Parkinson's Disease Tulip


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Old 05-24-2009, 08:22 PM #1
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Default The state of the board ...

tough to verbalise my feelings but I will try.

Braintalk2 (imho) seems to have lost its way somewhat. I guess the root cause seems to be that the board has become a source for sharing information and activism rather than personal communication. For some reason the board seems to no longer reflect the big personalities of some contributors and is becoming a bit stagnant.

I miss the days when cs3 was telling everyone how it is, Howard's indefatigable optimism, Vicky arguing a lone corner, Paula (my hero) and many others too numerous to mention. God I even miss the Duck, you might not like what he said but at least you knew he was on the board.

I am glad MJFF are reading the board and contributing but I fear we are taking ourselves too seriously.

I throw this out to the comments and wisdom of the masses and I am happy to accept if I am talking bu@@sh@t. I am aware that I seem to be the last contributor to an increasing number of threads however I hope this one will generate some discussion.

Take care,
Neil.
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Old 05-24-2009, 11:26 PM #2
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Neil;
ARe you referring to this forum or the old Braintalk??
The old forum was too restrictive and banned members (Like CS3)with no good reason and no way to appeal the ban.

I wish Chuck would post more too. We old timers sometimes get fed up with it all, or just feel like its all been said before.Sometimes we just are too tired to post!

CHarlie
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Old 05-25-2009, 12:45 AM #3
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Default Chasmo ...

no I mean Braintalk2.

While posts from the old timers are important they are not exclusively the answer. Recently I feel the board has lacked personality and personalities and on occasions looks like a news sharing forum.

Perhaps this is just a natural low or perhaps we need to reorganise the board to have areas which allow focus on activism, news and "PD in life".

Given that only Chasmo has responded perhaps I am off base with this one.

Neil.
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Old 05-25-2009, 02:06 AM #4
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Default Tired

Hi Neil,
I do agree with you, I was only thinking the same the other day. I used to enjoy logging on and seeing new information, arguments, what people were doing, the latest miracle! But now there is frequently only one or two mundane topics posted each day. I too miss CS2 (not CS3 I think), we had some epic battles, but there was a passion in those days about your opinions.
Even most of the white rats have taken worforin, except Rick who regularly produces a new miracle, but then it dies. The regular thread on what you did this week has died. Where are you Pegleg, we miss you too. So many have got bored and moved away.
I can't even suggest a reason, or a cure, but we do need the original fire.
Best wishes to all
Ron
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Old 05-25-2009, 03:40 AM #5
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Default why I still log in

It is hope ... expecting to find a helpful tip, experience , a miracle ..or some body explaining the on going research in layman language
I confess that nowadays I mostly scan titles and dig in only few threads
It takes time and dedication to contribute and I always appreciate whatever I read
thank you all
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Old 05-25-2009, 06:46 AM #6
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Default Must all things pass?

It has been clear that our little community has been slipping away for some time now. I'm sure the reasons are many, but one overriding one is that PD does take a certain toll.

For my own part, I have been so busy fighting alligators on the home financial front for the last twelve months that I have had to neglect the swamp. Hopefully, that period has come to an end.

I do miss the old fire. But, as Ron says, I don't know how to kindle it. I know that it has been invaluable to me and I hope it can find a new life but I don't know that it will/

Looking at other PD online communities, I have found nothing that approaches it. Most are made up of sick people waiting for a man in a white coat to save them with a pill that never comes - sort of the Godot Pharmaceutical Corporation. That's not for me so long as there is something else to be attempted. I know that even that may change with time, but not yet.

For myself, I will continue building my own website to further that view and all are welcome to drop by. It may be self-delusion but that, in itself, sometimes has value.

Regardless of the future, however, I would like to thank each and every one of you for the past. We all encounter dark nights of the soul at times and you have offered light even when you didn't know it.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 05-25-2009, 06:47 AM #7
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Default the heart of the matter

Thanks, Neil, for this thread. I log on here everyday, read and move on, sometimes I wonder why..... It is great to have a place that is a source of PD related info, but 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! And as well a feeling of being able to contribute, even if in a very small way, to a picture of PD that wasn't imposed by people who just observe it through a medical lens. From initial dx people here and on other boards were a lifeline in dealing with a condition for which my treatment seemed to consist of throwing me a set of meds and expecting me to get on with it, with only the vaguest of information to help. The science is very useful to those of us who have dealt with PD for a while, and advocacy helps move on a better understanding and better links between patients and the industries that deal with them, but the real heart of this site and its predecessor was surely the personal, life affirming, and very caring support that was given to each and every person who came here as part of their PD journey, and some of the best and most heartfelt debates on the things that matter to us all.

Lindy
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Old 05-25-2009, 08:37 AM #8
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Just a reminder that we are NeuroTalk

If there is any way we can help with anything here do let us know...we try to interfere as little as possible to allow members to make this forum what they would like it to be
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Old 05-25-2009, 09:17 AM #9
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Hey folks, anyone can start a new thread.

If there is a topic you want to discuss..start a thread and get the conversation going.

This forum doesn't have to be just techy posts. Steve asked for someone to take over the weekly check in thread. If one person doesn't want to do it all the time, then start one if you see it hasn't been done.

Heated conversations aren't a problem, but when attacking starts, that's a problem. It rarely has happened here. We step in when we have to.

So post away on topics you want to discuss.
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Old 05-25-2009, 09:21 AM #10
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I remember when BrainTalk was "the board," and may have been the only neuro board online. It was a pretty busy board and had subboards; e.g. PLWP.

Fortunately, back in 2006 (I think) when BrainTalk's server crashed, Doc John came to our rescue with NeuroTalk. The BT server was offline for about six months back then and we were all screaming about it, wondering when, when...?

I find that some online boards are somewhat social in nature, but NeuroTalk remains the place for serious thinkers and gratefully so!!

Carolyn
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