Linda Hawkes has been a long time MS sufferer but loves to get ouside in the garden to keep busy.
Linda Hawkes has been a long time MS sufferer but loves to get ouside in the garden to keep busy. Warren Lynam

Institutionalised, incurable, but 'one of the lucky ones'

MISDIAGNOSIS, late-teens spent suffering and a stint in a psychiatric institution all tested Linda Hawkes, but she still considers herself one of the lucky ones.

The multiple sclerosis sufferer was eventually diagnosed in 2002 by a Brisbane neurologist with a family member with the condition.

But the struggle to get answers was enormous.

Losses of vision, speech, tingling and other symptoms caused the grandmother of eight to be pegged as neurotic and on the brink of a nervous breakdown.

She was placed in a psychiatric facility for a few weeks until the episode, which she later learnt had been a relapse of her MS, subsided.

Now 61, she lives in Buderim with her husband and carer.

She had to quit her job and moved away from her five children because she wanted them to live their own lives without what she considered the burden of caring for her.

She had to wait until she was 44 to learn she had relapse remitting MS.

But with advances in medicine and research, so far she's been able to stop the progression of her chronic disease.

She's had six major physical challenges in the past 17 years, among the many relapses.

Linda has had to learn how to walk again six times and spent nearly a year in a wheelchair around 2005.

"MS affects everybody differently," she said.

At the moment she doesn't require any aides but has had to use canes and walkers before.

She said it was tough when people abused her in mobility-friendly carparks, because she appeared to be okay.

Little did they understand that one of countless battles could be waging inside her body at the time.

 

Linda Hawkes has been a long time MS sufferer but loves to get ouside in the garden to keep busy.
Linda Hawkes has been a long time MS sufferer but loves to get ouside in the garden to keep busy. Warren Lynam

Nerve pain was severe, but thankfully countered with the six-monthly infusions she received at Sunshine Coast University Hospital to help ward off the progression of her incurable disease and hopefully stop the relapses.

"Anxiety is a big part of it too," she said.

"It's quite frightening, not knowing what it'll be like on any given day."

She said some days she had no option but to rest.

"It's like someone turned the power switch off and you lose all your energy," Linda said.

"It can be invisible, without a wheelchair and cane, but people judge you because they can't see what's going on inside."

She said she'd been mistaken for a drunk at Christmas time before, when in fact her body had gone into a spasm and her legs had stopped working.

But with the help of Sunshine Coast Hospital and Health Service neurologist Dr Antony Winkel, Linda has gone relapse-free for the past 15 months.

"To be honest, Dr Winkel's given me back some hope," she said.

She said Dr Winkel, along with her neurology clinical nurse consultant and MS infusion liaison Dawn Harwood, and GP Dr Roger Faint, had all been critical to her retaining her quality of life.

The former long-term Bank of Queensland worker now volunteers at Buderim Mountain State School, helping children with reading difficulties to improve their skills.

But it's a famous movie quote that she lives by.

"(It's like that movie Forrest Gump) life is like a box of chocolates, you never know what you're going to get," she said.

"You've got to use it (health) or lose it. If you can, just do as much as you can."

MS attacks the central nervous system and affects more than 25,600 people in Australia.

World MS Day on Thursday, May 30, was created to raise awareness of the disease and challenge common misconceptions about it and its sufferers.



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