Juan Carlos Unzué: “Fa anys hauria dit que era impossible que fos feliç en una cadira de rodes, però m’equivocava”

Des de Ràdio Ciutat de Tarragona tenim l'oportunitat de parlar

From Ràdio Ciutat de Tarragona, we have the opportunity to speak.

amb un exemple de vida, amb un referent, amb Juan Carlos Unzué,

with an example of life, with a reference, with Juan Carlos Unzué,

malalt d'Ela, diagnosticat des de fa gairebé 5 anys

sick with ALS, diagnosed almost 5 years ago

i una de les cares visibles des de llavors de la lluita

and one of the visible faces since then of the struggle

per millorar les condicions de vida de les persones que pateixen

to improve the living conditions of people who are suffering

aquesta malaltia, aconseguint moltíssimes progressions.

this disease, achieving many advancements.

A més, va ser exfutbolista professional i exentrenador,

In addition, he was a former professional footballer and former coach,

també professional de futbol.

also professional footballer.

Juan Carlos Unzué, molt bon dia.

Juan Carlos Unzué, very good morning.

Bon dia.

Good morning.

Volia evitar començar amb aquesta pregunta a l'entrevista

I wanted to avoid starting with this question in the interview.

perquè imagino que portes ja molts anys que comences amb aquesta pregunta,

because I imagine you have been asking this question for many years now,

però també entenc que quan et van diagnosticar la malaltia

but I also understand that when you were diagnosed with the disease

i vas començar tot aquest camí, la teva idea era precisament

And you started this whole journey, your idea was precisely

que es fos més coneguda el que era l'Ela.

that it was better known what Ela was.

Per tant, crec que és bona idea, que encara que ja has fet una tasca

Therefore, I think it’s a good idea that even though you have already done a task.

molt important i molta gent segurament ja sap què és l'Ela,

very important and many people probably already know what ALS is,

gràcies a tu encara hi ha molt camí a recórrer.

thanks to you there is still a long way to go.

Per tant, t'ho pregunto per a tota aquella gent que escolta l'entrevista,

Therefore, I ask you for all those people who listen to the interview,

què és l'Ela?

What is the Ela?

Bé, doncs l'Ela és una malaltia neurodegenerativa

Well, then ALS is a neurodegenerative disease.

que produeix una atrofia muscular progressiva

that produces progressive muscle atrophy

que ens deixa en un moment d'aquest moment

that leaves us in a moment like this

immòbils en una cama.

immobile on a bed.

També ens afecta en un moment donat

It also affects us at a given moment.

als nostres músculs que ens donen la possibilitat de comunicar-nos,

to our muscles that give us the ability to communicate,

de parlar, també als músculs que ens donen la possibilitat de glutir

to speak, also to the muscles that give us the ability to swallow

i en una fase ja que sol ser complicada i greu,

and in a phase that is usually complicated and serious,

també als músculs que ens donen la possibilitat de respirar.

also to the muscles that allow us to breathe.

És el moment crític en la malaltia

It is the critical moment in the disease.

perquè necessitem fer-nos una traqueostomia

because we need to perform a tracheostomy

per poder seguir en vida

to be able to stay alive

i sobretot a partir d'aquest moment

And especially from this moment on.

ja no podem estar en un moment

we can no longer be in a moment

sols.

alone.

A Espanya som uns 4.000 afectats,

In Spain, we are about 4,000 affected.

però cada dia perdem 3 companys,

but every day we lose 3 companions,

més o menys,

more or less,

i cada dia s'uneix a l'equip

and every day joins the team

altres 3.

others 3.

Curiosament, és una malaltia

Interestingly, it is a disease.

que no es veuen afectades

that are not affected

les nostres capacitats cognitives,

our cognitive abilities,

per tant, nosaltres som conscients

therefore, we are aware

d'aquest deteriorament físic

of this physical deterioration

fins a l'últim dia.

until the last day.

Llavors, a vegades em solen preguntar

So, sometimes they usually ask me

que això és molt cruel

that this is very cruel

i que no es pot fer.

and that cannot be done.

I jo dic, sí, home, no és fàcil,

And I say, yes, man, it’s not easy,

però a mi és el que li dona sentit.

but for me, it is what gives it meaning.

