You are here

Languages

Meet Jørgen

Meet Jørgen, 32 years of age – text version

[sound from respirator]

Oh my God!

Are you stupid or what?!

I was sceptical to starting using the respirator, because I though it would make me more handicapped.

I thought it would look strange with a device on the wheelchair, with a tube to the mouth, or something like that.

There!

The Lord of the Rings, extended edition.

Do you have a blu-ray-player?

Yes.

Don’t you have that one already?

Yes, but...

I don’t have the extended edition, and that’s a little stupid.

Of course, the days were getting harder for me.

When it became more difficult to breathe.

First I was made aware that I breathed very heavily by another wheelchair user. It’s called frog breathing in medical terminology. It means that I pile air into my lungs by doing like this...

So he made me aware that I was doing it. I hadn’t noticed.

I sit in a way that is affected by my handicap. And I must only realise that--what difference will a respirator at the back of the wheelchair make? And also a mouthpiece on one arm.

Nothing.

Before I had the respirator, I needed even more time to say something.

Then I had to stack air for a while to have the force to say something.

And sometimes it was exhausting to talk.

Now it takes a little time before I manage to say something, F***!

But right before I had the respirator I needed even more time.

You couldn’t find a smaller pan?

No, there was only one pan, so...

Hey... Can you look at me when I’m talking to you?

Maybe I should think a little more before I say things, but... isn’t it typical for men?

I noticed that life became easier.

I had more energy to do the things I wanted every day.

In the beginning it was an adjustment, and there is some maintenance.

But in the end I forgot that I had the respirator.

I could never go back to not having a respirator.

My name is Jørgen. I was born with Duchenne muscular dystrophy. Since I cannot move my arms and legs, I need help with practically everything in my daily life, i.e. going to the toilet, personal grooming, eating, dressing/undressing, and basically everything that a physically fit person does from getting up in the morning until going to bed at night.

The only thing that I don’t need help with is planning and controlling my daily life. I currently live in my privately owned 60-m² apartment. Through the BPA scheme (user-controlled personal assistance), I can find, employ and manage my assistants myself. During the night, I use the borough’s night alarm service, which is installed in my apartment and only connected to me.

You will be able to read more about Jørgen and his opinions, as the Pust course progresses. The following links are about Jørgen: