Despite being unable to move and speak, several patients suffering from Motor Neuron Disease (MND,
But yesterday's walk outdoors was not easy -- it required mobile respirators, expensive high-tech wheelchairs and constant medical attention.
A woman identified only by her family name of Chen, and married to a MND sufferer for 12 years, described some of the challenges that they face on a daily basis.
PHOTO: CHIANG YING-YING, TAIPEI TIMES
"My husband can only communicate with me usefully by blinking his eyes," she said.
From the onset of initial symptoms to becoming completely immobile is a gradual process. That is why MND patients are commonly called "shrinking people" (
MND is a condition which attacks the nervous system's control over muscles. It is an incurable, eventually fatal disease that gradually robs its victims of their freedom to move, speak, swallow and eventually breathe.
For those patients in the more advanced stages of the disease, being able to leave the house is a labor-intensive, expensive prospect.
Family members and social workers appealed to the public yesterday, however, not to fear the withered appearance of those suffering from the condition.
They also appealed to the government to pay more attention to their medical care.
"Being conscious but immobile is an endless torture," one MND patient said, adding that that the government should allow euthanasia if patients wanted to end their own lives.
The outward appearance of a seriously affected MND sufferer is similar to those with brain atrophy or complete nervous paralysis.
But they do not lose their mental facilities, sense pain like any healthy person, and have normal sexual desires, according to doctors.
"Their senses could in fact be even better developed than those of normal, healthy people," said physician Chu Yi-hung (
Chu said the fact that MND patients retain their senses is the biggest challenge for those providing care. "They need human communication and care," Chu said.
"The enormous cost of treatment and care is another problem," Chu said. He estimated that average monthly expenses amount to over NT$60,000 per patient.
"But the public health insurance only covers basic medical fees," Chu said.
Pan Hwai-tzong (
There are an estimated 800 people in Taiwan who suffer from the ailment.
"But we have only reached 200 patients. At least 600 people might die having never known that they were suffering from this particular disease," Pan said. The disease often affects people between 40 and 50 years old, Pan said.
Stephen Hawking, author of A Brief History of Time and a professor at Cambridge University, is perhaps the most famous person to be afflicted by MND.
Hawking was diagnosed as having the condition 38 years ago, at the age of 20.
Although the cause of MND remains a mystery, TMNDA statistics show that five percent of cases are linked to heredity or gene deficiency. Despite the huge progress made by medical science, the causes of around 90 percent of cases cannot yet be explained, according to experts.
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