Online support group is back on -- and here’s why.

[MBAnderson]

To those who are concerned it may undermine the forum, your concern is legitimate and reflects your commitment to the forum, but let’s please give it a chance. We can then look for evidence, because otherwise we would be killing something based on speculation that might be of value to many.

People participate in support groups to offer and seek support.

Let me share my own experience.

Until Covid, I used to drive a half-hour to the Minneapolis VA Hospital once a month to join in a veteran’s PWP support group. I made some good friends in that group, which has since been canceled, but with whom I still periodically meet (outside of course.)

I’ve met 4 HU people in person. Jim C. and I and our wives meet a couple times a year and I am so appreciative of that. I can’t tell you how nice it is to sit and talk with someone else with PD who really understands, because, as we all know, unless a person has PD, they cannot possibly know what it’s like.

An online support group will allow many to form real relationships with others. It is likely the same will happen, that is, some people will trade email addresses and phone numbers and over the course of a year or two, some will meet in person.

Perhaps, most important, a significant number, most likely the vast majority of PWP are socially isolated -- which cripples both the spirit and the body. This may offer their only or best opportunity for social engagement.

An online support group is almost like meeting in person and the better we know each other, the more effort we make to help each other, the stronger the bonds of the community.

marc

[ElliotGreen]

Hey Marc (and everyone),

I am one of the people who "liked" Fed1000's post in which they raised concerns about a Zoom meeting "competing" with HU.

I "liked" it because I thought it was a valid point worth considering.

I DIDN'T mean it as a vote against having a Zoom meeting. In fact, I felt a little bit sad when I saw that the initiative might be shut down because of it.

I spent a lot of time on Reddit, a platform where upvotes are (ideally) given to posts and comments which add to a discussion. It doesn't necessarily mean you agree with them 100%.

I can't speak for other people, but I just want to clarify my own "like".

[MBAnderson]

HU people have been wrestling with the wisdom of support groups for years. Here is a discussion that is 9 years old, difference being that their support groups were in person and time, travel, costs, and 'in person' were obstacles.

healthunlocked.com/parkinso...

[GymBag in reply to MBAnderson]

GOOD do it

[jombi]

Count me in

[Enidah]

Marc, I realized how absurdly dictatorial it is to say, no, you can’t meet. If it works out, great! My experience with zoom meetings has been that they were a little chaotic, but who knows.

[MBAnderson in reply to Enidah]

Enidah, Thank you. I would like to give it a chance and see if it harms the forum. If it does, we'll know.

I'm quite certain this 1st meeting will be a little more chaotic than we would like, in part because it will be my 1st time moderating Zoom, but I am practicing on my kids.

marc

[WinnieThePoo]

Rename it. Call it a virtual pub. Insist everyone has a drink with them (can obviously be a soft drink).

Or make it a coffee morning.

Drop the agenda. Drop the support group.

Just make it a social event

Absolute maximum 10 people

[Grumpy77 in reply to WinnieThePoo]

Oops virtual pub 😅... Ok...

So Why limit the VP to just 10 people... the more, the merrier 😁

[WinnieThePoo in reply to Grumpy77]

My experience of family chats and lockdown virtual pubs is it gets unworkable with more than 10

[MBAnderson in reply to WinnieThePoo]

Essentially, I don't feel that's for me to decide.

I, too, would like to find a format that allows everyone plenty of time and space to ask questions and talk, but I do want to start making format rules because (it would be a lose/lose situation for me and) it'll be more valuable to more people if everybody feels ownership, so I'd like to see a consensus decision for most all format issues.

In the 1st meeting I would like for everyone to state the number of participants they feel is ideal and we can figure it out from there.

There are a few ways to limit size such as defining groups by criteria -- bald men over 70 with one ear, but none of that is for me to decide.

Secondly, we want to know how many people are really interested and have no way of knowing that until we have a meeting without size constraints.

How about if we figure out size, etc. etc. etc. at future meetings?

[MBAnderson in reply to MBAnderson]

I have been thinking about ways to establish a format without weeks of back-and-forth is that I would post a questionnaire before the meeting for people to answer either during the meeting or in the forum.

[MBAnderson in reply to WinnieThePoo]

I agree. Do you have any suggestions how we can get to groups of 10?

[park_bear in reply to MBAnderson]

As I mentioned above, Zoom allows division of the room into smaller breakout groups.

That said, I participated in a zoom meeting with hundreds of participants that was not chaotic. The moderator selected those who are chosen to share with the group, one at a time. A possibility if things get chaotic.

[reedboat2]

I second what Whinnie said. Re-define it as a social occasion. No agenda. Just a group of friends. That way it can’t detract from anything. If it’s a large group we’ll spend the 2 hours introducing ourselves anyhow. And that will be ok too.

[MBAnderson in reply to reedboat2]

I like that.

[Pa-zzi69]

MBAnderson/Marc, thanks for initiating and spearheading the idea.

Until you mentioned a Zoom meeting I was unclear about what you had in mind; I assumed that, healthunlocked.com/parkinsonsmovement already was a forum for exchanges.

What I miss is the ability to readily enter in a deeper exchange off-line with a single member. As is, one can do it via a separate direct message. But even then, I've always sensed a reluctance on the part of members to identify themselves, starting with all using a nickname... and I wonder why that is... are we really so vulnerable to outsider-predators that we should limit our ability to communicate between each other ?

In the process of organizing Zoom meetings, some consideration to the fact that we hail from very distant places: I suspect the majority of members are based in the UK [can you confirm ?]. But many seem based in America: 8 hours time lag with California where I live relative to the UK... How about you [in St. Paul, Minnesota ?] or somebody else start a prototype within your [or his/her] base and then recommend the task to another, say a European primarily [but not exclusively] for Europeans to run in parallel ? ... with recordings available for all to view...

Marc P.

[MBAnderson in reply to Pa-zzi69]

Marc P. see my latest thread.

[SGlass]

Glad you are going to give it a try. “Virtual Pub”, love it. I learned in group dynamics stuff and experience that groups of 4 have maximum sharing cause almost all personality types are comfortable. Max size to have the most participation is 8. Ten for max group size is close enough. The idea of using Zoom breakout rooms is great. Just my two cents worth.

By the way I really miss the UK Pubs here in the US. Hey and this way my British Lab can come too. Thanks for the effort for trying this.

[Biensur]

Bravo! I'd love to participate from Italy!

[Dizlizz in reply to Biensur]

I’d love to participate from Australia!!

[Arlington7]

I'd like to participate from Canada!

[PalmSprings]

I am also in from Canada.

[MBAnderson]

Apparently, invitations have to be done via email, so if you want to join the group, send me your email address by private message.

Also, please move all comments and suggestions to the threat I started Sunday. The title of the threat is;

3 things re the HU ONLINE MEET & GREET/SOCIAL; Sunday, September 20, 6 PM Greenwich Mean Time.

It makes it a whole lot easier for me. Thank you.

[ElliotGreen in reply to MBAnderson]

Here's a hotlink to that thread.

healthunlocked.com/parkinso....

[alaynedellow]

Hi Marc. I'm a zoom newbie but if i have enough internet i would like to join in. Very rural french wi-fi here.