The doctor’s words hung dead in the air - “You have Parkinson’s Disease.” No warning, no preparation. Just a sentence : a life-long sentence. I had no idea about what he was talking about and stared at him in numbness. And the doctor kept silent and scribbled something in my medical file. That was the beginning of this journey that I have traveled for the past 12 years.
The doctor who diagnosed me did not tell me very much about my illness. So I started reading up about Parkinson’s disease on my own. The more I read, the more I realized how much my life was going to be affected by it. Yet I still had no definite feelings about it. Was I in a state of denial? Possibly.
In 1993, I went to visit my son who lived in the US. I joined a support group over there - the Eisenhower Parkinson Support Group. After attending several meetings, I began to be aware of feelings that I never knew before. Being with the group made me realize that I was not the only one afflicted with the disease and its limitations - I was not alone in my struggle against this illness. It also made me aware that I could go out and not to be ashamed of my disease - that the fear was merely in the mind. It was also a light-bulb moment for me, that we should know how much a support group meant to patients living in a society that was still oblivious to the existence of this debilitating disease. It was then that I was inspired to start a group in Malaysia. I felt that a support group could give inspirational support to the patients and perhaps more in the future. With further information from Ms Riley, the Coordinator of the Eisenhower Parkinson Support Group, I was now armed with information on how to establish a local support group.
After a few months, I came back to Malaysia. A golden opportunity presented itself - in the form of a newspaper article! It described the disease and the patients and listed a contact number for people who wished to get together to discuss this disease. I promptly contacted Mr Wong Twee Jin whose name was mentioned in that article. Subsequently, we got together to have an initial discussion on Parkinson’s Disease and the possibility of forming a support group here in Malaysia. Discussions ensued and before long, the first meeting was held at Mr Leong’s house in PJ.
With the knowledge gained through my experience in the US, I led the group, going through many meetings and trips to the registrar to form the society. Preparing the constitution and getting it registered as a non-profit NGO (Non-Government Organization) itself took several months. We faced many struggles, from the simplest to the most difficult, including typing when my motor-skills were starting to deteriorate. Funds were basically non-existent - just imagine how difficult it is to start an organization without financial support!
We were finally registered in September 1994 - Persatuan Parkinson Selangor dan Wilayah Persekutuan.
That was 9 years ago. Today, in 2003, and in the advanced stages of Parkinson Disease, I face difficulties in my daily activities. Walking is extremely slow and laborious (as with many of you!) and eating is challenging - I find it hard to hold my head up and bring the food to my mouth. Even sitting up straight is something I cannot take for granted as my spinal cord is now severely curved. Exercises of stretching and balancing on the ball are now part of my daily regime.
My caregiver, my wife, has been the staff of my journey thus far. The dedication and devotion she has shown over the years goes far beyond the expectations of any wife, and for her efforts, I will always be grateful.
I served my last year as President of the association in 1996. I formally stepped down as my condition had deteriorated to the point that I felt the duties and responsibilities should be carried out by someone whose abilities were not as impaired.
It is my desire that the association will continue to flourish to give hope and inspiration to its members, old and new, and eventually have a building of its own. It is my dream that there will be ample books and reading material there as well as exercise equipment for the betterment of its members. We may not be able to lead “normal” lives, but we can surely make good with the rest of it!
Like I once read “It’s not the destination, but the journey that matters.”