is this forum dead?

    • Anonymous
      February 10, 2012 at 1:43 am

      Where is everybody? Have they all gone to facebook? It is sad that so few are participating any more. Jeff

    • Anonymous
      February 10, 2012 at 3:07 am

      Jeff I am wondering the same, but I think people will drift back after the upgrade. I don’t go to facebook–not signed up there and never will.

    • Anonymous
      February 10, 2012 at 12:40 pm

      I check in often to see if more have come back. We lost so many members to facebook I do hope they come back.

    • Anonymous
      February 11, 2012 at 6:28 am

      Hi Shirley,

      I see that you have found your way back since our chance meeting a couple weeks ago. It was such a pleasure to see you and husband again. We were fortunate that cardiologist never gets in a hurry and we were able to converse for a few minutes. I guess only time will tell if the changes on this site’s forums were for the best.

    • Anonymous
      February 11, 2012 at 3:17 pm

      Hi Kyle,
      Thank you for the email.
      My visit was not good with Dr. I will have procedure on right leg and six weeks later the left leg.
      In may I will have nuclear stress test on heart and ultrasound on the carotid artery.
      It was very nice to visit with you and your wife. Dr. said that has happened several times where friends run into each other, once with old school mates.

    • Anonymous
      February 12, 2012 at 5:13 pm

      I am still here but yes I have also noticed not much happening so I don’t check as often!

      Going for IVIG tomorrow.

      Enjoy the day everyone

    • February 13, 2012 at 8:03 pm

      I hope the forum revives. My work blocks FB.

    • Anonymous
      February 14, 2012 at 11:25 pm

      The new form appears to be text only. That means I can not continue posting images on the “amusing photos site”. So for now I’m out of here. The new and improved forum appears to be a step backward. Maybe I’m missing something. I’ll check in from time to time.

    • February 15, 2012 at 4:44 am

      I have checked back a few times but I do not like this new forum. I find it hard on the eyes. I have a large computer monitor & the all white page is just too much for me. I feel like the new forum looks…generic.

      I also emailed the Foundation & asked about private messages. I had a phone number stored that I would like to get back. I haven’t heard from them.

      For now, I will check when I have time but I’m not going to be an active participant.


    • Anonymous
      February 17, 2012 at 12:52 am

      I have had a terrible time trying to log in. Time after time I had to ask the foundation to help me.
      Now I see the new improved site looks awful. Yes, it’s too generic.
      Why the change?? I don’t know?
      Very hard to follow a thread and/or to read.

    • February 20, 2012 at 12:50 pm

      I hope not; the forum has been such an encouragement, source of knowledge, and a place for compassion and understanding for me. I haven’t been visiting as routinely as I did early on because a lot of my friends had not been posting. I tried facebook, but it didn’t offer what the forum had given me (encouragement, source of knowledge, and a place for compassion and understanding). Jim wasn’t there to post his humorous pictures; Norb wasn’t there with his photos; Liz wasn’t there with her holiday gifs; the Taven wasn’t there; Kelly (and Emily) weren’t there; the prayer ministry wasn’t there; … I do wish my friends would return and the foundation would be sensitive to how important the Forum is to those of us with these horrible diseases.


    • February 21, 2012 at 2:17 pm

      Hopefully people will return!

    • February 21, 2012 at 2:53 pm

      It aint a party without some guitar!!

    • February 21, 2012 at 3:08 pm

      Nice to see you back. How is your guitar playing going? Are you still doing well?

    • February 21, 2012 at 3:21 pm

      Hey Dawn and everybody else!

      Thanks for asking. I have still been playing, but the fingers still struggle. I haven’t been able to put my band back together as my playing is too unreliable…..but I haven’t quit! I’m hoping that once the weather warms up, I wont be as stiff or fatigued. Stay tuned.

      I hope you all are as well as you can be!


    • Anonymous
      February 22, 2012 at 5:57 pm

      I’ve just logged in today for the first time in a while, and….I’m not a fan of the new look either. Not exactly too easy on the eyes…I agree that it’s very “generic” looking, and it seems to be very slow to load. I only check Facebook very infrequently, so I hope that we’re not losing forum members to that….this site was always way more helpful than Facebook could ever be.

      Northernguitarguy….good to have you back. I’m a bass player with GBS, so if you ever make it to Long Island perhaps we could have a GBS jam~! Neuropathy rock~ 🙂

    • Anonymous
      February 22, 2012 at 6:43 pm

      It is nice to see people returning, slowly but surely. It’s like reuniting with old friends. In my darkest hours after my CIDP diagnosis two years ago, this forum was my rock. I will NEVER forget how the people here comforted and supported me.

    • February 22, 2012 at 6:52 pm

      Northernguitarguy….good to have you back. I’m a bass player with GBS, so if you ever make it to Long Island perhaps we could have a GBS jam~! Neuropathy rock~
      Hey guppy, thanks it’s good to be around again! We’ll have to play something reeeeaaaal slow!!! :mrgreen:

    • Anonymous
      February 22, 2012 at 8:18 pm

      Yeah!!! I finally made it back. I had the old link and then it dawned on me that maybe that link was dead. I just moved and have been so busy unpacking – or trying to. I get a box or two done each day and then its nap time. I’m ready to rock and roll and hope that many are just slow with getting back on here like me.

    • February 23, 2012 at 4:20 pm

      guppy & northernguitarguy,

      I’m always up for jamming! I played rhythm guitar in a local band for 20 years. Southern rock and beach, mostly.

