Former Springbok rugby player, Joost van der Westhuisen, has reached stage three of the terminal motor neuron disease which he was diagnosed with in mid-2011.
Van der Westhuisen (43) is wheelchair-bound, cannot use his arms and can no longer feed or bath himself. Once he reaches stage four of the disease, he will be completely bedridden.
Van der Westhuisen has an aggressive form of the disease, amyotrophic lateral sclerosis (ALS), and was given 22 months to live when he was diagnosed. He has now been alive for 44 months since diagnosis.
ALS is a rapidly progressive neurodegenerative disease. Some of the symptoms include: muscle atrophy (wasting of the muscles), difficulty speaking and communicating, severe muscle spasms, and difficulty swallowing and breathing. It is caused by genetic mutations and can run in families. Some forms of the disease are less aggressive and can yield a post-diagnosis lifespan of up to eleven years.
Even though certain forms of the disease are linked to genetics, upwards of 90 percent of cases have no known cause. However, the disease is especially prominent amongst people who participate in contact sports, military service, and people who have had head trauma.
Joost van der Westhuisen, scrumhalf in the 1995 Rugby World Cup winning Springbok team, this week visited former Sharks scrumhalf Ryan Walker in KwaZulu-Natal. Walker is also a sufferer of motor neuron disease.
The visit was related to van der Westhuisen’s J9 foundation, a group formed by van der Westhuisen, which he uses as a platform to raise awareness of the disease, promote research into the field, motivate other sufferers to be positive and keep on living, and also to provide support for other people afflicted with MND.
Walker played rugby for the Sharks in 2002 and 2003. He was diagnosed with MND after the birth of his first child, around two years ago. Walker’s wife, Paula, is currently pregnant with their second child.
According to the J9 foundation’s chief executive, David Thorpe, the foundation aims to provide hope to people with MND. “The message we want to send people with MND is that we are close to finding a cure. We are getting there. And that life continues, even with MND. They have to remain positive,” Thorpe stated.
Van der Westhuisen has flown around the world seeking further information and expertise on the subject that he can bring back to South Africa. He is a participant in clinical studies at Massachusetts General Hospital in Boston. Dr Merit Cudowits, chief of neurology at the hospital, is performing research on the disease.
According to van der Westhuisen and Thorpe, researches in America have assured them that a cure for MND will be found within the next four years. Even though Joost van der Westhuisen may not be around to see the fruits of his labour in his home country, ultimately this is a purpose he has devoted himself to and he will be remembered as a beacon of hope for other sufferers.