[pegleg]

First, let me address aj's comment about Paula & I not using wheelchairs. I guess I am about the most stubborn person with PD there is (maybe besides Paula). I always say when I check in at the airport, "I MAY need wheelchair services," then I rarely use it. It is much safer, I know, but then being hard-headed is why I am still able to travel. Traveling alone isn't very smart when you are in advanced stages.

At BIO I had a follow-up interview for the NPR program, "Biotech Nation." It won't be up for several weeks (maybe even months), but back in 2007, I was interviewed and the old interview is there. http://www.technation.com/ (You can watch the site, if interested) Dr. Moria Gunn is one sharp lady. She was very interested in my experimental brain surgery (which I had 8 years ago). As "pathetic" as I am, I could no more walk across oa room unassisted prior to the surgery. I guess if placebo effect did that, then bottle it up! Dr. Gunn's mother had Parkinson's.

And now to discuss or give my viewpoint of this forum. John Lester was the Technology Administrator for Mass. General and created Braintalk back in the late 90's, when a bunch of us found his forum. This means of communicating was new (heck, the information highway was even new!), so he drew in thousands of hits each day. John took a real interest in the Parkinson's community. He even became part of the board of directors for the PLWP community. John came to our retreats and social functions and even visited me here in Tennessee. We were all one big family. We would often visit one another - I even visited Ron Hutton in the UK!

Everybody has forums or websites now. And after John had a friend that was involved in 9-11, he sort of faded out of the picture. I haven't heard from him in years. He was such a caring person. Then when some moderoaotors took Braintalk over, they started banning people and everyone seemed to flock to NeuroTalk. I seldom post any more (unless it's something that really grabs my attention, like this thread.) I'm on about every "new PD treatment" alert lists there are, so it's not news to me when I read it in this forum. But I do enjoy the "personal" aspect of this forum - like we're discussing right now. That, in my opinion, is worth me addressing.

I don't really know the John of NeuroTalk that well, but he also seems very caring (after all, he sat this forum up for us). I have heard many say that they didn't feel "qualified" to post in this forum. That's a ashame, because connecting or networking with others who share this disease should be the main role this forum plays. It has gotten a bit too formal in some respects. And it seems that forums are all over the place. You just find one that works for you and stick with it.

I hope I haven't said anything to hurt anyone's feelings; I'm just giving you my opinion. By the way, I journaled online for PLWP for several years (as did Greg and AJ and others who post here). You can still read the journals at www.plwp.org . Spammers have almost ruined my journal - so if you wish to read it chronologically, start with peg 1.

Peggy

[dbiker2]

Originally Posted by pegleg

And now to discuss or give my viewpoint of this forum. John Lester was the Technology Administrator for Mass. General and created Braintalk back in the late 90's, when a bunch of us found his forum. This means of communicating was new (heck, the information highway was even new!), so he drew in thousands of hits each day. John took a real interest in the Parkinson's community. He even became part of the board of directors for the PLWP community. John came to our retreats and social functions and even visited me here in Tennessee. We were all one big family. We would often visit one another - I even visited Ron Hutton in the UK!

Everybody has forums or websites now. And after John had a friend that was involved in 9-11, he sort of faded out of the picture. I haven't heard from him in years. He was such a caring person. Then when some moderoaotors took Braintalk over, they started banning people and everyone seemed to flock to NeuroTalk. I seldom post any more (unless it's something that really grabs my attention, like this thread.) I'm on about every "new PD treatment" alert lists there are, so it's not news to me when I read it in this forum. But I do enjoy the "personal" aspect of this forum - like we're discussing right now. That, in my opinion, is worth me addressing.

I don't really know the John of NeuroTalk that well, but he also seems very caring (after all, he sat this forum up for us). I have heard many say that they didn't feel "qualified" to post in this forum. That's a ashame, because connecting or networking with others who share this disease should be the main role this forum plays. It has gotten a bit too formal in some respects. And it seems that forums are all over the place. You just find one that works for you and stick with it.

I hope I haven't said anything to hurt anyone's feelings; I'm just giving you my opinion. By the way, I journaled online for PLWP for several years (as did Greg and AJ and others who post here). You can still read the journals at www.plwp.org . Spammers have almost ruined my journal - so if you wish to read it chronologically, start with peg 1.

Peggy

Peggy you pretty well summed it up for me right down to the 'spammers have almost ruined my journal'

[rose of his heart]

Dear Vicky,
Wow. YOU know how to make a point. Boring? Are you joking? What an amazing life you are having. Have you written a memoir? Keep faith,
Rose

[DocJohn]

I think the reality is that we've come a long way in the past decade. Ten years ago, the only place you could reasonably go and find a decent online support community for PD was BT. John Lester found a powerful way to help people with BT, and many owe him a great debt of gratitude for his work in this area.

