Article on BrainTalk from 2007

[agate]

I was wondering what someone would find if "online communities neurological disorders" was entered in the Google search window, and I stumbled across this article in Brain & Life (formerly Neurology Now) from 2007, in case anyone wants to look back on the old days:

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[Virginia]

Those were definitely the good old days when internet forums truly meant something to those who were suffering, not that they still don't, there is just not enough people with enough interest to keep them going.

Thanks for posting Agate. It was nice remembering how much this forum meant to so many.

[agate]

It was a great resource for me, and at that point I was so new to the Internet that I had trouble using links. It was here that I got practice using them because I had some questions about Avonex and the MS injectable drugs in general, and many people replied, often with helpful links. I thought it was great to have useful information just handed to me by people who had it and were willing to share it.

[Virginia]

I don't know what I would have done without this forum when I was newly diagnosed and for a lot of years after that. The information I received was invaluable to me at that time and actually still is. I learned about drugs, how to better handle so many symptoms I was having, the depression that comes with finding out you have MS and so many things. There were truly a lot of very smart people on here that had researched and learned so much and they were willing to share it. I am grateful to all of them even if they are not still here.

[agate]

Me too, Virginia. They took time during their day to come here and offer help.

The first 21 years after I was diagnosed, there was no way to find out much about MS except from reading textbooks.

I read several textbooks. There was a support group I went to once or twice, and so I met a few people with MS. Those that I really got to know all had very severe cases and couldn't communicate very well. I corresponded with four more people with MS but again they had fairly severe cases.

I knew that not everyone with MS had such a severe case (those textbooks told me that) but finding many people here who had MS but who were still doing things independently, as well as some who were no longer independent, gave me a more balanced picture in the real world.

[Sunshine 2]

Seems like as soon as Facebook started to have forums for just about any topic, including MS, that this and other formats dwindled.

[agate]

Yes, I think that's very true. Maybe it's all about attention. Most people seem to enjoy attention--someone out there to listen to what they have to say. On a message board there are opportunities to be "heard" but on Facebook you're offered your own page where you can really shine, and you can talk to only people you want to talk to.

I've heard that the Internet is a battle for people's eyeballs.

[Virginia]

I so much prefer a forum like this to facebook. I think you get to know the people on here better and know who to trust as far as their research is concerned, and also who you can trust to be your friend. I would never have met someone like Joan (Nuthatch) and gotten to know her on Facebook. I think of Facebook as a place to keep up with people you are already friends with and relatives you don't talk to on an everyday basis.

[agate]

Yes, nuthatch! And Peg! And so many others. We've had some remarkably interesting people on here. You can't really say much in a Facebook post, a tiny little area where you can write your message. Here you can ramble on and on at some length and toss in photos and links and quoted material. It's like having your own space in a magazine where you have readers who regularly catch up with what you have to say.