Our virtual pub took place today. I believe everybody enjoyed it. Next Sunday, 9/27, 2nd HU virtual gathering @ 5 PM London time.

[MBAnderson]

50+ people gave me their email addresses. 25 people plugged in. We got to introduce ourselves and put a face to the name.

Zoom has 4 breakout rooms. In order to allow more substantive conversation, next week, I thought I would send the 1st ten who plug-in to one breakout room and the 2nd 10 people who plug-in to a 2nd breakout room and so on. Or, do you prefer remaining a larger group? Please give me your feedback on this? (Or, we can segregate breakout rooms by other criteria.)

It did not go off without a hitch. 2 people did not get the link. My sincere apology. So sorry.

BootsOn had the excellent idea of my sending out an 'trial run' email during the week. That way, if you do not get the link (at that time,) you can email me your email address and I’ll have time to fix the problem. (You may want to put my email address in your address book so the notice does not go into your spam box.)

I will collect email addresses until Friday afternoon and will send out the 'trial run' email this coming Friday , 9/25 at 4 PM US Central standard Time.

I mentioned a link that Lena McCullough put on her Facebook page. The name of her FB page is Focused Ultrasound for Parkinson’s. This link includes 8 videos, 1 of which is Dr. Laurie Michley interviewing Dr. Jeanmonod. 5 of the videos are conducted by the DBS neurosurgeon Dr. Michele Tagliati - Director of the Movement Disorders Program at Cedars Sinai. These videos are part of Dr. Michely’s online school and cost $10 to view them, but for those of you who are considering 1 of these procedures as an option, they are informative.

pd-school.teachable.com/cou...

For those of you who did attend, I welcome any feedback,

I'm going to create a 2nd meeting - if there is interest - to occur on Saturday (time to be announced) for people in Australia, New Zealand and those who missed the meeting because of church/synagogue/mosque services on Sunday. (This will provide everybody more flexibility.) So, if those of you in Australia and New Zealand and any others are interested, please send me a private message with your email address included.

Thank you.

marc

[Pa-zzi69]

I suggest we continue with the larger group for a while, to allow a novice like myself to get his/her bearings, may be for the next 5 sessions.

If not, we could have break-out rooms by therapy [Thiamine, Sinemet, DBS and FUS, Supplements, All other therapies]; the therapy topic could vary from one week to the next

Q: Would it be practical to give followers of a given member the opportunity to congregate with the latter [if the latter is willing] ?...

Q: How easy would it be to hop from one room to another ?

Marc Pasturel

[MBAnderson in reply to Pa-zzi69]

Thank you for the feedback, Marc. I've gotten a couple other feedbacks suggesting they like the large group.

That's a good idea, i.e., perhaps we can figure out a way where people can choose to be in one room which is a larger group or 1 of the other rooms which is a smaller group.

I hope others weigh in with their feedback/suggestions.

[reedboat2 in reply to MBAnderson]

I suggest breakout rooms by topic, which could be a therapeutic modality, such as FUS, or it could be something else. We could brainstorm and probably come up with quite a list.

[MBAnderson in reply to reedboat2]

One thing we have to be careful with is that if we're going to create a breakout room by a subject, we will want to know in advance that someone with knowledge on that subject will be participating.

We don't want to, for example, publicize a meeting about Mucuna or FUS and have no one in the meeting who is able to answer questions.

[Despe in reply to reedboat2]

The FUS group will be very small, IMHO. Unless there are people who are interested in the procedure and would like to find out more detailed information.

[reedboat2]

Just one suggestion for a topic for a future meeting, either with the full group or in breakout room. I am interested in Wriga’s research on Sulforaphane, which he briefly touched on this morning. I have some experience with that substance, and would love to delve deeper.

[MBAnderson in reply to reedboat2]

I'll send him an email and ask if he can be available next Sunday.

Are you there, Albert?

[alaynedellow]

Thank you Marc was lovely to meet you all. I happy for flexible smaller chats or larger one. Think everyone just seemed happy to meet was nice to see some people doing really well on long diagnosis.

[Rosenmu]

I too was happy to just congregate and am very flexible with what happens, I'm interested in the sulforaphane discussion as well but am not of a mindset to be able to follow the more technical side of the discussion.

Trish

[glenandgerry]

Thank you so much Marc for organising yesterday's get together on Zoom. Glen and I really enjoyed meeting you all, and have the same thoughts as Alayne.

We, too would like to hear more from Wriga about Sulforaphane as well as any new research on grapefruit juice (which Glen has been taking every day for many months).

[WinnieThePoo]

I thought it worked much better than expected - given my experience with lockdown virtual bars, which got confused and frustrating with only 10 or so participants. This was in large part I think due to everyones beautiful manners, and in turn due to a format where everyone introduced themselves in turn at your request. That was great - but not really sustainable for the long term

When a group of friends meet and banter online, it can get more chaotic. I'll stop there and make one reply per topic

[WinnieThePoo]

I used zoom for the first time, downloading the app when prompted having clicked on your link, on my android tablet. If functionality is significantly different on a PC I could use my laptop (normally it is plugged into a docking station, at my side, so I use a monitor and mouse and keyboard on my desk. This means the laptop webcam has a view of my ear and the office ceiling lights. I know, I know, probably preferable ...). But I can unplug it and stick it on the desk

I was learning the android app functionality on the fly, and mostly I think OK. But I couldnt get a screen with small windows of every participant. I could get one person, or 4 on a screen. This was fine for your serial introductions, but after that I lost track of who was where.

