[indigogo]

Hi, Dianna - I'm glad you asked the question. This forum used to be a lot more fun and personally supportive. I've been involved with BrainTalk/NeuroTalk since 2002 as a regular poster and community member. I still check the forum everyday, but am not as interested in the hard science tone that most of the threads feature these days.

The discussion is less about life and nuance, and more about facts and figures and endless speculation about science that, while interesting and intellectually stimulating (a worthy goal in and of itself), is not conducive to community building.

It is what it is - and you are always welcome here!

[Aunt Bean]

Welcome Dianna....I for one am here to learn from everyone else and to share what little I have learned experimenting on myself with foods and tinctures. I only have a high school education , but a scientific and inquisitive mind . I have been studying herbs since 1996 (but on my own..any book I could get my grubby garden fingers on from several libraries, etc and now internet sources.) PD runs in my family. Brother died in Dec with heart trouble & PD.(Grandfather and his brother were both on sinemet) I personally want to make a difference for my children and generations to come that may be apt to get it also (my son told me a couple years ago that he was feeling off balance at times and sometimes noticed a slight tremor. So, you can see where I am coming from. Seeing something make a difference in the way I feel is so encouraging and I want to share those things with others that might be helped also.
Again, Welcome to the forum. Aunt Bean

[Jomar]

If you are looking for specific information or topics , you can use the PD forum search, or the whole site search. The link for whole site searching is in my siggy.

[Conductor71]

Originally Posted by indigogo

The discussion is less about life and nuance, and more about facts and figures and endless speculation about science that, while interesting and intellectually stimulating (a worthy goal in and of itself), is not conducive to community building.

It is what it is - and you are always welcome here!

Hey Dianna,

I have told others; when I recommend this site, that this is by far the best place for expert patient support and knowledge for what your doctor won't tell you. We are caught up in a system that does not have the same sense of urgency that we do here. If you are happy with your treatment and prospects than this forum might not be for you. It is not a place for mainly warm, fuzzies. However, if you do have a crisis or sole crushing day, you will get support.

This forum is rather a treasure in that it is so full of knowledgeable people. Remember, knowledge is power. Hey, the CEOof MJFF posts here and reads; that I know of, Debi Brooks does not pop in to update or clarify info on any other patient site. This says a lot .

If you do not feel comfortable here, that is okay. It does not mean anything other than you and the forum are not a good fit. Personally, the groups who just want to group hug and tell us that Mirapex makes them horny all the time drive me batty. To each his own. If you are seeking a more balanced forum try the National Parkinson's Foundation forums, 23andMe PD community, or Patients Like Me.

If you decide to stick around, cool. If not, best wishes to you

[Peony]

Wading in at my peril, expecting slams. Go ahead, do your worst. Diana, I hope you stay. Great forum, lots of useful info, all types of people, nice, cranky, well-informed or not so much. I've learned a lot here. That said, as a relative newcomer (DX '07, joined forum about '09 I think) and infrequent poster, I must say I have sometimes felt unwelcome, an outsider, unacknowledged. My posts not usually popular and even sometimes responded to critically or with hostility. Off-putting & discouraging to a newcomer. Some people post here a lot (me thinks a bit of agonist OCD kicking in?) and talk mainly to each other, and can sometimes sound harsh (effects of PD or meds maybe)?

But I overlook any flaws, the grumpies, the know-it-alls, the snubs, etc., because I do appreciate all the info, even if not necessarily always correct, and I understand we all have our bad days. Me--not a scientist, but a tech librarian with much experience & an MLS, so I keep up with PD info very well and think patients info sharing is valuable. But too hard for me to keyboard or sit too long at computer, so I limit my participation. Keeping active is paramount.

But if we really want to attract & encourage newcomers to keep the forum fresh & vital, be gentle & courteous!

[Bob Dawson]

[QUOTE=be gentle & courteous![/QUOTE]

But some of us don't always do courteous very well. For example, the weather forecast for tonight is -27 below zero. It gets dark at 4 PM. The wind is not stopping. My car won't start. The pipes are freezing. I am freezing. This is the time of year when Canadians start swinging wildly at shadows with their chainsaws, screaming. There are no courteous Canadians between October and May.

