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How would you change AlzConnected if you could?
markus8174
Posted: Sunday, January 6, 2019 7:56 PM
Joined: 1/25/2018
Posts: 287


I've made several suggestions to the admin/moderators. I'm just one voice of many. There may be no way to improve this board without screwing up what it does well now. I was just wondering if other members have used other forums that had useful features that you would like to see here. This isn't caregiver related, so I started in in musings.
Jim Broede
Posted: Sunday, January 6, 2019 7:59 PM
Joined: 12/22/2011
Posts: 5318


Change is a big part of life. Always will be. --Jim
jfkoc
Posted: Sunday, January 6, 2019 8:35 PM
Joined: 12/4/2011
Posts: 16019


I would  redo the search functions including archives and "next" which really means previous
markus8174
Posted: Monday, January 7, 2019 5:09 AM
Joined: 1/25/2018
Posts: 287


Among other things I would like to see a "like" button with each reply. It would give you an opportunity to acknowledge that a post was helpful when you have nothing new to add to the conversation. A persons "likes" could be tallied in their profile. A bit of positive reinforcement would encourage more participation. Too many threads die with 3 or 4 replies. I'd like to see a "potpourri" or "anything else" category. "Musings"  is as close as we get and it is rarely read by most members. I agree a better search function would be worthwhile. You shouldn't have to go through Google to see what a certain poster has offered in the past.
markus8174
Posted: Monday, January 7, 2019 5:26 AM
Joined: 1/25/2018
Posts: 287


I would also like to see the site better marketed. I found it quite by accident. I don't know what is costs, but when someone searches "Dementia" or "Alzheimer's" on Google or Yahoo a side add could call attention to this forum. We need more participants. From my experience their aren't more than 20 regular posters throughout this site. Some join for one question then leave. I'd bet there are many out there that could benefit from this site if they just knew it existed. If it is a money issue, the administrators could start a  program that allows members to pay a one time or annual fee-NOT REQUIRED- but one that may come with some acknowledgement- like a star next to your screen name or such. I'd be willing if it would help expand the site. We have the "donate" banner button, but if there is a need, a more aggressive request could be developed.
Iris L.
Posted: Wednesday, January 9, 2019 1:05 AM
Joined: 12/15/2011
Posts: 15562


There used to be many more posters.  Up to 50 threads on the Caregiver board each day.  There used to be more Peer Volunteers.  This used to be the best site on the entire internet to learn about what to do for PWDs.  The outside world has nothing for us patients.  We learned what we needed from our peers and the wonderful care partners who share their experience.  I wouldn't be where I am today without the members.  The best advice is given here.  It truly is a shame that more use is not made of these boards.

Iris L.


Jim Broede
Posted: Wednesday, January 9, 2019 3:08 AM
Joined: 12/22/2011
Posts: 5318


Indeed, Markus is a thinker. --Jim
Underdog
Posted: Wednesday, January 9, 2019 6:57 PM
Joined: 6/25/2017
Posts: 312


Here's the deal, the major problem is the ancient nature of the forum's design. There is just so much that you can't do with this site. So many people are now used to forums that have convenient features.

If you can't navigate it comfortably, you just move on.

You can't post pictures without great difficulty and they aren't sized to where they can be viewed in the format intended. No like buttons has been mentioned. That's like forum 101.

There are entire sections that are ignored for lack of interest. Couldn't relevant subjects be found? They need to be changed and updated according to what is needed.

The masses are more sophisticated and the relevance of the issues that the members are going through need to be current. Visitors are not only going to want to read about Alzheimer's and dementia but are going to want to know how brain illnesses and damage relate to other illnesses like Borderline Personality Disorder, Schizophrenia and Bi-Polar.

You may not see the association, but mental health issues are linked to each other in ways that can't be obviously seen. Families and social groups don't necessarily know the distinctions in mental illnesses. Also, having something personal happen to you in the area of mental health makes you curious about the other disorders and how they connect.

