Simply one of those lovely moments

I don't do chat rooms, forums and communities. I am not anti-social, I'm not stuck up and I am not avoiding people like me. Its simply I have found them places in the past where I drown in the negativity, where positive energy is gobbled up by feeders and never returned, where I am oftern misunderstood. I have been criticized for being too positive, accused of not being ill enough and have generally had a poor experience. As an insomniac I have plenty I can do, art, write, work etc but sometimes I just want to hangout. However that has changed and I have found two places have made a big difference, this blog and one chat room.

Tonight I hung out with the finest :: Steve in a martian outfit, Linda with her insightful words and hotter than my home made chilli. Gary who sang to us sublimely, El who strummed guitar and a chorus of friends having a good time. Rare, oh yes, unexpected, indeed, wonderful yes truly. I didn't tell them but at one point I was weeping. A mixture of joy and sadness. Why all of us cannot behave in such a kindly fashion is beyond me, but now it doesn't matter, this group exists. For friendship, support, laughter and music PDchat Room is the place. Thanks to them, from me. Kindest C

29 Replies

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  • I have never even visited a chat room and would have no idea what to expect. But I might give this one a try. I have tried various blog sites and find this one suits me best. I very rarely post a question now as some of my previous posts have produced a negative reaction, which I never intended. However, I have made some good friends and gleaned a lot of useful information here, so maybe, just maybe a chat room could be the next step.

    Like you, I am a very positive person, not always confident, but positive where Parkinsons is concerned and my aim is to live my life as normally as I can. I am always trying to push the boundaries and not let this uninvited condition get in front of me. It is good to see you posting again. You seem to have been missing for a while.

    Sue

  • Missing but not lost easy to find ! Colleen Henderson-Heywood x

  • HH--would you please provide the link to the chat room. Thanks.

  • It is parkinsonschatroom.com

  • I'm one of the moderators there; "Jim A", also known as the parkie that lives down in a Swamp in South Caroline and wrestles with alligators and such. We're on-line 24-7 if anyone wants to stop by, and most nites from 8PM New York time there is a moderator there to help answer questions, have a bit of fun, or even play an old Frank Sinatra tune! We are all Parkies, and we try to take some of the fright out of it for those that are newly diagnosed, among others. Come see us!

  • Well, C H-H that's quite a name!! I would think that it keeps your spirits up!! I havve been accused of being a "Pollyanna" since I seem to b blessed (or cursed depending on your perspective) with the view from the positive. My Dx (besides the PD) includes, but is not limited to, Fibromyalgia, severe osteoarthritis, severe degenerative disc disease, I'm shriniking, I'm shrinking ,sleep apnea, a couple of malignancies and all the maladies of aging. I'm 72. So, some days I have just enough energy to lurk on these pages, not enough to respond. This may explain the typpos and misspellings, just cannot edit my words. All this to say I am cheering for your positive perspective, keep it up and if we meet on these pages let's keep the positivity flowing, could even share a funny or 2. Now I need a nap!!! see ya'

  • hi c and sue

    yes i hav enot tried a chat room either

    how do you go about it?

    lol JIll

    adn still smiling

    :-)

  • Go to parkinsonschatroom.com. It's a fun place, for sure!

  • Sorry a chat room? what is it and how do you access it ?

  • A parkinsons forum/chatroom i have found very positive is PD junction it was set up by a lovely lady called jacqui,i have been a member for 3 year now and i have find it friendly and positive and people are very knowledgable,if you have a query about anything pd related there is always someone with an answer,we are having a get together in oct which will be the third one.

  • Would you please provide the link to the site. Thanks.

  • Hi,i,m a bit of a novice pc wise but if you do a google search for(pd junction)you will find it.

  • Thanks.

  • ,Thanks for this link. As you know, I have joined and am just getting to grips with what it is all about. I am impressed with what I have seen so far, but have not ventured into the Chat Room yet.

  • Its a very friendly site court,some people find the chatting daunting but they will make you very welcome and they have a lot of knowledge about PD.

  • Court, come see us. I'm a moderator in the chatroom these folks are talking about. We are all Parkies ourselves, and our room is a great place to network with other Parkies, lift your spirits, and learn alot of new stuff about what's going on in the Parkinsons world. We'd love to have you!

    parkinsonschatroom.com

  • so, a virtual or an on line get together?

  • You betcha. It's ALWAYS a positive place. All of us moderators are parkies ourselves, so we are well aware of what one has to go thruogh on a daily basis. Sometimes we play music and even have parties. Sometimes we have guest speakers on the cutting edge of technology for Parkinsons come in, and alot of the time we just hang out and provide support for each other. We'd love to see you! parkinsonschatroom.com

  • We all leave blogs on here many of us are talking about our problems (which I realise this is what it is for) but we must all have our positive outlooks our hobbies our interests in life which perhaps we should all share.

    I wonder if this site really goes far enough and could extend to include all our good things in life. to me that is what makes it all worthwhile.

  • Agree. Andy is very good at that. Perhaps we should strive to emulate him. :-)

  • My favourite PD forum is neurotalk.psychcentral.com/... - full of intelligent people who post up all sorts of research, whether it is cutting egde scientific stuff or more alternative (like Aunt Bean with her fava beans - broad beans to us Brits). It's supportive and generally positive without being too gushy.

  • Where is PD Chat Room?

  • Thank you! Your greatest gift to us is your honesty. It shines bright like a star.

  • I like to laugh and forget about PD , parkinsonschatroom.com is the place to go , no negativeness and lots and lots of laughing...also they do presentations which are very informative the serious side of the room, and always music to rock to! Jilly

  • My favorite chat room is parkinsonschatroom.com it is very positive and has guest speakers. They are having a a guest physical therapist come inon the 12th of september and she wiii give Ideas and tell what can be done if you have some physical problems due t o PD also she has her e Dr in Physical therapy and specializes in neurological problems. Please feel free to come visit any tme she will be there from 7=8 central time pm. the psssword for admission is parkie see you there

  • I have to agree with Ms. C. First evening there I entered feeling fairly jaded about life in general and closed the chat room in the wee hours with a new friend. Amazing how quickly you can bond over a rare disease and a Duran Duran song. Steve and Linda are the perfect hosts. There is no negativity but people there will sympathize when it does suck and you need an ear or shoulder. I particularly like the guests they have on a regular basis like neuropsychologists and PWP in clinical trials. Unlike some of the more formal webinars you can actually talk with live people! I am a regular on NeuroTalk, which I love, but as Trixie Dee says it is not a unicorns and rainbows space. I still learn quite a bit in the PD chat room and whether I need levity, hugs, or a practical tips, it is all there. And then some.

  • Hey Conductor71, nice to see your face! :-)

  • I must be doing something wrong, could not sign on to the PDchat room. Any help?

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