Wearing white-T-shirts with pictures of family members printed on the front, a group of "shrinking warriors," gathered at the Chiang Kai-shek Memorial Hall on the last day of the tomb-sweeping weekend in remembrance of loved ones who have passed away.
Hsu Tsui-lieh (徐粹烈), president of the Taiwan Motor Neuron Disease (MND) Association and over 20 volunteers organized an outing for a group of MND sufferers and their families. The outing was aimed at allowing the sufferers to interact with the outside world while acknowledging the courage of past sufferers of the disease.
PHOTO: GEORGE TSORNG, TAIPEI TIMES
People with MND attended the outing in wheelchairs and crouches -- and some were even hooked up to mobile respirators. The patients -- also known as the "shrinking people" -- and their families shared their thoughts and ideas with doctors, volunteers and each other in the spring sunshine.
They wore white T-shirts with the pictures of their beloved on the front and "shrinking warriors" printed on the back.
"MND sufferers are reluctant to go outside their buildings because of their disability or immobility. However, interaction with other people would not only give their caretakers a break, but would also lighten up the patients' spirit," said Shen Shin-Huei (
MND is a progressive, fatal neuromuscular disease. People with the disease gradually become more and more immobile, until they reach a point of complete immobility. The causes of -- and cure for -- the disease have yet to be discovered.
"The sickness is a torture for both the patient and their families. The worst part is that the patients, though immobile, are still conscious. Thus, they should be treated with respect," Hsu told the Taipei Times.
One such patient is Chen Hung (
The MND Association managed to get reimbursement coverage for the disease's medication, Rilutek, included in the National Health Insurance plan. The association also got ALS listed as a major/severe disease in the insurance plan and respirator-care centers for ALS patients have been established.
"We call for the establishment of a task force designed to do research on the causes and cures of MND -- and to provide information about the mysterious disease to the patients and their families," Hsu said.
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