Fellow MND sufferer weeps for Joost

2011-05-14 00:00

“AS a rugby player you were the best in the world. Fight the disease. A life with meaning is not something that just happens, but something you create.”

This was the message of support to Joost van der Westhuizen from a paralysed man who communicates via a special computer he controls with his eyes.

Deon Nel (51) of Krugersdorp also suffers from Motor Neurone Disease (MND). The keen rugby supporter was in tears yesterday when he heard the news of Van Der Westhuizen’s diagnosis.

“Believe in God, your family and friends and don’t underestimate your supporters.

“I’ve been living on a ventilator for three years, get tube feeding and am being nursed at home and I have quality of life,” he said in his SMS.

In December last year, Nel communicated with his family for the first time in two years, after the expensive special computer was donated to him.

Dr Henry Kelbrick, Van der Westhuizen’s doctor and friend, said yesterday tests are being done to determine what type of MND he has. “It’s ultimately hairsplitting,” he said. “One wouldn’t want to have any type.”

Kelbrick said Van der Westhuizen was initially very shocked at the diagnosis, but is now trying to come to terms with what he is up against. He is struggling with a lame right arm and sometimes his speech slurs, but otherwise he is still functioning well.

 

MOTOR Neurone Disease is the degeneration of the nerve fibres that control the muscles. There is no treatment and life expectancy can vary from as little as 14 months to more than a decade. In the later stages, the disease affects the diaphragm and the patient has to be put on a ventilator in order to breathe. Most patients are simply given supportive care and are counselled to make their wishes regarding interventions like ventilator, surgery and drugs known early.

Well-known sufferers include Pietermaritzburg late struggle stalwart Harry Gwala and physicist Stephen Hawking, who has survived for decades, which is highly unusual.

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