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Dear Susan My children are grown up now, but whenn I started having Parkinson they were chidren yet. I wrote this mail to the list on a momemt the object of how relate with chidren as a PWP. I am sure that having the children did give me to start with motivation to go on and not become depressive, but to make life worthwhile and so giving the children a plaesant home. I hope you recognize things in my story and find some optimism out of it. I am convinced my children are mentally grown stronger, because of my disease. Sons and daughters, how do we communicate with our children about disease. Kees with his wall started this A few others followed. I recognised things in every story. I give mine. Writing and reading 's like this is useful even if the ideas about to do don't suit the reader. Thinking about your opinion is easier when a contrasting opinion is I agree with Barb., who said we are for other people a reminder of their vulnerability. 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. years ago I was diagnosed with PD. From the moment my disease was evident for anyone who saw me. Young wrote (8©12):"I reached the age of 60 never met a PWP" and asked himself why. I saw a few one in public, but the ones I saw had symptoms futile that only a sharp eye could detect them. when I attended meetings of the PWP organisation saw symptoms which only a blind person could failed to notice. The only explanation seems to that people with serious symptoms live withdrawn Experiencing the reactions of people in general was clear they were not used seeing patients like me. I had to get used to their reactions, which were , moving away, embarassment.however some times somebody reacted otherwise, asked whether I had Parkinson or MS and than added they knew about it, having a brother or a mother or someone else close to them with the same sort of problem. For these people I was a approachable human being.however a family member of a PWP did the opposite A woman who lived nearby crossed the street to avoid me. A 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.would be dreadfull not only for me but yet more so 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 distancedsomewhat and my daughter reacted more emotional.were too young to be able to understand what was happening to me when the illness started. My son's reaction was the more easy for me. He was helpful when asked.was not indifferent but did not talk and not knowingi if 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 getting ill was a mean trick and that often adults for the same reason did feel anger too, but that they were more able hiding it. Later I added she had to learn some hiding too. The following is an example of the kind of trouble, we both had being in town together to buy some clothes, she got angry because I was dyskynetic. I, angry too, gave her her the trainticket and said: go on your own, do as if you don't know me and go home. Having such rows I feared she would grow up to be like thatwoman in my street.wish to do something to prevent that was in conflict with my wish to protect her against sorrow at the moment. ut the problem moved to the background. We all partly got used to the situation and the children were pubers.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 weekend evenings our house was a place of coming together for the friends of both our children. now make a jump in time. My son started his university study.came home from his first week of introduction in university told about a boy in a weelchair who was in the group. Hetalked 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 nmy turn to be surprised. the following years he had more story's like that. In a meeting 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.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 she saw it clearly. She said she could not bear to see me that moment it seemed to me not wise to protect her by hiding the symptoms. I told her my disease is very serious indeed of course it is not easy, but I was alive and I valued that.people think having a disease like that makes one live in hell,she could see herself that was not true and she did not help memaking my suffering her suffering. Things like that need much saying it again and again. The moment came she had a book about biological psychology, had read about Parkinson and started asking me questions. A few weeks ago sjhe said that she felt being more grown up than some of her peers because of what what happened to me. I do feel now how close we are. We both love litterature and we have exactly the same taste in it. I think that reflects a closeness which existed already many years, but made accepting my disease more difficuli for her than for her brother. Aan 27-6-97 23:01, in bericht <01BC8313.8CB942A0@andersonpc>, The Andersons <[log in to unmask]> schreef: > > Hello Everyone: > > I'm new here so if I do this wrong someone please let me know. > > My name is Susan A., from Dallas Tx area. I'm new to the area, just been > here 6 mos. > But I'm not new to the treatment of PD. I was diagnosed with PD when I was > 25, had symptoms for a year before that. > I am now 39, so going on 15 years with this. In those number of years there > has a lot of ups and downs, thanks to a great > doctor who really knows the field of PD (Dr. Langston), I am still able to > live a fairly normal life. > > In the years since I was diagnosed I have had 2 girls ages 8 and 11yrs., seen > my Dad suffer from poor treatment for PD., > I had brain surgery about 8 years ago on the Thalamus (spelling?), which did > wonders . > Right now I am currently taking Carbidopa/levodopa 25/100, permax, eldepryl. > I do have periods of up and down with the meds, > but overall doing good. I have recently started exercising on a regular > basis (every morning), this has made a big difference in the way I feel. As > I mainly have just the tremor, which I have learned to adjust to the meds. > decide they want to take the day off. > My muscles can get rigid if I do not exercise, so I can make a difference > here. > > I try to keep very active, and keep a positive outlook on all of this. I > really your attitude can make you or break you when dealing with > PD. And of course the sense of humor has got to be there. I think the > funniest thing I have heard is one day I over heard > one of my girls explaining why Mommies hand shakes, they said they really > didn't understand it totally, but they did > know that there Mom could make one heck of a milkshake. > > Some days I do feel alone with my age and PD, would very much like to know > that there are some one else about the same age as I trying trying to deal > with this and raise small kids. > > Sorry if I rambled, hope no one got bored. Thanks for listening. > > Susan A. Dallas Tx/ 39 > [log in to unmask] >