O sigui, si jo, a més de tenir

So, if I, besides having

aquesta limitació física,

this physical limitation,

no sabés amb qui estic parlant

You didn't know who I am talking to.

ni on estic,

nor where I am,

evidentment, això no tindria cap sentit.

obviously, this would make no sense.

Llavors, bé, nosaltres

Then, well, we

el que podem valorar

what we can assess

quan tenim aquesta malaltia

when we have this illness

és que les coses

it's just that things

imprescindibles,

essential

essencials,

essentials,

les podem tenir.

we can have them.

I és,

And it is,

perquè jo sé que me'n podré pensar,

because I know that I will be able to think about it,

me'n podré comunicar en un moment

I will be able to communicate in a moment.

a través de la tecnologia,

through technology,

me'n podré emocionar.

I will be able to get excited.

Llavors, tot això,

Then, all of this,

jo crec que és el que una persona

I think it is what a person

necessita tenir.

needs to have.

I això, per sort, ho tindrem

And this, fortunately, we will have.

fins a l'últim dia.

until the last day.

Si no m'equivoco, d'aquí poc farà cinc anys

If I'm not mistaken, it will soon be five years.

que pateixes la diagnòstica d'aquesta malaltia.

that you suffer from the diagnosis of this disease.

Una mica en aquest sentit,

A little in this sense,

com està a dia d'avui Juan Carlos Unzué?

How is Juan Carlos Unzué doing today?

Es pot dir que tot i que és una malaltia

It can be said that although it is an illness

molt dura, molt crua, és feliç?

very hard, very raw, is she happy?

Sí, sí.

Yes, yes.

Tengo muchos momentos de felicidad,

I have many moments of happiness,

pues como nunca hubiese pensado.

Well, I would have never thought.

Es más,

Moreover,

yo suelo decir en las charlas,

I usually say in the talks,

si a mí hace cinco o diez años

if to me five or ten years ago

una persona tan activa

such an active person

que ha necesitado tanto de su físico

that has needed so much of his physique

para su vida,

for his life,

me preguntan

they ask me

¿tú crees que podría ser

Do you think it could be?

feliz en una silla de ruedas?

Happy in a wheelchair?

Y hubiese dicho, con toda

And I would have said, with all

rotundidad, imposible.

rotundity, impossible.

Y me habría equivocado.

And I would have been wrong.

Me habría equivocado porque,

I must have been mistaken because,

vuelvo a repetir,

I repeat,

tengo muchos momentos

I have many moments.

de felicidad, y además

of happiness, and also

esa felicidad me la dan

that happiness is given to me

no cosas materiales,

no material things,

me la dan emociones,

they give me emotions,

me lo da el cariño y el respeto

it gives me love and respect

que me transmite mucha gente,

that many people convey to me,

y la verdad que eso os puedo decir

And the truth is that I can tell you that.

que es impagable.

that is priceless.

¿Va vinculat una mica el fet de ser feliç

Is the fact of being happy somewhat linked?

a sentir-te tan útil, sobretot des que et van

to feel so useful, especially since they have

diagnosticar aquesta malaltia?

diagnose this disease?

Yo creo que todas las personas.

I believe that all people.

Necesitamos sentirnos útiles

We need to feel useful.

para poder disfrutar

to be able to enjoy

un poco de la vida, ¿no?

a little bit of life, isn't it?

Entonces, yo de una manera muy

So, in a very way I

diferente al resto de mi vida,

different from the rest of my life,

pero me sigo sintiendo útil, ¿no?

but I still feel useful, right?

Trato de hacer dentro de mis posibilidades

I try to do within my capabilities.

todo lo posible para visibilizar

everything possible to make visible

la enfermedad, para

the illness, for

contar a la gente cuál es la cruda

telling people what the harsh reality is

realidad de la mayoría de mis compañeros,

reality of most of my colleagues,

y bueno, yo espero,

and well, I hope,

ahora estamos en un momento donde

now we are in a moment where

hay tres proporciones de ley,

there are three proportions of law,

presentadas y aceptadas.

submitted and accepted.

Necesitamos esa ley yela

We need that law.

ya, y

yes, and

creo que lo vamos a conseguir entre todos.

I think we are going to achieve it together.

