Willie Terpstra's long waiting game

Willie Terpstra back home in Rotorua after her surgery in China to stem the advancement of her motor neurone disease. Picture / Alan Gibson

Willie Terpstra is frustrated. She sits on her cane sofa looking over a mirror-smooth Lake Rotorua, in her newly loose top and slacks, busting to become part of the conversation.

Feet thrust into a pair of scuffs decorated with Dutch embroidery, she springs up every few minutes to search for something - a document, a photo, once a statuette, proclaiming: "Most improved golfer Springfield Nine Hole, 2004".

It is 43 days since a Chinese doctor bored two small holes through her skull and injected a syringe of olfactory ensheathing glial cells directly into her brain.

Yesterday she had her first haircut after her temples were shaved. And still Willie's tongue will not move correctly. She cannot speak.

While her husband, Rein, and golfing partner, Mary, burble on about how much better she is, you can see it in her eyes.

From time to time they flash with frustration and she pinches or slaps Rein with just a fraction too much feeling.

She taps out her agony on the electronic keyboard that displays her words in fluorescent green, then blares them out in a jerky, robot-like voice: "I was hoping I could talk after it."

It was March 23, a week before Easter Monday, that Wilhelmina Terpstra (64) walked into the operating theatre, 25km from the centre of Beijing, and took the greatest gamble of her life. She had already had her head shaved by a nurse in Xishan (West Hill) Hospital - which she describes as "old and dirty" - with old-fashioned soap and water. There had been no food or fluids from 10 the night before.

Rein was not allowed into the theatre. She was on her own.

As expected, there was no general anaesthetic. Instead her doctor, Professor Hongyun Huang, draped a sheet over Willie's face so she could not see, injected local anaesthetic into her forehead and drilled two 3mm holes in her temples.

Apart from the local, which was seriously painful, "I didn't feel anything."

She did, however, hear the fluid containing the cells, which had been harvested from the olfactory bulb (just above the nose and at the base of the brain) of aborted foetuses then cultivated in the lab, gurgling into the right side of her brain. She taps her forehead to show. The entire procedure took 50 minutes.

Before November 2003 Willie Terpstra was mentioned in the papers only for her golf or bridge scores. The couple, who emigrated from Holland in 1979 when their youngest child, Jan, was 6, settled "accidentally" in Tokoroa. They came for a "better life for the kids and for us. We made good money in Holland but there wasn't much room", says Rein, 61, sitting there in his shorts, legs of a 40-year-old stretched out in front of him, smiling and joking.

"We love it here. Never regretted coming ... I didn't want to be arranged by everybody - and that's what Dutchies try to do."

Back in Amsterdam he was an administrator with Commercial Union insurance. In Tokoroa he became a paper tester at Kinleith mill. Willie managed the home front, Michael (now 41), Renske (37) and Jan (32).

It was a relaxed, energetic household. There were always animals, a couple of cats, a serious-sized Belgian Bouvier dog. Willie and Rein played tennis and bridge, travelled New Zealand and the Pacific Islands as far as Hawaii - "almost all over the world".

Four years ago, with the children gone, they decided to move to Rotorua. By now they had taken up golf and the Springfield Club was the most friendly and accessible. Rein did not mind the half-hour drive to Kinleith where he still works 12-hour shifts, four on, four off.

I hope you retire soon blinks his wife's electronic screen.

Today their latest Bouvier, Maxima, squashes herself into the tan La-z-boy and Alexander the ginger cat sleeps in his basket behind the sofa, while his black companion, Robbie, winds round our ankles. Willie's office, computer, printer, phone, hum at her elbow.

Every hour or so they offer more coffee, tea, water, juice. The plate on the table contains three kinds of cake - two of them made by Willie. An Australian journalist is invited to stay the night - and accepts. That's the kind of people they are.

In November, when Willie was getting her golf handicap down, they noticed that when she was tired, especially after a few glasses of wine, she started to slur her speech.

At first she blamed her dentures, "so we both got new dentures", says Rein. "It didn't help, it got worse."

A nursing friend suggested Willie should see a neurologist. She had two friends with motor neurone disease and her symptoms looked horribly familiar. Auckland neurologist Ernie Willoughby conducted the battery of tests that rule out other conditions and established that Willie had a form of the disease known as bulbar palsy.

The condition affects speech, swallowing and breathing, in that order. It is progressive, and lethal.

Willie's machine blinks I went 4th April and got news 19th May. He said I had two to three years."

The Terpstras are not the sort of people to cry for long. "Immediately we looked at things we could do," says Rein.

First they travelled to Holland, staying with their younger son, Jan, now a professional golfer. "We thought New Zealand might be a little bit behind, no disrespect. But it was the same news over there."

In fact, it was worse. They went to an open day where they saw, close up, the realities of a disease that kills people so quickly it is impossible to test drugs on them before they die.

"People came in with bad breathing, basically dead - kept alive by machines," says Rein. "It was not nice to realise that will be Willie's future, so what can you do?"

Once home, Jan emailed about a Dutch man who was going to China for controversial treatment. "There's hope for you guys," he told his parents.

