By SIVARAMAN KANNAN
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.
WORLD Parkinson’s Day is celebrated on April 11, the birthday of Sir James Parkinson who discovered the ailment.
PD occurs when certain nerve cells (neurons) in a part of the brain called the substantia nigra die or become impaired. These cells produce a vital chemical known as dopamine which allows the smooth, co-ordinated function of the body’s muscles and movement.
As PD affects both the physical and emotional well-being of patients, there is a need to acknowledge the presence of the disease and continue with the daily routine of life. A positive spirit is vital for patients to overcome low self-esteem that results from disabilities that eventually set in. While caregivers play an important role in caring and facilitating the needs of PD patients, they themselves need to take charge in order to have a decent quality of life.
The Malaysian Parkinson’s Disease Association (MPDA) will celebrate World Parkinson’s Day this Saturday at Padang Astaka, Section 14, Petaling Jaya, Selangor. This year's theme is Living with Parkinson’s Disease – Cultivating a Soaring Spirit.
Activities lined up for the event from 8am to noon include line dancing, magic shows and singing sessions. The highlight will be hot air balloon rides, providing patients the opportunity to try new experiences.
MPDA has 600 members consisting of patients, caregivers and volunteers. Among its activities are: monthly support group meetings which incorporate medical and healthcare talks; telephone counselling; lectures at Pantai Medical Centre (Jalan Pantai Baru, Kuala Lumpur); physical exercises such as taichi and qigong; demonstration/practice in physiotherapy and occupational therapy; and outdoor trips. Its quarterly Berita Parkinson informs members on new developments in the management of PD.
It also runs the Parkinson Centre (35, Jalan Nyaman 10, Happy Garden, Kuala Lumpur) to provide a venue for patients and caregivers to share experience and knowledge. The centre has a gymnasium for patients to undergo physiotherapy and rehabilitation, as well as a library. Activities such as vocal training, exercises and handicraft programmes are conducted for the well-being of patients. The centre is funded by donations.
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