Is there interest in the HU PWP online support group?

[MBAnderson]

Many of us participate online in book clubs, social groups and stay connected with family and friends thru Zoom and find it satisfying.

I posted this idea in a previous thread. So far, 15 people have indicated interest in participating.

I’ve gotten a few private messages pointing out that Zoom groups above 8 or 10 people become unwieldy, limiting participation. The only thing that can be done about that is to break it into 2 groups, perhaps one in the US and one in Europe which would allow each group to pick a time more convenient. (Any time zone we choose to try to cover 2 continents for one group is not going to be convenient for everyone.)

However, there is no way to know how many people are interested in this until 1) everyone knows about it and everyone who checks in on the forum after this thread was posted will have no way of knowing about it unless it is re-posted, and, 2) actually hold at least one and possibly more meetings and see how many people plug-in.

Therefore, just to get the ball rolling, I will initiate a HU PWP support group via Zoom video-conference Sunday, September 20, at 5 PM, UTC -2h. (Between now and the 20th, we can change this time if you all so choose.)

ZOOM TUTORIAL 2020 | How To Use Zoom STEP BY STEP For Beginners!

youtube.com/watch?v=QOUwumK...(Not working as expected?)

(There are many other tutorials on YouTube.)

Time Zone Map

upload.wikimedia.org/wikipe...

Warning - this 1st meeting will not likely go as smoothly as we would all envision or hope. I will commit to launching/initiating a Zoom group meeting every Sunday at a time to be chosen until some of the logistics gets sorted out.

For a support group to be effective, like any group activity, it requires structure and rules. To start with, we adopt the same code of behavior as does HU, i.e., no rude or disrespectful comments, no politics, no conspiracy theories, etc.

8 Characteristics to Look For in a Good Online Support Community

psychcentral.com/blog/8-cha...

Multiple Sclerosis Society’s description of their online support group.

main.nationalmssociety.org/...

This will evolve. Over the course of the 1st few meetings, it will get reshaped as needed so that it functions as a satisfying support group.

In this 1st meeting, we can just provide people an opportunity to introduce themselves, say little bit about their journey with PD, what’s important to them and what they would like to get out of the support group/how they would like to see the support group structured.

Many of you have a lot more familiarity with this than I do, so please feel welcome to step up and register your suggestions.

I’m going to re-post this thread a few times so that everybody knows about it.

marc

[Markbit]

I'll jump in to see how it runs. I'm based in Europe, but on the first sessions i'll stick to any timetable. Curious to talk to others about our issues.

Marco

[MBAnderson]

It might be that this spawns several small 'by invitation only' online support groups, say, for example, all the women in the UK or all the women on the (US) West Coast want to be have their own group or the young onset cohort want to have their own group, or curmudgeon caregivers, etc., etc.

my wife and I are in 2 book clubs and we do online tutoring once a day for 1 of our granddaughters and we have online dinner (where we eat in front of our monitors) (ha) with family members regularly.

I'm surprised it's actually very satisfying. The next best thing to real-life.

Too many PWP feel isolated. Joining a group might perk you up.

[Spottedtowhee in reply to MBAnderson]

I would like to join the group.

[reedboat2]

Hey Marc, thanks for moving forward with this. Are you planning on emailing zoom invitations or posting the meeting info on a message board? Couple suggestions: eliminate the “waiting room” feature, let folks enter on their own. Up to you but makes your job of hosting lots easier. Fifteen is not an unwieldy number in my experience. Over 20 it might be. Ask people to limit their introductions to 30 seconds or so. Are you gonna have an agenda or set a “theme” for the meeting. Again, up to you, but might help in keeping people focused. There are such things as “breakout rooms” but initially I’d keep it simple. I’ll DM you my email. Thanks again. I hope to see you on Zoom on the 20th.

[MBAnderson in reply to reedboat2]

Thank you for the excellent suggestions. Will do.

Approximately 20 people have expressed an interest, but we won't know how many will actually plug-in until we do it, so it is possible the 1st one will include more than 20 in which case, for the 2nd one, we can break into a US group and a European group.

