Terpstra could return to China

A keyboard helps Willie Terpstra to converse. Picture / Alan Gibson

Willie Terpstra has not ruled out a return to China for more of the controversial fetal cell surgery she had to treat her motor neurone disease.

Six months on from the operation, in which two million cells from aborted fetuses were injected into her brain, the Rotorua woman said she would do it again, given the chance.

"I think it stops the progress of the disease," 64-year-old Mrs Terpstra said at her home this week.

The doctor who performed the operation, which is banned in most countries, had offered some patients the chance to return for another round of the $40,000 treatment for free in order to further his research.

Mrs Terpstra was diagnosed with motor neurone disease, which is a terminal condition causing muscles to waste away, in May last year.

She had almost lost the ability to speak by the time she went to China and had hoped the operation would enable her to talk again.

But her speech never really improved, except briefly after the operation.

Her main improvement was a respite from severe headaches and cramps.

Now, Mrs Terpstra cannot speak at all and must rely on a special talking keyboard to communicate. She types and the machine reads what she writes.

In the months since the operation, she has also had a tube inserted into her stomach to ensure she gets adequate nutrition.

The disease has affected her ability to swallow and causes her to drool. Two weeks ago, she had botox injections that she hopes will calm the drooling soon.

She must also take medication to stop twitching in her muscles. She said the most difficult thing has been the loss of her speech.

"I cannot stand (that) I cannot talk," she wrote on the keyboard. "I used to be talker."

But despite her deterioration, Mrs Terpstra remains active. She plays bridge, cooks, gardens, walks her dog and hopes to get back on the golfing green after the hole in her stomach where the tube is inserted heals.

Other motor neurone disease sufferers she has met since her China operation have died. She believes her prior fitness and a positive attitude contribute to her relative wellbeing.

"I don't let it get to me," she said. "Positive thinking does a lot."

She is also glad that she has helped raise the profile of the disease, which afflicts up to 250 New Zealanders at any given time.