January 18, 2015 at 8:02 pm
I guess I’ve expressed my frustration with how much more helpful this site could be for those of use who have residuals, especially on the CIDP side. Certainly, this presence provides knowledge and focus, but most of the GBS literature points to this site… many medical staff send families here. Yet, look at the participation level on this forum! 35,000 GBSers in the US, and I see a post here once in a blue moon– they are getting their questions answered elsewhere. GH, I know the forums have never been correctly moderated. There is more to moderation than taking care of the basics like spam. That is part of the problem I see here. Yes, the content is better now, as are zillions of other sites, many who take social aspects much better.
I’m not clear on your understanding of social networking, but this is what we are doing right now? My take is that those who are social are utilizing the strength of the group to heal; a strong social network is important! What, the place is better off now that highly knowledgeable, and helpful, GBSers have left for greener pastures? Look, the support here for families with questions is far worse than it ever has been, so my guess is they go elsewhere. What’s the sense in taking time to register if there isn’t anyone here? I’ve earned the right to express satisfaction because for YEARS I’ve made excellent recommendations, which for YEARS sat unattended, and now look. I am disgusted, for sure.
GH, I’ve been involved in virtual communities for close to 15 years, even built a few. The concepts apply to a medical forum as much as any other special interests: a web presence becomes stronger when volunteers take a vested interest. It helps build a knowledge base and helps the friendly helpers by giving them something to feel good about. This is an outdated medical model I see here, a static website where the moderator is an IT guy taxed with technical matters whereas trusted long-term participants should be at the core of this point of presence. Yes, you are right, GH, I don’t like it and, like so many who can help those in need, I don’t use it. So, I see the significance of the foundation, that this site will remain helpful, but why have a forum if know one uses it? May as well pull the plug if it remains as such. That said, cya in a year or so, to see what may have changed… fingers crossed.
/can only edit my post twice? I can’t see the paragraph while I am writing it! Blaaaahhh!January 17, 2015 at 6:37 am
Hey, I found the financials! Thanks!January 17, 2015 at 6:31 am
Wow! How about that! Quite progressive here now… go figure. LOL CYA!January 17, 2015 at 6:19 am
Not sure about my judgement, but I drove even when I couldn’t feel any sensation other than pins and needles, which lasted a full year (bad to play bass when you can’t feel your skin). Thing was, at the time I had a Mitsubishi 3000 twin-turbo and the clutch wore me out! I had to sell it… still miss that car almost as much as I do my vitality. But driving wasn’t all that bad even without being able to feel much of my body. In retrospect, driving when I shouldn’t was a part of denial that I was impaired… went for five years trying to pull myself up by my own bootstraps, till I realized I needed help. There are times I get into despair concerning loss of a career and so many other consequences, but I do my best to appreciate the fact that I drive well in my Honda Civic… beep-beep! I sure miss my sports car, though… darned %@_&@_#&#_ GBS… hehehJanuary 17, 2015 at 6:08 am
GBS in ’98, still dealing with fatigue, and the associated change in my lifestyle, which includes disability. Pain, well, there is that, too, but I can tolerate pain more so than fatigue… grrrrr.
Azgold, not sure if you are in psychotherapy, but you may want to get started now if you haven’t already. It took me five years before I got some help with adjusting to residuals… wish I acted sooner. You know, neglect of my mental health issues got me into a serious depressive state, which took about four year of therapy before I accepted the fact that I am disabled. And if you are one of the few who show improvement after three years of recovery, well, it can’t hurt.January 17, 2015 at 5:54 am
My lower-left lip decided to retire. So, when I eat I chew with my mouth open and some food is bound to escape my intent to digest it. It is awkward, and I find that I am not as good a kisser, as I was pre-GBS. From what I recall, it has to do with complications/damage of the amazingly intricate Cervical plexus.
Any neurological damage to this realm is bound to cause issues other than cosmetics. We communicate using facial expressions, so if the muscles are not working we are not communicating as efficiently. No idea about cosmetic surgery, but I doubt there is much that can be done, other than adjusting by being cognoscente of how the lack of control effects non-verbal communications; perhaps to compensate for it via other means like using you hands more to express your emotions.January 17, 2015 at 5:46 am
I have a hard time remembering things, but I attribute it to ,not only, the residual of chronic fatigue, but also, sleep apnia. I have a hard time remembering things, but I attribute it to ,n ot only, the residual of chronic fatigue, but also, sleep apnia. I have a hard time remembering things, but I attribute it to ,n ot only, the residual of chronic fatigue, but also, sleep apnia.
What were we talking about?January 17, 2015 at 5:43 am
Not sure why, but young sexy woman get my blood boiling. Nothin’ I can do about it. Is that GBS related?January 17, 2015 at 5:28 am
Stress is an umbrella term used to describe so many things. Of course, GBS, and the potential residuals, are distressful. But we do need some stress, for without stress we would be pools of water laying on the floor. That said, I have changed my stress-full lifestyle post-GBS with the path of least resistance lifestyle, since the fun residual of anxiety attacks and depression have shown me I feel better when my stress, and distress, is managed well. That includes lots of things, like how well I eat and if I am exercising by injured body, etc. Post-GBS ’98, I’m doing pretty well as far as I am concerned. You know, meditation is a wonderful thing… a great way to manage stresses!
