Viewing Life in a New Way
It comes out of nowhere. A twitch in the fingers, a difficulty lifting objects, a stumble on flat ground – but then it gets worse. Control of the arms and legs is gradually lost. The act of swallowing becomes difficult and so does speaking. Eventually, breathing is affected. The entire time, however, the mind stays sharp and helplessly bears witness as the body deteriorates.The disease is ALS and there is no cure.
For Sarah Ezekiel, from London England, it began far too early – when she was 34 and seven months pregnant with her second child. Within a year, she went from an active mother who was always on the go, to a wheelchair dependent victim of ALS, without a natural voice and difficulties to communicate. Today, she still suffers from the tragic disease; however, thanks to eye tracking devices from Tobii, she has found a voice again and is using it to tell others her story.
What is ALS?
Amyotrophic lateral sclerosis (ALS), also called MND or Lou Gehrig's disease, is a form of motor neuron disease caused by the degeneration of neurons located in the spinal cord. The terminal disorder is characterized by rapidly progressive weakness, muscle loss and spasms, loss of speech and respiratory difficulties.
Hitting rock bottom
In February 2000, Sara Ezekiel noticed weakness in her left arm as well as some difficulties pronouncing words. By April she had been diagnosed with ALS. Her physical condition rapidly deteriorated and she was devastated.
“My world was shattered,” explains Sarah. “My marriage collapsed as I became progressively disabled. I couldn't physically care for my children or myself anymore, and spiraled into deep depression. Within one year, I had completely lost the use of my hands, and couldn't operate my computer anymore,”
It would be four years until Sarah had this freedom again.
Finding a voice
Sarah’s depression ran deep, but with the help of her local hospice and the introduction of a new communication device, she was able to turn her life around, interact with the world again and regain some of her independence.
“In 2005, I was introduced to a laptop with the program ezkeys, and a chin switch,” says Sarah. “I was using that equipment until February this year. I'd been happy with ezkeys, but started getting terrible neck pain, from my chin switch. Now I'm using the Tobii PCEye and I love it!”
... (the user story has been shortened, the full story is available for you in a pdf-file)
A new lease on life
Since getting her Tobii PCEye, Sarah has been able to overcome many challenges. And while she still wishes that her life hadn’t taken this dramatic turn, she has come to terms with her condition and is making the most of life.
“I no longer feel isolated and depressed about having ALS. I can contact other MND sufferers through forums, such as Patients Like Me or the ALS Association forum. I can also email my GP, hospice doctor and nurse, if I need any medical help. I feel much more positive about my life, which is important when you have a terminal illness.
Living with ALS is not easy, but with the right technology and the right attitude, life can still be a rewarding adventure.
“The Tobii PCEye has vastly improved my quality of life. I am campaigning to make accessible technology available to everyone. I'm even getting environmental controls soon. I never wanted them before, but everything feels easier with eyegaze.”
Learn more about Sarah on: http://www.sarahezekiel.com