From: WriterDave1  (Original Message)

Sent: 11/18/2004 10:10 AM

Hello All, Let me introduce my self, am a writer and journalism student from British Columbia, and I am contacting you out of an interest concerning the impact of online forums on the Parkinson's community. Gina Reilly graciously suggested I post questions up on the chat room, in the hopes of hearing the thoughts and feeling of members on how this online forum (as well as others) has impacted them. I hope I am not offending anyone by posting this to everyone, but I would love to hear back on question like: 1. How has this and other forums impacted your life? 2. How did you find the forum? How quickly after your diagnosis did you see an online forum out? And was something lacking in the other forms of support that made you seek out an online forum? 3. Do you feel a sense of community as a result of the forums? 4. What topics do find discussed the most? What are your thoughts on why? I would like to use the information sent back to write an article on the impact of this and other online forums, and this information can be anonymous or attributed. I thank you for all you help! My best, Dave Secko.

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Recommend Delete    Message 2 of 3 in Discussion

From: SpinningGoddess Sent: 11/25/2004 9:59 AM Well, I'm just getting started in this electronic forum stuff... But, I've been reading a lot in the last 8 months & I must say that almost everything I have learned about Parkinsons has either come from info on line, from a message board or from a book recommeded by a website.... I'd still be very lost & confused without the web.... So, here's my answers to your questions. 1. How has the forum impacted your life? I was one confused woman in March when I was diagnosed with PD. Since then, I've met some wonderful people, learned alot. Been given alternatives to some of my negative thoughts & even had my art displayed in a gallery as a resutl of meeting another YOPD. 2. How did you find the forum? How quickly after diagnosis did you seek it out? Was something lacking in other forms of support? I searched out websites first, the stumbled into some message boards. I did that very quickly - maybe the first 2 weeks I was diagnosed. Was some other form lacking? Hell yes!!! No info at the GP or the neurologists office! No info on support groups! (I eventually found out there is on meeting in a nursing home - like I'd want to go to one there!!!) Finally discovered a local group after 3 month of searching.... And now I've got some other YOPD's to talk to face to face, not just online. 3. Do you have a sense of community because of the forums? I really do. I have just found this message board. I know of 2 others which are really helpful. One on Yahoo and another here on MSN.... 4. What topics do you find discussed the most? What are your thoughts on why? The topics seem to be split between discussions on symptoms, medication side effects & the mental confusion PD causes.... There's alot of support given & kind words of encouragement whenever anyone writes about their difficulties. We're all in the same boat, and some people have a lot more experience/info than others. But, all the info provided is vaulable to the person it's addressed to and to everyone else who reads it. I hope my answers help with your research.

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Recommend Delete    Message 3 of 3 in Discussion

From: kkp62 Sent: 11/27/2004 10:09 AM Dear Dave,      I found Parkinsons message boards online 3 years ago when my tremor started.  Online information educated me, message boards & chat rooms gave me someone to talk to.  When I received a negative diagnosis I "dropped out of the scene."     Now I am a huge advocate of support groups.  I think Parkinsons can be isolating .Direct contact with people dealing with the same things you are is invaluable and unreplacable.  I went to my first meeting within two weeks of my diagnosis. I think the message boards & chats are great if you can find someone there in your area to meet personally with.  I think it a geat adjunct tool to support groups.     I recommend anyone to try a couple differant groups in their area.  My first meeeting was pretty geriatric.  Very nice, kind caring group 30 years my senior.  I still frequent their meetings.  Then I went to a YO meeting in rush hour traffic in Seattle.  It was almost a one hour hectic drive.  It was their that I met another newbie who lives 10 minutes from me.  The face to face can never be replaced with a computer Icon.      In conclusion:  Don't isolate yourself because you can with technology.   Karen

Dave Secko