Staff Reporter
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.
STRUGGLE
"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.
Kenting National Park service technician Yang Jien-fon (楊政峰) won a silver award in World Grand Prix Photography Awards Spring Season for his photograph of two male rat snakes intertwined in combat. Yang’s colleagues at Kenting National Park said he is a master of nature photography who has been held back by his job in civil service. The awards accept entries in all four seasons across six categories: architectural and urban photography, black-and-white and fine art photography, commercial and fashion photography, documentary and people photography, nature and experimental photography, and mobile photography. Awards are ranked according to scores and divided into platinum, gold and
More than half of the bamboo vipers captured in Tainan in the past few years were found in the city’s Sinhua District (新化), while other districts had smaller catches or none at all. Every year, Tainan captures about 6,000 snakes which have made their way into people’s homes. Of the six major venomous snakes in Taiwan, the cobra, the many-banded krait, the brown-spotted pit viper and the bamboo viper are the most frequently captured. The high concentration of bamboo vipers captured in Sinhua District is puzzling. Tainan Agriculture Bureau Forestry and Nature Conservation Division head Chu Chien-ming (朱健明) earlier this week said that the
BREACH OF CONTRACT: The bus operators would seek compensation and have demanded that the manufacturer replace the chips with ones that meet regulations Two bus operators found to be using buses with China-made chips are to demand that the original manufacturers replace the systems and provide compensation for breach of contract, the Veterans Affairs Council said yesterday. Democratic Progressive Party Legislator Michelle Lin (林楚茵) yesterday said that Da Nan Bus Co and Shin-Shin Bus Co Ltd have fielded a total of 82 buses that are using Chinese chips. The bus models were made by Tron-E, while the systems provider was CYE Electronics, Lin said. Lin alleged that the buses were using chips manufactured by Huawei subsidiary HiSilicon Co, which presents a national security risk if the
The National Immigration Agency has banned two Chinese from returning to Taiwan, after they published social media content it described as disrespectful to national sovereignty. The agency imposed a two-month ban on a Chinese man surnamed Liang (梁) and a permanent ban on a woman surnamed Yang (楊), an influencer with 23 million followers, in October last year and last week respectively. Minister of the Interior Liu Shyh-fang (劉世芳) yesterday said on the sidelines of a legislative meeting that Chinese visitors to Taiwan are required to comply with the rules and regulations governing their entry permits. The government has handled the ban and
RSS