Some have suggested we add agenda items to our Zoom meetings. How do you feel about that & do you have any suggested items?

[MBAnderson]

Examples might be;

a. What bothers you most about your doctor or your PD medical care?

b, Do you feel PWP should tell their employer?

c. Are you doing anything to prepare for a hospitalization with COVID?

d. Do you have an interest in trying Mucuna Pruriens?

e. What do you do for sleep?

f. What do you do for constipation?

g. What do you do for _____________?

h. What is the status of stem cell therapy?

And/or having a 3 minute check-in for each person on what 's on their mind since last meeting.

Or is this too structured for this group?

What do you think?

Meeting schedule:

Saturdays 7:00 PM - 8:30 PM, US Central Standard Time

Sundays 11:00 AM - 12:PM , U.S. Census Standard Time

[kevowpd]

i. When to start levodopa 😜

[MBAnderson in reply to kevowpd]

Good one.

[Buckholt in reply to MBAnderson]

Is it me or is there a general reluctance to talk about Levodopa dosing?

The one thing everyone probably wants to know about each other, but do not always know, is how much we all take. However people don’t seem keen to share openly how much Levodopa they use and when . Why? Is it because there is an assumption that the more a person takes the more they have progressed, and hesitancy to disclose avoids the comparison? (And if X is taking less than me then he must be doing better?)

Then there’s the sort of macho approach of taking Mucuna instead, which implies that the person is somehow doing better and not yet “ bad enough “ to go on the real stuff.

[Buckholt in reply to Buckholt]

I know myself that I could find another tablet helpful, but I hold off in an attempt to kid myself that my symptoms haven’t changed. This strategy is physically unhelpful but psychologically useful.

[MBAnderson in reply to Buckholt]

I think a lot of the reason there isn't more talk about C/L dosing is because it is such an individual thing. PWP are hesitant to make recommendations knowing it is a shot in the dark.

[Smittybear7]

Which specialist is best equipped to diagnose Parkinsonism / Parkinson's? Neurologist, movement disorders specialist etc?When to start Levodopa?

What does Levodopa help?

How do you get off of Levodopa if you have side effects ?

How long does it take to see results?

If you stop taking medication do your symptoms get worse or stay the same.?

Thanks for your help

[MBAnderson in reply to Smittybear7]

more good ones.

[cmc2 in reply to MBAnderson]

I think it's a good idea to have a bit of an agenda or 3 minute check in with each person. keeps us focused! Other questions . Which supplements do you find most helpful? Which gadgets have you tried ? Any success? Tips to keep positive?

Chrissy

[WinnieThePoo]

I think a bit of structure is probably a good idea. Although you can end up feeling a bit lost if you know nothing about a subject

Personal experience topics like - "what do you do for sleep" work well

"what is the status of stem cell research" probably needs a guest expert - at least , most people will be googling like crazy if they are going to try to answer

What are your favourite prospects for new or better therapies? would be one I'd be interested in

Moving the time away from Sues jacuzzi and cocktail hour would help - and maybe cut the meetings to an hour or even 45 minutes. Some can drag, or get hi-jacked by a single theme

Do I take it you are fit and returning as host?

[MBAnderson in reply to WinnieThePoo]

Richard,

Thank you for your good ideas.

You make a good point and I have been concerned that some agenda items will require someone knowledgeable on the subject and I don't want to get into the business of having to hunt down and schedule speakers, so the agenda items will have to be those limited by the experiences of the group.

I am fit to resume hosting, except for I am moving into an Airbnb this weekend and have to be sure I have Internet service before I take it back over from Frank.

Frank Mundo - thank you, thank you for stepping in.

Marc

[WinnieThePoo in reply to MBAnderson]

I hope the move goes well. From the few I attended Frank has done a great job. It's just good to know you're recovered and fit for purpose.

I hope you have better luck with networks than I do. Our landline can get slow around 6.00 here (when the meetings start) and I have a 4g router I have tried switching to when everything goes slow or freezes, but once I "leave" a meeting I never seem to be able to get back in

I'm not usually this hopeless with technology

🤔

[Zella23]

I think some structure would be a great idea and some of the above ideas are great. An agenda with a structure helps with focusing the group. New PD meds and whether they’re an improvement on the older ones.

[kathy775]

I'd love to have my dad sit in and listen to the discussion on Zoom on Saturdays 7:00 PM - 8:30 PM, US CST if possible ... that would be 9 a.m. his time in Japan. Please let me know how he can join in on the Zoom call in future? Many thanks, Kathy

[MBAnderson in reply to kathy775]

He is welcome to sit in. Send me his email address as a private message.

[LindaP50]

My two cents even though I haven't tried to the Zoom yet. I'll let my hubby know about the Zoom.

Me, I like some structure. For example with my monthly book club, we have a print out of questions to be discussed specific to the book and we also enjoy just chatting about the book in an open discussion. This way, everyone is happy.

[BootsOn]

I feel an agenda would be good and there's no harm in trying it to see what we all think. So long as we still keep our happy, friendly atmosphere

[PalmSprings]

Sounds like a good idea. I will try and think of questions to contribute.

[Oceanwind]

I like the idea of both a focussed and an unstructured part - and if we could include both in one session, that would be brilliant!On HU we get to know each other through comments and feel connected as support friends, so it is nice when we can get to know each other and check in with each other (like at a social gathering) and then perhaps after that, have a focussed part or maybe even a guest speaker. Or, we could reverse that and have a guest speaker at the start and afterwords have some casual discussion.

[Redginger]

We have not been able to attend any of the zoom meetings yet, but I think it would be helpful to have a heads up as to what might be discussed. For instance, I got the impression that the last meeting might have been about the broccoli seed extract tea protocol, but we did not see the email until too late, and my husband has now expressed interest in trying that. However, it scheduling topics would give someone more work to do, I would not wish that on anyone. Thanks to you, Marc, for keeping this going.

[Biensur]

Perhaps questions regarding exercise. Does exercise alleviate or help with symptoms? What kind of exercise? How often?