Hi. I was thinking that it’d be good if there was a chat/social place for interaction for PWP associated with this site. I have topics I think are worth discussing but are not clinical and don’t want to transgress that rule ie the post should be about PD. I’m not sure which website would host it though. Has anybody got any bright ideas?
social support system : Hi. I was thinking... - Cure Parkinson's
social support system
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jeeves19
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I would propose we open on HH a social PD community
What’s HH?
What topics would you suggest, jeeves19 ? HealthUnlocked might not be the best site for this
Unsure at this early stage. Just wish sometimes that I could discuss things other than PD?
What 'thing's Jeeves?A solution needs a requirement.
I've never felt there's anything I couldn't discuss here.
WhatsApp group?
@gomelgo, I think the intent is to remain anonymous as best we can. Otherwise, one might as well hop on a zoom call with Marc which I have heard is fun 👍I believe that the reason why many have chosen not to do so because of privacy concerns. Or they just want to be alone 🙇
I will volunteer to create an AI powered interactive website funded by a Kickstarter campaign if needed if I get enough interest.
Any takers??
Hi PD. So can you tell us a bit about that please? I actually don’t have any desire for anonymity but if it’s something you’ve noticed, then I’m happy to follow. Let us know about the kickstarter etc and if and how people would need to contribute both in terms of membership and financially. Feel free to message me privately if you’d like. Thanks for your interest.
You know, pdpatient mentioned the Zoom calls Marc is so kind to host. You would be welcome on those calls and we venture off of the PD topic sometimes.
Sure. I will DM you.
PD and gang. I think it’s probably sensible to kick this into touch sadly. I’d anticipated more people would have expressed an interest in something social but it doesn’t appear to be the case. Thanks for your interest and support. Best 😊
Don’t give up. It’s a good idea. My knowledge of the technical side is hazy at best. I would prefer a smaller group of people who were willing to share their thoughts about living with PD or just life generally and to have somewhere to go on the bad days. Please keep me posted if you decide to go ahead.
There are a lot of Facebook sites. I'm on a website that predates FB. Called Dead Runner Society, I joined in 1986, back when I was using a Commodore. It was set up originally for computer geeks. They talk about everything. I live outside of Westerly, RI. There's a FB group that talks about anything related to living in that town. There's a lot of small-town FB sites.
I’ve got to be honest, I don’t understand how Facebook works in relation to any sort of discussion? It was designed as site for sharing visual material I thought and is clumsy at showing and searching/organising comments and chat.
I think that this is a great idea, as long as the participants can remain anon. I've discussed many topics on this site which I wouldn't have discussed if it wasn't aon.
You can't beat a good pub. I'll see if I can persuade the Missus she is desperate to see Lichfield Cathedral again next month which would take us right past you.
I don't think it's that hard to run a forum bulletin board - although doing it well can soak up a lot of time.
We could pick and choose who we let in.
My primary objection is the same as for Marc's sessions - namely it fragments the discussions if some are members of a sub-group.
Just sayin... curepd2.com/
Oh dear. It's going to need a little TLC. The secure site is linked to a web page for glove building which I completely forgot about, and the unsecured site will set PC protection alarm bells going crazy
Nice one Rich. I look forward to hearing from you at some point. We regularly journey down to Stratford but it IS quite q drive and strangely now that direct a route from SC. Whats the interest in LC about? A Cathedral afficianado?
Sue is a classically trained soprano and has sung professionally at cathedrals in the UK and France. But she took a shine to Lichfield when we visited my old university (Aston) a few years ago
My visits to Lichfield had been the 12 pub crawl
My wife works there at King Edward's School as an English teacher.
Don’t give up on the idea. I was intrigued by the notion of expanding interactions of this site to include social concerns. On reading the responses, it sees clear there’s interest but people are cautiously waiting for leadership and a flesh out presentation of the “goals” or purpose of the site. I’m afraid that at this juncture there are about 100 different interpretations of what that site would look like. Perhaps it would be useful to give us examples of the kind of postings you might have in mind.
For me the site would be a place to share anonymously the joys and sorrows; the wins and defeats; the little victories and re adjustments to set backs in the context of my life as a PD patient Maybe a place where I could share a moment of utter despair and get a non judgmental word of support and understanding. Maybe what i need is a boost to my ego and share some of the glories of my pre- PD life.
I could do that now in many Facebook sites but what’s unique about the Heathlocked community is the integrity and trust I feel in this group.
I have noticed some version of compassionate posting s in this site but they are done shyly and lack entitlement.
Good luck, I usually enjoy your postings. You strike me as a cool and interesting person.
I suggest that we just ignore the rule .
The health benefits from open discussion are real if you give a proper definition to Parkinsons and not limit it to motor symptoms , depression , waiting for God, and many more topics come to mind . If the monitors dont like it they can say so but I dont remember any one being banned for it and as long as we keep it civil , no insults bad language or women .
Just kidding on that last one heheheh
Interesting idea. I was thinking of contacting the moderators actually to discuss options.
