Peer Voluneer group

TommyT

What happened to the Peer Volunteer group? Seems like this message board was a lot more active when we were here!

Iris L.

There really are only two Peer Volunteers, Jo C and eagle mom.  There is no patient PV.  None of the boards are as active as they used to be.  I don't know why, because there is a wealth of knowledge and understanding here that isn't found elsewhere.

Iris

TommyT

Jo C and eagle mom. Where are you?

Michael Ellenbogen

It’s because this place sucks and AA refuses to make it better. And it saddens me to say many in management are my friends and refuse to do anything to make it better.

Michael Ellenbogen

 And trust me I get no pleasure to say this but I only do it to make it better for all of us.

Iris L.

There was one person who created havoc and created a hostile environment.  This place has never been the same since.  

Michael, what changes do you think AA could make to make the message board more available to patients?

Iris

Michael Ellenbogen

Iris the list is so long and I have personal disused tis with them many times. I even had the folks at MIT offer to help for free and that was turned down. So it was not the cost as they claim beuce I could have done it at no cost about 5 -8 yrs. ago. I so wish I did not have to say this because I really like the person in change but they lack the skills or drive or something else. I just don’t get it. If I had it my way those site would be the greatest site and people could get answers to the most changing problems after answering 3 questions. At least 95 percent accuracy. Just ask any younger person using this site. They probably refuse to use it because it sucks. Its only the older folks that I bet use this today. And because of that no one is demanding change.

Jo C.

 For Tom and other Members:

 Well, my goodness!  Hello there Tom!  It is really good to hear from you.   I do indeed remember  when you were one of the Peer Volunteers representing those who have a diagnosis of dementia.  You were with us when we had a large group of Peer Volunteers. I believe it was Social Worker, Jamie, who developed and first managed the dynamics and larger Peer Volunter group;  we have had other Social Workers leading us over time.  It has been a joy. 

Our very helpful and effective larger group of Peer Volunteers has not been kept in place.  I think it is very time consuming to do so, which makes it quite costly to have a professional staff member oversee the Peer Volunteer group; but while we were together, the energy and helpful dynamics were awesome.  Today, times are differnt.  All charitable groups are having to tighten their belts during this very unusual time of the pandemic and overall.  For most charities, operational costs are up and donations which enables the groups to function, are down.  Understandable.

 Yet; despitee the significant costs to keep it going, the Alzheimer's Assn. has been dedicated to continuing to support and provide this wonderfully helpful and supportive place.  This, for those who are with dementia or who are caregivers, is priceless and makes a huge difference in people's lives.  I do see that stated in many Posts written by Members.  We are all here in support of one another and that is never diminished.

As for why it may seem that there are not as many active Members as there has been, this is something that has always naturally gone up and down over time since the beginning; I have been here since about 2006.  No change.  I myself do indeed see we have new Members each day; and most of all,  retention of continuing Members has significantly grown; especially on the Spousal/Partner Forum which indicates the real time supportive effectiveness of the Board which is its intention .

When we Post, we are not only Posting to those who are active Members on the Board; we are also Posting to a huge number of individuals who do not actively join the Board, but who log on and read.  This is technically called, "Lurking," and is very important; it makes a difference in lives.

 I am delighted to see you Tom, please do keep in touch, we continue to support one another and to also be supported ourselves in many different ways both large and small.  It is a wonderful place; I continue to thank the Alzheimer's Assn. for continuing to provide and support this; that is no small thing.

 J.

  

  

jfkoc

Peer Volunteers.....job description????

Iris L.

Michael, I still don't know what changes could make this board better for patients.  Please tell me ONE change so I can get an idea.

Iris

Michael Ellenbogen

Since we are taking about pictures, I will give you an example of that. The file size is extremely limited in the size that can be uploaded. I t is based on requirements for over 15 years ago if not more. Because of that I am also unable to share most great documents that are shared with me from world leaders that would be so helpful to all of those here. But that’s the issue they don’t want us to help people here. They want to be the ones in control and share it on their time line which is usually weeks late or months late. I can not begin to tell you how many I brought this up personally to them. I have even asked them to add my files to be shared because it would not work for me and they also could not do it because of their limitations. What does that tell you?