No idea about relapse, but from what I’ve read, a GBS episode can occur when the level of distress on our autoimmune system becomes critical, as we all have the same predispositions. I think it requires that many triggers come into alignment, to cause a GBS episode, but who knows what is actually going on– just like most rare neurological disorders we don’t have enough research resources churning to bring about great insights. In reading threads RE Multiple Sclerosis, it seems that managing stress is an integral part of recovery, and adjustments to a drastic change in lifestyle, which in and of itself is quite distressful, and similar to what we go through with being a GBSer.
I keep a list of 12 things happy people do, and what comes to mind is #12 on the list: “Increase flow experiences (flow=so focused on something that time stands still).” I achieve this state while playing my Bass guitar, and when I am playing team-oriented computer games, or when I am writing with much concentration. What do you do to manage your distress? What do you do to increase your ‘flow experience?”January 17, 2015 at 5:13 am
GBS in ’98. fellow survivor. Complications with other bodily issues make it difficult to figure out if my residuals have changed or that, as I age, other factors complicate how I see my residuals. That is, chronic fatigue has been persistent since I was afflicted, but type II diabetes increased my CFS, and I felt a boost to my energy once I got my diabetes under control. None the less, I have less sensation in my feet, so the pins and needles are not as bad now, which from what I gather is not a good thing. Joan, might it be the complications of other disorders that make you feel as if the long-term residuals have changed?January 17, 2015 at 5:07 am
So, how goes it, Leeyoung? Has the situation changed?January 17, 2015 at 4:51 am
Yes, it is as if the perception with the foundation is that this forum of interaction is not significant. From what I read, it seems like the focus is exclusively on fund raising, such as grants to support salaries and office space in PA, and symposiums at places where doctors might enjoy leisure conversation, compared to practical aspects related to education and therapy for the GBS afflicted. Again, the issue of residuals and chronic care for ongoing patients with residuals is lacking in planning, and this forum is a perfect example of a core lack of insight fostered here for many years now. That is, this web presence speaks volumes on a skewed focal point…. just look at the web pages and the content, how the forum link is as if an afterthought. Perhaps I should read up on what the foundation does with the grants, and the financial statements of the institution, which I am sure are public? (please post a link to financial report for the foundation) Look, I’m sure some workers are doing a great job… but the lack of focus on creating a virtual meeting place is inexcusable, and indicative of something more systemic. In fact, this web site is far less professional than many internet computer gaming groups I participate in, whose budgets is nil. At least they had the common sense to not use a flash BBS…. blah, and comprehend the significance of sticky threads to update participants on a host of issues. So, I hope someone receives support and knowledge here, but as stated above, the level of customer services for this medium is poor at best. Getting rid of spam…. an elementary aspect of any forum. Please help me understand that this foundation is run well these days?
My post was initially written what… ten months ago… but no reply from a staff member or an authorized volunteer… same as usual, since I see no change in behavior compared to many years ago, when the forums were still slow and as poorly run, except at least there was some activity. May as well shut the joint down, from what I can see here. Disgusting, I say. Totally symbolic of the internal workings of this institution, is the way it seems to me.May 7, 2014 at 9:59 pm
I look at the topic differently than most, Sraw-rats. To me, residuals are effects related to when the neurological system is no longer in the process of recovery. That is, after three years or so. Slow as it may be 2.5 years out, your body is still recovering.
Residuals are GBS-related physiological and psychological effects that prove to be chronic conditions. But at issue is how they interact with other issues not directly related to GBS. For example, I contend with the residual of chronic fatigue, which is exacerbated by my chronic sleep apnia, and now diabetes. So, our residuals are not stand-alone condition, varying as they are.
Once you’ve come to terms that you must contend with residuals of this disease, I encourage you to get into some psycho-therapy. If you cannot return to your previous standard of living, that your lifestyle must adjust to accommodate this chronic condition, it may help your transition into an alternate, healthy lifestyle.
As for the conductivity testing, it is used, along with elevation of proteins in your cerebral spinal fluids, to make a definitive diagnosis. What you’ve described is an indication that your nerve connectivity is not normal. This is especially true if you are experiencing new symptoms.May 7, 2014 at 9:39 pm
N>D, hope you find my note on this thread, since I am sincerely curious about how you are doing. I remember feeling scared as hell in my second month, trying to make sense out of the best way forward. What worked for me was to follow the regiment created by my neurologist and general practitioner, to do the physical therapy even when I didn’t want to. But added to that is the social stuff a young person your age must contend with… bet you are under a lot of pressure?
So, now that you are a year into recovery, how is your progress?May 7, 2014 at 9:25 pm
Wow. I forgot about this thread. Well, folks, thanks for the kind replies.
As for an update, yes I still am depressed, but I am on a SSD disability income now, which has reduced my stress levels considerably. I find writing is a great vent for me, as are team-oriented computer gaming for my meditations. It helps knowing others understand how I feel, since it is difficult, if not impossible, for others to understand neurological fatigue, as opposed to physical fatigue.
I appreciate your concern and useful suggestions!