I hoped to find somewhere to talk about my daughter Erin's trip to work yesterday. This has nothing to do with health. While driving to work a guy was following her quite closely. She changed lanes and he followed. Then she got off the interstate and he followed. Then she sped up and ultimately a cop turned on the lights and fell in behind her. The guy turned off into a mall parking lot. When they stopped Erin yelled, "Did you see him? He's been harassing me." The cop asked, "Why didn't you call 911?" Erin responded, "You can do that" I didn't know I could do that!" The cop said, "Sure, we can track you from your phone. They'll know exactly where you are when you use your phone."
He didn't write her a ticket and instead followed her all the way to work.
The cop may be right or not. It really depends on the jurisdiction and the technology and the carrier. It's still in the nascent stages and there are technical and legal hurdles. The technology is at the point where you are no longer anonymous and you have to be able to make a 911 call while driving or rather fleeing away from a potential criminal. It is sad that it is not implemented yet because the technology exists and everyone has a GPS enabled cellphone. But it may not be available everywhere.
I wrote to the moderator yesterday asking advice on social issues but no response yet. Will let you know her response. Glad that Erin got to work though!
I am a little late to this sorry :-). So it looks like it’s not something that will happen. But if it gets off the ground or anything I can do let me know A. I need to message you and see what you’re up to after the DBS and all that so I’ll try to get going on that.
you too! I’ll email you. 
One of the problems is that Cure_Parkinsons is a sub-forum of Health_Unlocked. It is as such, one big unstructured list. One of the HiFi forums I belong to - HiFi Wigwam, in addition to a dozen or more groups like AudioVisual, Vinyl analogue etc has "The Wam Arms". This is a public bar, where any subject is allowed.
It even went a stage further. The Wam Arms allows any subject, but retains forum rules about swearing, consideration etc. In The Pub Carpark - anything goes...
You visit where you want and stay away from the places that dont interest you or offend you
Sounds sensible
Kaypeeoh has one post about cat pee, and another about his daughters GPS tracking and motoring police encounter, Psalm119:143 is giving God a boost and full-on evangelising (did you ever wonder why, if God is omniscient, it's necessary to tell him "trouble and distress have come upon me"? I can just see him trying to watch the rugby and thinking "will you shut the f up about your trouble and distress? I know, I know..."
I've talked about skiing, my daughters wedding and my beautiful granddaughter
And plenty of other random topics. What is it you think can't be discussed here?
I’m sure that I recall a couple of posters being reprimanded due to placing material that ‘wasn’t relevant’.
Ah yes. It became the covid forum and the Donald Trump forum. Definitely public bar stuff. I'm not sure I want the main forum clogged up with too much of that.
If it's in a reasonable measure, a witty remark, some comfort, sympathy, beautiful poems or pictures, a Bible verse, or a wise text from the Tao, a good joke or anecdotes from someone's life can also be a welcome diversion. However, if it becomes bothersome, like for me with too much evangelistic zeal, let's just kindly tell each other and try to respect that.
Interesting novel concept, just act like adults, it might work. If one person sees the beauty in something and shares it and others get to see it also and have some patients if they do not agree . The big test is religion because there is a history of disagreement. Evangelical can be in your face and there still is bad feelings between RC and Protestant and it seems that some people get drawn in to comment in a very strong opposing manner . We had a person here that was making some claims about PD being the result of transgressions of our ancestors . I tried to understand what he was saying but many here just could not tolerate it.
I think most people would see the benefit and agree with you Jeeves but only as long as the subject did not hit a personal sore spot. There are people here that will jump all over you if your sentences are not structured correctly. The best forum I was ever part of was "Boat Building" and as long as you had already or were now or hoped to in the future , build a boat then the requirements were met. Even then there were people banned .
The opportunity to openly discuss any idealogical subject is much reduced as it is no longer possible to even mention some subjects with out getting a response from the "WOKE" demanding your head and expressing their outrage at your suggestion that anything is different than what they say.
Example : CO2 is not a green house gas and global warming is a theory unproven and is bad science . The money and human resources being directed to reduce CO2 may accomplish something worthwhile or may be waste of effort that should have been spent on other concerns like increasing food production .
Now in an open forum you can imagine what such a position taken would draw as a response and the problem is that the above statement is in much need of real discussion, but can not be.
There are people just waiting to pounce on anyone with an opinion that is different than theirs . Look at the following statements.
The Pope is infallible.
The Holocaust
There are jobs / careers that are better done by women and others better done by men
There is not enough electrical generation and coal burning in old stations will be necessary for many years to come.
and my favorite
North American Indians should be treated as equals to everyone else.
And of course
President Donald Trump
Ka Boom
I wonder if anybody thinks of themselves as ‘woke’? Or so they not recognise themselves as such? Remember the Groucho line ‘I’d hate to be part of any group that would have someone like me as a member’. Such a super line.
I would be interested ; just swamped with work till last week.
Trying to do a course that will help towards setting up an onine health coaching for chronic disease service that I can do from home.
My need for anonymity here is I cant risk my out of the box views be known within my workplace .
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