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Living with multiple sclerosis – Independent Online

It’s International Multiple Sclerosis (MS) Month. Time to think about at least 155 known cases in KwaZulu-Natal of the incurable, debilitating disease that has baffled the medical world for more than a century.

“But we find references to new cases every second week,” said Dee Munks, who chairs the KwaZulu-Natal chapter of the Multiple Scle- rosis Society support network.

The former schoolteacher, whose advocate husband, Colin, was diagnosed with MS 38 years ago, came up with the idea of getting a reporter to experience some of the limitations imposed by life in a wheelchair.

She sat me in a wheelchair and strapped weights to my feet to give an idea what people like Colin’s legs feel like on any ordinary day as he goes around in a wheelchair, which he is usually confined to for up to 16 hours a day. Then she dispensed her gardening gloves on me to feel what it’s like to diminish the sense of feeling on the fingers.

Some facial gear came next: swimming goggles with the edge of the lenses smeared with Vaseline to make me see everything in a bit of a blur, affecting especially my peripheral vision.

However, Dee could not supply any way of feeling the shooting pain MS sufferers feel on the sides of their heads; nor the weak, headachy feeling I was lucky not to wake up with in the morning.

There was also little she could do about inflicting on me conditions MS sufferers: depression, a host of silent symptoms, frustration and financial strains resulting from the disease.

And so we headed off in her car for a morning at the Hillcrest Corner Centre.

First stop, the disabled parking zone. Luckily the car in the bay next door was a small sedan. The disabled parking bays were not the size we wished them to be, but there was room in the neighbouring bay for the wheelchair to stand ready to receive me as I lifted each of my “non-functioning” legs out the passenger door.

I used my arms and hands to pull myself up towards the top of the door and the roof of the car and then flopped into the wheelchair.

It was an easy landing, given that my backside is far more padded than that of the average MS sufferer.

Everything as far as the eye could see was a bit of a blur through the Vaseline-lined lenses. It looked as if the arcade was somewhere inside the Kings Park Pool, where I usually use my goggles.

I wondered what passers-by thought of this goggle-clad “disabled” person. I noticed that as I tried to make eye contact with one or two that their heads seemed to turn away. I couldn’t see their actual eyes through what MS sufferers call “MS fog” which many patients suffer from intermittently.

Other than those two points, Hillcrest Corner Centre proved pleasantly accommodating of this person masquerading as an MS sufferer.

At Bargain Books, assistant Hlengiwe Zuma went out of her way to clear obstacles such as books from a display that narrowed an aisle.

“You’re looking for a travel book on Cape Town?” she asked.

“Yes, one that gives an idea of where disabled people can go easily.”

I tried to browse through one of them but reading was as difficult as it would be under water.

Zuma flipped through a couple of books, apologising that the information I was after did not seem to be available. She offered to see what she could do about ordering a book that would help.

The aisles of The Crazy Shop next door were narrower. I navigated carefully so as not to bump the heavy stacks of goodies.

Then it was time to hit the supermarket.

Bran flakes were high up on a shelf in Checkers. I silently made a spectacle of myself battling to reach a packet. Within 15 seconds a shop assistant was there to help. Another helped me reach some yoghurt and went the extra mile by pointing out its sell-by date.

Later, once my real identity was disclosed to store manager James Myburgh, he told me of plans to put in a special till for the disabled, through which wheelchairs would be able to move easily. He also said staff were told to help people in wheelchairs with their shopping to get to the parking lot.

Dee spoke from first-hand knowledge about how carers of MS patients did their shopping on a “need to buy” basis.

“You cannot wander around. The patient gets tired, confused and often a little giddy.”

It was time to address the call of nature.

There are two loos for the disabled at the centre. The one I entered appeared to have everything I would expect of such a toilet: lots of space and a special rail to help me manoeuvre.

It took time and effort with “dead” legs, but I eventually got there.

What if I had been popping to go to the loo?

“With MS, when you’ve got to go to the loo, you’ve got to go immediately,” Dee explained.

“Many patients experience bladder issues and the frustrating thing is that disabled toilets are often occupied by able-bodied people, presenting the disabled person with a dilemma.”

It can’t be easy.

With us at the centre was Dhamarai Pillay, the MS Society’s auxiliary social worker, who explained that MS had huge financial implications.

“Families with sufferers often rely on relatives for help with rent and food,” she said.

“Often the sufferer was the breadwinner and the other spouse then becomes the full-time carer.”

The disease is most often first diagnosed between the ages of 20 and 40 and it’s mostly women who are diagnosed with it.

Nikki Robinson, 43, is a case in point.

“I was the main breadwinner before I was boarded. Everyone in my family was on my medical aid,” she said. “The whole thing has now shifted.”

According to Dee, most new medicines developed for MS were extremely expensive and not available to most patients. Monthly basic MS medicines range from between R9000 to R30000 a month.

“Some medical aids approve the treatment while others refuse outright.”

Then there is the range of side effects, including liver damage, increase of certain cancers, skin irritations, diarrhoea, blood pressure issues, viral infections of the brain and heart damage, said Dee.

Alternative therapies such as medicinal cannabis have proved popular.

“Unfortunately some of the suppliers are climbing on the band wagon and prices are escalating.”

Possible, but way out of reach for the majority of patients, is stem cell replacement.

Dee said MS could be accompanied by a host of other diseases including diabetes, fibromyalgia, epilepsy and Parkinsons.

“Sufferers often look normal on the outside but the body is throwing a fit on them inside,” Dee concluded.

Vaseline-lined swimming goggles, gloves, weights on the feet and a wheelchair seemed the tip of the MS iceberg. But it was a little taste of what the reality is of living with this incurable disease.

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Source: Living with multiple sclerosis – Independent Online


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