• Anonymous
      January 11, 2008 at 9:47 pm

      Anybody thinking about going to the symposium in Chicago this year on Nov. 7-9? It says it will be held in the suburbs of Chicago. I wonder where exactly in the suburbs?
      I am thinking about it and would consider staying a few extra days and visit Chicago and the area but it depends how far it is from the symposium.


    • Anonymous
      January 12, 2008 at 12:04 am

      I REALLY want to go but I’m not sure if I’ll be able to afford it. Money has been pretty tight since buying the house. I live in MI so I could just drive over to Chicago to save on costs.

      I hear that there is a county program that will pay for parents of chronically ill children to attend symposiums & what not. I’ll be looking into that, I think.


    • Anonymous
      January 12, 2008 at 8:01 am

      [QUOTE=suewatters1]Anybody thinking about going to the symposium in Chicago this year on Nov. 7-9?

      Hi Sue
      What is the Symposium? I looked in the calendar and there is no mention. Do you have a link?
      Sorry if this is a dumb question but I’m still kind of green here on the forum.
      BTW…all our snow is gone in TO.

    • Anonymous
      January 12, 2008 at 8:57 am

      Hi Andrew I got the Winter Spring newsletter from the Foundation and in the middle the is a page that talks about the date of the symposium and the location but more information will be given in the summer issue of the newsletter.
      I just wanted to more detail about the actual city outside the Chicago suburbs.

      98% of our snow is gone the 2 % is what is left from the snow banks.


    • January 12, 2008 at 10:24 am

      The suburb is actually about 60 minutes from downtown Chicago. You would either land at Ohare or Midway airport. The airports are about 40-50 minutes. The name of the suburb is Bloomingdale. Bloomingdale is pretty uneventful. If you were planning on staying after the symposium, I would suggest you make a reservation downtown Chicago. You can purchase these musuem campus passes that allow you to go to all of the musueums. Some hotels even have packages. The musuem of Science and Industry also has this AWESOME new green house exhibit going up, the first of its kind. They also have a Christmas trees from around the world. I highly suggest this musuem. It is about 20 minutes from the heart of Chicago, you could either take a cab or get a hotel there for one day. You will be coming at a beautiful time of year, the lake is beautiful when the cold comes in, the trees still have their leaves and Michigan Ave. is alredy lit up for Christmas.

      Regarding transportation from the airports, if a few of you guys could hook up for a van ride, you could save money, or at least share a taxi ride. I would guess the cab fare would be about $40 from the airports.

      Chicago is so beautiful and vibrant, you guys will have a great time! We (in my opinion, although I have not personally experienced it) are pretty good about handicapped accessibility.

      Now that I think about it, maybe one person could organize a rental car and share it with another, that may be a cheaper way to go and you guys could drive back and forth to Bloomingdale. You would have to balance out the cheaper cost of a hotel in Bloomingdale over the high cost of downtown hotels that have the convenience of location. If you do use a rental, parking is OUTRAGEOUS in Chicago, even at the musuems. If you guys have any questions, pm me.
      I LOVE CHICAGO!!!!!!!

      Dawn Kevies mom

    • Anonymous
      January 12, 2008 at 3:02 pm

      Thanks Dawn 🙂 I will look up what is in the area and see how much it will cost if I wanted to stay longer.


    • Anonymous
      January 13, 2008 at 12:34 am

      We will be getting information about the symposium; which is actually a meeting where we can learn from doctors, physical therapists and ourselves; about GBS and CIDP. It’s great to go to at least once and it’s a wonderful experience to meet our family. How many times have you thought I wish I could meet you or someone like me, this is the way. I am hoping that I will be able to go. I am going to plan on it. When you receive your information from the foundation, it should also include accessible shuttle transportation for those of us in wheelchairs.


    • Anonymous
      January 13, 2008 at 9:12 pm

      I am really gathering information for this and hope to attend. Oprah is located in Chicago and she might be taping a show on one of the days we are there if we stay longer. I think there is plenty to do in Chicago, but just trying to decide where we would like to go and what we want to see will be the main thing. It would be nice to count on locals to help us with all that like they are doing. Thanks ladies and gentlemen! I will keep watching the threads and when I get a chance I will add somethings that I find too.


    • Anonymous
      October 25, 2006 at 2:51 pm

      Hello Friends,

      As you know the GBS/CIDP Foundations International Symposium is being held next week. I will be attending. Before it starts there will be meetings held for directors and liaisons. I would appreciate your input.

