Living with multiple sclerosis


Dr Azura, second from right, with multiple sclerosis patients. Photo: Anthony Thanasayan

By ANTHONY THANASAYAN

I was recently introduced to Dr Azura Mohd Affandi, a consultant dermatologist from Hospital Kuala Lumpur.

Dr Azura told me the family had consulted several neurologists before her mum was finally diagnosed with primary progressive multiple sclerosis when she was 40. The family has been coping with the disease for the past 18 years.

“I can see the decline in my mum’s physical activity through the years. Initially she walked with a limp, then she started using a single walking stick, and later, a tripod walking stick and a walking frame. Now she is wheelchair bound,” said Dr Azura, a committee member of the Multiple Sclerosis Society Malaysia.

“She is unable to use her hands, and needs someone to push her wheelchair. She has difficulty passing urine and needs a urinary catheter.”

Dr Azura pointed out that her mum experienced bouts of neuropathic pain on and off. Although painkillers helped to ease the pain, as a family they sometimes felt helpless, and wished they could do more to ease her pain.

“My mum needs help with routine tasks. We are very fortunate to have a dad who is very patient. He has been taking care of my mum since she was diagnosed with MS,” said Dr Azura.

“Dad is our pillar of support and we are very grateful for all the help he has given. My siblings and I live nearby, and we take turns to look after Mum from time to time. It is difficult juggling a career and family, but somehow we managed.”

Dr Azura’s mum enjoyed cooking during her younger days. She even conducted cooking classes, and was well known for her passion for cooking. Nowadays, however, she can only watch and guide her husband and children in the kitchen.

“Of course, it’s never the same as Mum’s cooking but she never complains and always compliments our efforts.”

Dr Azura is happy her mum did not just give up upon learning that she has multiple sclerosis. Instead, she made it a point to meet up with people who are living with the condition to share experiences with each other. She felt that by speaking to someone in the same shoes, it would give her new ideas on how to tackle multiple sclerosis through another patient’s perspective.

“Mum soon joined the Multiple Sclerosis Society Malaysia in Petaling Jaya and we got to know a small family of multiple sclerosis patients. There were only a few members in the early days. Mum attended most of the events organised by the society; she loved the company of her MS friends.”

Dr Azura used to take her mum to the meetings. Then last year, she was elected into the committee.

Last May, the society organised MS Walk 2015 to create awareness of multiple sclerosis. It was held in Sunway University.

Multiple sclerosis is a chronic inflammatory disease of the central nervous system. It usually affects young patients. Although the disease is not common in Malaysia, it is one of the major causes of disability among young patients who are at the peak of their career.

Patients experience fatigue and since the relapses are unpredictable, they have no control over their lives.

 

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