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Wow, this list is a powerful thing! I never expected you to write to me. I didn't mean to give the impression that being scared was your book's main effect. It also made me feel that I've been letting things slide too much and that I need to take a more active role in managing my own life with PD. I'm a positive person generally, and cure or no cure, I'm going to make the best of this journey! Thanks for your words of support! Scott On Sunday, March 10, 2002, at 04:52 PM, Linda J Herman wrote: > Hi Scott, > Welcome to the list. I hope you will find much information and support > here. > > I am one of the authors of When Parkinson's Strikes Early. I am really > distressed to read how much it scared you - that was, of course never > our > intent and I'm sorry. Barb and I wanted the book to present an honest > picture of people's lives with PD. The media has tended to sugar coat > many of its accounts about PD, and our decision to compile the real-life > stories of our fellow list members was partly in reaction to that . PD > is > not a benign illness. People need to know that. They need to know how > important it is that adequate funding and resources are applied towards > finding the cure as soon as possible. > > Being diagnosed, thinking about the future -- it is terrifying. Talking > about it with your spouse, children, friends is frightening -- and it's > difficult -- and it forces us to think about and talk about things we'd > rather not. BUT I hope you also found the message in the book that many > others have experienced these same emotions, and that they have found > the > strength to face their fears, they have learned to cope, and they have > been able to get on with their lives. We can help each other do this. > > We also tried to convey the importance of taking an active role in your > treatment, joining with others to fight this disease, getting involved > in political action and advocacy, fund raising, public awareness - these > types of positive actions will help you cope. It sounds like you are > already doing so. It's great that you're starting a support group. > > And the most important message we tried to convey is to live with hope. > The cure is coming. In just the six months since the book was published > there have been so many advances in the research. You will read about > more advances everyday on this list. Each of us still needs to do what > we > can to ensure that the most promising research continues unimpeded and > fully funded. > > Another reader wrote to me that the first time she read our book - her > reaction was similar to yours. But she read it through again, > highlighting in yellow all the positive and hopeful sections, and by the > time she was done there were a whole lot of yellow pages. Maybe at some > point you might read it again too. I hope you will find it in some way > to > be a source of help to you and your family > Best wishes and good luck with the support group, > Linda Herman > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn