'We are ticking things off a bucket list'

2015-11-18 11:28
Deon Nel (Supplied)

Deon Nel (Supplied)

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Johannesburg - Deon Nel, who has been diagnosed with Motor Neuron Disease (MND), wants to see the ocean again and his wife Bernice Nel is hoping to make this a reality soon.

“He has a bucket list and we have already started ticking things off,” Bernice Nel says.

In 2004, Nel was diagnosed with amyotrophic lateral sclerosis which is the most common type of MND. He was 45 at the time and was given a prognosis of two to five years. Eleven years later, he is still holding on, refusing to give in.

His wife explains that they knew something was wrong when her husband had trouble swallowing and choked on his own saliva after a standard dental procedure.

He also struggled to form words.

“We had no idea what was wrong and found out only a year later that the cause of all of this was ALS-MND, the same disease as Joost van der Westhuizen," she explains.


 Her husband has been mechanically ventilated and fed through a peg tube since 2008.

"We have chosen technology as his cure till a cure for MND is found... or we would have lost him...” says Bernice Nel.

           Deon and Bernice before the disease struck. (Photo supplied)

He communicates via a special computer he controls with his eyes but due to an eye infection during the last few months, he has been unable to look at the screen to communicate.

Before his illness, Nel was an outdoor person who coached school soccer, and loved watersports and quad bike riding.

“Deon can move just his eyes now.  This disease may have stolen his body but not his soul.  He has a fighting spirit and wants to live no matter what, no white flags ever,” explains Bernice Nel.

“Three blinks means I love you”.

And he says it often, she adds.

A few weeks ago, he was able to add another tick to his list – a visit to Silver Star Casino.  Although the trip is just a 10-minute drive from the Nels' Krugersdorp home, the logistics took weeks of intense planning.

 A small inverter (power source) had to be set up in the Nels' old VW kombi to keep his life support equipment fully charged during transit. Bernice joked that the kombi looked like an old ice-cream van.

Emergency equipment

Arrangements were then made for a back-up ventilator, emergency medication in case of seizures and a back-up suction unit to drain mucous from his lungs.

Her husband's power wheel chair is like a mini ICU with all life support equipment attached, but it can’t venture too far in case the battery life fails.

“I packed almost double of everything for just in case,” Bernice Nel said.

Before that actual day, they had to have a practice run where they moved Deon Nel from his bed to the wheel chair.

A special ramp had to be made for him to get out of the bedroom as his wheel chair became heavy with all the life support equipment and the oxygen cylinder.

The big day arrived on November 7.

“Only having eye movement, he is limited to eye language and facial expressions. When we arrived at the casino his face lit up with a smile.  I asked, ‘Are you enjoying this?’  He blinked yes,” Bernice Nel said, adding that although they could not do much else, they just wanted to be able to go out for something to drink.

“The visit to the casino was a start. Once we have an inverter on Deon’s power wheelchair and one in his transport van, we can travel longer distances.”

The Nels now hope they will be able to go to KwaZulu-Natal just to see the ocean and also to Warmbaths in Limpopo. Although Deon Nel won’t be able to swim, all he wants to do is to be placed at a spot so that he can watch people. But this too will take a lot of planning and money.

“ALS-MND does not have to be a life sentence. I would love to share with people how we have coped over the last 11 years. We want to give hope to people that this does not need to be a death sentence.”

Read more on:    johannesburg  |  health

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