Life with MS disease seen through a computer
MADRID — Think of the frustration when your computer slows down, watching the little wheel spin round and round, or when your mouse suddenly gets a life of its own and starts jumping around.
Now replace the computer with your body and you get an idea of what it’s like to live with multiple sclerosis (MS), a neurodegenerative disease that can cause slower speech, difficulty in thinking, spasms, and other symptoms.
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To raise awareness of this incurable disease, which affects more than two million people worldwide, the Spanish Association for Multiple Sclerosis has made a special kind of computer that recreates the symptoms via equivalent IT glitches.
A person can be using the computer completely normally, and all of a sudden an error in the operating system appears.
The cursor slowing down and falling down the screen, for instance, is representative of fatigue.
The screen might go completely dark, which would refer to sight loss. And so on.
The computer is designed to echo the daily life of a patient affected by the autoimmune disease that attacks myelin, the fatty substance that surrounds and insulates the nerve, impeding electric signals from traveling to and from the brain.
“My cables are breaking down just like the computer,” says Gerardo Garcia, president of the association who was diagnosed with MS in 1985 and is now in a wheelchair.
He, like many other patients, suffers from “chronic fatigue,” he said Wednesday ahead of World MS Day on May 30.
“If you make the necessary changes in the (computer’s) operating system to make it slow down, you’re making a pretty good comparison with how your body is working.”
There is treatment available to slow progression of MS, often called “the disease of 1,000 faces” due to the diverse number of symptoms.
But Celia Oreja-Guevara, head of the neurology department at Madrid’s San Carlos Hospital, said that people don’t always know that the disease isn’t immediately fatal.
“What is that, am I going to die?,” she said a patient asked her just last week when diagnosed.
The association wants to take the computer to schools and hospitals to raise general awareness of the illness and possibly auction it off.
With the funds, more computers could be created to raise more awareness, it says.
