|[back] Long hard journey The Star - 10 April 2008|
Long hard journey
WHEEL POWER WITH ANTHONY THANASAYAN
A Parkinson patient's legacy of strength and courage
TOMORROW is World Parkinson's Day. To commemorate the occasion, here is an account of Susie Chandy's battle with the condition for over a decade.
Her moving story is told by one of her caregiver daughters, Ann Marie, who is Entertainment Editor at The Star.
The late Mrs Susie Chandy and her family members participated regularly in activities organized by the Malaysian Parkinsonís Disease Association. Anne Marie is standing on the left.
"My mum's passing away (on Feb 5) set her free from her frail and ailing body,"wrote Ann Marie.
"It had been a long and difficult journey for both my mother and my family since she was diagnosed with Parkinson's disease (PD) in 1993. Few people then knew about PD and often mistook it for Alzheimer's disease. PD, we later discovered, is a degenerative disorder of the central nervous system that often impairs the sufferer's motor skills and speech."
There were changes in Susie Chandy's posture, appearance and gait.
"Mum had a 'glazed' look on her face at first. Later, she began freezing up - she would sit down and get locked in that position; she also experienced 'mental freezes',"she explained.
Because of this, Susie Chandy was forced to give up her teaching job. It was a terrible blow for her.
"Mum started falling frequently, her speech became slurred and she was drooling all the time,"she added.
"Aches in her hands and feet soon followed and she could not sleep. Her fingers and toes began curling up, her happy face lost its form and she even stopped being able to chew and swallow."
During the last year and a half, the most dramatic changes took place in Susie Chandy's life.
"Mum - once an independent, vibrant, strong and bold woman - lost her ability to walk, talk and eat,"Ann Marie wrote.
"With most cases of PD, the condition progresses slowly and this gives patients time to adjust. However, in my mother's case, the disease advanced much faster."
Ann Marie said the family only recently discovered that their mum was afflicted with a Parkinson-plus syndrome - one of a number of types and features associated with PD. Parkinson-plus syndromes progress more rapidly and are less likely to respond to anti-parkinsonian drugs.
This meant that the medication that Susie Chandy had been taking for more than a decade may not have helped her at all.
"The final years of Mum's life were extra difficult,"recalled Ann Marie. "Although she was mentally alert, it was hard for her to communicate her thoughts and feelings to her four daughters and a string of volunteers who painstakingly looked after her.
"The frustration was tremendous. There were many arguments as to how best to care for my mum, there was a lot of depression, and I have many regrets because in retrospect I think I didn't understand my mother's condition as well as I could have.
"In the early days, I always felt that if my mother tried hard enough and coupled with a positive attitude and willpower, she could overcome the affliction. I was wrong."
Ann Marie points out, however, that in the end it was her large family comprising her siblings, daughters, cousins, aunts and uncles, together with a dedicated medical team which included a neurologist, and physio and occupational therapists that kept Susie Chandy's spirits up.
"As for Mum, she never gave up. After being diagnosed, my mother continued teaching for as long as she could, cared for her grandchildren and even travelled to many places (Australia, India, Ireland, New Zealand).
"She also wrote a book about her life, attended the Malaysian Parkinson's Disease Association meetings and went to church every Sunday in a wheelchair, with a riles tube sticking out of her nose.
"As much as she could, Mum insisted on going out - for a walk in the park, for a meal in a restaurant, out to shop in the mall, or overseas for a holiday. She wanted as many people as she could to know that she had PD."
Susie Chandy was never shy about her condition.
"She wanted everyone to learn more about the disease and be aware of other sufferers,"said Ann Marie. "She never stayed at home and moped. Although she was depressed often, she never threw in the towel. She sang, she laughed, she played and she prayed every day of her life. And she was a testament of courage and strength to many who knew her."