Una pregunta precisament per això. Portes

A question precisely for that. You bring.

ja molt temps intentant visibilitzar

for a long time trying to make visible

l'enfermetat lluitant per aquesta

the illness fighting for this

llei iela. Has aconseguit moltes coses,

Law street. You have achieved many things,

entenc que també n'hi ha moltes que no

I understand that there are also many that don't.

les has acabat d'aconseguir.

you have just managed to achieve them.

Creus que, i és una pregunta cruda,

Do you believe that, and it's a tough question,

però creus que veuràs aprovada la llei iela?

But do you think you will see the law approved?

Yo creo que sí, yo creo que sí. No he sido una persona

I think so, I think so. I have not been a person

ni lo soy

neither am I

de generarme muchas

to generate many for me

expectativas.

expectations.

Yo he sido más de, si lo veo, lo creo.

I've been more of a, if I see it, I believe it.

Pero en estos momentos

But at this moment

creo,

I believe,

o estoy, esperanzado

I am hopeful.

en que esa nueva ley

in which that new law

va a aparecer. Para eso necesitamos

It will appear. For that, we need...

que se convoque ya una comisión

that a commission is convened already

para poder organización,

to be able to organize,

para poder, perdón, organizar

to be able, sorry, to organize

la tramitación

the processing

de esas proporciones

of those proportions

de ley y que empiecen

by law and let them begin

las enmiendas. El objetivo al final

the amendments. The goal in the end

es buscar el consenso

it is to seek consensus

que todos sientan

let everyone feel

que es parte suya,

that is part of you,

coger lo mejor

take the best

de cada una de esas proporciones de ley

of each of those legal proportions

y hacer la mejor ley yela

and make the best law humanely

posible. Entenc que

possible. I understand that

deus estar molt satisfet de la feina que heu fet

You must be very satisfied with the work you've done.

a nivell de consciència de la ciutadania, del carinyo

in terms of citizen awareness, of affection

que esteu rebent, del suport que esteu rebent

that you are receiving, from the support that you are receiving

de la ciutadania. Creus que us està

of the citizenship. Do you think it is affecting you?

costant o us ha costat massa?

is it costing you too much?

Perquè l'heu aconseguit posar a l'agenda mediàtica,

Because you have managed to put it on the media agenda,

segurament l'Ela quan no hi era.

surely Ela when she wasn't there.

Creus que us ha costat massa posar-la i fer-la

Do you think it has been too difficult for you to put it in and do it?

entre l'agenda política?

between the political agenda?

Jo he sentit des del primer dia

I have felt since the first day

que la gent de a peu,

that the ordinary people,

en quant no s'ha escoltat,

as far as it has not been heard,

en quant ha estat informada

how long has she been informed

del que és l'Ela, de quina és

of what is the Ela, of which is it

la cruda realitat de la majoria

the harsh reality of the majority

de els meus companys,

of my colleagues,

es queden impactats i pensant

they are left shocked and thinking

que això està passant

that this is happening

al meu costat i jo no era conegut

beside me and I was not known

d'això. És veritat

of this. It is true

que de la mateixa manera que hem conscienciat

that just as we have raised awareness

jo crec a molta gent

I believe in a lot of people.

molt ràpidament,

very quickly,

que a los políticos nos ha costado más.

that has cost us politicians the most.

Evidentemente ya llevamos

Evidently we have already been

pues eso prácticamente 4 o 5 años

well that's practically 4 or 5 years

y sobre todo ya no son estos 4 o 5 años.

and above all, it's no longer these 4 or 5 years.

Hay mucho trabajo detrás

There is a lot of work behind it.

desde hace muchos años

for many years

de otros muchos

of many others

afectados que ya no están con nosotros.

affected individuals who are no longer with us.

De asociaciones, de fundaciones

Of associations, of foundations

que hacen un trabajo imprescindible

that do an essential job

para que los afectados

for those affected

de ELA pues puedan seguir

of ELA so they can continue

un poquito de...

a little bit of...

puedan tener un poquito

they can have a little bit

de vida digna. Entonces hay un trabajo

of dignified living. Then there is a job

desde hace muchos años

for many years

que esperemos que ahora

that we hope that now

pues vea la luz porque

well, see the light because

yo creo que cuando la gente

I believe that when people

en general ha sido conocedora

in general has been knowledgeable

de esto

of this

claro, lo que sienten

Of course, what they feel.

todo el mundo lo que sentimos es que

everyone what we feel is that

demasiado tiempo

too much time

ya estamos esperando

We are already waiting.

a que lleguen esas ayudas

until those aids arrive

que tanto necesitamos y estamos

that we need so much and we are

reivindicando. Preguntar-te per això

claiming. Asking you about that

què és a dia d'avui el més difícil

What is the most difficult thing today?

el dia a dia per un malalt d'ELA

the day-to-day life of a person with ALS

i què canviaria l'aprovació d'aquesta llei ELA?

