It is good to be back on again. I have checked twice a week, and am most appreciative to those who worked so hard to retreive this board for us.I am so unsavvy with the computer that the changes make no difference to me.I am just happy to be back:)
Hi Everyone:
I’ve missed reading this site. It looks like we have had some changes since I’ve posted the past several months. I’m still dealing with the daily residuals of GBS and hoping for more recovery. The fatigue seems a little better although I still nap everyday. I’m substitute teaching two days a week, sometimes three. It seems to be going well. I even challenged myself to teach math and I was able to do that without my brain going crazy. I look forward to reading everyone’s posts again. I still deal with numbing and tingling in my feet and hope that will stop someday. I love this site.
Happy MAY to everyone!!! Spring has sprung. I love the colors coming out!
Caroline
Dear Friends:
During our last local support group meeting I heard something from Dr. Schilke, our local leader and a member of the GBSFI Board of Directors. He said the accepted incidence rate of GBS of 2 to 3 cases per 100,000 people per year could be lower than the actual number of cases. Many cases of GBS are so mild that they are not reported at all. Many cases are misdiagnosed as some other type of polyneuropathy. and some cases are written off as psychosymatic illness. It is interesting because it is the first time I have heard anyone of some official capacity state that the official incidence rate could be in error. This raises a lot of questions which I have never considered before. I always thought GBS was pretty well reported because of its seriousness, but is it it possible that this assumption is wrong? What if the serious GBS cases are just a small percentage of the total number of cases. What if most cases of GBS are so mild that they easily escape notice?
It seems like the more I learn about GBS, the more I realize that we know so very little about it.
Lee
Having plenty of cheek, I’m going to ask here!
The UK GBS and CIDP Support Group have an ‘Awareness Week’ at the end of May.
All I’ve managed to come up with is a sponsored swim. One lady has offered to be lifeguard – which is brilliant. I’m asking around to see if I can get use of a pool – for free hopefully. As for transport, I’m banking on the children cajoling their parents into bringing them to the pool.
This won’t be a huge affair, I’ve not done something like this before. I’m going to put posters up in my lass’s school and hopefully some of her classmates will do it.
I’ll be asking the local newspaper to do a piece before and after the event, and our local radio station too – they have a country music programme and as Hook (a ‘previous’! member) writes for The BackStretch Boys – and they are apparently Country – I’m going to see if I can get one of their songs played and a mention regarding the GBS Group at the same time. I’ll have a go at getting the national radio station in on it too. All they can say is No. If I get the pool for fre, they would surely get a mention (good advertising).
If anyone has any ideas or advice I would love to hear it. See, I hadn’t thought about a lifeguard until this lady offered, so I’m wondering what else I may have missed that ought to be glaringly obvious.
I was thinking that it might be an idea to have a present or somesuch for whoever swims the most lengths or perhaps who raises the most money? I think the most money is the better idea because it’s not a swimming competition.
The other thing is, how do I get money out of the parents who bring the children? Apart from having a collection box?
Next thing: I’m trying to put together a letter to a local financial institution asking for their sponsorship. I don’t partiacularly want to go into great detail as regards GBS and CIDP – what I really want to do is persuade them to sponsor the Group. So again, all ideas will be devoured. I know the sponsorship I seek is for the Irish and Uk Suppport Group (I put it that way round as it is an Irish Institution I hope to get funds from!). But in my mind, whether it’s here, there or elsewhere, it’s still GBS and CIDP.
PS – Do I get the record for the longest post so far on this new Site?
God Bless
Teresa
🙂 To get into the action again some of you may find it of interest to read Deb’s report on the GBS Support Group UK’s conference in Edinburgh late in April. Much of interest there both GBS and CIDP. Main speaker from Japan.
Deb lives in South London but is of USA birth.
Report is here > [URL=”http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi?s=445cddf63965ffff;act=ST;f=2;t=117″]http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi?s=445cddf63965ffff;act=ST;f=2;t=117[/URL]
😉
Dear Friends:
During our last local support group meeting, I found out there was a new case of GBS in my neighborhood. The person lived about four blocks away from me. Whithin a a ten block radius, we have had 6 cases of GBS in the past six years which is way higher than the accepted statistical probability. We have also had two cases of Kawasaki’s Disease in our neighborhood in the past five years. This brought the CDC into our neighborhood to find out exactly what is going on. Because GBS isn’t supposed to occur in clusters this is pretty strange, at first glance. When I talked with the lady from CDC, she said Oregon City has a pretty strange looking cluster of GBS as well as a whole host of other odd health problems including Polio, measles, mumps and Scarlet Fever. I asked the CDC lady if the cluster followed the path of Molalla Avenue within one mile of the road which runs through Oregon City. She looked at me strangely and asked how I knew that. I said that is where the ‘kissers’ live.
