|[back] Inspiring Individual - Susie Chandy Anthony Thanasayan (The Star) - 6 April 2006|
World Parkinson's Disease (PD) Day will be observed on April 11, next Tuesday.
To try and better understand and bring attention to the effects of this insidious disease of the nervous system, Wheel Power will be focusing on it this month with stories from various angles.
All her daughters, except Rebecca (who makes her home in India), live in the same area. Susie stays with each of her daughters for three months at a stretch.
Unlike other PD patients who are able to communicate through speech, over the past three years PD has caused Susie to lose her voice, making it extremely difficult for her to communicate.
I had to ask Ann Marie, who is an assistant editor with StarTwo, for help in forwarding some of my questions to her mother as well as answer some of them on her behalf, for this interview.
How was it in the beginning when PD was diagnosed?
Ann Marie: It was a relative who is a psychiatrist who first suspected that mum had PD which was confirmed by a neurologist a year later.
Nothing was noticeable in the first few years. Mum was able to teach, look after the grandchildren and do things normally.
However, she finally quit teaching after she and her students started noticing her frequent episodes of having a mental block that interrupted her sessions.
Mum never stopped travelling overseas, however. Her last trip was to Melbourne last December to visit some relatives.
What was hard for Mum to accept was the fact that she was beginning to develop a growing dependence on others every time she wanted to do something or go somewhere.
She also started having frequent falls (some resulting in head injuries) because of her inability to balance herself.
Finally it was decided by the doctors that she needed a walking aid and special care, and could not live alone.
How is your mum now?
My mother's condition has worsened. She now has problems with chewing, swallowing, brushing her teeth, sleeping - even smiling! Every activity has become a difficult challenge for her.
She can only walk a short distance, with the maid's help. Despite this, however, she tries to attend the PD support group meetings at Pantai Hospital in Kuala Lumpur each month.
My mother also goes, rain or shine, to church every Sunday, and Bible classes on Wednesdays. One of us will have to take her there along with Sulasteri, her Indonesian caregiver and maid who sits with her throughout the activities.
How has your mum's condition affected your family?
It was hard for all of us to see how PD was slowly affecting Mummy: she looked and behaved much the same but, bit by bit, her movements were changing.
I was most scared when she had her first fall and needed stitches on her head and was hospitalised for a couple of days.
It's heartbreaking now for us to watch her struggle to lift a spoonful of rice into her mouth or just to take one small step. But Mummy has never given up trying. She has been a source of strength for all of us.
Her zest for life also comes from having a lot of help she gets from Sulasteri and many relatives and friends who drop by to visit and keep her spirits high.
What can society do to help people like your mother?
Please don't stare at someone in a wheelchair because they are not crazy, neither are their caregivers. Try coming up and giving us a hand if you see us struggling up a curb, etc.
Please keep in mind that a trip outside the house for someone with PD - even if it's just a walk around the neighbourhood - is extremely therapeutic for the sufferer.
Massaging the hands and feet (because they are always painful), or giving a pedicure for my mother, painting her nails, or washing her hair is something she relishes.
Music and movies also often elevate my mother's spirits when she is down.
Equipment that helps PD sufferers are not easily available in Malaysia such as cutlery and cups that make eating/drinking easier, railings to help my mum balance herself in the bathroom, or special taps that are not so difficult to turn on and off.
We're trying now to find a keyboard (with big keys and are touch-sensitive) into which my mother can type in words so that we can communicate with her more easily.
Although mum cannot speak most of the time, her mind is still alert.
Even though she is unable to read the Bible now, she continues to be full of faith and never fails to ask God each day to help her take things one day at a time.