      Our liaisons are here to help with emotional support to the patients and their loved ones. Also to visit when possible and provide information to the patient and medical staff. We hold a couple of meetings a year. This is a short over view to give you a look into what we do.

      I have a list of helpful hints for our liaisons and will give a few examples. Please add any you think would be usefull to us to help you.

      1 Have the family keep a diary of the daily events. Months later you will be
      glad you have this.

      2 Bring in Pictures, make the room more comfortable, you might be there for
      a while.

      3 Never talk in a negative manner. Tell the patient they can get better.

      4 Keep the patient up to date on what’s going on with the family, their
      favorite sprorts team, ect.

      5 If they can’t talk get communication cards right away.

      6 If you are sick don’t visit.

      Please add what you can. Thanks for your time. I will let you know how the meeting went when we get back. For those of you that are attending please find me and introduce yourself.

    • Anonymous
      October 25, 2006 at 5:20 pm

      This may be a given, but what about printing out some posts from this forum? Or giving the forum information to loved one to start getting us familiar with this person? As we have seen, communication with us seems to be very important! This forum is priceless 🙂

    • Anonymous
      October 26, 2006 at 1:07 pm

      Here’s a few for you Kass.

      If the patient says they have extreme pain, please believe them and let the caregivers know that sometimes that chronic extreme pain never goes away for the patient, even years later.

      If the patient says please don’t touch me or massage me, then don’t touch them because it can set the pain in motion. Some caregivers think because the patient says don’t touch me that it’s because they are being grumpy or beligerent (spelling?) their bodies have gone through a very serious illness and alot of caregivers just don’t understand this.

      Let the caregivers know that sometimes the patients will gag on food and iced drinks.

    • Anonymous
      October 27, 2006 at 1:27 pm

      Bringing back up in case anyone has any ideas to give to Kassandra.

    • Anonymous
      October 28, 2006 at 11:45 am

      Grieving ~ this is a huge issue that hasn’t gotten alot of attention. We’ve lost “life as we knew it” and now have to make a new one.

      Guilt ~ it becomes obvious at some point what our disease “costs” our spouse, family etc. (emotionally, financially, . . .) They have also lost “life as they knew it”.

      Post Traumatic Stress ~ one never knows when that will pop up and bite ya!

      Thanks for all you do for us Kass 🙂 hugs

    • Anonymous
      October 29, 2006 at 1:11 pm

      Thanks, keep posting, I can always add to this list, even for later meetings.

    • Anonymous
      October 30, 2006 at 8:53 am

      This is one that rules my life FRUSTRATION, “I can’t do this until I can do that and I can’t do that unless I can do this”. We need helpful suggestions on dealing with our frustrations.

    • Anonymous
      October 30, 2006 at 11:12 am

      Just offering to help with things and being there. For example my parents were with me from M-F when I was in the Mayo Clinic and they would ask if I needed anything, or they would ask specific questions like if I was comfortable.

      If the patient is weak, offer to feed them. I would have never asked for help with this but when offered I started to take people up on it when I realized that I was unable to do it. Also make sure they know that when feeding a person with GBS, chewing is a LOT of work so cut the peices small as if feeding a toddler.

      Bring plants in as well as fresh flowers. Most people expect to leave the hospital before the flowers start to die, but by also having plants then they will continue to see living things in their room. Its nice to keep plants around as well. I had so many plants and fresh cut flowers in my room that the nurses were saying it was like nursery. They loved the smell of comming into my room because it smelled like outdoors and that is something that I REALLY wanted after laying in bed for that long. I would say that I had close to 10 plants/flowers at any given time.

      When they have made it to rehab, have them bring games or something the person really enjoys. For example I played cribbage with my dad and my boyfriend when I was doing ok enough to do so, plus its good OT by using your hands for cards and pegging.

      EDIT: Oh and also offer just to sit and watch movies or TV with them. Since people hospitalized with GBS will often take a lot of naps then its nice to just listen to the TV sometimes and know someone else is sitting there with them, not feeling the pressure to have to stay awake and visit.

      If they have Plasma Exchange it is REALLY nice to have someone there with you during the procedure. I would get thirsty during this and it was nice having my mom or boyfriend sitting there where they could go get what I wanted and also holdup the can with a straw in it for me to take a drink (or when I was even worse… where the could dump the can into a cup and suction out the liquid with a syring and inject it into my mouth for me when I needed it)