But also you would need more savvy moderators that could understand the new viewership. If you look around at the people who depend on internet for social interaction, you will see they are of a more forward thinking mentality (Their attention span and sense of humor for example).Brain diseases are not just for people in their 80's anymore. I doubt there are many that can relate to the word senility.

I'm in my sixties but I feel like a teenager here. You gotta keep up with the times.

 


ruthmendez
Posted: Wednesday, January 9, 2019 9:53 PM
Joined: 9/8/2017
Posts: 1721


I would like a wish button!! So that every time I click on it all my wishes and dreams come true!! And, and...a lottery button too! One that when you click it...you get more chances to win the big one...a free button! That's all I ask!
Iris L.
Posted: Wednesday, January 9, 2019 9:55 PM
Joined: 12/15/2011
Posts: 15562


Despite some design flaws that may exist, these boards are still an invaluable resource providing information and support that are not available anywhere else.  What makes the boards work is the sharing between members who have actually been in the trenches of dementia living and dementia caregiving.  The experienced members here know more than most of the professionals that we pay to advise us.  That has been my experience.

FWIW, every time the board is updated, some members get locked out and they never return.

Iris


Underdog
Posted: Wednesday, January 9, 2019 11:45 PM
Joined: 6/25/2017
Posts: 312


Well, it's said that the seven last words of any business is, "It's never been done that way before."

I guess you're thinking some people will leave and not be served, but there are people out there that will never be able to join and be served.

If the trajectory of the site is satisfactory, then this is an unnecessary thread.


Andy61
Posted: Thursday, January 10, 2019 11:47 AM
Joined: 12/17/2018
Posts: 20


I first joined this forum under a different name over 2 years ago.

I like all the suggestions already given.

I would like to add that “Musings” section seldom if ever has anything to do with PWD or caregivers. This section also has the most posts removed by the mods. I have seen several folks leave this forum, including me over some of the posts in Musings.

What purpose does this section serve? How does it help folks stuggling?

Maybe I look at this in the wrong way, and this section is simply for trying to see how creative or outlandish you can be on posting?

Just my two cents worth.

Have a great New Year. 


chrisp1653
Posted: Thursday, January 10, 2019 12:46 PM
Joined: 1/23/2017
Posts: 1110


I suppose that some change might be good here, although it has seemed to me that most changes that take place on websites mean that something I used to be able to do easily is now more difficult, or even impossible. Andy, thanks for your 2 cents, but I think that what you're saying is that Musings doesn't do what you want it to. And as for getting with the times, not everyone wants or needs the latest and greatest in technology. I bring my own set of problems here, as Barbara's caregiver, and I look for ways to help both of us cope. I am aware that the Musings venue has been a problem for some in the past, but it has also been of great value.

I think I'll stand with Iris on this one.


chrisp1653
Posted: Thursday, January 10, 2019 12:49 PM
Joined: 1/23/2017
Posts: 1110


I would like to see an " Approved By Ruth " button.
ruthmendez
Posted: Thursday, January 10, 2019 1:08 PM
Joined: 9/8/2017
Posts: 1721


chrisp1653 wrote:
I would like to see an " Approved By Ruth " button.

I approve this message.

CLICK



Andy61
Posted: Thursday, January 10, 2019 2:20 PM
Joined: 12/17/2018
Posts: 20


chrisp1653 wrote:

I suppose that some change might be good here, although it has seemed to me that most changes that take place on websites mean that something I used to be able to do easily is now more difficult, or even impossible. Andy, thanks for your 2 cents, but I think that what you're saying is that Musings doesn't do what you want it to. And as for getting with the times, not everyone wants or needs the latest and greatest in technology. I bring my own set of problems here, as Barbara's caregiver, and I look for ways to help both of us cope. I am aware that the Musings venue has been a problem for some in the past, but it has also been of great value.

I think I'll stand with Iris on this one.

Not really. Plus, who cares what I want, whats important is what those who are hurting want. Again, how does this section help in dealing with dementia? Lets be honest here, approx 90 percent of all posting is done by one person, and seldom if ever are their comments geared towards dementia.

