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Gaynor

3 MS sufferers' stories & views

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Gaynor

This account from 3 MS sufferers was very true to read and I thought a good talking point, should anyone wish to discuss their thoughts and feelings further on MS and how we're looked at by others.

 

Its from: http://www.abc.net.au/queensland/conversat...32.htm?brisbane

 

You can also listen to the related audio by viewing the above page.

 

 

 

Living with multiple sclerosis

Last Update: Thursday, June 7, 2007. 1:47pm AEST

 

Multiple sclerosis creeps up on sufferers initially, affecting them with pins and needles, or extreme tiredness or balance problems, but in its extreme cases it can cause partial or complete paralysis. No-one knows what causes MS, or what brings on a relapse - even whether it's genetic or environmental. Around 15,000 Australians are living with MS, and Sarah Ross-Smith, Mike Hemmingway and Fiona Hall are three of them.

 

Often it's hard to tell when someone is suffering from MS. "We talk a lot about it being invisible and for a lot of us there is pressure when you're just involved in your everyday life," says Mike. "You know people can't see that you're unwell, even though you might feel absolutely shocking. People will say to you, very well-meaningly, 'You look great!' It doesn't make you feel great."

 

Sarah had similar experiences, until she got a walker. "[Then] the penny dropped with a whole range of people - it was suddenly like, oh yes, she really does have MS, doesn't she? And the walking stick's very useful in meetings when people aren't paying attention!" she laughs.

 

"I'm getting into the habit of poking young boys on buses when they don't stand up!" adds Fiona.

 

MS does take control of sufferers' bodies. "I sometimes feel my brain is like a television screen when it's got static," says Fiona, "or you put a metal dish into a microwave and you get that sparking...You watch your body jerk off in a direction and you think, oh, how did that happen?"

 

"You can't rely on your body any more," explains Sarah. "I crossed the road once and started having some weird kind of attack and I had to sit in the middle of the road."

 

Mike agrees. "Often it is little things. It can be as big as walking or it can be the fact that you're at home and you can't pick something up, or you drop it, or you lose a word, like ''chicken', that you know... but it's just not going to come out!"

 

It can be very difficult on sufferers' children. "It's hard to explain what's going on when you don't actually know yourself. They want to know why has this happened and you can't tell them that... As my kids have got older, they've become more accepting of it," says Mike.

 

"My son was only two when I was first diagnosed, "adds Sarah. "After a while, he quite enjoyed it because he got to ride around on the walker and thought that was great... He actually said to me, 'When I grow up and get MS I'm going to use your walker,' but we went through a period where he was concerned he was going to catch it from me, that it was a contagious disease ... He wouldn't let me put on his socks or help him dress."

 

Currently, scientists are no closer to finding a cure for MS. "It's not fashionable, dear," says Fiona bluntly. "With MS you can twitch and spasm and that makes people uncomfortable."

 

"I think also because it doesn't have a high fatality rate, it's not necessarily been a research priority," says Sarah. "It's not a disease that typically affects children so again, there's not a research priority placed on it."

 

Sarah Ross-Smith, Mike Hemmingway and Fiona Hall

 

 

 

Gaynor

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