another thing that is tricky
is not changing the subject
until you know if the person communicating
with their eyes wants to say about it.
Or, as we write very slowly,
not remembering or linking our comment
to the topic that was discussed,
and having to waste more time
explaining the context of your comment.
Those are the situations
that frustrate me the most.
INSTITUTIONAL INACTION
Honestly,
the only place I feel "supported",
is the Miquel Valls Foundation,
which is the one we have,
whether we need a toilet seat
or the doorbell that's broken.
Other than that, I don't believe
in associations or foundations, nothing.
Right from the start,
I threw myself into this fight.
I set up the Reto Todos Unidos collective.
We were the ones who took to the streets.
And that's when ALS started
to become visible, to be heard.
But when you get into this world,
you realise it's all a charade.
For me, it's a charade.
All they care about is their subsidies.
They'd tell us
they needed our support for the march,
to come along on the marches.
No, if we go on the marches,
they might take away our subsidies.
Sorry, but...
you're supposed to be looking after us.
And standing up for us, right?
What I can't stand,
are all these photos,
all this charade,
all this talk and then doing nothing.
I'm involved with the ALS group,
the ALS family group,
and also the lawsuit.
The lawsuit my wife filed,
because she only receives 450 euros.
She used to work,
but dealing with this disease
requires a lot of money.
It's not just about money.
And thank God I'm on disability benefit
because I worked for 40 years.
But there are people
who receive very little
and so can't afford
the care that the disease requires.
ALS PATIENTS SUE THE CENTRAL GOVERNMENFOR FAILING TO COMPLY
WITH THE COMPREHENSIVE CARE LAW.
What everyone needs to realise
is that people are dying.
They talk about the genocide in Gaza.
I don't argue any of that.
But if you let Spanish patients die,
who paid into the system
all their lives...
What do you call that?
Genocide.
We're not going to soften
the term because it isn't that.
So if, because you feel like it,
you let a thousand people die every year,
you're doing the same thing.
I get really angry when I watch the news.
I go crazy.
They talk about human rights
for Palestine.
They talk about aid to hospitals
totalling over 400 million.
They talk about this and that.
And they forget
that it was paid for with my taxes.
But with my taxes, you've passed a law,
with 350 deputies,
and you've done nothing.
You haven't paid a penny.
And it's not just the PSOE.
I don't care, they've all had their turn.
Those very same people
who meet to, I don't know,
forgive a debt or whatever,
could get together, even without the PSOE,
to say, "We've got to give them this."
But they don't do that.
I just don't get it.
I don't understand this.
What we're asking for is very simple,
that Toni receives 24-hour care.
Just like, for example,
what was done through a royal decree
recently approved by the Minister,
which essentially provides a subsidy.
This 10-million-euro subsidy
is to be distributed
by an association
and used to pay all caregivers
for 24 hours coverage,
depending on the needs.
Because in the final stages of ALS,
and often in the early stages too,
there are difficulties not only
with swallowing but also with breathing.
There is a great fear
of choking at night, for example.
So, what we're asking for is very simple.
Then the administration
can work out how to organise it,
to put it bluntly.
We're simply asking
for 24-hour home care for Toni,
so that he, and Yolanda as well,
can live a full life.
Because if Yolanda were
to die from exhaustion one day...
Exhausted.
She nearly had a stroke last year.
Then Toni would die a few hours later.
And that is a silent tragedy
unfolding every day
in hundreds of Spanish families.
ALS PATIENTS DEFEAT GOVERNMENT IN COURT:
"IMMEDIATE HOME CARE FOR ANTONIO."
A Barcelona court ordered authorities
to urgently assist Antonio Luque,
the first patient to sue
following failure to implement the law.
And Yolanda is the proof in the sense
that we already have an admission ruling
and we know that, without fail,
there will be proceedings and a judgement.
I formalized the lawsuit yesterday.
I made an initial request,
which may be more or less complex.
The parties made allegations
to see if it was admissible,
following procedure
because it was debated,
following the proper procedure
set by this court.
And then there is an order
that anticipates the ruling.
Because it's an order
of more than eight pages,
extraordinarily technical,
very logical,
that leaves no room for doubt
regarding the substance of the case.
Complete inaction by the administration,
which causes harm
that is protected by law
and must be prevented,
protected under Articles 14 and 15
of the Constitution.
I would almost say
it anticipates the ruling.
It is highly unlikely
that we will not win this case.
So I waited as long as possible,
until I had this order,
so that another 40 people
who have been involved from the very start
can join what is called
a class action suit.
But strictly speaking, a class action suit
consists, for technical reasons,
of the sum of each individual lawsuit.