I will say that the other 2 or 3 people who do post on here, apparently my concerns are really not a big deal, so it might just be me, and Im ok with that. 

Just voicing my opinion.

 



w/e
Posted: Thursday, January 10, 2019 2:51 PM
Joined: 3/7/2012
Posts: 1635


I have no idea on how to technologically improve AlzConnected. I am not computer savvy.  

Musings... an ocean of possibilities. And the possibilities are as infinite as our imagination. And our willingness to accept others and respect their points of view.

The muses in Greek mythology were the nine goddesses, daughters of Zeus, who presided over the Arts, Music, Literature, Science. I am glad that AlzConnected has provided us with this musing board for us to have an opportunity to ponder, to meditate, to muse about the one and the many.

When I click on Musings, I enter the e-realm of the muses. And I encounter each of you. In your own unique way. When I electronically sign on, I enter a mouseion. A place of study and introspection. I bow my head. and I read attentively, thoroughly, carefully what each one of you, my muses, have chosen to share. For me, you are a source of inspiration. And guidance. In all fronts.

 I do not write often. But I've been visiting this Agora for many years. And, the gods willing, I will continue to circulate among you, for many years to come.

You are people of great courage. Special human beings in an odyssey. Heroic people. Beautiful. Warm. Caring humans. Good people. And an example to me.


SallyL
Posted: Thursday, January 10, 2019 6:34 PM
Joined: 6/13/2016
Posts: 23


chrisp1653 said "I bring my own set of problems here, as Barbara's caregiver, and I look for ways to help both of us cope."

Well said. I think that is the basic and most valuable function of the alzconnected board -- providing ways to help us cope, through connecting with others. The boards do that for me.

And...there could be a simple search function.



chrisp1653
Posted: Thursday, January 10, 2019 8:04 PM
Joined: 1/23/2017
Posts: 1110


I'm imagining a search engine with dementia. Wait a minute... that's the way most search engines are anyway !
MissHer
Posted: Thursday, January 10, 2019 9:51 PM
Joined: 11/13/2014
Posts: 2003


My 1/2 cents worth. The reason I like musings is because you don't have to talk about dementia all of the time. You can do that on the other forums. Musings is a nice distraction from the 24/7/365 thinking about dementia that I did while mom was alive.
Jim Broede
Posted: Thursday, January 10, 2019 11:28 PM
Joined: 12/22/2011
Posts: 5318


MissHer wrote:
My 1/2 cents worth. The reason I like musings is because you don't have to talk about dementia all of the time. You can do that on the other forums. Musings is a nice distraction from the 24/7/365 thinking about dementia that I did while mom was alive.

 

Glory Hallelujah! You couldn't say it better, Miss Her. You and I are of like mind. We all  need a break from rigidity. That's why I came to Musings. To divert my mind from the rigors of care-giving. To think wonderful thoughts. About the goodness of life. --Jim

 


Andy61
Posted: Friday, January 11, 2019 6:49 AM
Joined: 12/17/2018
Posts: 20


MissHer wrote:
My 1/2 cents worth. The reason I like musings is because you don't have to talk about dementia all of the time. You can do that on the other forums. Musings is a nice distraction from the 24/7/365 thinking about dementia that I did while mom was alive.

 

Miss her - Good point I had not thought of. A good distraction from the reality all are facing.
Thanks, you made me see this in a different light.

Miss Her


just exhibit Love
Posted: Friday, January 11, 2019 12:29 PM
Joined: 12/6/2011
Posts: 677


For me I would change nothing because I live in gratitude now for those who were here for me when I needed to be heard and understood..and this message board helped me help my husbands mom..and helped me know I could meet her needs and keep her safe with love in my heart for her during her journey of memory loss.

Thank you Alzheimer's Association for this message board.

Namaste

love Rosie


chrisp1653
Posted: Friday, January 11, 2019 12:55 PM
Joined: 1/23/2017
Posts: 1110


Rosie, you are class. All the way.
Bob Sacamano
Posted: Saturday, January 12, 2019 8:11 AM
Joined: 1/31/2012
Posts: 412


I don't think political or religious threads or posts should be allowed and this should be formally stated in the rules and strictly enforced. Just not the place for this, even in Musings.

