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Hawking's death puts ALS patients in spotlight

By Zhang Yi | China Daily | Updated: 2018-03-27 07:37
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The mother of Shi Qingfu puts on a respirator for him. [Photo by Cui Jing/China Daily]

Meaningful existence

Shi Qingfu, who has had ALS for 14 years, is a tough, humorous man who does his best to help and encourage fellow patients.

The 35-year-old "eats" five meals a day. Two are injected directly into his stomach via a feeding tube, but he insists on chewing and swallowing the other three to stimulate his throat and stomach muscles.

After breakfast, Shi sits in front of his compute to answer questions from other patients or write about his own experiences.

His mother has to help by placing his hand on the mouse every time. He can only move one of his middle fingers, and it takes all his strength to click the mouse. Sometimes his head lolls because his neck is losing the ability to support the weight.

However, no matter how difficult his "work" becomes, Shi insists on doing it because he finds a meaningful world on the internet.

In 2005, when Shi was a junior student, he started to feel a weakness in his fingers that meant he couldn't hold a pen. The diagnosis of ALS the following year was a bolt from the blue, given his supposedly promising future.

He overcame many difficulties to finish university, but since then he has stayed at home in Hengshui, Hebei province. Having once been desperate in the face of the fatal illness, his optimism and courageous attitude have gradually calmed him down.

His name online is Shitou, or "stone", which is the literal meaning of his family name and also describes his steadfast personality.

His friends hail Shitou as an ALS "encyclopedia" because he tries to learn as much as possible about the illness and records the changes in his own body.

Linking theory to practice, he uses his personal experiences to help other patients.

Over the years, he has answered more than 10,000 queries from patients and their families on forums, websites and social media. He tries to encourage them with humorous remarks.

"I have made many friends through the internet. We share the same experiences, so many have been in touch. It makes me realize the value of my existence," he said.

"Life is about constantly learning and choosing. I chose to use my knowledge to help other patients because few people travel this road and it requires courage to join in. If everyone did something, ALS patients could live better lives."

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