We've been at this
for many years and it's all lies.
Total neglect.
There's nothing.
Broken promises, one after another,
after another, after another.
It's something...
There are lots of people
in this country receiving
five hundred euros for nothing.
Give them a thousand
and prepare them to work.
Give them a decent wage
so they can support these people.
Because it's very hard
when the person you love...
It's very frustrating to see
that you can't help them.
It's incredibly frustrating.
That's unjust, given the amount
of money being wasted in this country.
It's being flushed
down the drain for nothing.
So when they tell me
there's no money for the ALS Law,
that's a lie.
There's money for what they want,
especially to take it out of Spain.
I mean, they're completely abandoned.
Completely abandoned.
Why did they legalise euthanasia?
Because it's much easier.
Providing euthanasia is much easier
than providing a dignified life.
Nothing.
Nothing is being done.
Not in research nor in support.
I think it's just political rhetoric,
nothing more.
We think what everyone else thinks.
It gets passed there
but nothing comes of it.
Absolutely nothing.
Yes, ALS is a nightmare.
But for her, for the caregivers and for...
And thank God, I repeat, we're privileged.
But for the caregiver, it's very hard.
It really is hard.
You get used to it.
Look, in the association
we've seen families torn apart.
Truly torn apart.
From the onset of the disease,
a husband and wife
of 30 years splitting up.
You look after the girl,
you dont, whatever.
Splitting up, tearing families apart.
Tearing them apart.
And several of them.
They should provide support,
so we can at least have a dignified life.
We're not asking to live like kings.
A life that's
at the very least, dignified.
And let the caregivers have a break too.
They suffer the disease as well.
And if they go under, so do the patients.
First to Mnica Garca,
the Minister of Health.
It's unbelievable
that they can laugh at us.
An anesthesiologist,
she worked at the 12 de Octubre Hospital.
She's forcing injections on us.
What is she trying to do?
She's passing the buck
to an umbrella organisation.
She's passing the buck.
On top of that,
when you criticise her, she says,
"But I've already reached
an agreement with ConELA.
We have an agreement."
What's more, the very lawsuit
you're preparing the report for...
The judges, the prosecutor's office,
in the lawsuit filed by Yoli,
tell her they already
have the help from ConELA.
But they haven't received a penny.
They don't even know
how to implement it.
The prosecutor himself
seems to have a deal with ConELA.
Even the Ombudsman,
who also spoke out recently,
said that we had help.
And thank God the judge said,
"Gentlemen, these are fundamental rights."
Fundamental rights apply to everyone.
For the poor people
arriving on small boats,
for the Palestinians, for the Ukrainians.
They do have fundamental rights.
For us, there's nothing.
You're on your own, sort it out yourself.
If you go bankrupt, that's it.
Because 90% of families
with ALS are bankrupt.
They're bankrupt.
If they want to live
a somewhat normal life,
without having to shit in a bucket.
They're ruined.
Ten percent or five,
I really don't know how many,
have power...
They have financial power
and can sustain it.
But the other 90% doesn't.
That's what I can't understand.
With the 10 million, nor the aid from...
The ALS Law is the ALS Law.
And from the very first minute,
which is when it's hardest,
from minute 1 to minute 100,
until it's over.
But it's for everyone, not just for...
Let's wait for the tracheostomy,
and then give them money.
Like with the 10 million.
But people can't make it
to the tracheostomy.
They can't make it.
The first thing the doctor asks
is if you have means.
No.
Well look, euthanasia is free.
Right, very well.
Some people do want it.
Some people want the tracheostomy.
Some people want it but can't.
Olga is convinced she doesn't.
Me too, practically.
But there are people
who want to have their trache...
But they can't afford it.
You're killing them, it's genocide.
There's genocide?
This is genocide.
THE DECISION OF CARLOS, THE ALS PATIENT.
IN THE FACE OF A LACK OF SUPPORT:
"I DON'T WANT TO LIVE IN SUFFERING."
THE ALS COMMUNITY
I have a friend who also has ALS,
from Juntumbra.
Rafael,
who worked at the same company I did.
He was a teacher
and I worked in the kitchen.
But we knew each other.
He used to eat there every day.
And I found out that he had ALS too.
When I spoke to my boss and he told me,
I got in touch with him.
And through him,
I've improved a great deal.
I always thought
that tomorrow would be mine.
I had plans for a different future.
And he's helped me enormously with that.
Because of course,
he told me there is no tomorrow.
We have to take each day
as it comes and that's true.
And then there was Jorge Murillo.
I started following him later.
Those two were
a really big help to me.
- Support?