Rein takes up the story: "This guy had a website as well. We saw how he'd improved ... Overall he'd improved enormously - and he's still improving."

They decided to give it a shot. Willie emailed Huang who told her to work through a Steve Bayers in Wisconsin. Bayers' son had motor neurone disease too, he'd been to China, done quite well. Now his father had the job of scheduling all Huang's foreign patients. There was a huge list.

Willie, fighting to stay away from the insertion of a gastro-intestinal feeding "peg", was disappointed when the hospital couldn't take her until August. But after Christmas when they called to check, things had changed. People had died, been unable to raise the money, the list had shortened. She could go in March.

The procedure and trip cost $40,000, $24,000 of which was donated by friends (who arranged barbecues and events) and family. Rein and Willie, who had been prepared to pay the lot themselves ("a triple bypass in private costs more than that,") provided the extra $16,000.

Chinese hospitals are different. Willie expected to spend a week in Beijing being assessed and having tests before the procedure was carried out. As it happened, she, Rein, daughter Renske and Jan waited two weeks in that double room.

As Rein says in his accepting way, "It was Chinese New Year ... sometimes there's a bit of a shortage of [olfactory] cells."

Nursing care was almost nil. All patients must bring their own caregivers who sleep with them in one of the 20 rooms provided in the foreigners' wing of the hospital.

Intones Willie's machine in that robot voice: "You have to do everything for yourself. They sweep the room, sweep dust from one corner to another. You get two towels."

Neither patients nor caregivers ever see the solution containing the olfactory cells, or the lab where they are cultivated.

Says Rein, "They're very secretive about it. That's what the West wants too - that he [Huang] writes about it."

Did all this make you lose confidence? I ask. "No, it's the doctors, nurses and other patients who help build you up. You have to be positive or else you don't go."

Huang works with a team of presumably junior doctors who look after his patients before and after surgery. Willie's was a Dr Chang, who was extremely nice, but whose English was so poor they had trouble understanding him.

The surgical team worked Monday, Wednesday and Friday, operating on three patients a day. All were booked for 9am. Willie was lucky that Monday morning. She was operated on first.

Three hours later, after an enforced rest that she found almost unendurable, she was allowed up. The headache that had gnawed at her for months had disappeared. She sat up and drank a glass of fruit juice, the first non-viscous drink she had managed to swallow without half-drowning herself, for the past three months.

And, says Rein proudly, she poked out her tongue. "Do it, Willie," he says now, and obediently, out flicks the tip on a small, pink tongue.

"See, she can do it," says Rein. "She couldn't do that before the operation."

As with all the other successful operations, the atmosphere at Xishan Hospital was ecstatic. As Rein explains, feelings ran high in the foreigners' wing. Many people arrived in such poor condition they had little chance.

Several needed machines to breathe, four had severe spinal injuries. Two died. And the odd few, such as the Belgian guy who hadn't walked for about four months, got up and walked again.

"It was about two days after the operation in the hallway. He walked about 20m. Everyone was clapping and crying," says Rein. "There was no embarrassment whatsoever over there. We cried and laughed a lot."

That first night they also noticed Willie's night cramps were gone. She could do up the buttons on her Chinese hospital pyjamas. One day her speech dramatically improved - and then, inexplicably, disappeared again.

A photo of Willie lying in her spartan foreigner's bed at Xishan Hospital, face down, covered in a red dressing gown, says it all. "A very bad day."

Her machine flashes into life and the voice that sounds like something out of Star Wars begins: "I get emails from people and they ask me what to do. But I cannot tell them what to do."

So, nearly seven weeks on, is Willie Terpstra better? Says Rein: "She's not fitter, she's lost 10kg, but she's eating and drinking far better. Before she couldn't eat enough to sustain herself. Her speech comes and goes, at the moment it's shit. She talks easier in Dutch."

Before, he continues, "she was hanging over the sink, choking, spewing. She couldn't cuddle anyone because she was soaking wet [from her own saliva which she was unable to swallow]."

Today the headaches are gone, the cramps negligible, the confusion of China blurred in memory. Did the grimy, old hospital make you lose confidence, I ask? "No, it's the doctors, nurses and other patients who build you up," answers Rein. "You have to be positive or you don't go."

And were you put off by the low degree of response to the therapy claimed by Huang - just a 5 to 15 per cent improvement after treatment - that I've seen quoted in many papers and articles?

"No," says Rein, clearly surprised. "We didn't know about that."

Although she cannot speak, Willie scuttles around the house, wrestling with furniture, correcting Rein, laughing, only occasionally choking slightly into her handkerchief. Yesterday she played nine holes of golf then cooked chops for dinner. In an hour a friend is coming to discuss their bridge hands.

Whatever her future, Willie and Rein Terpstra surely know they have fought this disease with every atom of willpower, personality and strength they possess. They still hope Huang's olfactory cell therapy will work and Willie will talk again.

And they have plans. The next one, says Rein, is to hire a campervan and travel through the country. Adds Willie: And play golf at every course in New Zealand.