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Although a 20-something, Miao Guwei lives like a baby. Every morning when he wakes up, he lies in bed quietly, waiting for his mother to pick him up, dress him, wash his face and then carry him around on her back.
For more than a decade, Miao has lived with a disease called amyotrophic lateral sclerosis (ALS), which has been encroaching on his nerve cells and progressively paralyzing him. Now, he can no longer stand, walk or move his arms freely.
As a prevalent form of motor neuron disease, it is commonly referred to as such in Britain, while in the United States it is better known as Lou Gehrig’s disease.
Miao grew up in a small town in Han’an County, east China’s Jiangsu Province. When he was a young boy, he was normal, but not very athletic.
“A teacher said that my son has such poise that he must be a high achiever in the future,” said Miao’s mother Gu Xiuying. Miao’s parents were happy to hear that, and like any parents, they hankered for a bright future for their son.
The first signs of trouble came when Miao was 7 years old. His legs became weak and he often stumbled. In the beginning, his parents suspected calcium deficiency. They brought him to see a doctor anyway.
But doctors’ diagnosis struck Miao’s parents like a bolt of lightning. The child was diagnosed with ALS. Doctors warned them that the boy would gradually lose his motor skills. Usually, children with the disease would be paralyzed at 12 years old, and die at 20 from respiratory infection or heart failure.
Gu refused to believe that her lovely son would gradually wither and die. She and her husband sought for a cure to the incurable illness, but the disease progressed as doctors predicted. When Miao was 13, he could no longer stand up. Since then, he has been getting around on his mother’s back or a specialized motor scooter.
Along with cancer and AIDS, ALS is one of the five major incurable diseases recognized by the World Health Organization. However, it is still not widely understood. If not for famous sufferers of the disease such as American baseball player Lou Gehrig and British physicist Stephen Hawking, it might be known to even fewer people.
“The disease has an incidence of four out of 100,000, and mostly occurs to those above 40 years old, and so it is inferred that China has about 200,000 ALS suffers,” said Cui Liying, Director of the Neurology Department of Peking Union Medical College Hospital in Beijing.
According to doctors, eventually patients will become unable to voluntarily chew, swallow, speak or breathe without ventilatory support. The disease usually does not impair a person’s mental, sensory, or involuntary motor capabilities. So far, the causes of the disease are still unknown, although about 5 to 10 percent of all ALS cases are found to be inherited.
Life under ice
Yang Dongping, formerly a computer teacher in a tourism school in Kunming in southwestern Yunnan Province, knew nothing about the disease when, on a summer day in 1998, his once dexterous hand suddenly became too awkward to hold a piece of chalk.
Yang first thought that he was only suffering from exhaustion. But then doctors in two hospitals diagnosed him with motor neuron disease. With no family history of the disease, Yang had no idea what it was.
A trip to the bookstore prophesied his doom. He learned that no medicine can stop the disease’s progression to paralysis, and death usually comes within three to five years.
“The diagnosis was like a death sentence, entrapping me in deep horror and worry,”Yang wrote in his blog.
Although Yang tried many therapies and exercise to keep his muscles strong, they continued to weaken. In 1999, no longer able to write his own name, Yang had to quit teaching.
ALS also took family happiness away from him. Yang’s son was only one year old when first signs of ALS appeared. Later, when Yang and his wife divorced, she took custody of their son.
Now 14 years after the onset of ALS symptoms, Yang cannot talk or move most of his body except for his eyes, a little bit of his neck and some fingers.
Even eating is a difficult task for him. Since the muscles in his mouth have withered, he is too weak to drink from a bowl or straw. Every morning, his caretaker feeds him two bowls of fortified soybean milk with a spoon. It usually takes her about 40 minutes to feed about 200 spoonfuls of soymilk.
Lunch is even more challenging. Food must be broken into pieces, and inserted between his teeth. Sometimes, he has difficulty swallowing and has come close to asphyxiating.
He communicates with the world through a computer. His caretaker put his hands on a mouse pad, and then he controls the mouse with his knuckles.
Yang joined an online chat group for ALS patients and started his own blog in 2009. In the blog, Yang shares his feeling and experiences in coping with ALS.
Recently he wrote, “After enduring the illness for 14 years, I have been through so much suffering. Now I think suffering has not only enriched my life, but also toughened me up and restored me to a true and natural self.”His personal tragedy has instilled in him a humble tranquility.
VOLUNTEER DESIGNER: Wang Jia, a wheelchair-bound ALS patient in Beijing, operates a computer with just his eyes and right index finger. Wang designs logos for charitable organizations
Although it takes him about five minutes to type a word, Yang has posted more than 100,000 words in his blog.
