|[back] Personal Experience At The 2nd International Symposium Of The APPDA, Japan Chee Liew Seong - 4 October 1999|
PERSONAL EXPERIENCE AT THE 2ND INTERNATIONAL SYMPOSIUM OF THE ASIAN PACIFIC PARKINSON'S DISEASE ASSOCIATION , HELD ON OCTOBER 4 - 6, 1999, AT THE SHERATON GRANDE TOKYO BAY HOTEL, MAIHAMA, JAPAN.
The 2nd International Symposium of the Asian Pacific Parkinson's Disease Association (APPDA) was held at Sheraton Grande Tokyo Bay Hotel, Maihama, Japan from October 4 - 6, 1999. About 750 participants from 20 countries attended the Symposium. Out of these, more than 600 were Parkinson's Disease patients and their caregivers or accompanied persons. The 10-member Malaysia contingent consists of six officer bearers of the Malaysian Parkinson's Disease Association (MPDA), and two medical doctors and their wives.
To healthy people, overseas traveling is perhaps no big deal. But to me, a patient, it was a big challenge especially when I had to travel without my wife or other family members to accompany me - they could not leave their work or studies during this period. I was at a dilemma whether to go or not to go. Although my wife was supportive, I knew she worried about my safety - that I might fall while walking up and down at unfamiliar places, fall sick, lose my way, miss my flights ... and many other imaginable mishaps.
During the last Committee Meeting on July 15, I expressed my worries and intended to withdraw from the team. My withdrawal would also enable the remaining team members to have bigger share of the limited subsidy promised by the Japanese Organizers. On hearing this, our Chairman, Dato' Ismail Mansor told me not to worry, as all other team members would help to take good care of me. "It is important for you to attend" he added, "As a patient, you will have better understanding and different feelings of what will be presented and discussed at the Symposium. Moreover, you are representing all other People with Parkinson in our association.". The other office bearers echoed the Chairman's view. They assured me that they would take good care of me. Before leaving for Japan, Ms.Sara Lew, the Secretary came to my house and told my wife not to worry. "Mr Chee will have five caregivers and a medical doctor who will travel together with us," said Ms. Lew.
My last trip overseas (to England, on official duties) was in 1995, the year that I was diagnosed of having Parkinson's disease. I was healthier and younger then, people could hardly recognize the mild symptoms that I had. But by this time, my condition was not the same anymore, as the disease in me had progressed. Although I could still take care of myself in my daily life, I would certainly need somebody to be around during my trip. Nevertheless, I reminded myself that I had to be as independent as possible. The most important thing was that I must be fit. With this in mind, I had increased my morning exercises to include walking longer distance every morning two weeks before the trip. The extra exercises indeed had increased my stamina and speed in walking. The other necessary preparations were bringing sufficient supply of medicine, food such as instant noodle and biscuits, warm clothing and many other things that I might need. At the end I carried with me a rather big baggage for a short trip of four days.
Now that I have returned home safe and sound, I must express my heartfelt thanks to all my team mates who really did what they pleaded, as if they were taking care of their own parents or their loved ones who are. Dr. S'ng and wife who traveled together with us in the same flights also showed their concern and asked me how I felt from time, to time. Throughout the journey, while attending symposium sessions, special functions and making short visits to Tokyo, I found myself stronger than expected. I needed only ordinary assistance such as helping to carry my baggage, buying train tickets and kept an eye on me or waited for me when I was left behind. I was fortunate too during our visit to Tokyo after the Symposium, there was a doctor from Pakistan who joined our group. Although I did not require medical attention, a doctor around had definitely boasted my sense of security and confidence.
Some participants, whom I had met, commented that I didn't look like a patient to them. I told them that perhaps I was still at the earlier stages of the disease. I noticed that most patient at the Symposium were at more advanced stage than I. a large number of them were either dyskinesia (involuntary body movement). In comparison, I think I have been very fortunate; up to now the disease in me has been progressing very slowly. Dr. Shaukat Ali told me that I might be one of those whose conditions remained stable for many years. He disclosed that some of his patients needed only a single dose of Levodopa a day for many years, and their conditions seemed to remain constant. I hope what he said would come true in my case.
The organization and conduct of the Symposium was simply superb. All sessions began and ended on time. Everyone was provided with a receiver to listen to either English or Japanese (translated simultaneously). All the needs of the participants were well taken care of. For transport, they had arranged officials and volunteers to station at the airport, train and bus stations to help participants to find their ways to various destinations. At the venue of the Symposium, there were nurses on duty and there was a special resting room for patients. I also noticed that some Japanese patients were wearing surgical masks, either to protect themselves from infection or not to spread viruses if they themselves were already infected. This practice is indeed a good example that should be emulated by all. Such preventive measure is particularly important to PD patients as any virus infection can lead to severe complications.
At the Symposium and during social functions, there was no racial, class, national or cultural barriers. Doctors, patient, caregivers and others mixed freely and talked about common topics or shared experiences with each other. The patients displayed all types of PD symptoms you can name it - tremor, bradykinesia, dyskinesia, stooped posture, rigidity, speech difficulties and so on. But there was no embarassment at all. While talking to the Japanese patients, there were some communication problems as most of them could not converse in English. However, when you mention 'L-dopa'. 'Sinemet', 'Madopar', 'Selegiline'. 'Dopamine Agonists', etc. their eyes would immediately brighten up, and then with the help of sign language, we could communicate with each other quite well.
Many people with Parkinson I met had suffered from PD for more than ten years, and the President of the Japanese Parkinson's Disease Association, Mr. Tomio Baba, 22 years. I noticed that they seemed to share some common characteristics - a positive mind-set, optimistic, facing challenges with confidence, enthusiastic towards life, continued working and to take part in social activities. Also, they all seemed to have caring and supportive caregivers/family members.
No one could miss the sight of a particular Japanese Patient whose body 'dance' endlessly even when he was sitting down. He probably had sever dyskinesia or chorea. On banquet night he approached us at our table. I asked whether he was still working. Though his spoken English was difficult to comprehend, he told us that he was still working as a businessman - his company imported Malaysian products and sold in Japan. To him and many others like him, there is definitely life after Parkinson's. During the session of the symposium, he was the co-chairman of the final session presented by Mr. Tomio Baba, on "Educational Activities of Japanese Parkinson's Disease Association". While Mr. Baba had to sit down after a few minutes to continue with his presentation, the co-chairman's body continued 'dancing'. No one was amused, instead the audience showed their respect by giving them a big round of applause.
The Malaysia delegates enjoyed VIP treatment throughout the symposium. We must thank Professor Yoshikuni Mizuno and his colleagues for their generosity and hospitality extended to us. By attending this symposium, I have gained not only much new knowledge and information about the disease, but also greater hope, encouragement and friendship across national and cultural boundaries. In fact, I am now looking forward to attend the 3rd Symposium in Hong Kong in 2001. to make this hope a reality, I have to start saving and work hard to keep fit and stay as healthy as possible - in other words, to fight Parkinson's with courage and determination. I sincerely invite all interested People with Parkinson friends to join me - destination Hong Kong 2001.
From this symposium, we know that scientists in Japan, USA, Europe and other countries are working very hard to find out the causes of the disease, to experiment new methods of treatment and to develop better medicine, we definitely see light at the other end of the tunnel. A cure for the disease is likely to be discovered by next decade, hopefully at the beginning of the new millennium.