The ‘Kissers’ is a local slang name for a church group in Oregon City that believes Jesus will return to earth in the near future and land on Molalla Avenue. They all live within a mile, by church decree, so that they can walk to the site where Jesus lands, apparently because cars and Jesus don’t mix for some odd reason. They also do not believe in doctors, antibiotics, or medicine of any sort. They belive in making their immune system strong by kissing on the mouth during their church services, hence the name. If this all sounds bizaare, it really is, but it is also true. Regular epidemics run through the church and the church members spread these epidemics to the rest of the community. Oregon City has the highest rate of Scarlet Fever in the United States as a result. I contracted Scarlet Fever in May of 2002 when the Kissers had one such epidemic and I had GBS a week later.
I had to tell the CDC lady that I don’t think Oregon City is a GBS cluster, it’s just an infection cluster in general and it is the infection which causes GBS. It was good to know that GBS is on the radar of the CDC even if they couldn’t do anything about it.
As for the Kissers, I don’t think Jesus is going to land on Molalla Avenue. Holcomb Boulevard, maybe, but not Molalla Avenue.
Lee
Dear friends:
This post is for the hacker who wrecked our original forum. I hope you don’t take too much offense by this this but I would like you to know exactly what you managed to accomplish.
First off, you stated that you hacked our site to prove that you are the ‘King of all Hackers’. I don’t think hacking this site really makes you the king of anything. This is a low budget site for a charitable foundation. If you hacked a defense computer, Intel, or Microsoft, then maybe I might be slightly impressed. Big game hunters don’t club baby seals for fun. Hacking this site can’t be much of a coup.
And the whole King of the Hackers thing is a rather dubious distinction, don’t you think? When you think of a hacker do you think of a debenoir swashbuckling stud who has to chase the girls away in order to get some peace? Or do you think of a pasty skinned, hygenically challenged, adolescent who lives in his mothers basement, is 50 pounds overweight or underweight, social introvert with delusions of adequacy? I thought so.
I know, you are probably saying to yourself that you did us a favor by hacking this site, so that someone who is really destructive wouldn’t hack us and really create a lot of havoc. Save your breath, you will need it to inflate your date. I heard those same lame rationalizations when I worked with sex offenders. You really have to be adept at self-deception to try to justify despicable acts. Did you realize that there are many members of our community who are shut-ins, due to the damage GBS has done to their bodies. You deprived these people of the only social life they had available to them. To me, your acts were like pulling the wings off a fly, except of course, catching that fly requires a certain degree of skill and manual dexterity.
Did you realize that we have, in the past, answered posts like this: “My husband is having a hard time breathing, the doctor sent him home and we have an appointment with the neurolagist on Tuesday. What should I do?” Well, those people need advice, and they need that advice in a hurry. I certainly hope your childish tantrum (at least thats what it looks like to me) didn’t cause physical or psychological harm to anyone. If it did, then I hope that there is a seat next to the blast furnace in Hell for you.
Finally, a word about spelling. We have some members here who have extreme difficulty typing due to the ravages of GBS. We have others who are pretty intellegent, but can’t spell very well. But if you want to impress someone with your graphic presentations, perhaps using correct grammar may be to your advantage.
May you smoke dog turds in Hell forever,
Lee Spurgeon
P.S.
If you are offended by this post, please contact me at [email]Marcmuirhead@AOL.net[/email].
Finally it’s back up.
I’ve VERY close to going to the ER due to numbness and other problems.
I started having problems about 2 weeks ago but believed it to be just risiduals. Now that I have the tingeling in my lips and occasional times of having problems breathing I’m getting the paperwork in order.
Of course with “my” hospital being one of the few open in the New Orleans area it’s going to be great fun just with the ER experience.
Since I was out for my spinal tap the first time ( wow, almost 2 years ago ) do they give you a local before the spinal tap or do they just go for the juice.
Well, I’ve missed this forum so much over the past month that I can hardly believe thats it ‘s here now…………
I never thought it was possible, but for the time being, I am the number one poster. Poor Dawn~Lynn, she had to post 10,000 times before she got number one. I know, it’s a cheap win, but a win none the less.
Lee
Dear Friends:
I would like to welcome you all back to the forum. I missed you all and I am glad you will be coming back. I really see that I was taking these forums for granted. It’s just like the lessons you get with GBS. You can’t really appreciate something until it is taken away from you. Anyway, I hope this pause will give everyone an opportunity to cherish everyone in our GBS community (even those people we had a tiff with).
We all lost a wealth of information when this site was hacked. I hope everyone will pull together and do what needs to be done to rebuild as quickly as possible. I hope nobody will be shy about resubmitting some of the best posts from the past.
Anyway, I would like to thank the site administrator for getting this site up and running. The new look is certainly an improvement. I am sorry we lost so much data. I can only imagine how difficult a decision it was to scrap the old forums so that we could at least get something going again.
Lee
