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Van: [log in to unmask] Datum: 2-10-97 18:16 Onderwerp Antw: A man named "John" Adres: Aan: "Parkinson's Information Exchange" <[log in to unmask]> John This mail is meant for you. I ope hat somone on the list will print this mail for you and if you have more questions, take care these questions do reach me. I know that in the time before levadopa was available (1968), the number of 15 years as the maximum a PWP could survive his diagnosis, was often mentioned. And after the levadopa appeared in 1968, quality of life was considered, so it was said to me 13 years ago, that it would deteriorate unavoidable after 10 years. Though it is now 13 years ago and the quality of my life is yet with me thanks to other meds, espescially the dopa-agonist and very recently a pallidotomy, the forecast seems not to have been without any sense, because it was after about 10 year using sinemet that my symptoms grew and interfered heavily with normal living. Just as I was in a better position than the people who were diagnosed 10 or 15 years earlier, you are now in a better position than I was when I started being a PWP. Such a forecast which your neuro did, seems to me to be realy dangerous, because for decisions that have to be made, (to stop working or not, sell your house and spend the money or not), it makes a difference if one believes death is unavoidable after such a short time. I hope you will be able to believe that although it is true you 'll need dopamine for the rest of your life and that a moment will come, when the side -effects are very aversive, the neurologists have strong and efficient weapons to fight these symptoms. There are many people on the list who can tell you a story like that. So don't stop makimg plans for the future. But nevertheless, when there are things you would like to do very much, for example to travel a bit: don't postpone it without necessity. Because in my opinion we can not yet be sure that the disease can be cured within our lifespan, so when making plans for the future, know that most probable ( but not for certain) you will be more handicapped in the future. Ida Kamphuis 53\13 [log in to unmask] Aan 27-9-97 21:26, in bericht <[log in to unmask]>, David Moreland <[log in to unmask]> schreef: > I know of a man named "John" who is newly diagnosed. His Neuro has told him > thay he has 15 years to live and should probably stop working soon. I > recently called him and encouraged him to attend the Parkinson's symposium > in Portland two weeks ago. He went to the symposium and became very > discouraged by it. He has his house for sale. It seems like he is > withdrawing from society. I became aware of him through his sister-in-law > who is a friend of mine. She wants to help him and I want to help him. But > I don't know how. I feel like if I call him again it will seem like I am > pushing. I think his Neuro is giving him some bad information and is > stressing the negative. Granted PD has a lot to hate but we have to get on > with life as best we can. We can't dwell on the negatives. > > Could some of you give me some ideas of how I could help "John". I am 54/10 > and am still working. I am not planing to quit soon. I want to tell "John" > there is life after diagnosis but I don't want to cram it down his throat. > > > Like sawdust in a cyclone, > so are the thoughts of woodworkers. > > David L. Moreland > > [log in to unmask] > http://www.teleport.com/~davelm >