I don't want to be the one to pick a subject for the 1st one, but instead invite people to offer subject and format suggestions. If before the 20th, if there is support for one issue or another, fine with me.

(If, for example, I picked 1) how to incorporate Mucuna Pruriens or 2) how to find the right dose for thiamine/B-1, it would not go very far unless we were sure that there would be people on the call who knew a lot about the subjects. So, when we get to the point of having subjects as an agenda, we will want to publicize that in advance.)

[reedboat2 in reply to MBAnderson]

Couple other Zoom features: there’s chat functionality during the meeting, and you can record the session on cloud and make it available to people later. Cheers - JG

[Painty23Painty]

Hi March

It's a great idea I'm not very familiar with Skype and zoom but I'm sure I can master it on my iPhone! I'm in the UK and HU is my only contact with PWP I'm still working so Imuch not too isolated! I shall watch this space and watch the Zoom tutorial

[pmmargo]

yes

It might be very important to PWP when they are in a low mood.

It is wonderful that you are even considering this.

Blessings to you for all the positive ways in which you help the community

[felixned]

I missed your 1st post somehow but like the idea . Count me in.

[Laceb]

I’m interested in joining as well. New to this website and procedures to use it.

[Rosenmu]

Sounds like a great idea, might be hit or miss for me since I work part time and usually on weekends, darn retail job lol. I would like to try tho. I like that so many people on here are very knowledgeable and veterans of PD, other PD boards have lots of folks not up to speed on PD.

[Jennyjenny2]

Excellent suggestion, Marc, but I’m afraid the time difference won’t work for us 😢

Also, I probably wouldn’t be able to contribute much...I’d be the one extracting as much info as I could from your collective brains. 😊

Jenny (Australia)

[MBAnderson in reply to Jennyjenny2]

It seems pretty clear were going to have to break into 2 or more groups to find the time zone that accommodates everyone. Maybe people in Australia and New Zealand are close enough to be a group?

[Vik38]

Hi, I love the idea. And depending on the time slot would love to take part. I'm in France so GMT-1. Have attended lots of zoom meetings with up to 80 people and it works pretty well! Often people attend without participating. The person who iniTiates the session manages/decides who talks by unmuting them. And the others can write, comment, ask questions in a chat. Brilliant idea!

[MBAnderson in reply to Vik38]

I may be wrong, as I look at the map, France is GMT +1???

We may want to break into 2 groups, a US group and European group, if not because there are too many and it is unwieldy, but to pick a time zone that is more convenient to everyone. Trying to find one time zone that spans both continents and would be the most desirable time is not likely.

There is a chat feature. People could type in , "not me" if they did not want to be un muted.

upload.wikimedia.org/wikipe...

[Vik38 in reply to MBAnderson]

You're right !!!! GMT + 1!! I always have to think hard when phoning family in the UK.

[jackedmonston]

Would like join but dont understand time. Can you giveGMT?

[MBAnderson]

Open the link below. It is a map of all the time zones. GMT is the pale green one exactly in the middle. It is designated 0. Each time zone to the west (left) is -1 hour. If you find New York City and follow that time zone to the very bottom of the map, it says, "-5 7:00." So, that is 5 hours earlier than 12 o'clock = 7 o'clock.

Find whatever time zone you are in and follow that down to the bottom of the map and it will tell you + or - however many hours away from GMT you are and tell you what time it is in your time zone presuming GMT is 12 o'clock.

For example, if we schedule the support group for 6 PM GMT, then US Eastern Standard Time is GMT -5h, (or 1 pm.) US Central Standard Time is -6h, (or 12 noon.) US Mountain Time is -7h, (or 11 AM.) and US Pacific Standard Time is -8h, (or 10 AM.)

Much of the rest of Western Europe, i.e., Sweden, Norway, Germany, France, Italy, and Spain are GMT +1h, (or 7 PM.) Most of the countries south of Finland are GMT +2h, (or 8 PM.)

Since Europeans are smarter than Americans, for any time zones I have not accounted for here, you can easily enough figure out your relationship to GMT.

upload.wikimedia.org/wikipe...