Someone needs to try to fill Gene’s role…
AnonymousMay 25, 2008 at 7:46 pm
I’m kinda feeling bad for some people on the site that are looking for good advice, (and I’m not the one to give it)….. I’ve seen from only the few months I’ve been around this site, that there are a great deal of knowledgeable people out there…. I hope you all continue to share your expertise on this stuff. Otherwise, it seems to be quite a costly learning curve. Thanks to everyone who has helped me on this road to recovery… Don’t wanna sound like a broken record on this stuff, but I hope more step up to the plate and do Gene proud…Just my thought on this weekend of remembrance,,,, deanop
P.S…Don’t know where I’m going with this, and no one need reply or do nominations.. I guess I just miss the “Take 3600 mg of this stuff, and by the way take care be well” ,…..Oh well I’ve rambled enough…
AnonymousMay 25, 2008 at 11:59 pm
I understand what you are saying, having been on this forum for going on 6 years now. The majority of my posts were on the forum that was lost, I felt really bad when we lost so much information, as I had spent many many hours typing long posts with my two fingers! Back then there were a wonderful set of regulars who were extremely well informed about the various issues that people with both GBS & CIDP experience. I remember all too well when not only Gene, but Jethro, Marc M, Dick S, Cathy B, Brandy, Doc David, Jerimy, & others were all posting on a daily basis.
But after a certain amount of time, some people do feel the need to move on, especially if they have made a pretty good recovery. Gene was one of the few to stay on the forum on a daily basis. Many of us old-timers do read the postings still daily, but only post if no one else steps forward to state the basic facts; such as using neurontin to fight nerve pain, if you don’t recover from any exertion in 12 to 18 hours you have overdone it, get plenty of rest, GBS stands for “getting better slowly”, etc… I think there are currently enough active members who are able to pass these words of wisdom on. One can also refer people to the wonderful Search option that will bring up topics already discussed.
I continue to ready the forum daily, but do not post as much as I used to. I still have to type with 2 fingers & I tend to look for people with the most severe cases of CIDP like I had. I tend to find now that the majority of people with CIDP posting are still better off than the recovery I have made. But I hope that there will always be those willing to post Gene’s words of wisdom, as all of us know them so well.
AnonymousMay 26, 2008 at 12:50 am
I don’t think anyone would try and take Gene’s place. Each of us is unique and have had different experiences. In the year or so that I’ve reviewing and posting on this site, I have found that people are willing to share their experiences and what they have learned. It is a synergistic effort.
We will all miss Gene and hopefully we all will continue to try and help where and when we can.
As Gene would say “take care be well”
May 26, 2008 at 12:14 pm
I am like PamH. Most of my stuff was lost when the site went down. I read daily and respond if I think I have something new/helpful that no one else has posted. I really miss that crew PamH. Especially Doc. He never put anyone down only gently corrected and really put out good info. He had been there and done that. After 14 years of this stuff I still find this forum very helpful.
Like Jeremy, if I can help I will be more than willing to do so, on the forum, by mail or in person (where possible.)
AnonymousMay 26, 2008 at 12:23 pm
I was doing some research on CIDP and pain in preparation for my next go around with my neurologist. I came across this web site. There is a list of Neurologist by state that deal with neuropathy. The neurologist that I was referred to verify the initial diagnosis of CIDP was on the list. This may be a good source to find neurologist that understand CIDP and GBS. Click on resource on the tool bar. Copy and past the address to your browser.
[CENTER][FONT=”Comic Sans MS”][SIZE=”4″][COLOR=”Blue”]http://www.neuropathy.org/site/PageServer[/COLOR][/SIZE][/FONT][/CENTER]
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