Once a discussion gets going, the android system as I used it would be strained

Is it different on a PC?

[Godiv in reply to WinnieThePoo]

I had the same issue on my iPhone: I could see four people and that was it. And those four people never changed. I know on my computer you can see everybody in little windows. Whoever speaks pops up in a larger window. I don’t know if there’s a way to change it on the phone and tablet operating systems or not but I think I’ll probably just stop to go for the computer next time.

[WinnieThePoo in reply to Godiv]

I could scroll to the next 4 people by swiping the screen, (or there were some barely visible dots near the bottom of the screen, and if your hand was steady enough you could press the next dot) Worked fine going serially from one to the next but would have been very confusing in a discussion. Maybe i'll unplug and move the laptop.

[Godiv in reply to WinnieThePoo]

OK thank you. I’m always afraid of pressing things due to potential disaster.😳

[WinnieThePoo]

I am much happier with the idea of a virtual bar, informal chat - personally. The more formal conference / webinar I find less appealing, although clearly if we're chatting its mostly going to be about Parkinsons stuff

I share Fed1000 (I think) concern about creating a forum within a forum. I have been approached privately by a few people, including Albert (Wriga) to participate in off-forum stuff, and my reply is always that I prefer to participate publicly in the general forum, for the benefit, or otherwise of all.

I have no objection to others running private discussions, but its not how I participate in HU

Again - informal "chats" I suspect will prove more challenging as numbers increase, but count me in for those

[MBAnderson in reply to WinnieThePoo]

I believe the online gathering will take shape over time and serve a different purpose than the forum.

I think PWP feel isolation because no one else they talk to has PD, so it's nice to meet, talk, and socialize with people who fully understand.

I don't know what shape the online social will take, but I'd like to let it continue and believe that as people participate, they will form opinions on how they would like it formatted.

Zoom offers 4 breakout rooms so we can accommodate 4 different options. So, for example, if a lot of people, like yourself, want to be in smaller groups, they can be in a separate room.

I think a computer monitors can work best. I had 25 people on my monitor simultaneously, with each picture being approximately 2 inches high and 3 inches wide so you really can see people. And whoever was speaking, their picture was highlighted with a bright yellow border. I'm sure that as we all become more familiar with Zoom, will make it work better with each successive meeting.

Anyway, I'm interested to see how it evolves over the next several meetings.

Thank you for your feedback. Hopefully others will chime in with their feedback, too.

[WinnieThePoo in reply to MBAnderson]

You've certainly started something. I might look into a clip-on webcam for my monitor, so I can use my desktop arrangement.

I'm happy with large crowds. Only Covid is stopping me going to the "repas avant le match" at Quillan rugby club for a home match. Usually about 100 people for standing apero's and then a sit-down meal. (I recognise I am probably the most recently diagnosed, and so will find it different further down the road to be travelled)

My experience of trying to replicate the rugby social , with messenger group video chats was that it got messy

It'll be interesting to see how it works out. You did a great job with Sundays. Maybe it just needs you running it instead of the free-for-all we had at my lockdown parties

[MBAnderson in reply to WinnieThePoo]

That's the arrangement I have, i.e., monitor and keyboard connected to my laptop on my desk. Throw in some auxiliary speakers and clip a camera to the top of the monitor and it works great.

Probably we are more polite then rugby fans. Don't you have rugby riots in Europe or is that mostly in the UK?

I don't pay that much attention to sports, although being from northern climes, I do follow hockey, but rioting over rugby is like a different planet.

[WinnieThePoo in reply to MBAnderson]

I think you're confusing rugby with soccer (or football, as it's known outside the USA). The saying is 'football is a game for gentlemen played by hooligans, and rugby union is a game for hooligans played by gentlemen'

No rugby riots! Although the "WAGS" at Quillan rugby club have expanded my colloquial vocabulary!

[unsinkable]

You did an awesome job of hosting Marc....thank-you

[PalmSprings]

One of the things I loved about the virtual pub was the diversity of people. People from different countries, different ages, different symptoms, different courses of treatment and different stages of what we have in common, Parkinson’s. I don’t want to miss anything, any advice, any encouragement, any discussion or argument (?). You never know when you will glean something that may pertain to your stage or presentation of the disease. Thanks Marc! Cheers All; you all are invaluable to me!

[Despe]

Marc, I am so sorry I missed the virtual gathering, but as I messaged you, it was my fault.

Were there any care spouses who participated? I will make the next one, for sure.

[MBAnderson in reply to Despe]

yes, and I believe more were a few lurking about, my wife included. By the way, she was surprised and really impressed with how courageous & strong so many people are.

[cmc2]

Marc, Thanks again for all the hard work getting this set up.I really thought that it was helpful and I'm looking forward to this coming Sunday. I am flexible on format but probably would prefer one meeting for now ...I don't want to miss anything!

Chrissy