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Dear list member, I guess, after 5 years i am also one of the "old timers." From the beginning the Parkinsn list was my source of strength for coping with my diagnosis and then for learning how to face life with PD. In the past this list was about people sharing information and understanding and offering hope to each other. List members responded to pleas for grass roots advocacy and worked together to help pass the Udall bill, and increase funding for PD in other ways. But I have also felt that for some time the list has beeen loosing it's focus. By the end of the day, I often now find my mailbox with only a few messages about PD, but full with personal messages and disagreements. I have to agree with Jorge's Romero's statement " this is NOT meant to be a social list, but a list in which PWP and their caregivers discuss issues related to PWP and caregiving for PWP...This list started out as an exemplary resource for PWP. I would urge that we support any effort to return it to such function. " I think Simon offered some excellent suggestions, perhaps a list this size does need some level of moderating. Maybe Simon and Barbara would be willing to look at the policies of the other Parkinson's lists and come up with one that would be workable with PIEN? To Katie Wolfe - a belated welcome. You may be new to the llist, but your message reflected much insight into the problems that many others recognize and are finally talking about. I think the perspective of a new member is a very valuable indication of how this list has wandered from its original intent. Stay with us Katie -- hopefully this discussion will be a new beginning. TO New members - just to let you know, newbies were welcomed very differently in the past. No one was told to search the archives for answers to their questions. I'd like to share just a portion of a newbie's welcome from last year from which I found in the list Archives .I have removed the writers' names from the excerpts below and hope if any of them are still on the list, they won't mind seeing their words being reposted here. Within about a day there were many other replies such as the folloiwng to "Tell Me More." Date: September 17 3:39 PM To: PARKINSN LIST Subject: Tell me more! I am a 47-year-old female who has just been diagnosed with PD. So far, I just cannot use my left hand very well and get shakes when I try. My left leg is also starting to get the jittery feeling. Also, there is the problem with rigid muscles which is the worst! I guess I don't have much to complain about except lack of information. The doctors (and I have seen many) don't seem to want to give you any info. I am starting the drug [pramipexole] and am having some difficulty with nausea, but since the dose is still not enough I haven't gotten any relief from my symptoms. Do any of you know anything about this drug and what I can expect? I have read everything I can find on the Web but that is just too depressing. The doctors say don't worry you should have many years of productive living... What can I really expect? How long will I be able to continue to work (I do accounting and use the keyboard a lot which is getting very hard to do)? Should I be planning for assisted care soon? I know these questions are unanswerable but I wish someone could give me a ballpark figure...say 5-10 years before you will require help with daily chores...or something! I sure all of you went through this period of confusion. During the day my husband and I discuss where we will put our backpacks on the next road trip, at night alone in my thoughts I wonder where we will put my wheelchair . . . I would appreciate any answers to unanswerable questions. Thanks. Subject: Re: Tell me more! 4:55 PM Dear ' ... I was diagnosed at age 44 and practiced until I was about 52. But things are getting better. [Pramipexole] may slow the progress of the disease and certainly if that doesn't work as far as symptoms go there is always the gold standard [levodopa] which will almost certainly bring you back to near normal. …Also, there are surgeries which are being improved on all the time such as Deep Brain Stimulation which are helpful if and when you reach that point. While PD is an awful disease, the cure is not far off…so it is my hope that you and I will see it and hopefully before you get significantly debilitated. Regarding doctors that you are seeing I suggest that you at least consult with a Movement Disorders Specialist. Unfortunately,… there are many MDs who don't know about the latest trends in PD care and may treat you as they were trained 10 or 15 years ago. Good luck and please feel free to email me at any time. 5:17 PM From: ... I wish I had specific answers to your questions or even answers that you "want" to hear. If I am understanding your main battle right now is coping...understanding...living with this disease. You will need to find a neurologist that you feel comfortable with and trust. A good medicinal program is important as well. Of course support groups and love and understanding from friends and family will help too. I will tell you this ...you are not alone...although that is really how you feel right now. If there is anything I can help you with ...my e-mail is . . . 8:40 PM From: I was officially diagnosed August 1994 and like so many, had symptoms for some years prior to dx. I was 45 at the time of dx. . … This list has played a very important part in my attitude, education and decision-making. The most important benefit of this list for me has been education!!!! The saying that knowledge is power, in this case is very appropriate!! I have learned so much and with that learning it has been an opening door to better relationship with my doctors. I continue to educate them! I agree with Barbara Patterson when she said the most knowledgeable would live the longest! Sept. 18 12:38 AM From: . . .I think it is really important to find a doctor whose specialty is movement disorders. We drive 2 hours to get to mine. For free literature, contact the National Parkinson Foundation and the American Parkinson Disease Association. Tell them you are newly diagnosed and would they please send you any and all booklets, brochures, etc. that are available. There is also the APDA Young Parkinson's Information and Referral Center . Ask them to send you The Young Parkinson's Handbook and if you have children ask them about PDKIDS. Sept. 18 4:00 PM FROM: "Newbie" RE: RE: Tell me more Thanks to you . . . who have responded to my questions… It is the first time I have actually talked about my PD with anyone and after the initial typing through the tears; I realize I am not alone at all. There are a lot of people like me out there who have coped well with this disease and are really living their lives. Somehow, that makes it easier for me. You have answered my questions and offered suggestions which no one else has been able to do. Thanks to all of you and keep hanging in there. I hope someday to be able to help others in the way you have helped me. ------------------------------------------------------------------------- ----------------------- To "Tell me more" author -- I'm sure you have helped others too. To Katie - I am also 50 years old, and was diagnosed 5 years ago. Please feel free to email me if you have any questions or want to talk with a peer. Best wishes to all, Linda Herman [log in to unmask]