It all started on a summer day in 1989 (I was 64) when I arrived at Narita Airport in Tokyo. I was to join my wife, who had recently accepted an official Israeli post in Japan.
In order to get medical insurance, I was instructed to visit the 'Tokyo Clinic' where a young German doctor interviewed me and asked many questions about my medical history. I told him about the pain in my left shoulder which I attributed to the very long flight the previous day. Towards the end of our meeting, he shot the question at me: "Why don't you tell me about your Parkinson disease?" Me, have Parkinson’s? Impossible! What is Parkinson’s? He explained that he based his diagnosis on the way I had walked into his office and the pain and stiffness in my shoulder. His diagnosis was confirmed later by a well known neurologist. I was in shock. Being in Japan, I had nobody to share my feelings, fears and helplessness with.
My family supported me as much as they could but they, too, had no knowledge of Parkinson’s and feared what the future would bring. These feelings were compounded by the lack of communication, the language problem and the fact that you don't discuss your illness with the 'Sensei' - the doctor who treats you. Their attitude is simply, "Keep taking the pills and come back in three months".
Returning home to Jerusalem after five years in the Far East, I discovered that the state of the people with Parkinson’s there was not much better. Every family of somebody with Parkinson’s kept it to themselves. The symptoms of denial and helplessness were the same with everyone I met.
I felt I needed to do something, not only for them but also for me. There was a great need for support groups, meetings for people with Parkinson’s and their carers where they could listen to lectures from experts in the medical field; the main task being to make them aware that they were not alone and did not have to live in isolation. I found similar groups and individuals in other cities who thought the same.
With the inestimable help of some members of the medical profession and the determination of friends and supporters we managed to establish the Israel Parkinson’s Association as a national organisation. Having Parkinson’s I realised that my relationships were changing. Friendships from the past altered, people I had worked with cooled. I approached some of them who were very wealthy asking for their financial help to run the Association. But none answered my appeal. So I found a new circle of friends, most of them connected in one way or another to Parkinson’s. Every day posed a new challenge and gave me a reason to get up in the morning.
The activities did me a lot of good and I believe I managed to slow down the disease progress. There have been some moments of excitement and outstanding events that have given me the strength to continue.
When the EPDA launched the ‘Charter for people with Parkinson’s’ in 1997 on World Parkinson's Disease Day (11 April) and member organisations were asked to endorse it, I approached the Mayor of Jerusalem requesting that he sign the Charter. I figured that the endorsement by the Mayor of the City, sacred to the three monotheistic religions, would be appreciated .The Mayor (who later became Prime Minister of Israel) agreed and, amid great publicity, signed the Charter for People with Parkinson’s.
Another experience that gave me strength to continue with my activities was encouraging a well-known Professor and lecturer at the Hebrew University of Jerusalem, to ‘go public’. One of his students whom I knew, told me of the efforts the Professor was making to hide his symptoms. He was in complete denial. I took the unusual step of calling him, to offer help and advice. He declined to meet me but agreed to maintain contact by telephone. Late one evening, he called me at home asking desperately for help. He couldn't hide the trembling of his hands. "Even sitting on my hands gives me away", he said. I advised him to stand up in front of his students and begin the semester by telling them that he had Parkinson’s. He subsequently became one of the most active members of our Association.
Our Association has gone from strength to strength and I continue to be actively involved, even at my great age (82). Is there a better way to end a four-day seminar than by holding a gala dinner with live music where members get out of their wheelchairs and dare to dance? My involvement is my best weapon and the need to remain active is of great importance. To paraphrase what John F Kennedy said at his Inaugural Address, “it is not what the Association could do for me but what I could do for it” – and the benefit derived for me from what I did for it!
My family has got used to my situation and they respect my wishes; letting me stay home when we are invited to weddings or gatherings. At great expense, I now have to employ full-time help. This has meant some changes in priorities for the family budget. I can’t put my finger on any specific point, but Parkinson’s has brought us closer together. The sole fear for the future is the thought of losing my ability to act in a positive way or developing dementia.
See also EPDA Plus Issue 6