Also, as parkies get older, we get grumpier. In the final stages, a lot of parkies seem to get quite gruff.
I think you just have to say, "there he goes swinging his chainsaw again."

[Bob Dawson]

Originally Posted by Conductor71

... Personally, the groups who just want to.... tell us that Mirapex makes them horny all the time drive me batty.

Well what I don't like about it is that I've been swallowing industrial quantities of Mirapex since 2004, and I am most definitely NOT having that side effect, if you know what I am saying; I would be accepted in any monastery. I think I am getting ripped off. Everybody is having a great time in Vegas or in bed, I am taking the same drug and the only thing that happens is sometimes I can't stop talking.
It's a very poor substitute. I want my money back.

[olsen]

Hi Dianna, I did not notice any of your postings being too aggressive or annoying. I enjoy your straight forwardness. madelyn

[Conductor71]

Originally Posted by Bob Dawson

Well what I don't like about it is that I've been swallowing industrial quantities of Mirapex since 2004, and I am most definitely NOT having that side effect, if you know what I am saying; I would be accepted in any monastery. I think I am getting ripped off. Everybody is having a great time in Vegas or in bed, I am taking the same drug and the only thing that happens is sometimes I can't stop talking.
It's a very poor substitute. I want my money back.

Bob,

Yeah, all I got was a lot of yarn out of the deal, and not even the luxe yarn, just run of the mill wool/acrylic stuff. I want my money back. I want a tee that says

"I took Requip and all I got was this lousy yarn."

As for grumpy, I think that a lot of how your respond is reflective of you as a person whether you choose to make a public record of it is lack of impulse control from meds, IMHO.

I will admit that the research I do is sometimes fueled by too much dopamine, but I take forum "holidays" now and again to keep it real.

Laura

[indigogo]

Originally Posted by soccertese

this forum is what you want to make of it, i think the only taboo subjects are politics or trying to sell something.

all the "easy" stuff has been discussed, were're all hoping for a "cure" or better treatment, long timers have often educated themselves so subjects tend to be a little technical just as the world gets more technical. 10 years ago there were no pd gene therapy trials or affordable dna analysis to even discuss. a big deal then was a new agonist or maybe a CO-Q10 trial or maybe stem cells.

i don't understand a lot of what is posted here, your're not alone.

but please continue posting.

This really caught my attention. The old science was maybe not as "easy," but it definitely was simpler. Ten years ago, dopamine loss was everything, stem cells would cure it all - and we thought we knew what PD was. The experts promised a cure in 5-10 years; all we needed was more money for research.

Our world has really changed, hasn't it? The one thing that scared me and motivated my advocacy is worrying that those who hold our lives and futures in their hands did not understand what they are trying to cure; that they were sniffing around in all of the wrong places - mainly because they refused to talk to patients. It was like this huge game of "Marco Polo" where everyone was blindfolded, and the patients, blinders off, were not allowed in the pool.

Even if we don't have a cure, and may be even further away from one in many ways, closer in others, I feel pretty sure that those who count are now looking at the problem with open eyes. They are even using a flash light in dark corners by developing programs like the MJFF biomarkers study. And they are talking regularly to patients.

I feel more content that the research is going in the right direction; I'm satisfied that the right people are paying attention (Debi Brooks' continued posting is indicative of that; we have her ear - and that's a fact). I've learned enough that I've eradicated agonists from my life - along with their intense, creative/obsessive side effects (I miss that - but not enough to break open a new bottle!). Learned enough to know that my care is in my hands, that it never hurts to ask questions or state an opinion if you can back it up. I learned all this and more by coming here.

So, I guess our conversation has necessarily become more complex, just as the science has. But I still think something is missing in our old community; I think we have made it difficult for someone to wade into the middle of a conversation. We should make it easy, because not everyone is up to speed, or has lived as long with PD, or have been witness to the great changes in the scientific environment that have occurred over the last decade (I like to think we've had a hand in it). Honestly, 14 years post dx I thought I'd be dead by now; turns out I probably have a good twenty more ahead of me.

This is a pretty intimidating place. We should take the time to support new members and help them feel welcome. It will only make us stronger - and we really do have the time.