#YourStory – Living with MS

"It's the luck of the draw, some people don't relapse their whole life."

Patricia Brown, who has been living with Multiple Sclerosis for the past 30 years.

Multiple Sclerosis (MS) is a disabling disease that affects the central nervous system within the individual and prevents communication from the brain to the rest of the body.

Across the world, over 2.5 million people suffer from this disease, which only recently has been found to be possibly treatable.

According to Multiple Sclerosis South Africa, MS is one one of the most common diseases of the central nervous system.

Symptoms of MS disease range from numbness and tingling, to blindness and paralysis.

Patricia Brown, from the Eden Haven Retirement Village, is one of the 2.5 million MS sufferers. Patricia, now 69 years old, was diagnosed when she was 39 years old.

She used to work full-time but started noticing numbness in her mouth after going to the dentist, which resulted in nothing.

Patricia went to a cranial specialist but was referred to a neurologist where after tests she was told that she had Multiple Sclerosis.

Her initial reaction to the diagnoses was to ask, “What is that?”

She had no idea what MS was and Patricia thought she would be able to live with the disease .

However, after three months Patricia suffered a relapse (a flare up of new damage that occurred on the brain or spinal cord) where she couldn’t pick up her feet and had to shuffle.

At the time, Patricia was still able to look after herself and still worked full-time. She began to receive treatment in an attempt to help her, but the cortisone treatment only helped her in the short-term.

“I was still able to drive my car,” she said, but after time Patricia could not manage working and tried doing a few temporary jobs. She eventually had to give this up as a result of the disease.

Bound to a wheelchair and once she had given up work, Patricia needed a full-time nurse to look after her.

With the help of her nurse and her late husband, who designed and made hoist systems to make her life easier, Patricia was able to live as normally as she could.

After some time, Patricia’s house was sold due to a lack of income. Following the sale of her house, she moved into Eden Haven in May last year.

She said it was easier at home, but at Eden Haven, “The treatment is very good and if anything is needed they always accommodate.”

Currently, Patricia’s MS has left her confined to bed, in frail care, and paralysed to a degree. She only has some mobility in her left arm, her neck and her head.

“There is not a hell of a lot anyone can do,” she said.

“It’s the luck of the draw. Some people don’t relapse their whole life,” she said.

According to Patricia, more awareness is needed.

“Only recently, in 2016, was a glimmer of hope discovered on the road to a cure for MS through the use of stem cells. Despite this, more needs to be done to inform individuals and help them understand what the disease is and the severity of it,” she said.

If more awareness is made, Patricia hopes that people will know what the disease is and won’t ask “so what’s that ?” like she did 30 years ago.

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