Hello,
I recently joined the group. I have some feedback if you are willing to listen. This is an extremely difficult site to navigate. As a webmaster for a site for people with brain conditions, it seems counterproductive. I’m locked out from chat because I haven’t earned any t rust. I understand that. How do I earn trust when I jave no way to communicate with anyone or with any direction to do so? This is a very confusing site. I hope you modernize a bit. Until you do, I am unable to stay. I can’t use the site. Please go ahead and remove me from your roll. Sorry this didn’t work out. I was really looking for some support. We ate such a small group of afflicted people and families. Its a shame that the one place that we shod all easily communicate with others who understand our daily struggles is formayyed in a frustrating and unusable way. I’ve been frequently Dissapointed by medical professionals. It hurts twice as much to be Dissapointed here.
Prayers to you all who suffer, and to your famies who suffer with you.
Colleen Bokan
Colleen, thank you for your honest opinion. We really value your input and would appreciate your suggestions if you could tell us more about what you are finding difficult.
I’m Seenie, and I work on the entire Ben’s Friends network as a troubleshooter and a resource person. I’m not an IT professional and I’m old (so old, in fact, that most of my friends “don’t do computers”). I will also tell you that I had a really hard time with this format when we switched to it. There’s something about it that isn’t intuitive to me, or, from the sounds of it, to you. I know that you and I aren’t the only ones who struggle with this. With a great deal of effort, I figured it out. (I had no choice but to figure it out because I love what I do here, and I wanted to keep doing it.) So I get what you’re saying, but I’m afraid I’ve forgotten the specific things that I found difficult.
Will you tell me what the hardest thing for you is? We’ll go from there, OK?
This isn’t the first time we’ve had a comment like yours, but most people aren’t willing to help us by letting us work with them to sort it out. If you’ll tell us, we may be able to make it easier for others like you.
I agree, people struggling with a rare disease or condition shouldn’t have to struggle as well with the system that is supposed to help them. Will you work on this with me?
Seenie from Moderator Support
PS I removed your surname from from your screen name to give you a bit more online privacy. Is that OK? If you would prefer to send a private message, just click on our avatar (circle with the three silhouettes) and then on the blue message button.
Hey Colleen,
I’m Merl and I’m part of the Moderator Support Team here at Ben’s Friends and I do understand your issues. I’m a member of the Traumatic Brain Injury group here and I too have been having very similar problems with this setup. I’m sorry to say but we have only very recently switched platforms and although I’m sure the administrators were hoping for a clean change over, that has not been the case. It has only been my stubborn perseverance that has gotten me this far.
There is a post here from Seenie and if you can answer her post she will be sure to follow this up with the tech people. We can only improve things if we are aware of where the issues are and to do this we need members to tell us. Chat is still a work in progress as the change over had issues with the previous chat platform (All techy stuff way above my brain level) but you can still post on the boards and someone will respond, it may not be instantaneous as members are from all over the world (I’m in Australia) but someone will answer.
I do apologise for the difficulties you have been having, but many of these hiccups are way beyond our control and they are being worked on.
Merl from Moderator Support