Crippled by the disease that killed SA rugby captain, Joost van der Westhuizen

August 04, 2019

Gert Saayman, with his wife, Salomé, and their daughters, Jamie and Ankia. After Gert was diagnosed with MND, this family understand the importance of making memories while they still can.

Be thankful you can walk. Be thankful you can have a conversation. Be thankful that you can still make amends for that nasty or sarcastic thing you said, but didn’t really mean… Because it can all be taken away from you like that,” says Salomé Saayman, snapping her fingers to drive her point home.

It can all be taken away, the way it is being taken away from Salomé and her husband, Gert, right now.

In March, Gert (54) was the picture of perfect health, strong, athletic and loving the fact that his job as a sales consultant for farming equipment and tractors allowed for him to spend most of his time outdoors, marvelling at nature and soaking in that South African sunshine.

Eight months later, Gert has withered away to nothing but skin and bone. His muscles have atrophied as the motor neurons / nerve cells that control them are destroyed. Within this short time, he has gone from walking normally, to requiring a crutch, then depending on two crutches, before needing a walking frame, and now he is wheelchair bound and unable to sit upright unassisted.

Dependent on a ventilator which requires a power source, Gert is confined to one room in his home. While his lungs are perfectly healthy, Gert’s diaphragm and the muscles that allow the lungs to expand and contract for breathing have degenerated as well.

Eventually, Gert will not be able to swallow (he will need a feeding tube) and his speech will become garbled as he loses control of the muscles in his throat.

“The hardest thing about Motor Neuron Disease (MND) is that you have absolutely normal brain function. You are still perfectly aware of everything. Your intellect and intelligence are still intact but you are trapped in a body that just doesn’t want to work,” explains Salomé.

When Salomé talks about MND, most people admit not having heard of the disease before. However, when she explains that this is the same disease that former Springbok rugby captain, Joost van der Westhuizen, and British physicist, Stephen Hawking, were afflicted with, people realise they may have a vague awareness what she is talking about.

“Very few people knew about MND until Joost van der Westhuizen was diagnosed with it. With Joost, it started while he was on holiday with his family. Someone threw a ball toward him and he realised he couldn’t catch the ball, but no two people with MND are affected in the same way.” says Salomé.

While the muscle degeneration began in Joost’s arms, for Gert it began in his calves.

The moment Gert noticed his disease

“I used to park up along the Utrecht Street sidewalk whenever I went to Pick ‘n Pay, and walk down the incline to do my shopping. In April, I realised I could hardly manage to climb back up the incline and it just got harder to do until it became impossible,” says Gert.

The first doctor the Saayman’s consulted believed that Gert may have a magnesium and calcium deficiency and recommended a supplement. When Gert’s symptoms became worse, he referred Gert to a neurology specialist.

“One night, while we were lying in bed, we noticed that the muscles in Gert’s leg were twitching uncontrollably,” says Salomé.

“I joked, at the time, that maybe I had the same sickness at Joost van der Westhuizen,” says Gert. Neither of them actually believed that it would be true.

However, an electrodiagnostic test and a second opinion confirmed the diagnosis of MND.

Accepting the diagnosis and adjusting to it has not been easy for the Saaymans and the couple say that they would never be able to manage without the support of friends, family and the Vryheid community.

“As you can imagine, our medical aid has been depleted, and Gert’s workplace assisted us to set up a trust to help with Gert’s ongoing medical care. Thank you to everybody who made a donation into the trust, and to all the community organisations that stepped in to assist us where they could. We appreciate it.”

Moving forward

Salomé and Gert lean on their faith in God for strength and say the only way to cope with MND is to “Face it, accept it and take responsibility.”

“I have learned to graciously accept help when it is offered. When someone offers to make dinner, for example, in the past I may have proudly declined, but now I say, ‘Thank you, I appreciate it.’ I know we cannot do this alone and I am grateful for any help. Even if someone just sends you a message of support, for those few moments that it took that person to send the message, we know they were thinking about us,” says Salomé.

“I accept that life is short and I try to stay positive. I am grateful for the fact that I still have my friends and family around me and I am grateful for the community’s support. I would like people who always think, ‘Ag, not me,’ when they think of something bad happening, to understand that everything can be taken away in a moment,” says Gert.

Salomé advises, “If you think you or a loved one may have MND, make sure you get a second opinion to ensure that the diagnosis is 100% accurate. To have peace, you must then accept what is going to happen and accept your own feelings. If you want to cry, cry. If you have feelings of anger, be angry… but also be grateful for the time you do have and use that time to make memories.”

Salomé and Gert celebrated their 26th wedding anniversary last month. They received a surprise visit from the Pastor who married them. The Pastor is now 80-years old and residing in Volksrust.

Salomé recalled that the thing she noticed about Gert, when she first set eyes on him were his muscular calves.

“He was dressed in a khaki shirt and shorts and I saw him walking across the street. I said to my friend, ‘Look at that guy’s legs,’ and she offered to introduce me to him at a social dance that evening,” says Salomé.

The sadness is evident on her face as she pulls back the blanket from Gert’s legs to show how the muscles have wasted away.

Gert admits that he admired Salomé’s beauty when he first met her.

“We always believed we would die when we were old,” concludes Salomé. “If we have learned anything that we would like to share, it is that there is no promise of that. Make memories with your loved ones while you still can.”

This article was originally published here

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