Sons and daughters, Or how do we communicate with our children about our disease. Kees with his wall started this topic. A few others followed. I recognised things in every story. I give mine. Writing and reading story's like this is useful even if the ideas about what to do don't suit the reader. Thinking about your own opinion is easier when a contrasting opinion is available. I agree with Barb., who said we are a reminder of their vulnerability for others. To exaggerate, I say sometimes: I am a walking momento mori. People don't like that, though I have experienced this is partly culure bound. This is another topic for another time. Twelve years ago I was diagnosed with PD. From the beginning my disease was evident for anyone who saw me. Joe Young wrote (8-12) :"I reached the age of 60 never having met a PWP" and asked himself why. I saw a few times one in public, but the ones I saw had symptoms so futile that only a sharp eye could detect them. Only when I attended meetings of the PWP organisation I saw symptoms which only a blind person could have failed to notice. The only explanation seems to be that people with serious symptoms live withdrawn lives. Experiencing the reactions of people in general it was clear they were not used seeing patients like me. So I had to get used to their reactions, which were negating, moving away, embarassment. Sometimes however somebody reacted otherwise, asked straightforward whether I had Parkinson or MS or whatever and than added they knew about it, having a brother or mother or someone else close to them with the same sort of problem. For these people I was a normal approachable human being. Once however a family member of a PWP had the opposite reaction. A woman who lived nearby crossed the street to avoid me. An neighbour told me this woman could not bear to meet me because her own mother had PD. A very sad story. She must have felt terrible. It would be dreadfull not only for me but yet more so for themself when my children would in the future react like that on others. I have a son and a daughter; now 24 and 22 years.I know it is a stereotype, but it so happened that my son distanced himself somewhat and my daughter reacted more emotional. They were to young to be able to understand what was happening to me when the illness started. My son's reaction was the easiest for me. He was helpful when asked. He was not indifferent but did not talk and not knowing wether he whished to was the only difficult thing for me. My daughter was very angry with me. She did not want to hear anything that referred to my illnes. She was embarrassed seeing the embarrassment of others,but at the same time felt very guilty about her own reactions. I have tried to tell her that her anger was quite normal and that I, by getting ill was a mean trick and that often adults for the same reason did feel anger too, but that they were more clever in hiding it. Later I added she had to learn some hiding too. The following is an example of this kind of trouble. Once being in town together to buy some clothes, she got angry because I was dyskynetic. I, angry too, gave her her trainticket and said: go on your own, do as if you don't know me and go home. After such rows I feared she would grow up to be like that avoiding woman. My wish to do something to prevent that was in conflict with my wish to protect her against sorrow at the moment. After some time the problem moved to the background. We all got partly used to the situation and the children were pubers. We had a reasonable good life. For the children, taking friends home has never been a problem. They told every new one about my disease. I never noticed any of them being embarrassed. They liked it here and in the week-end evenings in our house were a coming together with the friends of both our children. I now make a jump in time. My son started h s university study. He came home from his first week of introduction in university and told about a boy in a weelchair who was in the group. He had talked quite naturally to this boy. However to his surprise he was the only one who could do so and he had realized he owed this to his experience with me. So I had my turn to be surprised. In the following years he had more story's like that. In a meeting he attended, students had advocated the abolishment of research on animals. He had explained why that was not realistic by telling about Parkinson research. He had told too why he knew that so well. It is really brave to do that, knowing misunderstanding is probable. My daughter went to university too. Coming home in week-ends it was for her difficult to see me when being off. My symptoms increased and she saw it clearly. She said she could not bear to see me suffering. At that moment it seemed to me not wise to protect her by hiding the symptoms. I told her my disease is very serious indeed and of course it is not easy, but I was alive and I valued that. Some people think having a disease like that makes one live in hell, but she could see herself that was not true and she did not help me by making my suffering her suffering. Things like that need much repetition. The moment came she had a book about biological psychology, had read about Parkinson and started asking me questions. A few weeks ago she said that she felt being more grown up than some of her co-stu- dents by what happened to me. We both love literature and discover how much we have the same taste. Talking about it with her is a real plaesure. A similarity as that makes a closeness that in fact was felt much earlier. That could be one of the reasons why the coming to terms was for her more difficult than for her brother. Ida Kamphuis Holland