      Let’s do it! 😀

    • Anonymous
      February 23, 2012 at 5:50 pm

      LOL….that would be awesome, a GBS jam.
      I started playing bass in 1994, and I got GBS in the summer of 1995, so I only had a relatively short pre-GBS period of time. One good thing was that I actually brought my bass to the rehab facility I was in back in 1995. I practiced unplugged every day during my month-long stay, which really helped me improve. But I definitely can’t play for as long as I used to be able to pre-GBS, due to hand and back fatigue.
      I currently have 5 (or 6?) basses, including a heavy 5 string for when my GBS isn’t too bad, and a light-weight short-scale Epiphone Viola (aka the “Paul McCartney” bass) for when my GBS is bad, lol. Unfortunately I’m losing my “guitar room” to make way for the baby we’re having on March 19~! Priorities, I guess….. 😛
      So it looks like we have 2 guitars and a bass. If you guys ever make it to Long Island, or I take a road trip, we should totally do a GBS jam~! Now we just need a drummer with GBS….lol

    • Anonymous
      February 23, 2012 at 9:58 pm

      Sure wish they would fix the “search” function

    • Anonymous
      February 24, 2012 at 8:15 am

      Good to see folks have replied to this thread.
      This site has been so wonderful and I can’t thank all of you enough for the encouragement and support.

      Hey, Guitar Guy—welcome back. Had missed ya.

      Does this site have the old private message option?? I don’t see it here but maybe I’m not clicking the right button.

    • February 24, 2012 at 3:01 pm

      Limekat – I don’t think there are private messages any more. I wrote the Foundation an email right after the forums came back up & asked about them. I haven’t heard back.


    • February 24, 2012 at 3:41 pm

      Thanks limekat, right back at ya!

    • February 24, 2012 at 3:44 pm

      Brad, guppy

      A GBS jam, that could be fun. ‘Sludge’ rock for sure!

    • Anonymous
      February 26, 2012 at 1:47 pm

      Hello everyone! I agree, this new format is not as easy as the old. Kelly, you can still get your pms by going to the old forum ( – I retrived information last week that I was concerned about losing. Unfortunately, some are still postsing there and if you do, it does not show here and vice versa … further splintering communication. Good luck to everyone to find the support and information communication tool that works best for each person!

    • February 26, 2012 at 10:04 pm

      Thanks Linda – I tried the link you provided. I got an error message saying the page can’t be found.

      I can’t get to the old forum either.



    • February 26, 2012 at 10:10 pm

      Scratch that!

      I Googled “forum gbs/cidp” and got the link to the old forum. I was able to log in & post. You can also access your PM’s. Even though Linda M posted the link (it didn’t work for me) I will post one too & maybe that will work.

      I wrote a post saying the forum moved & gave the link…kinda thinking it would be nice to stay on the old forum though because I dislike this one so much.


    • Anonymous
      February 27, 2012 at 2:54 am

      Thanks, Kelly – I see my typo!!!! Drat these fumble fingers! But glad you were able to access!

    • GH
      March 4, 2012 at 1:54 am

      The interruption in service merely caused some to adjust their routines for awhile. I’ll be here, but I have more things than this taking my attention now.

    • Anonymous
      March 7, 2012 at 10:16 pm

      Kelly, thank you adding the link on the old forum. Welcome back to Dawn and NorthernGuitarGuy!!

    • March 7, 2012 at 11:03 pm

      Missed you Tina!

    • Anonymous
      March 9, 2012 at 5:18 am

      I just now was able to log back on!!!!! When I first came on the site, I thought I had mistyped the name and was on a corporate forum. I like the old layout. It felt like home. This feels like an extension of all the sterile medical sites I am on scheduling appointments or looking up side effects, not like the cozy, warm site where I would come and visit friends. I would seek advice, give advice or cry while typing about a hardship. I would also feel warm, loved, and truly cared for on the old site because I felt free to be myself. This is too corporate for my taste. This looks too sterile and cold for the emotions that are poured into the forum. What happened? Why did it happen? Does anyone know? I miss everyone’s pictures. I miss the warm tones. When I was finally able to figure out how to reset my old, favorite password, I opened this site and felt like I should have attached a resume to it as it was so corporate. This looks just like a corporate headhunters website. I wish it could go back to how it was before. I feel I have to sit up straight as I type this, dot my i’s and cross my t’s. I want the friendly, warm and enviting site back. I have to deal with cold and sterile with my doctors and hospitals on a day basis due to my disease. This was my one medical escape where I could be myself, yet surrounded by intelligent, nurturing, caring folks suffering or thriving, declining or healing who selflessly shared a very intimate part of themselves. I just don’t feel that here. It’s very sad.

    • Anonymous
      March 9, 2012 at 7:30 am

      I check in often to see if more have come back. We lost so many members to facebook I do hope they come back.
      Shirley 😉

    • GH
      March 9, 2012 at 3:50 pm

      The only things I don’t like about the new site so far are:

      I haven’t been able to find the archive of newsletter articles.
      The rapidly changing image on the home page is annoying.
      The contrast is too low for comfortable viewing.

      Otherwise, I like the more professional look and feel of the site. The software package used previously looked amateurish by comparison. The site ought to look like its purpose is serious, which it is.

      People whose primary interest is social networking should be using social networking sites, in my opinion.

    • Anonymous
      March 9, 2012 at 4:10 pm

      I don’t like there isn’t the ability to search a topic on the forum

    • Anonymous
      March 11, 2012 at 7:06 pm

      Change can be difficult sometimes. Lately, all I have experienced has to do with changes so I’m game to hang out here. I do miss seeing everyone’s pictures.