But since that time, as others have noted, we now have lots and lots of PD community choices. The non-profit orgs have finally come on board, and we have innovative online "Health 2.0" sites like PatientsLikeMe that offer something different and interesting. More choices means that the 100 people who would've gone to BT a decade ago are now spread out between a dozen or more sites. Some visit more than one, but many only know of the single community they find and feel a "part" of.

At the end of the day, while I lament this "balkanization" of support groups, I also believe it's probably inevitable and for the best. That means that no longer does a group have to rely on a single individual to keep things running (like in BT days of old), and it gives people choices based upon the type of community they find best meets their needs (white coat, stifiling, open, etc.).

I saw it mentioned earlier in the thread, but I hope one of the things that sets NT apart from some other PD groups online is just the great group of people -- you! -- who've gathered here and make for interesting conversations. Even this one is one of those interesting, insightful conversations about online support groups and such that I don't usually find...

Sure, it ebbs and flows and sometimes it seems the conversation is not flowing so much... But I think that's just the normal cycle of an online support group.

At the end of the day, the only thing that matters to a group like this is the people who choose to be a part of the conversation. So if you spread the word to others you meet in your online travels about the group, then that helps to keep new folks finding us.

I really appreciated and enjoyed reading this thread, thank you!

DocJohn

[Fiona]

I really feel like I love each one of you. Thank you so much, all of you...

*was sure she had an extra box of tissue somewhere...*

[indigogo]

I am reading this thread with great interest.

I believe this forum is just going through one of its inevitable lags. Always happens; always will.

NeuroTalk is invaluable for those of us who read and post here. It appeals to many, but not everyone. It is not a chat room, but it is a community. For more than 7 years (including the original BrainTalk) it has been my home.

I have been given the incredible opportunity to represent PD patients on two national org patient advisory boards recently (PDF & MJFF). Both are concerned and genuinely care about patients and their online activities. They would like to capture a portion of that audience on their own websites, for two reasons: 1) they care about patients and want to help, and 2) they care about the viability of their organizations.

They still do not understand the meaning of “community.” They do not understand the need for patient-to-patient communication and education. They are scared of any thing, any entity, that is not under their control or imprimatur. They don’t like un-moderated discussions of “alternative” anything. They don’t understand or like anything they can’t “fix," replicate, or contain on an excel spreadsheet.

I understand this; it is ok to me – they, by their very existence and meaning as organizations, are beholden to boards of directors and funders. They are engaged in important efforts on our behalf. They need to continue their business.

But they can’t be everything. Some things, synergies, ideas, have to be created off-site and by those who are most intimately involved. Us, we, the patients and carers. If the orgs want to know about us, then they can read it here.

It may be in a cyclical lull, but NeuroTalk provides an important platform for informed voices of anyone interested in learning more about living with PD. It cannot and should not be duplicated any where else. It is vital and alive, even when hibernating or dormant.

I love this place and everyone here.

[girija]

Hi All,
After reading this thread, its so clear to me what this community (thanks Carey) means to all of us. neurotalk is still the place I want to visit evryday. I call it a place because its more like a home for the PD part of me. This is the place and all of you taught me so much about not just PD, but life, gave me hope and made me believe that I can cope with PD. Thanks.

girija

Girija

[pegleg]

Vicky
When youshare about your family, it's never boring. You shouldn't even think you have to apologize. We're all here to share.
;0 Peg

[aftermathman]

tells me that a lot of people still care about the forum and this is great.

I agree we go through lags for a number of reasons, the health of certain contributors, disillusionment with the state of PD research, and frankly at times there just isn't that much to talk about I guess.

We still have a number of people who care about our virtual community and I hope that we can retain our focus on the one theme that underlay all the responses and was summarised by Lindy better than I ever could:

"my habit of returning here was fed by the personal touch, and the feeling of communicating with real people who shared the same issues and triumphs over adversity".

Thank you fellow PD'ers for taking the time and trouble to care and one day I may even get the name of the forum right

Neil.

[bandido1]

Originally Posted by aftermathman

tells me that a lot of people still care about the forum and this is great.

returning here was fed by the personal touch, and the feeling of communicating with real people who shared the same issues and triumphs over adversity".



Neil.

http://www.youtube.com/watch?v=4D6NpIld3co
All well done. Now we need to lighten up Gang! Try this link to my activism contribution. Bob C