And what would the approval of this ELA law change?

Sobretot el més important, el canvi més significatiu.

Above all, the most important thing, the most significant change.

A ver, por desgracia

Let's see, unfortunately

tiene muchas necesidades

has many needs

requiere de muchas

requires many

de muchos cambios

of many changes

que conllevan

that entail

un gasto muy grande

a very large expense

pero es cierto que quizá

but it is true that perhaps

el gasto más importante

the most important expense

en el que estamos haciendo hincapié

in which we are emphasizing

es el tema de los cuidadores.

It is the issue of caregivers.

En nosotros hay un momento sobre todo

In us, there is a moment above all.

cuando

when

tenemos la necesidad de hacernos

we have the need to become

la traqueostomía que ya

the tracheostomy that already

no podemos estar, como te he dicho antes,

we cannot be, as I mentioned to you before,

un minuto solos. Pero es que además

one minute alone. But also

no nos vale con que nos acompañen.

It's not enough for them to accompany us.

Esa persona debería ser un profesional

That person should be a professional.

que sepa qué hacer con ese

that knows what to do with that

respirador o con esa sonda

respirator or with that probe

a través de la que

through which

nos alimentamos si hay cualquier

We feed ourselves if there is anything.

problema. Entonces claro, eso

problem. So of course, that

conlleva tres

involves three

o cuatro personas

or four people

que necesitamos a nuestro alrededor

what we need around us

y eso mínimo

and that's the minimum

tiene un coste de 60.000 euros.

It has a cost of 60,000 euros.

Claro, ¿qué persona, qué familia

Of course, what person, what family?

tiene esos ahorros?

Do you have those savings?

Entonces yo creo que

So I think that

este es el punto

this is the point

indispensable

indispensable

para que lleve esa ley ELA.

so that that ELA law can be enacted.

A partir de ahí, pues evidentemente

From there, well obviously

estaría bien encontrar residencias

It would be good to find residences.

espacios donde

spaces where

podamos estar los enfermos

we may be the sick ones

de ELA sobre todo que no tienen ese

of ELA above all that they do not have that

entorno familiar

family environment

bien cuidados

well cared for

que a día de hoy desgraciadamente no

that unfortunately as of today no

existen. Ha habido algún caso

they exist. There has been some case

de algún compañero que por esa falta

of some colleague who due to that lack

de entorno familiar

family environment

ha ido a una residencia normal

he has gone to a normal residence

de mayores y

of adults and

en un descuido, claro, nosotros

In a lapse, of course, us.

no podemos estar

we cannot be

un minuto solos como hemos hablado.

One minute alone as we discussed.

Nosotros si hay un problema como una flema

We do have a problem like a phlegm.

con ese respirador

with that respirator

en tres minutos estamos

We'll be there in three minutes.

muertos. Entonces claro, en las residencias

dead. So of course, in the residences

no hay gente preparada

there are no prepared people

para cuidarnos específicamente

to take care of us specifically

a los enfermos de ELA. Entonces

to the patients with ALS. Then

pedimos eso. O esas residencias

we ask for that. Or those residences

específicas o espacios

specific or spaces

en esa residencia

in that residence

con el personal

with the staff

adecuado para cuidarnos.

suitable for taking care of us.

Parlaves tu ara d'això. Més enllà del context

You were talking about this now. Beyond the context.

econòmic i social, fins a quin punt és

economic and social, to what extent is it

important el suport i

important the support and

l'escala familiar per un malalt d'ELA

the family scale for a patient with ALS

a dia de avui?

to this day?

Yo creo que es vital para poder tener

I believe it is vital to be able to have.

el primer derecho que tienen las

the first right that they have the

personas, que es el derecho a la vida,

people, what is the right to life,

a una vida digna.

to a dignified life.

