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[back] Living with Parkinson's Sivaraman Kannan (The Star) - 9 April 2008

Living with Parkinson's

Having a positive spirit will help Parkinson's patients overcome daily setbacks.

YOU are already 63, what else do you want to do? Take the medication and rest at home. That was the advice I got seven years ago from a doctor and I never forgot it. Then, I was admitted to a hospital for a severe attack of vertigo. I did have slight tremors in my hands, which have been "kept under observation" in the past four to five years by doctors from another hospital.

While being treated for vertigo, the doctors observed the tremors and later diagnosed me as having Parkinson's Disease (PD). I was put under treatment but within a week, my condition deteriorated so badly that I was lethargic, drooling, hallucinating and could not move unassisted.

When I saw the doctor again and informed him about my condition, I was given that advice and told that there was no cure for PD and that I had to learn to live with it. I was not prepared to resign myself to this fate and fortunately, my wife saw an advertisement on traditional treatment. Having nothing to lose, we decided to give it a try. That was the best decision we have made for it gave me a second lease of life. My condition slowly improved after about six months. During a routine medical check up later, there were some doubts among the doctors if I ever had PD. If I had given up, I would have lost the joy of living and would probably be confined to a wheelchair feeling depressed, miserable and be a nuisance to all.

Now, every new day is a bonus and I make maximum utilisation of my second lease of life. I take an active part in the activities of the Malaysian Parkinson's Disease Association (MPDA). My aim is to get the hundreds of patients who are now leading a closeted life away from all social activities, to come out in the open and live life to the fullest. These are the activities I participated in last year, in order to live a "normal" life within my limitations:

Physical activity: Instead of physiotherapy, I walk briskly for about an hour daily in the morning after some stretching exercises. I then go to the Parkinson's Centre and help in the administrative work and also join the centre's activities. Though I am 70 years old and have had PD for 11 years now, I still drive to the centre almost daily. Climbing up stairs is a little difficult for me because of painful knees. Outdoor activities: I have participated twice in jungle trekking organised by Pet Positive at the Forest Research Institute of Malaysia (Frim) in Kepong, Selangor. Frim has taken a lot of trouble to set up a jungle walk for the disabled. This is ideal for nature-loving PD patients to enjoy the wonders of nature even with their limited mobility. MPDA has also organised an exciting outing to an orchard in Bukit Tinggi, Pahang.

Social activities: I take part in as many social events as possible, especially those involving patients suffering from movement disorders. These events enable the patients to enjoy themselves without feeling out of place. The management of Mid Valley City in Kuala Lumpur and their tenants have contributed tremendously towards these functions.

Computer work and photography: I still use the computer a lot for my e-mail and photography. However due to the tremors, I make many typing errors and this slows me down.

Due to the constant tremors, I have to modify my photography techniques or end up with many blurred shots. At the moment of triggering the shutter, I release my hold with the left hand. Even then, I still get about 20% of the shots blurred.

In conclusion, I would like to say that PD is a difficult disease to diagnose and treat. Doctors are human and they, too, can make mistakes.

Medication is supposed to make you better and not worse. Only you know your problems. Get a second, third or even a fourth opinion on your treatment until you feel better. Do not expect 100% recovery but you can and must try to live life to the fullest. Talk to other patients and see how they cope with their problems in their daily lives. Make the best of yours.

Retired engineer Sivaraman Kannan is vice-president of the Malaysian Parkinson's Disease Association.