Juergen Manthey – Locked-In Syndrome

This is Juergen Manthey:

In October 2004 I suffered a brain stem infarct causing locked-in syndrome. We were at a land-rover meet up. I had a bit of a headache in the evening, which got progressively worse. Shortly after that, my body suddenly became paralysed (kind of like suddenly going from 100 to 0). I experienced all the symptoms of locked-in syndrome: complete paralysis of all muscles except my eyes.

After four years, I am able to sit, talk quietly, and move my head, and that’s it.

(Note: the quotes in this article are all Juergen’s own words, translated from the German text on his website by a friend of mine and used with his approval.)

Although he can talk quietly, Juergen still needs assistive communication software to communicate. So without accessible computing devices and software his activities would probably be limited to sitting in his wheelchair and watching TV or listening to the radio. Luckily, assistive technology exists. Juergen uses assistive technology to communicate, to control devices that let him have some physical independence, and to use his computer. He has his own website, he uses chat programs and Twitter and writes email, and he spends time with his family and friends.

Juergen does all his computing on Mac devices – he owns an iMac, a Modbook (a commercially adapted MacBook with the keyboard removed), and an AppleTV! But he wasn’t always an Apple guy:

About two years ago I had my first experiences with a Macintosh computer. I was so thrilled with the easy handling and speed that I switched from using PCs to Apple. So far, I haven’t regretted it – all the problems I had using Windows are gone now.

When you’re using your computer to communicate, having it crash or lock up means losing your voice. Additionally, when you can’t press the power button without help, whenever the computer needs physical rebooting you need to ask for help and wait for somebody to come and help you. For many people with a disability – including myself – the reliability of a Mac computer is a significant part of the appeal.

Juergen using his iMac

My configuration includes:

• Origin Headmouse Extreme.
• Logitech bluetooth mouse for clicking
• KeyStrokes on-screen keyboard from AssistiveWare.
• Proloquo communication software from AssistiveWare.

For those unfamiliar with assistive technology, this means he can move the mouse pointer with small head movements and click the mouse button with a small movement of his hand. KeyStrokes puts a picture of the keyboard on screen so Juergen can type by moving the mouse pointer over the letters and predicted words and clicking the mouse to select them. These two together allow the use of any Mac OS X program and – with the word and phrase prediction of KeyStrokes – to type surprisingly fast. In addition, Proloquo assists by having the computer speak the words Juergen types when he wants to communicate – it has many other features such as pre-programmed words and phrases that can be quickly selected.

And because he has a ModBook mounted on his power wheelchair, Juergen can do all of these things from wherever he happens to be – not only when he’s at his desk. Here’s a photo clearly showing the modbook:

Juergen continues:

In my bedroom I have a TV with AppleTV, which I can synchronise with my iMac. Through that I have access to all my pictures, videos, audio books and music in my bedroom. The simple AppleTV interface is controlled with a Keo remote control.

This means when Juergen is in bed – away from his computer access – he still has plenty to keep himself busy.

I discovered Juergen also has one assistive device I’ve never seen before – a robot arm! The robot arm from Assistive Innovations is attached to his wheelchair and controlled by a joystick Juergen moves with his chin. Here’s the robot arm arranged to hold a drink for him:

The arm can also be delicately controlled to press keys on his computer keyboard, on the rare occasions that something locks up and the on-screen keyboard and head mouse won’t do the trick:

This is truly somebody for whom accessible technology has changed his life. Usually, somebody with locked-in syndrome would be expected to exist in a nursing home and watch daytime television which they couldn’t even turn on or off without somebody’s help. Instead, Juergen is really living. With his robot arm and other technology, he’s pushing the limits of what assistive technology can accomplish – and that’s truly fantastic.

- Ricky Buchanan, with thanks to Juergen Manthey