Making communication possible for people with MND

As part of our Look No Hands! Campaign this blog looks at Motor Neurone Disease and what assistive technology can be life changing for people with MND.


What is Motor Neurone Disease?

Motor Neurone Disease is also known as ALS or Lou Gehrig’s disease (after an American baseball player). It affects the muscles in your body causing them to be weak.  There is no known cure for this condition, but symptoms can be managed to help people to achieve the best possible quality of life. The causes of the condition aren’t really known but it may be something to do with chemicals and structures in the motor nerves.  The effects include difficulty speaking and movement.   Eating and swallowing are also affected and eventually the muscles that assist breathing fail. There are different types of the condition.

How many people are affected?

According to the Motor Neurone Disease Association (www.mndassociation.org.uk) the condition affects over 5,000 people in the UK and worldwide it has an incidence of 1 – 2 per 100,000 of the population.

STepehen Hawking on the edge of a volcano One of the most famous people ever to have lived with MND is Professor Stephen Hawking, who was diagnosed with motor neurone disease when he was only 21. He is one of the most internationally recognisable people who use assistive technology, whether he is delivering a speech to 11 million people at the Paralympics opening, writing a new book or working in his office at Cambridge University. As of 2012, Stephen Hawking is almost completely paralysed. He lost the ability to speak after he had a tracheotomy operation following pneumonia back in 1985.  

“For a time, the only way I could communicate was to spell out words letter by letter, by raising my eyebrows when someone pointed to the right letter on a spelling card." says Hawking, “ It is pretty difficult to carry on a conversation like that, let alone write a  scientific paper.”

Technological advancements have allowed Hawking to communicate through a text to speech device.  Before Prof. Hawking lost the mobility in his hands, he had used a thumb switch and a blink-switch attached to his glasses to control his computer and select the correct letters. He now uses muscle movement in his face, combining squeezing his cheeks and "blinking” which activates an infra-red switch which can scan and select characters (letter by letter) on the screen in order to compose speeches, surf the Internet and send e-mails.

Last Year at the 2012 Technology4Good Awards, Prof. Hawking received a Special Award for Excellence in Accessibility. Listen to Prof. Hawking's Acceptance speech in the video below:

 

Top Tips for computing with MND

People who have computers and who have the condition can use the computers in lots of different ways:

  • If their voice is still strong they can use voice recognition to control their computer.
  • If their voice isn’t that strong but they still have some useful hand use they may be able to use a compact keyboard (a keyboard without the number pad on the right hand side.) They may also feel the need to use a keyguard to help.
  • As the condition progresses people might want to use head movement, via a head mouse to control the computer or even switches to use an on screen keyboard and or communication software.
  • Eye tracking or Eye Gaze software allow people with severe physical disabilities to access a computer. These high-tech systems have an inbuilt camera which tracks where your eyes are looking, enabling you to move the mouse pointer around. You can 'click' by blinking, dwelling (staring at the screen for a certain length of time) or using a switch.

Future Technology in the making

In July 2012 it was announced that several American companies are researching new ways that Assistive Technology can help Prof. Hawking. Due to Hawking’s condition, his cheek muscles will eventually deteriorate, which could eliminate his ability to communicate, leaving him with “Locked-in Syndrome”.

One American scientist, Professor Philip Low, is working on something called ‘iBrain’. The iBrain is a headset that records brain waves through EEG (electroencephalograph) readings - electrical activity recorded from the user's scalp. This may allow Prof. Hawking to "write" words with his brain as an alternative to his current speech system which interprets cheek muscle movements.

Alternatively , US chipmaker, Intel, announced that it had also started work to create a new communication system for Prof. Hawking. It is attempting to develop new 3D facial gesture recognition software to speed up the rate at which Prof. Hawking can write. Hopefully the research and discoveries from these scientists will benefit many others who face similar communication restrictions due to their disability.

How can AbilityNet help?

There are a few ways that we can help:

  • My Computer My Way. A list of free hints and tips that you can use to make your time on the computer that bit easier.
  • Call our free Helpline. We’re open Monday to Friday from 9am to 5pm on 0800 269 545. Our friendly, knowledgeable staff will discuss any kind of computer problem and do their best to come up with a solution. .
  • We have a range of factsheets which talk in detail about technology that might help you, which can be downloaded for free.
  • Arrange a home visit. We have a network of AbilityNet ITCanHelp volunteers who can help if you have technical issues with your computer systems. They can come to your home, or help you over the phone.

Look No Hands!

You can help disabled people get the technology advice they need by donating to AbilityNet:

  • Donate Now! Text LOOK132 to 70070 without using your hands to donate £2 to our free services – try using your nose or toes!
  • Smile. Have someone take a picture of you trying to text without using your hands.
  • Share. Share the picture with us and your friends through Twitter, Facebook, Pinterest or Instagram use #abilitynet #looknohands so we can keep track of your pictures

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