GBS Witness’s

    • Anonymous
      November 4, 2006 at 8:13 am

      I don’t come to this forum often, but it was a big help to me 11 years ago when I was in recovery. When I do drop in I see a lot of anger and discouragement about poor medical treatments and missed diagnoses. It seems to me that there has been very little improvement in awareness about GBS in the last 10 years. I have an idea to solve this problem and I’m looking for feed back.

      The politicians are out now shaking hands and kissing babies. The Jehovah’s Witnesses stop by now and then, always so nicely dressed and polite. Would it be possible that we as GBSers could form a team to promote GBS awareness? I see a team of less than a dozen people in each region that gets together and make visits to recovering patients, clinics, emergency rooms, and doctors offices. Two or three of them make an appointment and visit these places giving a short (5 to 15 minute) presentation and handing out some literature. Is anything like this being done or is anyone interested in forming a group to partake in this kind of activity?

      A great deal of anger and depression can be dissolved with positive action.

    • Anonymous
      November 5, 2006 at 8:54 pm

      Great idea Jack!! I’m new so I don’t know what’s being done elsewhere but nothing is where I’m at. Keep us posted-I’d help.
      Andy

    • Anonymous
      November 6, 2006 at 6:31 am

      Thanks Andy

      I watched over the weekend and was a little discouraged that so many had read my post with no replies. Maybe I did not explain it well. Anyway, I’d like to join a group, or form one if necessary, that will go out and make contact with medical professionals and raise awareness. I saw 5 doctors over 3 weeks before I was diagnosed and treated. It wasn’t until I fell on the floor and stopped breathing that they took me seriously. And even then I was in the hospital for 3 days before they called a neuro and started PP.
      If there is no group doing something, it will be a big job, but I’m ready to start. Now that we have doubled the membership is three days let’s keep looking for more GBSers to join us.
      Imagine your first feeling that something was wrong and you called the doctors office, or maybe stopped in. You describe your symptoms and they say “There were some GBS people here a few days ago and they described something like that. It could be a lot of things, but we will check you for GBS right NOW!”
      Please help Andy and I get this thing going. Just a reply is all that is needed now.
      Jack

      PS: Where are you Andy? I’m in SE Michigan.

    • Anonymous
      November 6, 2006 at 8:33 am

      Jack,

      I read your post yesterday for the first time, was away since Thursday. Remember, a few people were at the Symposium this weekend so they may not read anything until today or tomorrow. In anycase, I TOTALLY understand what you are saying, and I do agree with you. I am hopfully becoming one of the liaisons for my area in the near future – in the hope of helping families and patients around here. But …. I understand what you are saying about doctors ………… and to tell you the truth, the thought scares and excites me at the same time. I DO wish that the attitude of docs were different, and in fact, have been having loooong conversations with my dad in South AFrica about this very subject, and wondering if anything could be done about it. Having said that, the attitude I have seen does not give me hope that they will even be willing to listen and be receptive to listening to me, a “non medical” person ;).
      What to do Jack???? I really dont know, but I love the idea and wish that there was a movement in trying to speak to health care professionals, not only about GBS, but maybe about being more receptive and understanding to some people who are not seeking sympathy and attention, but getting to the bottom of what and how they feel.

      P.S. didnt read through my post, so pardon the mistakes.

    • Anonymous
      November 6, 2006 at 9:51 am

      I think anything that raises awareness is a great idea. We should get together sometime soon Jack.

      Jerimy

    • Anonymous
      November 6, 2006 at 1:03 pm

      I think that would help alot of people and get the awareness level boosted at the same time. I will help anyway I can just let me know. I’m just south of you Jack, over the line.:)

    • Anonymous
      November 6, 2006 at 4:24 pm

      Yeah Jack she lives in THAT state 🙂

    • Anonymous
      November 6, 2006 at 5:17 pm

      I’m in for helping also, Jack. We have in past postings discussed a letter campaign to docs and healthcare establishments. Face to face visits within healthcare communities work also.

      When I was in recovery I went with my neuro to several teaching hospitals, he affiliates with and gave a synopsis of symptoms and they had to diagnose. In nearly all classes they got it right, neuro rotations, 2nd year.
      So it is covered, just not seen enough to merit remembering I think..so let’s make em remember us.

      Also I would like to to see some emphasis on residuals and post GBS being talked about, so that they understand this is a lifetime of issues, not just onset and recovery.

      Anyway, count me INNNNNN!

    • Anonymous
      November 7, 2006 at 12:53 am

      But Jer, I’m a [SIZE=4][COLOR=royalblue]MICHIGAN [COLOR=yellow]FAN!!!![/COLOR][COLOR=royalblue]!!!!!:) [/COLOR][/COLOR][/SIZE]

    • Anonymous
      November 7, 2006 at 10:57 am

      I know Cheryl that’s why I like you even more 😉

    • Anonymous
      November 7, 2006 at 5:52 pm

      Jack, I’m in Southern Oregon, but have a few conections in Western New York too. Looks like I’m the only Westerner but the membership is growing.
      Andy

    • Anonymous
      November 7, 2006 at 9:39 pm

      Sounds like we have something going now. I forgot about people being off at the meeting this weekend. In the meantime I wrote to the GBS International informing them that I would like to join or form a group. I would like to cooperate with them and have their cooperation. No answer yet.

      I think the first thing we need to do is for those interested to share contact data. Maybe I’ll setup a Yahoo group so that we can discuss the specifics. For now you can just send me an email and I’ll start to mark everyone on a map. It looks like we have 3 or 4 within driving distance of Detroit now. Those outside SE Michigan can work with us and try to setup something in the area near their home.

      You will all want to think about how much time you can put into this and in what form. We will need telephone and e-mail people, someone to prepare literature that we can pass out, others to make visits, and some to handle the finances.

      If you are interested, please drop me a note at [email]jdh48843@aol.com[/email] and we will get started.

      Jack

    • Anonymous
      November 8, 2006 at 9:50 am

      Jack,

      I have the Ann Arbor area but only have a few people, I think a combined meeting would be great if you are for it. Also when you talk to the foundation let them know that we know each other and would have no problem working together and cover a different area. I think we would make a great team 🙂

      Jerimy

    • Anonymous
      November 8, 2006 at 4:14 pm

      Here we go!!! Teaming up! Love it. Anyone in South Central Pa, Norhtern MD want to be on a team????? I’m game and want to help!