Young Parkinson's disease patient in China starts website to help fellow sufferers

Ximen's website helps patients share experiences of a disease usually associated with old people

PUBLISHED : Sunday, 13 April, 2014, 5:17am
UPDATED : Sunday, 13 April, 2014, 9:04am

Six years ago Ximen felt in the prime of his life. The young chemical engineer had recently married and was a manager at a Fortune 500 firm in Shanghai. An avid outdoors sport enthusiast, he even climbed Mount Everest.

But after turning 30 he was diagnosed with early-onset Parkinson's disease, an incurable degenerative nervous disorder that impedes motor functions and causes hand shaking, muscle rigidity and difficulty walking. It is most common in people aged over 60.

Even though Ximen had noticed a few unusual signs while playing sport, he passed them off as unexercised muscles until he realised he was dragging one foot while walking, and sought medical help.

After an operation to improve brain stimulation two years ago, Ximen (a pseudonym he has chosen) started an online community for fellow patients.

It allows them to discuss effective treatments, trade information about financial help and, crucially, talk freely about how society perceives them.

"The disease is always associated with the elderly, yet I want to raise awareness that many younger people suffer from it and what this age group needs," Ximen said.

His website, Young Onset Parkinson's Disease Home, has attracted more than 1,300 members in less than two years. More than half describe themselves as either people diagnosed with Parkinson's before they were 40 or carers of such people.

Globally, about 1.6 per cent of men over the age of 65 have the disease, with the rate increasing to about 4 per cent for those aged 80. But between 5 per cent and 10 per cent of all cases occur in people younger than 40.

The Canadian actor Michael J. Fox was diagnosed in 1991, when he was 30, although he did not announce it publicly until 1998. He established a foundation and today is one of the world's best known advocates for Parkinson's research.

Ximen said his site was open to all Parkinson's patients, but he especially wanted to reach out to younger patients, who he felt had a more difficult time accepting their diagnosis.

"Elderly patients have mostly retired, but younger people are the breadwinners of their families and need to take care of their own parents and children. Losing one's ability to work not only puts financial pressure on families but also affects social life and marriage," Ximen said.

One of the topics discussed by the website's members is avoiding scam treatments. "Almost everybody has a story of being cheated by false advertising. We share our stories so others can avoid those traps," Ximen said.

Meng Ting, another 30-year-old patient, sold all her belongings to fund her search for a cure. After spending more than 200,000 yuan (HK$250,000), she finally accepted the best she could do was manage the disease through regular treatment.

She offers her story on the website in the hopes others won't repeat her mistakes.

Medical resources for people afflicted are scarce on the mainland, Ximen says. Only hospitals in Beijing and Shanghai have dedicated Parkinson's clinics.

Travelling to cities for treatment presents a challenge, especially as the disease makes movement increasingly difficult

Ximen regularly invites doctors to conduct question-and-answer sessions with website members, which he said benefited those who could not visit the two cities easily.

The community itself has become something of a home for patients, he said, as they often shun others out of embarrassment about their disease. They often talked - and even sang - together via webcams, which was a fun form of therapy, he said.

One woman patient, who had not stepped out of her home she was diagnosed, decided to go outside for a walk after a chat with other patients on the site.

Another man, who like many patients was struggling to speak, had found friends again through the site.

"The group is there to help ourselves and others, and to connect with each other," he said.

Ximen is now hoping to register his group as a non-governmental organisation, which would allow it to receive and distribute donations.