Try to treat Parkinson’s like an old friend

It is now nine years since Sheng Kanghua sat in a waiting room, hoping that the doctor would dismiss his forebodings. When he left the doctor’s office, his thoughts kept returning to Deng Xiaoping, who for years was the most powerful politician in China. If Deng Xiaoping couldn’t be cured of Parkinson’s, there was no hope for him either.

Sheng Kanghua was 71 when he received his diagnosis, and he’d never had any serious health issues before. A faint trembling in his right hand was the only visible sign that the connection between his brain and his body was deteriorating.

In the months that followed, he came close to despair. He envisioned a wasted figure in a wheelchair – that would be him at some point in the future, he was sure of it. Since boyhood, he had been part of a group of old schoolmates who had stuck together. All of them were in good health, but some of them had parents with severe Parkinson’s. These parents couldn’t feed themselves or get out of bed, and they were racked with pain. Their sufferings seemed to confirm his worst fears. “Can’t be cured”, Sheng Kanghua thought, “Can’t be cured.”

During the course of a long life, Sheng Kanghua had to confront many hardships, and he discovered he was a man who strove to get more out of life than just what lay in front of him. At 51 – an age when many of his colleagues had begun to look forward to retirement – he quit his steady job and, flying in the face of all warnings, started his own business.

In the difficult time after his diagnosis, that willingness to buck the odds was reawakened. Today, nine years later, through a systematic effort that involves exercising regularly and following his doctor’s instructions, he has succeeded in delaying the progression of his disease. Not in stopping it, for that isn’t possible – but in delaying it. He has more symptoms now than in the first years of the illness; it’s become hard to get a good night’s sleep, or even to turn over in bed. Painful spasms shoot through his hands and feet. And he cannot recall all the Chinese characters he once mastered.

Yet he feels better than when he was less sick. Life is better. The difference, he believes, lies in his mental attitude, an attitude he sums up in a piece of advice to other people living with the disease: “Parkinson’s will be with you for the rest of your life. So it’s important to think about how you want to deal with it. If you see it as your enemy, you will allow hatred into your mind and hurt yourself. Instead, try to treat Parkinson’s as you would a friend. You need to observe it, communicate with it, understand it.

One of Sheng Kanghua’s great joys is to travel. He relates how, after his diagnosis, he accepted the offer of a wheelchair when he got off a plane. And he enjoyed using the service. He walks crookedly and more slowly than people who are well, and it was very pleasant not having to navigate the airport crowds. Yet the next time he flew, he insisted on walking from the plane himself. “I mustn’t grow dependent on others,” he says, “and lose the ability to do things on my own.”

Sheng Kanghua quotes a well-known Chinese proverb to express the daily challenge he faces in living with Parkinson’s. He has to find a balance between insisting on his independence and accepting assistance when he needs it. Ná de qĭ, fàng de xià, it goes – literally, “Pick it up or put it down.” Sheng Kanghua explains the proverb this way: “It means that sometimes, I should hold on very tightly and enjoy doing what I’m still able to do. Other times, I need to accept the inevitable and let go. And I should know when to do what.”

As a result, he doesn’t refuse necessary assistance. But that requires another balancing act – between himself and his surroundings. “I want to maintain a strong image in front of others,” he says. So if anyone other than his close family and friends sees him struggling, he prefers they take no notice. With good friends it’s different. He still meets his old schoolmates regularly in the club where they hang out. As they chat and eat lunch at the round table, his best friend unobtrusively places food on his plate. It doesn’t pain him to accept assistance from his family either. On the contrary. After a long life of being self-reliant, Sheng Kanghua has discovered that being open to help is enriching his old age. He’s no longer capable of bending over and bathing his feet. Now his family helps him do it, and he finds their kindness reassuring and touching.

Ná de qĭ – fàng de xià.