O sea, lo que yo creo que no podemos permitir

In other words, what I believe we cannot allow.

es que ni una sola persona más

it's that not a single person more

queriendo vivir

wanting to live

a pesar de todas las limitaciones físicas

despite all the physical limitations

que le genera la ELA

what ALS generates for him

se siente obligado a morir

he feels compelled to die

por un problema económico, porque no hay

due to an economic problem, because there isn't any

ayudas de la administración.

administration aids.

Esto es que en una sociedad

This is that in a society

en el 2024 que estamos

in the 2024 that we are in

creo que no deberíamos

I don't think we should.

permitirlo, porque como digo

allow it, because as I say

estamos poniendo en duda el

we are questioning the

derecho más importante de las personas.

the most important right of people.

El derecho a la vida,

The right to life,

a una vida digna.

to a dignified life.

Una enfermedad del que vosotros soliciteu

An illness that you are requesting.

es el derecho a la vida digna.

It is the right to a dignified life.

També té la vessant d'una mort digna.

It also has the aspect of a dignified death.

T'has plantejat ja

Have you thought about it yet?

com afrontaràs aquell moment

how will you face that moment

en el que hagis de dir fins aquí?

in which you have to say until here?

Pues mira, yo hace un año, dos años

Well, you see, a year ago, two years ago

tenía claro que si llegase el momento

I was clear that if the moment came

en que necesito hacerme la tráqueo

in which I need to have a tracheotomy.

la iba a hacer.

I was going to do it.

Yo ya tengo hecho todos los papeles.

I already have all the paperwork done.

Quiero que mi cuerpo se aproveche

I want my body to take advantage.

mis órganos para todo.

my organs for everything.

No tengo ningún problema.

I have no problem.

Pero en estos momentos

But at this moment

tengo mis dudas.

I have my doubts.

Que si realmente llega ese momento

That if that moment really comes

de la tráqueo

of the trachea

me la quiera hacer.

she wants to do it to me.

Yo creo que dependerá sobre todo

I believe it will depend primarily.

del momento cuando llegue.

from the moment I arrive.

Entonces yo ya

Then I already

vamos a decir como te he dicho, ya he disfrutado

Let's say, as I told you, I have already enjoyed.

sufriendo también con esta enfermedad

suffering also with this illness

durante un tiempo.

for a while.

Entonces yo a día de hoy me encuentro tranquilo.

So today I feel calm.

He tenido una vida

I have had a life.

yo creo que

I believe that

plena.

full.

Eso me da mucha tranquilidad

That gives me a lot of peace.

el mirar atrás y ver que

looking back and seeing that

cuando he querido hacer algo

when I have wanted to do something

cuando me ha apetecido hacer algo

when I have wanted to do something

me tiro a la piscina, como solemos decir.

I dive into the pool, as we usually say.

Y eso me genera mucha tranquilidad.

And that gives me a lot of peace of mind.

Entonces estoy preparado

So I am ready.

para todo, sinceramente.

For everything, sincerely.

Evidentemente me gustaría

Obviously, I would like to.

disfrutar aún de momentos

still enjoy moments

interesantes, pero

interesting, but

cuando llegue el momento lo decidiré.

When the time comes, I will decide.

Has parlat de la importància

You have spoken about the importance.

dels professionals i que hi hagi professionals en això.

of the professionals and that there are professionals in this.

Avui vens aquí a Tarragona a fer una xerrada

Today you are coming here to Tarragona to give a talk.

pel sector sanitari, per estudiants

for the healthcare sector, for students

que volen entrar en aquest sector.

that want to enter this sector.

Imagino que reclamant

I imagine that claiming.

que tinguin un reconeixement molt major.

that they have a much greater recognition.

Sin duda. Yo creo que más que reconocimiento

Certainly. I believe it is more about recognition.

lo que necesitan es que sus condiciones

what they need is for their conditions

laborales mejoren.

Work conditions improve.

Y sobre todo que se

And above all, that it is.

valore económicamente

value economically

la importància de su trabajo.

the importance of his work.

O sea, es que al final están cuidando

I mean, in the end they are taking care.

a personas en dificultades,

to people in difficult situations,

a personas enfermas.

to sick people.

Entonces es lamentable

Then it is regrettable.

que tengan que marchar a otros países

that they have to go to other countries

porque se sienten

because they feel

mejor pagados

better paid

y mejor valorados.

and better rated.