I also think that the moderators should just outright close the threads that start out well- intentioned but then become derisive. Don't do what they do now; which is to delete certain post(s) that they deem offensive but continue to keep the thread open which inevitably leads to more nasty posts.


jfkoc
Posted: Saturday, January 12, 2019 8:56 AM
Joined: 12/4/2011
Posts: 16019


Political/religious threads/posts are always offensive to someone. The poster is never unaware of this so I muse what kind of people has nothing better to offer.
ruthmendez
Posted: Saturday, January 12, 2019 11:09 PM
Joined: 9/8/2017
Posts: 1721


I miss the daily jokes George K would post....but, I guess he vanished.  Been a long time.
Jim Broede
Posted: Sunday, January 13, 2019 6:00 AM
Joined: 12/22/2011
Posts: 5318


jfkoc wrote:
Political/religious threads/posts are always offensive to someone. The poster is never unaware of this so I muse what kind of people has nothing better to offer.

 

 

Try to concede, Judith, that many problems and pertinent issues in life. Are not adequately addressed. Because people would rather steer clear, period. Than  face the sensitive complexities of life. Head-on. Too often, the most appropriate places are labeled ‘inappropriate.’ In order to inappropriately stifle discussion. --Jim

 


Andy61
Posted: Sunday, January 13, 2019 11:07 AM
Joined: 12/17/2018
Posts: 20


ruthmendez wrote:
I miss the daily jokes George K would post....but, I guess he vanished.  Been a long time.

 

I don’t remember George K submiting daily jokes, but I do remember him posting scripture.


ruthmendez
Posted: Sunday, January 13, 2019 12:39 PM
Joined: 9/8/2017
Posts: 1721


He had a 'Today's Smile' thread or 'Daily...' something thread I don't remember what it was called, in the caregiver's forum
I used to share some of the jokes (the ones I could get away with and not get called into HR) at work.  It would be my Friday hobby.  We would love it.

Jim Broede
Posted: Sunday, January 13, 2019 1:00 PM
Joined: 12/22/2011
Posts: 5318


We don't know enough about George. Or about anyone. We always come up short. That's the nature of life. Not knowing it all. So much is hidden. Now there's a profound thought. --Jim
Jim Broede
Posted: Sunday, January 13, 2019 1:03 PM
Joined: 12/22/2011
Posts: 5318


But there are always ways of learning more and more. --Jim
MissHer
Posted: Sunday, January 13, 2019 1:34 PM
Joined: 11/13/2014
Posts: 2003


Jim Broede wrote:
jfkoc wrote:
Political/religious threads/posts are always offensive to someone. The poster is never unaware of this so I muse what kind of people has nothing better to offer.

 

 
 

 

 

 

 

Try to concede, Judith, that many problems and pertinent issues in life. Are not adequately addressed. Because people would rather steer clear, period. Than  face the sensitive complexities of life. Head-on. Too often, the most appropriate places are labeled ‘inappropriate.’ In order to inappropriately stifle discussion. --Jim

 

Bingo! 

Andy61
Posted: Sunday, January 13, 2019 2:38 PM
Joined: 12/17/2018
Posts: 20


ruthmendez wrote:
He had a 'Today's Smile' thread or 'Daily...' something thread I don't remember what it was called, in the caregiver's forum
I used to share some of the jokes (the ones I could get away with and not get called into HR) at work.  It would be my Friday hobby.  We would love it.

Thanks for the clarification. I dont remember (shocking) that he had a jokes thread posted.
just exhibit Love
Posted: Monday, January 14, 2019 8:46 AM
Joined: 12/6/2011
Posts: 677


I have been worried for some x about George K..and I have posted to him a couple of times on the caregiver part of the forum and he has not answered me which is not like him not to answer..I so hope all is well with this precious man as he has made my day many times when I needed to read his words of HOPE which he gives everyone.

Namaste

Love Rosie


 
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