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Leslie Van Dover wrote: > > From: Parkinsn List Study Group; McMaster University School of > Nursing,Hamilton, Ontario, Canada; Sheryl Boblin-Cummings Ph.D., RN, > Dauna Crooks D.N.S., RN, Barbara Patterson, Leslie Van Dover Ph.D., RN.; > Mary Fawcett, MHSc, RN. > > We have been looking at messages from the Parkinsn List archives to > develop an understanding of how people use the list and its value to > them. From this, we have some ideas about "what is going on on the > List?". We would now like to hear directly from list members about your > experience with the Parkinsn list. > > Your answers to the questions below will help us to better understand > your experience and to interpret it to others. You can choose to respond > to these questions or not. If you share your expertise and experience > with us, we will be grateful. It's important for us to hear from you IN > YOUR OWN WORDS. If you find it too difficult to respond or are not > interested, that's OK. > > You can respond to some questions and not others, as you wish. You can > respond "on list" or privately to: Leslie Van Dover at: > [log in to unmask] > > People join Lists for various reasons > > 1.How did you first learn about the Parkinsn List? My son Ray began cruising the Internet during off-hours at his company's computer in Palo Alto. Since I didn't have on-line capability, he started to print out all the messages and bring them on his visits here. About that time there was a flurry of discussion following the Wall Street Journal article reporting the sudden boom in pallidotomy, which made the List specially interesting. > 2.When did you first join the Parkinsn List? It soon became apparent that printing all the messages was impractical. On one of his visits (spring 1994) Ray found an interface program, PROCOMM, which would run on my limited, 8-year-old, DOS PC if all we wanted was e-mail (no web browser). We opened an account with the ISP Netcom and I joined the List immediately. > 3.What reason(s) did you have for joining the Parkinsn List? Having been diagnosed with PD about 6 months earlier, I was eager to learn all I could about it. From experience documenting my wife's long battle with cancer I was already familiar with standard references such as the PDR and the Merck Manual. When she died I began to volunteer regularly at Kaiser Permanente, where we had been members for many years, and where I got permission to use their medical library. I also joined a local PD support group, where I soon realized the value of sharing experience with as many other patients as possible in this variable and unpredictable disease. The Parkinsn List then looked like a source hundreds of times bigger than any local group. > People stay on lists for different reasons. > 4.Why do you stay on the Parkinsn List? As a retired engineer, I knew something about the nature of scientific publication in general, and offered to help interpret new research reports for my local support group. From there it was an obvious step to post my interpretations on the List forum. This being well received, I can contribute something as well as getting something out. > 5.What are the three most important things you get from the Parkinsn List? A. Personal insight into the ways that specific individual members cope with PD. Most of these seem to be more severely affected than I, so I get both inspiration and knowledge which may serve well in the future. B. Knowledge about new developments in etiology, diagnosis, and therapy which someday may affect me directly; especially the individual reports which are so varied. Although I probably keep up with formal reports better than most, I certainly don't pretend to know everything. C. Pleasure in knowing that other PWP, worse off than I, still are able to enjoy life, comfort others, and smile a little. > 6.What else are you getting out of belonging to the Parkinsn List? Besides getting information that helps me, I get a lot of pleasure from helping others with information that I can provide. > >From reading the archives, we think that one of the main things that goes > on in the Parkinsn List is something we call "connecting". By connecting, > we mean sharing a part of our lives with each other, creating a sense of togetherness. > For example, people can "connect" with: other people who are having > similar experiences; ways of dealing with PD in everyday life; > information about PD and its symptoms and treatment; and ways of taking > action to improve the situation for themselves and others. > 7. Do you think "connecting" is one of the mainthings that is happening > on the Parkinsn List? Yes. > 8.Is connecting happening for you on the Parkinsn List? Absolutely. Not only do I sporadically correspond privately with various Listmembers, but I have introduced the List to local support group members who were unaware of it. > If it's not "connecting", how would you describe what is happening for you? Normally I wouldn't bother to answer questionnaires, but I see clear value in this one. > 9.If something is going on on the Parkinsn List thatis MORE IMPORTANT to you, what is it? Courage. Even without PD, I would need all I can get. > Leslie Van Dover > McMaster University School of Nursing > [log in to unmask] Cheers, Joe