I've been a member of this group since 2012 when I realized I couldn't do this alone. I needed support from others going thru the same things; who could share their experience, good & bad days that we all have. We had journals to write in, could post pictures,send private messages and many 'perks' that were lost to us.In mid 2016 I quit coming when DS changed the format & seemed to have lost my login information so i couldn't log in (DS found it a year later :/).

I found a new 'home group'; as most members did. 

It is so sad when I look in to see newcomers come & no one to give them the wonderful support, share their good & bad days, or teach about this disease like i received. So the newcomers leave, i hope finding good, active support, so sad if they don't. :(

We weren't just people on a board, we became friends & truly cared for each other. We had those that were REALLY good on computers give us links of information so we could learn. The people further along helped those that were new. those not good on computers came and gave support & their ideas on the matter (nicely). Getting that close, sometimes people read or misunderstood what another had posted & there were hurt feelings.

I always posted about the "TOPIC" and if i wanted to post about a reply i would put the "persons NAME" i was posting to----i found that cleared up many misunderstandings as anyone can misinterpret the written words true meaning.

A year later DS sent me my password & I could log in again. I check occasionly, but havent made any comments because it seems to be a lost board that once was great. I still don't know how to work this format, but I am going to do my best to be a part of it once again & I hope it will become the friendly, informative, supportive group it was in the past & that newcomers will always feel welcome.

We were not medical professionals and we all knew it was just a persons opinion.

(just my opinion [jmo] )