|[back] Parkinson Patient celebrates Golden Wedding Anniversary Winston Fernandez - 24 November 2007|
|12 May 2007
"We have to teach the public that the moment they have tremors, they have to think about PD," - Dr Chew Nee Kong at the Red Tulip Campaign on World Parkinson's Disease Day.*
I recall my father, Hermin Fernandez, his booming voice resonating around the living room hall, laughing into the mouthpiece of the telephone. The way the receiver shook drew my mother's attention to the tremors in my Dad's right hand.
He was then aged 60 but still retained the youthful ebullience that had captivated my mother during their marriage. Although Dad dismissed the tremors as nothing serious, my brother-in-law, who is a medical doctor, sensed something far more disturbing.
He insisted that my father be referred to a neurologist. The neurologist's tests indicated that Dad was suffering from Parkinson's disease. We didn't understand at the time exactly what that diagnosis entailed. But as the tapestry of life unfolded its sometimes bitter chapters in the following 18 years, PD permeated every facet of our life with Dad.
With the exception of my brother-in-law, none of our family members were aware of what the prognosis was for individuals with PD. There was not much literature available then for the lay person to acquire knowledge and the long term effects of the symptoms of PD. Nothing prepared us to deal with Dad's inexplicable worsening physical condition.
At the onset of PD, Dad appeared his usual gregarious self when we sought his opinion and advice on family matters. It seemed very fashionable for me to tell my friends that my father suffered from Parkinson's disease. I attracted new friends quickly, clamouring to be seen with the guy who's Dad had PD.
As the years progressed, Dad's robustness steadily deteriorated. In the beginning, when Dad came to visit me from Johor Bahru, he could walk twice round the 9 hole golf course. At 65, his walking was reduced to 1 round. A year later, he could manage only the grounds of my condominium.
Some time afterwards, he would be able to shuffle along just the corridors. And now, Dad only walks inside the four walls of the house and in the garden. The tremors that jerked his arms and the stiffness in his legs has somewhat reduced his mobility. The strong contours of his face gradually lacked expression. He never complained about his disease or how it affected him. But PD affected the rest of us. There were times when my mum had to hold the crockery and cutlery so that food and drink would not spill.
My mother had always lived in Dad's shadow. Although her five children pitched in, mum was the main care giver. We could sense her frustration at seeing her husband and father of her five children reduced to such a dependant state. But her network of close friends lent her much needed moral and emotional support.
PD posed restrictions on Dad's ability to consume his daily meals. Meals became a chore as Dad found difficulties in swallowing. He learned to eat slowly, chewing his food with great care. We experimented with different medication to get the combination right to improve his quality of life.
PD had not made Dad an invalid but it had "crippled" him somewhat. The stiffness in his limbs was a grim reminder of the insidious nature of the disease. The "on" and "off" periods disrupted his routines that we often take for granted. Dad needs two hours to get ready for church because he can't button his shirt quickly. And he takes 20 minutes to walk 2 metres to the car.
One evening, Dad went out for a walk in the garden. All of a sudden he started making unsubstantiated accusations against my mum and caused a scene. Family members rushed and calmed him. This "drama" was a wake-up call for my siblings and me to re-assess our commitment to our beloved father. None of us knew how to deal with his hallucinations. We took him to a psychiatrist.
In the following months, his hallucinations were accompanied by worrying bouts of hysteria that forced us to employ a full time maid to care for Dad. We pooled our resources to combat the escalating financial costs of care and medication.
In spite of these traumas, we consider my father's PD as being "under control" in comparison to other patients. He doesn't talk as much now as he used to. His speech is slurred and he sometimes has difficulties articulating his thoughts. His quiet demeanour belies the obvious sharpness of his mind. His reduced mobility forces him to sit or lie down for much longer periods than before. He occupies his time with watching TV, reading the papers and doing his morning walks. Dad still visits friends and entertains them at home.
The agony of PD does not preclude an enjoyment of life with its many blessings. My parents recently celebrated their Golden Wedding Anniversary in December 2006. At the behest of our vast network of relatives, they flew to India to celebrate again in January 2007. In spite of his PD, Dad participated fully at these rambunctious celebrations much to the delight of his raucous grand children. I witnessed the joy in my mother's face as she watched Dad's exuberance. The poignancy of Dad's condition underscored the message that this dreadful disease can be surmounted. The abundant joys of life can be experienced regardless of the debilitating effects of PD. Our dad lives life to the fullest. His indefatigable will to face the challenges of his disease is testimony to the fact that life with PD will never be dull.