TommyT

Michael,

You seem a bit upset with the management of this message board. Please contact me at my email. 

[email protected]

Michael Ellenbogen

I just sent you an email. You should probably delete yours here so no one else sees it.

Iris L.

I see.  That is not an issue for me.

Iris

Iris L.

Michael,you are in a special position.  I believe most PWDs are like me--they want to know what they have and what to do about it, in simple terms.  This is what I have gotten from the members here.  I learned about dementia and cognitive impairment and about different steps to address different concerns.  

I can no longer handle long complicated posts or links to complicated articles or proposals.  

I got a LOT out of the boards.  I am sorry for the newer members.

Iris

Cobalt

I struggle along with this forum because it is hard to use and very slow.  This is like an old fashioned bulletin board forum from 15 years ago.  Younger people who visit this site will try it out because many of us are desperate for any forum, anywhere.  But I can understand if there is not good retention of members when there is reduced activity and it doesn't have features that most people are expecting like those in other large social media sites.

There was a mention here from Michael about photos - yes, that is a great negative here.  The file size is too restrictive.  Many people here would benefit from having a photo gallery they could contribute to, and others could use the photo link from the gallery in answering some new questions asked. 

Or, of course, the photo file size could be updated as well as the speed of the forum response.  You could share more direct suggestions with image in comment.  But then the image is part of only your submissions, not searchable within the forum. People would just be trying to remember where the heck they saw the photo they need to share again. I don't think that even a member who posts photos would be able to search their own history.  

Another issue is that the "Help" links are limited and there are more issues newcomers need to get guidance on. There is no direct way to address a technical question to the appropriate person here.  The content of the Help links is written for the Internet of ten to 15 years ago and there needs to be an update to those using a variety of browsers and ISP's, Chromebooks, mobile devices, Macs, etc.

Iris L.

I see.  I do not use social media.  If this YOAD board isn't used because it isn't like social media, then I suppose it will die out.  However the Spouse/Partner board is very active and most of them are in an older age category.  They post photos.

Iris

Michael Ellenbogen

When you say it active compared to what this board that is so dead. Compared to boards out side of AA it is also dead. That is the problem and I say this with all the respect to all. If we ourselves don’t know any better and don’t ask for better it will never change.

jfkoc

Michael, when you get a chance would you please one or two of the boards you find useful.

sandwichone123

I suppose I could be considered "older," but I'm still working and consider myself in the middle. I have been active on the spouses board and find it helpful enough to be worth the frustrations.

I would like to be able to see if someone has responded to a thread I've posted on. I'd like to mark threads "read" or keep them available. I'd like something telling me how to find/use any features that do exist.

Aside from the boards, I'd also like to have a time posted for forums to be "open." Not that they're not available all the time, but a posted time would allow people to go in at the same time and get some use out of them.

Michael Ellenbogen

Sorry but I just saw this. That is part of the problem with this place as I get no notifications when a new message comes in to a thread because they lack filters.

 

 

As far as other places I don’t remember them but they were run by people and not organizations. I believe they were some kind of Facebook platform. They also had a private invitation to get in. 

eaglemom

Yes, eaglemom is here and posting. 

I do so appreciate everyone wanting this message board to work in a different / better / more efficient way. That has been discussed in previous meetings, believe me. However, we've not had any meeting since the Covid shutdown.

I simply don't know how to express the usefulness / need of these boards to administration. I have tried for years. They have provided a wealth of information to many many people. 

As for me I will continue to try and help / guide those whom as asking for help. This site has changed several times and right now I think we can just help each other by listening and being here for one another.

eaglemom

Michael Ellenbogen

Are there two super tech savvy people here that would join me on a conference call with my friend Harry at AA. I am thinking of trying to bring change once again but unfortunately I am not the person I use to be and need help from some tech savvy folks. Thanks

TommyT

II'm not super tech savvy but have used many programs. Also, wrote many back in the day of lotus. Anything I can do to help, I'm always available. I'm retired and living in this Senior Living facility. Bored to death!

Tom

tttminer7@ gmail.com

Michael Ellenbogen

I thank you for the offer Tom but I really need someone who understands the technology if I have this meeting so it can be experience the issues and recommendations. Even I use to be an expert but I can no longer count on my own skill set and want to insure I get it right. Thanks again.