Entonces deberían

Then they should

de todas esas personas que estudian

of all those people who study

enfermería, médicos,

nursing, doctors,

etcétera, etcétera,

etcetera, etcetera,

quedarse aquí y que obviamente

stay here and obviously

entre todos valorásemos

we all valued

la importància de su trabajo.

the importance of his work.

Deixa'm preguntar-te per què des de fa cinc anys

Let me ask you why for the last five years.

que et van dir que no estic a la malaltia

They told you that I am not sick.

has convertit segurament en la cara visible.

you have probably become the visible face.

Em deies ara que hi ha molta gent treballant a la ciutat

You were just telling me that there are many people working in the city.

i que estàs convertit en una cara visible

and that you have become a visible face

pel reconeixement d'aquesta malaltia.

for the recognition of this disease.

Segurament si Juan Carlos Unzué

Probably if Juan Carlos Unzué

no hagués patit ELA hi hauria molta gent

If ELA hadn't caused suffering, there would be many people.

d'aquests malalts que estarien en les condicions pitjors

of these patients who would be in the worst conditions

o no hauria avançat tant en aquest

or it wouldn't have progressed so much in this

cas en el tema de la llei ELA. Com et fa sentir això?

case in the matter of the ELA law. How does that make you feel?

Bueno, yo

Well, I

sobre todo lo que trato es de

above all, what I try to do is to

de estar bien conmigo mismo.

of being fine with myself.

O sea, de tener la conciencia tranquila.

I mean, to have a clear conscience.

Yo creo que en cierta manera

I think that in a certain way

toda mi vida ha sido

all my life has been

un poco así, pero en estos momentos

a little like this, but at the moment

también. Yo sigo siendo

also. I continue being

el mismo Juan Carlos Unzué que antes

the same Juan Carlos Unzué as before

del diagnóstico. Entonces estoy

of the diagnosis. So I am

involucrado con este

involved with this

objetivo y evidentemente

objective and evidently

yo voy a hacer todo lo posible

I am going to do everything possible.

para que, primero ojalá

so that, first hopefully

los que estamos actualmente

those of us who are currently

podamos tener

let us have

esas ayudas de la administración

those aids from the administration

pero sobre todo que

but above all that

quede algo positivo

I remain with something positive.

y que se puedan beneficiar

and that they can benefit

los que vienen posteriormente.

those who come afterwards.

Porque, como hemos dicho,

Because, as we have said,

cualquier persona a día de hoy, no se saben

anyone nowadays, it is not known

las causas de esta enfermedad,

the causes of this disease,

puede ser diagnosticada con ELA.

can be diagnosed with ALS.

Entonces

So then

no hemos hablado del tema de la investigación

we haven't talked about the topic of the research

que también es, ya no digo

that it also is, I'm not saying anymore

importante, es esencial.

important, it is essential.

Al final la investigación de estas enfermedades

In the end, the research on these diseases

es la solución.

It is the solution.

Entonces, claro, el último

So, of course, the last one.

estudio que hay

study that there is

creo que el 80% del dinero

I believe that 80% of the money

que se investiga en ELA en España

that is being researched in ALS in Spain

es dinero privado y solamente

it's private money and only that

el 20% es dinero público.

20% is public money.

Entonces, bueno, está muy bien

So, well, it's very good.

que paguemos los impuestos

that we pay the taxes

que pagamos, que realmente

that we pay, that really

los que hemos tenido una

those of us who have had one

situación mejor

better situation

paguemos más, pero

let's pay more, but

yo creo que lo que todos

I believe that what everyone

queremos es que después esos impuestos

What we want is that after those taxes.

vamos a decir, se utilicen

let's say, they are used

para cosas imprescindibles

for essential things

como esta,

how are you,

que es la mejora de la calidad de vida

what is the improvement of quality of life

de cualquier persona.

of anyone.

Las enfermedades no saben de ideologías,

Diseases do not know of ideologies,

no saben de procedencia.

they do not know the origin.

Entonces yo creo que es el momento de olvidarse

Then I think it is time to forget.

de esos intereses políticos

of those political interests

y obviamente priorizar

and obviously prioritize

en este caso la investigación

in this case the investigation

y la llegada de esa ley.

and the arrival of that law.

Tornem al tema de voluntat política.

Let's return to the topic of political will.

Deixa'm lligar-ho tot això

Let me tie all this together.

ja en el món de l'esport, que entenc que

already in the world of sports, which I understand that

fins i tot a dia d'avui continua

even today it continues

sent una motivació per tu.

being a motivation for you.

