TOUGH FIGHT: Yang Yongping in Kunming, southwestern Yunnan Province, has been combating ALS since 1998, and toughened up in the process (CFP)

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.

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.

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