As 30 + people have expressed interest in participating in a PWP HU online support group, I am scheduling the 1st one for this coming Sunday, September 20 at 6 PM GMT (Greenwich Mean Time.)
It’s not likely that we can pick one time that is everybody on the planet’s 1st choice, so this 1st meeting may spawn other groups such as a US group or a European group or an Australia/New Zealand group or a woman’s group or a balding men’s group or a Mucuna Pruriens group or whatever.
I will commit to initiating a Zoom meeting every Sunday at 6 PM GMT through October or until such time as we have changed times and/or worked out all format issues. (My wife and I have been using Google Hangouts for our book clubs, family and friends videoconferencing, so if somebody else has experience with or has moderated Zoom groups, please feel welcome to step in or give me tips and suggestions.)
I picked 6 PM GMT because it looks to me like it accommodates the most people.
The link below is an articulate map of all the time zones. If you find the time zone you’re in, follow it to the bottom of the map and it will tell you + or - how many hours away from GMT you are. For example, US Eastern Standard Time is GMT -5h = 1 PM, US Pacific Time is GMT -8h = 10 AM. If you live in Sweden, Norway, Denmark, border Germany, Switzerland, France, Italy, or Spain you’re GMT +1h. (You can enlarge the map which makes it very easy to find your own time zone and calculate your relationship to GMT.)
Like all group activity, we need structure and rules, so initially let’s adopt the HU code of conduct, i.e., no rude or disrespectful comments, no politics, no conspiracy theories, etc.
7 Tips for Making the Most of Online Support Groups
There are organizations that feel their online support groups are more viable than in person support groups for a few reasons such as time, no travel, no cost, etc. I am just getting the ball rolling. Groups can form based on any criteria you want. All other decisions will be based on broad consensus.
Even though 30+ have expressed interest so far, as the announcement is reposted, more may express interest. There is no way to know for sure how many people will plug-in until we actually have the 1st meeting(s.)
Some have suggested a subject matter, but for there to be a useful discussion around a particular subject, we would need to know that people will plug-in who are knowledgeable about that subject, so having a subject agenda may have to wait until it subjects can be publicized in advance. So, I thought for this 1st meeting, people might just introduce themselves, tell us a little bit about their journey with PD, what period of the day works best for them, and what their most pressing issue is, i.e., what subjects they are most interested in.
Since the people who check into the forum after this thread is posted may not learn about it, I will be reposting this thread several times.
Again, anyone with experience with Zoom is welcome to step in and set up and moderate or give me whatever tips and suggestions you can.
I believe if we keep at it until we work out the bugs, an online support group can be extremely valuable for hundreds of PWP.
marc
Written by
MBAnderson
To view profiles and participate in discussions please or .
There are, apparently, people who feel that an online support group would undermine the forum. I certainly do not want to divide people, so I have canceled it.
This isn't a good reason to not try it, but video conferencing (or an Audio call) with more than about 5 people turns into a shitfight, and you spend most of your time apologising for cutting someone off since you started your sentence half a second after they did. International latency isn't likely to help either.
Any more than that and it needs to be a presentation or structured meeting, in my experience.
I agree with you and Poo. Smaller groups are going to be more satisfying for obvious reasons, i.e., it allows each participant a lot more time to have their questions answered and issues discussed more thoroughly, but I'm not clear on how we get to small groups.
If the idea is real popular, it may be that each time zone is its own group or people may want to divide by gender or issue or time of day.
What suggestions do you have to get us to small groups?
marc
Just do it. You won't end up discussing anything groundbreaking relating to PD, it's not an efficient platform for that. It will just be a bit of banter. But given where everything is at the moment, that can only be a good thing.
I agree. I've had a couple private chats with people about it, but there is a contingent of people who disagree.
I feel if there is to be an online support group, at this point, it should only happen after a robust discussion, rather than me launching off into it. A robust discussion of the pros and cons will inform us as to whether or not it would actually undermine the forum.
I don't think it's going to undermine anything, and I applaud you for taking the initiative.
The advantage of a support group is that there is a lot more back and forth. Members feel some responsibility to help other members. A member raises a question. Others answer. The discussion proceeds until the questioner feels as if they had been helped. This cannot happen in HU forums where comments can come hours, or days, after entry. It can't.
I have hosted two ZOOM groups. The most important part is the invitation. You need to create a list (I use WORD) of emails of everyone you wish to invite. I put them in a simple paragraph, separated by commas. Then, ten minutes before start time, I copy the graph of addresses, open the Zoom program and start the meeting. I show up on screen. I then click on "participants" at bottom of screen and on "invite" on menu that comes up. It asks how, and I check "email." It creates an outgoing message on your email program with a link to your meeting. Paste the paragraph of addresses into to TO: line and hit "Send."
When participants get the email, they check the link and get sent to the waiting room. You click on their name to let them into the meeting.
Visual and audio feeds are different and it is not uncommon for only one to work. If you want me to go on about what you can do in those cases, let me know.
Please add my email to the list: jackedmonston@gmail.com
I have a subscription to Zoom which eliminates the 40-minute Limit. I would be willing to host the meeting physically, but you need to be the moderator. And I don’t want to be the collector/updated of email addresses. How do you plan to get them.? You haven’t asked for them yet.
I invite everyone who is interested to send me their email address via private message (if you posted it's possible I will not see that post) and I will put everyone in a folder and send the link you need to join on Sunday the 20th.
Thanks. I'll look at that. Our book club uses zoom and is gone well over 40 minutes. I think Google Hangouts has a limit of 25 and Google Meets has a limit of 250.
Healthunlocked or whoever runs it, probably have a paid video conference provider and they may be willing to provide a meeting room. It would remove all the complications and limitations of the free ones
I am not going to try to moderate conspiracy theories. I am asking that people abide by the very few rules I am going to put in place; no rude or disrespectful comments, no political comments, no anti-big pharma rants/no conspiracy theories.
I will mute any rants or anyone who cannot follow this minimal request.
In this 1st meeting I am just hoping we can create the space for everyone to get their feet wet. Introduce themselves, tell us a little bit about their journey with PD and if they so wish, to ask a question about their situation, tell us what they hope for the group or what suggestions they might have for upcoming meetings.
Apparently, invitations have to be done via email (I have to email you the link,) so if you want to join the group, send me your email address by private message.
Also, please post all comments and suggestions to the thread 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. "
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Recording available for NSB4PD webinar with Dr. Sackner-Bernstein on "Why I am optimistic that we might now have a Silver Bullet for PD"
Parkinson's and Mitohormesis - presentation by Dr. Matthew CL Phillips