Fins a quin punt t'ha ajudat, sobretot en el moment

To what extent has it helped you, especially at the moment?

en el que vas conèixer que tenies aquesta malaltia,

when you learned that you had this illness,

l'acceptació, que entenc que és un tema molt important

the acceptance, which I understand is a very important topic

als valors de l'esport i haver estat lligat

to the values of sports and having been tied

en aquest munt de temps?

in this pile of time?

Jo he sentit que a mi m'ha ajudat molt.

I have felt that it has helped me a lot.

Perquè al final

Because in the end

la meva forma de ser ve com a conseqüència

my way of being comes as a consequence

del tipus de vida que he tingut

of the type of life I have had

i he estat relacionat amb l'esport pràcticament

I have been involved in sports almost my whole life.

tota la meva vida.

all my life.

Aleshores jo sento

Then I feel

que a mi m'ha ajudat, però

that has helped me, but

també et puc dir

I can also tell you.

amb tota certesa, amb tota seguretat

with all certainty, with all security

que no cal ser ni futbolista professional

that you don't need to be a professional footballer

ni esportista professional

neither professional athlete

per tenir una gran actitud

to have a great attitude

davant d'una situació com aquesta.

in front of a situation like this.

Davant de ser diagnosticat,

Before being diagnosed,

d'ELA

of ELA

i tenir aquesta limitació física.

and have this physical limitation.

Per què dic això? Perquè m'ho han demostrat

Why do I say this? Because they have shown me.

companys i companys de malaltia

companions and comrades of illness

que sense ser esportistes

that without being athletes

la seva actitud en una fase

his/her attitude in a phase

molt més avançada de la meva

much more advanced than mine

amb l'ELA

with ALS

el que m'han transmetut

what they have transmitted to me

és que volen viure,

it’s that they want to live,

que volen seguir gaudint de la vida.

that they want to continue enjoying life.

Aleshores jo

Then I

la reflexió que faig és que

the reflection I make is that

qualsevol persona estem preparats

anyone we are ready

per tenir

to have

una situació complicada

a complicated situation

i tenir la capacitat

and have the ability

d'adaptació i de superació.

of adaptation and overcoming.

En la majoria de les coses

In most things

per sobre del que mai haguéssim

beyond what we ever would have

imaginat. Aleshores animo

imagine. Then I encourage

la gent a pensar d'aquesta manera

people thinking this way

i que si arriba un moment

and if a moment arrives

d'alguna complicació, que creguin

of some complication, that they believe

en ells mateixos, que tinguin

in themselves, may they have

autoestima, que som

self-esteem, that we are

molt més forts del que creiem.

much stronger than we think.

Deixa'm acabar l'entrevista amb preguntes

Let me finish the interview with questions.

una mica diferents perquè tenim l'oportunitat d'estar amb tu

a little different because we have the opportunity to be with you

que ets un home de futbol, has estat futbolista professional

that you are a football man, you have been a professional footballer

també entrenador, ho has tocat tot una mica

also a coach, you've touched everything a bit

a més ara aquesta experiència tan difícil

besides, now this very difficult experience

i molt diferent a nivell personal.

and very different on a personal level.

Preguntar-te perquè estem en un moment en el que

Asking you why we are in a moment where

el futbol, especialment els dirigents

football, especially the leaders

segurament estem en un

surely we are in a

punt on s'aposta pels projectes

point where bets are placed on projects

corporacistes, objectius, immediats,

corporatists, objectives, immediate

sense processos.

without processes.

Creus que això és una evolució

Do you think this is an evolution?

normal, tenint en compte l'evolució que

normal, considering the evolution that

ha fet el món en general i que és

has made the world in general and what it is

quasi impossible posar-hi fred, a dia d'avui?

Almost impossible to keep it cool, nowadays?

El futbol és part d'aquesta societat

Football is part of this society.

i jo crec que entre tots

And I believe that among all of us

hem generat una societat

we have generated a society

diria jo la societat

I would say the society.

de la impaciència.

of impatience.

Moltes coses les volem

We want many things.

i les tenim ja, però

and we have them now, but

altres són impossibles.

others are impossible.

