An Amyotrophic Lateral Sclerosis (ALS) sufferer unveiled a new book of poetry yesterday in Taipei in a bid to increase public awareness of this rare disease.
ALS, also known as Lou Gehrig's disease or Motor Neurone disease, is an incurable motor neuron disease that progressively strips sufferers of their ability to control their voluntary movements.
Despite the fact that 42 year-old Lee Su-lan (李素蘭) can no longer lift her hand to write or type, creative writing remains big part of her life.
Relying on caretakers from her nursing home who can decipher her garbled speech, Lee thanked friends and former colleges who supported her in the venture.
To type the manuscript, Lee relied on a special computer with controls she could manipulate by moving her knee and her left hand, helping Lee type her manuscript as well as to surf on the Internet.
The entire process moved at an agonizingly slow pace.
FINE MOTOR SKILLS
"She no longer has fine motor controls," explained Lan Li-feng (藍麗鳳) of the An-tai nursing home where Lee has been living since her mother passed away. "So her hand needs to be positioned correctly on the trackball before she can drag the mouse by twisting her torso."
Lin Chin-mei (林金梅), secretary-general of the Taiwan Motor Neuron Disease Association (MNDA) estimates that 800 to 1,000 patients suffer from ALS nationwide.
"In the ten years the association has been in existence, we have successfully fought to get the National Health Insurance to pay for the drug Rilutek and appealed to the Council of Labor Affairs until they agreed that those suffering from ALS can apply to hire up to two foreign caretakers," Lin said. "Now we are working on improving care for ALS patients and developing technology that will enable them to communicate better."
Lee is not the only Taiwanese ALS patient who has written a book.
Despite the fact that he can only communicate through blinking, veteran journalist Chen Hung (陳宏) has written three books.
Chen relies on his wife Liu Hsueh-hei (劉學慧) and a good friend, Chang Cheng-tze (張澄子), to record his words one by one, blinking his eyes to indicate the characters on a board with the Chinese "bopo mofo" phonetic system.
Before being admitted to hospital seven years ago, Chen had written articles on artistic photography and photojournalism, as well as in-depth news stories, commentaries, theater reviews and scripts during his 40 years as an amateur and professional journalist.
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