The disease named after US baseball player Lou Gehrig and most publicized by high-profile victim Stephen Hawking doesn’t have to instill fear and despair. The Yangzhi Rehabilitation Hospital Affiliated to Tongji University in Shanghai has a new program to help sufferers cope.

Its target is people diagnosed with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease. It is an incurable form of motor neuron disease characterized by gradual degeneration of muscle control.

When Guan Xianghui, 68, who himself was diagnosed with the disease four years ago, signed on at the rehab hospital to be a teaching assistant, he was determined to bring hope to others with the affliction.

“The reason I am here is to help my fellow patients fighting fear and despair,” Guan told Shanghai Daily. “To think that one day your brain works well and you know everything, yet you can’t move, speak or even eat, and eventually you’ll die is terrifying to anyone. But we don’t have to live in fear every day.”

Although the life expectancy of the disease once diagnosed is typically three to five years, English physicist Stephen Hawking (1942-2018) survived for 55 years. He famously continued to communicate from his wheelchair through a speech-generating device.

Guan, a former marketing trainer, has lost basic arm functions, with only his fingers still movable. Although he doesn’t know what awaits him in the future, he said he doesn’t think it’s the end of the world.

Organized by the Yangzhi hospital and sponsored by Shanghai Disabled Persons’ Federation, the new mutual help program, which is free of charge, is an expansion from treatment of patients with limb, visual, hearing and mental disabilities to include ALS victims for the first time.

The program began on October 24. Under its auspices, 15 patients will stay in the hospital for about a month to receive training on life skills, caring tips and psychological counselling. Some of the training will include underwater therapy devices that strengthen a patient’s muscles and a dynamic scenery simulator that helps patients resume their sense of balance.

Professor Lan Danmei, a neurology expert at the hospital, told Shanghai Daily that the facility will assess the conditions of patients to tailor treatment.

“We will teach them basic life tricks, such as maneuvering wheelchairs and putting on socks by themselves or with the help of some tools,” she said. “We will also teach their families caring tips such as massages, passive exercises to avoid the formation of thrombus and what to do if patients choke or inhale when eating. It’s quite normal that some patients can’t swallow properly and might unconsciously inhale food or water into their lungs, causing infection.”

But the first step in the process is to convince patients that such help matters.

“It’s not always easy to persuade patients to come here,” said Xie Haixia, who oversees the program. “Some are disappointed to learn that we can’t offer any breakthrough cure.

“‘What’s the point of doing all this?’ they ask. We want to persuade them that our help can actually make a difference.”

Medical researchers believe that survival longevity primarily depends on factors such as the severity of the disease, its rate of progression, patients’ constitutions, the quality of treatment and care and mental state.

Guan said the program will include group mental counselling sessions aimed at building confidence.

“The will to live is vital to people like us,” Guan said. “If your will is gone, your condition will degenerate faster than you imagine. Accepting the reality and then moving on is a lesson that we have to master.”

Guan shared with Shanghai Daily how he was diagnosed with the disease and then managed to crawl out of the abyss of hopelessness.

“The first sign was a sudden drop of one of my arms when I was cooking one evening. I couldn’t lift my arm for a while,” he said. “But the weakness went away quickly, and I thought it was just a neck vertebra problem that I had been suffering from for years. I didn’t pay much attention and turned to massage and acupuncture for relief, as usual.”

However, the symptom didn’t go away and the “fits” became more frequent. After visiting several different doctors and receiving repeated electromyography, a test that measures the electrical activity in muscles, he was diagnosed with ALS.

“I knew about the disease from the story of Hawking, but having a hunch didn’t really help when it became a reality,” he said. “For a period, I couldn’t help asking, ‘why me?’ because this is not a common disease.”

That is true. Globally, the annual incidence rate of ALS is approximately one to two cases per 100,000 people. In Asia and Africa, the overall incidence rate is slightly lower than in Europe and America.

“I persuaded myself that life is like a lottery; you can’t expect to win every time,” he said. “Sometimes, things just happen,” Guan said.

The relationship between patients and their families will be part of Guan’s sessions at the rehab hospital. He said his wife was even more anxious than he was after he was diagnosed.

“Families shoulder greater pressure,” he said. “It’s tiring taking care of a victim, especially since patients can be acutely anxious and even hostile at times. I want to reinforce in patients how much love exists between them and their families to make communication easier.”

Xu Quansheng, a volunteer with the program, fully agrees with that idea. Once the family member of an ALS patient, the 82-year-old is now the president of the Shanghai Sunshine ALS Patient Caring Center.

“My brother-in-law was diagnosed of ALS 16 years ago,” he told Shanghai Daily. “My sister was not good at caring for him, so I took over the job. I often accompanied him to the Huashan Hospital in Jing’an District, during which time I met many families like us who needed help. My brother-in-law died about two years later.”

Xu went on to co-found the caring center mainly to help communities understand and cope with ALS.

“I’m glad that I have the opportunity to help give victims the courage to live on,” said Xu. “And I hope there will be more such programs in the future.”