On July 26, after recovering from a cold, Yang posted a message to his readers, advising fellow ALS sufferers how to take medicine. “My nurse put the capsule directly into my throat, and washed it down with water,” he wrote.
Like Yang, many ALS are active online although their mobility is seriously restricted in the real world.
In 2004, Miao’s parents also bought him a computer and connected it to the Internet. In cyberspace, Miao feels as powerful as a superhero. He has made many friends through the Internet, and even made some money. He clings to that hope that someday a breakthrough in medical science will cure his disease.
Wang Jia, a 28-year-old ALS patient in Beijing, even manages to design logos for charitable organizations. Wang used to be a graphic designer, and was diagnosed with ALS in 2007. Although now he can only operate the computer with his eyes and the index finger of his right hand, he continues to live an active life.
Rays of warmth
ALS not only physically impairs its patients, but also plunges them in financial difficulties.
After Yang stopped teaching, his monthly income of little more than 1,000 yuan ($157) was not enough to cover his living expenses and caretaker’s salary.
Currently, medicines to treat ALS have not been covered by medical insurance in China, and it is not only expensive but also difficult to hire a professional caretaker.
Yang’s parents were too old, so his two brothers and their families used to take turns caring for him, Yang wrote. Somehow, this arrangement did not work out, so in 2010, Yang sought help from society.
Yang said that soon his condition caught the attention of the Chinese Medical Doctor Association (CMDA) and some kind-hearted people. They helped him to solve his problems. One lady helped find a caretaker, and volunteers offered to help pay the expenses.
In 2005, more than 100 neurologists affiliated with the CMDA launched a “Melting Frozen Hearts” project to win social support for ALS patients. The project team gathers information about ALS patients nationwide and then offers patients free medicines, treatment, and consulting services.
So far, information of about 3,000 ALS sufferers has been documented by the project, and Yang was one of them. The project has benefited about 1,500 ALS patients with financial difficulties.
The CMDA also appealed to relevant government departments to include ALS in national health insurance covering major diseases, and enroll ALS sufferers in welfare programs designated for handicapped persons.
This June, the Ministry of Civil Affairs entrusted the CMDA to purchase respirators and other necessary equipment for ALS patients with 800,000 yuan ($125,601) in funding from the Central Government.
Huang Min, a manager of the Melting Frozen Heart project under the CMDA, said that this government funding, supplemented with 150,000 yuan ($23,550) of donations from the public, is expected to benefit 1,000 ALS patients.
For more than a decade, Miao has lived with a disease called amyotrophic lateral sclerosis (ALS), which has been encroaching on his nerve cells and progressively paralyzing him. Now, he can no longer stand, walk or move his arms freely.
As a prevalent form of motor neuron disease, it is commonly referred to as such in Britain, while in the United States it is better known as Lou Gehrig’s disease.
Miao grew up in a small town in Han’an County, east China’s Jiangsu Province. When he was a young boy, he was normal, but not very athletic.
“A teacher said that my son has such poise that he must be a high achiever in the future,” said Miao’s mother Gu Xiuying. Miao’s parents were happy to hear that, and like any parents, they hankered for a bright future for their son.
The first signs of trouble came when Miao was 7 years old. His legs became weak and he often stumbled. In the beginning, his parents suspected calcium deficiency. They brought him to see a doctor anyway.
But doctors’ diagnosis struck Miao’s parents like a bolt of lightning. The child was diagnosed with ALS. Doctors warned them that the boy would gradually lose his motor skills. Usually, children with the disease would be paralyzed at 12 years old, and die at 20 from respiratory infection or heart failure.
Gu refused to believe that her lovely son would gradually wither and die. She and her husband sought for a cure to the incurable illness, but the disease progressed as doctors predicted. When Miao was 13, he could no longer stand up. Since then, he has been getting around on his mother’s back or a specialized motor scooter.
Along with cancer and AIDS, ALS is one of the five major incurable diseases recognized by the World Health Organization. However, it is still not widely understood. If not for famous sufferers of the disease such as American baseball player Lou Gehrig and British physicist Stephen Hawking, it might be known to even fewer people.
“The disease has an incidence of four out of 100,000, and mostly occurs to those above 40 years old, and so it is inferred that China has about 200,000 ALS suffers,” said Cui Liying, Director of the Neurology Department of Peking Union Medical College Hospital in Beijing.
According to doctors, eventually patients will become unable to voluntarily chew, swallow, speak or breathe without ventilatory support. The disease usually does not impair a person’s mental, sensory, or involuntary motor capabilities. So far, the causes of the disease are still unknown, although about 5 to 10 percent of all ALS cases are found to be inherited.
