NeuroTalk Support Groups - True Confessions of a Long-time Lurker

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/)

- - True Confessions of a Long-time Lurker (https://www.neurotalk.org/parkinson-s-disease/103166-true-confessions-time-lurker.html)

True Confessions of a Long-time Lurker

True Confessions of a Long Time Lurker

I've always been the type of person who takes half an hour to submerge myself in the cool water of a lake -- and then once in, I never want to get out because it feels so good.

Well, it's been no different for me with internet forums. After a year of wandering through various specialists offices and physical therapy suites without any symptom relief, I was diagnosed with Parkinson's Disease in 2001.

From then until Spring, 2009, I read Braintalk and then NeuroTalk and many other on-line forums and appreciated all that I learned from these valuable resources.

But I never removed my lurker's cloak of invisibility until I met "Stitcher" at a conference. She urged me to get involved in some way in the PD community----and to contribute time and energy to issues that matter to people with PD. She asked if I participated in a local support group. A few years into my PD journey, I did join one, but I found their interests and mine were not in sync. After each session I felt more alone rather than supported, and I'm normally happiest in a group. After discussing other well known forum posters from the old Braintalk, "Stitcher" wisely suggested that I plunge into the NT forum as a participant, not just as a lurking reader.

So I began to post and respond to others' posts when they triggered something in me. Other people responded with thanks, and that felt good. Quite quickly, I was part of an international community -- one that has been very supportive, positive and kind. (I know that things are not always this smooth. There have been past controversies which divided folks, but now it's good.)

Posting on-line lets me "speak" heart-to-heart with others who can empathize, not just sympathize. And working together, we often solve practical problems of living, as well as one can, with PD. Patient power is strong--by communicating with others via the internet, we can share solutions, offer information, organize and advocate for changes to benefit our whole PD community.

I believe that in many parts of the world these days, people find themselves in a "me" versus "we" situation. When I was a lurker, it was just "me." Now that I'm posting, I'm feel that I'm part of "we". In my experience, I've noticed that when I'm working with others, "we" usually make much better decisions for ourselves and the larger world than when I act independently.

Please take off your lurker's cloak and give it a try. Post a response; you may feel better emotionally and who knows -- it just may help change the world of PD.

The key thing is -- until you submerge yourself by posting , you'll still be chilly. The full warmth of the community can't be felt by a lurker, it only envelops you when you write and respond.

Come on in, the water is fine!

Violet Green

Yep have to agree ...

my faith in BT2 wavered a few months ago (see "the state of the board" thread if you must), but for shear educated comment combined with a compassionate understanding, this board is the best.

I have found the recent debate over US healthcare to be fascinating, and combine this with patient rights in clinical trials, pd sub types and the placebo effect and you have groundbraking stuff.

I encourage everyone who lurks to post, heck whatever you say its got to be better than me droning on about rugby, spheramine, the nhs, .....

Neil.

I, too, was diagnosed in 2001 after a year of ET. I found BrainTalk in about 1999 before officially becoming a PwP but after I knew it was true. I lurked for a long time, feeling that I had no information to share. I felt my ignorance and lack of experience made any contribution I might make invalid. Then there was a big dust up and people I had come to depend on for their comfort and advice threatened to leave the group. I was terrified of losing these anonymous mentors and posted as much. The responses were heartening and encouraging and made me give up lurking and begin contributing. I still don't know anyone who has PD with the exception of those I have met online. I never went to support groups, initially because I was afraid of looking at my future in the face, but later because I really don't play well with others.

When MGH shut down I dropped out of the community. Other life events intruded and I stayed away for several years. I have only just come back and only just realized how evey much I have missed this touchstone. I encourage you silent ones out there to come in and share the warmth. There are no dumb questions, no unwarranted feelings, no unshared fears. Post, opine, question or just send an encouragement to someone else. You will become addicted (great another thing to deal with) I promise.

Pam (who loves being a junior member)(makes me feel like a kid)

Violet green,
You started a good thread and hope it encourages people to join us here. I also want to take this opportunity to say THANK YOU to folks who post here.

I too was a silent listener for a while. At first, I didnot want to face the "reality of PD" by joining in the conversation, but the posts and people here made me feel comfortable enough to get off my cloak. Thanks to Rick, Ron and others, there were many discussions I could comfortably join in.

For me, posting on this forum was one way to accept PD. This forum helped me to deal with PD. I gained strength, support and knowledge and most of all, a lot about life from this forum. I thank you all, (specially regulars).

To all those silent readers, find some topic you are comfortable with and start posting! Just a warning...Once you start, its hard to stop!:)
G