Com dius, quan tu arribes com a entrenador

How do you say, when you arrive as a coach?

a un equip

to a team

això no és tan fàcil com donar-li

this is not as easy as giving it to him/her

un interruptor i donar-li

a switch and give it

a l'off i treure

turn off and take out

de la ment dels jugadors

from the minds of the players

tot el que han

everything they have

aprenut d'un altre entrenador

learned from another coach

i donar-li a l'ON

and give it to the UN

i que adquiren tot el que tu creus.

and that acquire everything you believe.

Això al final requereix temps

This ultimately takes time.

i és el que

and it is what

menys hi ha en el futbol.

less there is in football.

En general en la societat, però en el futbol

In general in society, but in football.

és molt evident.

It is very obvious.

I a l'última, també en aquest

And lastly, also in this one.

sentit, perquè aquí a Tarragona

sense, because here in Tarragona

portem uns últims anys

we have had a few last years

on han passat moltíssims

they have passed many

entrenadors, canvis constants, certa

coaches, constant changes, certain

inestabilitat, malgrat que l'equip es manté

instability, despite the team holding on

en una situació bastant tranquil

in a quite calm situation

entre de tot, però

among everything, but

jo vaig més enllà dels mandataris, que sí que

I go beyond the mandates, yes.

tenen aquest tipus de sensacions

they have this type of feelings

a tot arreu, sinó que tinc la sensació que l'afició

everywhere, but I have the feeling that the fans

i no només les dels equips d'elit

and not only those of elite teams

de màxima exigència, sinó també les d'equips

of maximum demand, but also those of teams

de més territori, com pot ser la de Tarragona,

of more territory, such as that of Tarragona,

han entrat també en aquest cercle

they have also entered this circle

de pressa, de necessitat constant,

in a hurry, in constant need,

d'inconformisme absolut davant de qualsevol

of absolute discontent in the face of anyone

situació. Quin missatge li donaries a

situation. What message would you give to

aficions, com pot ser del Nàstic, però també la de molts

hobbies, like that of Nàstic, but also that of many

altres equips perquè, ja no que

other teams because, no longer that

tinguin més paciència, però que gaudeixin un punt més

have more patience, but enjoy it a little more

en els moments que dona ser d'un equip així?

In the moments that it feels like being part of such a team?

Doncs a veure, jo per una part ho puc entendre.

Well, let's see, I can understand it on one hand.

Al final el futbol jo crec que

In the end, I believe that football...

serveix també a molta gent

it also helps many people

per anar a l'estadi

to go to the stadium

i treure una mica aquesta

and take this out a bit

mala llet que ve

bad vibes that come

generant-se durant tota la setmana.

generated throughout the week.

Ho puc entendre.

I can understand it.

Però també els puc dir,

But I can also tell you,

havent estat dins, que si

you haven't been inside, have you?

realment volen ajudar que el seu equip

they really want to help their team

vagi

go ahead

millorant, el que

improving, what

necessiten és que estiguin amb ells, sobretot

what they need is to be with them, above all

en els moments difícils. Si al final

in difficult times. If in the end

els futbolistes, com qualsevol

the football players, like anyone

esportista, som persones

athlete, we are people

i quan estàs en situacions complicades

and when you are in complicated situations

el primer que pateix és qui està

the first to suffer is the one who is

al camp. Llavors, si sent

in the field. Then, if you hear

aquest suport de l'afició,

this support from the fans,

això ajuda moltíssim.

this helps a lot.

Llavors els animaria

Then I would encourage them.

a tots els aficionats del Nàstic

to all the fans of Nàstic

que confiïn en l'equip, que confiïn

they should trust the team, they should trust

en les persones que estan

in the people who are

en aquest cas jugant

in this case playing

o dirigint i que

or directing and that

realment s'animin

they really get encouraged

per poder

in order to be able

gaudir tots junts.

enjoying together.

Ojalá que veamos al Nástic pronto

I hope we see Nàstic soon.

más arriba.

higher up.

Pues Juan Carlos, ha estat un autèntic plaer

Well Juan Carlos, it has been a real pleasure.

poder parlar amb tu des de Radio Ciutat de Tarragona,

to be able to speak with you from Radio Ciutat de Tarragona,

un exemple de vida. Moltíssimes gràcies per atendre'ns.

an example of life. Thank you very much for attending to us.

Un placer, muchas gracias a vosotros.

A pleasure, thank you very much.