Life under ice
Yang Dongping, formerly a computer teacher in a tourism school in Kunming in southwestern Yunnan Province, knew nothing about the disease when, on a summer day in 1998, his once dexterous hand suddenly became too awkward to hold a piece of chalk.
Yang first thought that he was only suffering from exhaustion. But then doctors in two hospitals diagnosed him with motor neuron disease. With no family history of the disease, Yang had no idea what it was.
A trip to the bookstore prophesied his doom. He learned that no medicine can stop the disease’s progression to paralysis, and death usually comes within three to five years.
“The diagnosis was like a death sentence, entrapping me in deep horror and worry,”Yang wrote in his blog.
Although Yang tried many therapies and exercise to keep his muscles strong, they continued to weaken. In 1999, no longer able to write his own name, Yang had to quit teaching.
ALS also took family happiness away from him. Yang’s son was only one year old when first signs of ALS appeared. Later, when Yang and his wife divorced, she took custody of their son.
Now 14 years after the onset of ALS symptoms, Yang cannot talk or move most of his body except for his eyes, a little bit of his neck and some fingers.
Even eating is a difficult task for him. Since the muscles in his mouth have withered, he is too weak to drink from a bowl or straw. Every morning, his caretaker feeds him two bowls of fortified soybean milk with a spoon. It usually takes her about 40 minutes to feed about 200 spoonfuls of soymilk.
Lunch is even more challenging. Food must be broken into pieces, and inserted between his teeth. Sometimes, he has difficulty swallowing and has come close to asphyxiating.
He communicates with the world through a computer. His caretaker put his hands on a mouse pad, and then he controls the mouse with his knuckles.
Yang joined an online chat group for ALS patients and started his own blog in 2009. In the blog, Yang shares his feeling and experiences in coping with ALS.
Recently he wrote, “After enduring the illness for 14 years, I have been through so much suffering. Now I think suffering has not only enriched my life, but also toughened me up and restored me to a true and natural self.”His personal tragedy has instilled in him a humble tranquility.
VOLUNTEER DESIGNER: Wang Jia, a wheelchair-bound ALS patient in Beijing, operates a computer with just his eyes and right index finger. Wang designs logos for charitable organizations
Although it takes him about five minutes to type a word, Yang has posted more than 100,000 words in his blog.
On July 26, after recovering from a cold, Yang posted a message to his readers, advising fellow ALS sufferers how to take medicine. “My nurse put the capsule directly into my throat, and washed it down with water,” he wrote.
Like Yang, many ALS are active online although their mobility is seriously restricted in the real world.
In 2004, Miao’s parents also bought him a computer and connected it to the Internet. In cyberspace, Miao feels as powerful as a superhero. He has made many friends through the Internet, and even made some money. He clings to that hope that someday a breakthrough in medical science will cure his disease.
Wang Jia, a 28-year-old ALS patient in Beijing, even manages to design logos for charitable organizations. Wang used to be a graphic designer, and was diagnosed with ALS in 2007. Although now he can only operate the computer with his eyes and the index finger of his right hand, he continues to live an active life.
Rays of warmth
ALS not only physically impairs its patients, but also plunges them in financial difficulties.
After Yang stopped teaching, his monthly income of little more than 1,000 yuan ($157) was not enough to cover his living expenses and caretaker’s salary.
Currently, medicines to treat ALS have not been covered by medical insurance in China, and it is not only expensive but also difficult to hire a professional caretaker.
Yang’s parents were too old, so his two brothers and their families used to take turns caring for him, Yang wrote. Somehow, this arrangement did not work out, so in 2010, Yang sought help from society.
Yang said that soon his condition caught the attention of the Chinese Medical Doctor Association (CMDA) and some kind-hearted people. They helped him to solve his problems. One lady helped find a caretaker, and volunteers offered to help pay the expenses.
In 2005, more than 100 neurologists affiliated with the CMDA launched a “Melting Frozen Hearts” project to win social support for ALS patients. The project team gathers information about ALS patients nationwide and then offers patients free medicines, treatment, and consulting services.
So far, information of about 3,000 ALS sufferers has been documented by the project, and Yang was one of them. The project has benefited about 1,500 ALS patients with financial difficulties.
The CMDA also appealed to relevant government departments to include ALS in national health insurance covering major diseases, and enroll ALS sufferers in welfare programs designated for handicapped persons.
This June, the Ministry of Civil Affairs entrusted the CMDA to purchase respirators and other necessary equipment for ALS patients with 800,000 yuan ($125,601) in funding from the Central Government.
Huang Min, a manager of the Melting Frozen Heart project under the CMDA, said that this government funding, supplemented with 150,000 yuan ($23,550) of donations from the public, is expected to benefit 1,000 ALS patients.