- Yes.
And from there I met Yoli,
I met Isa,
I got to know people
who joined the lawsuit,
and I'm with them now.
What motivates me
is setting myself sports challenges
and also setting myself challenges
in the fight against ALS.
In that regard, I have two projects
that are very interesting to me.
The Team Neobux vs ELA project,
which is a great way
to raise funds for ALS
via a website,
where each participant
can raise up to 10 dollars
by dedicating one minute
of their time each day.
And apart from that,
another project
with far-reaching implications
would be to create
a digital currency for ALS.
This would also serve to raise funds
both for ALS research and to improve
the quality of life
for people living with ALS.
Those two are the projects
I'm most excited about right now.
As well as doing sport,
continuing to set myself
sports challenges and taking part
in events, such as the Alicante Marathon.
It leaves from Elche.
Yes, from Elche to Alicante.
It isn't easy, and it depends a lot
on how the disease takes over your body.
But fortunately,
we are closer to the point
where financial circumstances
won't dictate your life
or that of your loved ones.
The great community
of people living with ALS
and their families will accompany you,
help you, and solve the doubts
that arise along the way.
And who knows when scientists
will make a breakthrough
and find something that halts
or even reverses the disease.
And something very important,
find new hobbies,
goals and reasons for living
to keep your mind off
the disease and negative thoughts.
Well, a lot has changed,
some for the better, others for the worse.
The best part is realising
which people are by your side,
those who are always there for you.
That life is today,
that it's now, that it's this very moment.
It's talking to you right now.
Tomorrow, we don't know.
I've also discovered
a little more about myself.
And that's very important and positive.
And the worst things?
Well, you also realise
that there are people
you thought would be by your side,
but aren't.
I tell everyone who stops me,
when they ask me how I am,
moving forward, always moving forward,
just like the people of Alicante.
This is something that takes its time,
and that's just how it is.
With my wife and my son by my side,
I don't want anyone else.
There's really no advice to give.
I just think that everyone
has to deal with it themselves,
assess it, think it through
and realise that in this life,
this happened to me but it could...
I'd tell everyone to live
as if it were their last day,
because we worry
and stress over trivial things,
and we pay no attention
to what's really important.
I'd tell them above all,
to have plenty of patience.
To live life as best they can.
To keep themselves very distracted.
And to take it all in their stride.
Because this keeps moving forward
and there's nothing to stop it.
No matter how angry or upset we get,
it keeps moving forward
and eats away at you from the inside.
So just stay calm and accept it.
Well, I'd like them
to remember me as someone
who was always smiling and cheerful,
just as I've always been.
And I'd like everyone
to remember me fondly,
not with pity, feeling sorry for me.
No.
None of us are poor souls
just because we're ill.
Each of us will have to face
whatever illness comes our way.
Bear it with the utmost dignity
but let them remember me with joy.
Always with joy, how funny I've been,
the catchphrases
my friends say I have
a whole dictionary of,
all those things.
I want them to remember me with joy
and above all as a fighter,
so that this disease becomes visible
and is researched.
Above all research, into this disease.
I reckon that in ten years' time,
things will have changed significantly.
I believe we'll make progress
and that they'll manage to chronify it.
But I want people to remember me,
above all with joy.
I want joy.
I used to be able to say,
I had a friend, a lover, everything.
Now I have a friend, and he's ill.
But we just celebrated
our 50th anniversary.
How could I leave him now?
I don't know.
It wouldn't be in my heart,
nor would it be me as a person.
I'm going to turn 65.
And I've been with her since I was 13.
Thirteen years.
I said, "Let's see,
if you have to leave me,
leave me when I'm all good."
I say she won't leave me when I'm ill.
But maybe she'll leave me when I'm better.
She's not going to leave me.
Back when I could still walk a bit,
one day I reached for a hanger
in the closet and I fell inside it.
Once I'd checked nothing was broken,
I burst out laughing.
This is what I call coming out.
Someone pull me out of the closet
because I can't get out on my own.
Of course you laugh
because what other choice is there?
If someone gives me a better choice,
I'll take it.
But I think humour
is the only thing that saves us from...
whatever.
ALS has robbed me of my ability
to move, to speak and even to breathe.
But it will never
take away my will to live,
to love and be loved.
Because with the right support,
you can be happy, even with ALS.
I've been very stressed all my life.
And now I'm at peace.
The disease has also
brought me peace of mind.
Me of course, but not those around me.
It's given me a lot of peace of mind.
And I'm happy, I can't say I'm not happy.
Fight for dignity
and 24-hour care as a right.
ALS exists, and together we will beat ALS.