I’m new to this

    • Anonymous
      June 20, 2006 at 9:42 pm

      Hi, I’m new to all this. I was told I have this back in April, after an EMG.
      I have damage from my elbows down and from my knees down, and am in PT 3 times per week.
      I’m going out of my mind, I cant do much, and for the most part feel useless.
      how do you all pass the time?
      At the ripe old age of 43, I have people telling me how COOL my walker is, is it bad of me to want to run them over?
      My dear husband has wanted a boat for years, this winter, we found one, and I cant hold a fishing pole, I am realy bent.
      does anyone els thik this GBS crap SUCKS?

    • Anonymous
      June 20, 2006 at 10:00 pm

      Hay Netski,
      thats a cool nick.. Yes, GBS Sucks. So do CIDP, and lots more thangs I could name.. Welcome. Come along with me and learn about me and some of the folks here.
      I spend alot of time surfing the net. I been expressing myself here alot..Like u and I, some peeps have alot of time on their hands.. tell us about yourself. Were u are, what u do, How ur doing. I’m intrested…
      follow me to keeping sane..

    • Anonymous
      June 21, 2006 at 12:29 am

      HI NETSKI, WELCOME TO THE FAMILY. YES I’M WITH YA, THIS CRAP SUCKS AND THEN SOME. JUST KEEP A POSITIVE ATTITUDE AND THINGS HAVE A WAY OF WORKING THEMSELVES OUT. YOU WILL HAVE TO TAKE CONTROL OF YOUR BODY AND LISTEN TO IT WHEN IT NEEDS REST AND TRY TO KEEP PHYSICAL AS MUCH AS YOU CAN STAND, WITHOUT OVER DOING THINGS! REST AS MUCH AS NEEDED. sorry just noticed the caps button was on-i’m not yelling just not looking at the monitor when i type with my 2 fingers. you need to find the new norm for you and don’t ;et others tell you what to do or not do. if you check with a reputable fishing store like cabellas, ask them for ideas for disabled fishing pole holders and rods or whatever, where there is a will there is a way!! i’m 42 and now i’m just trying to use a cane, i decorate my cane, i get alot of comments on it from older people. if i over do things and have problems walking i use my crutches, for really long distances i use my wheelchair. gbs also stands for getting better slowly, rest and don’t over do. take care.:)

    • Anonymous
      June 21, 2006 at 1:12 am

      Hello. Although so much is going on in life, I try to keep a smile on my face, because I am the “shining crystal”. The reason why I was born is to bring happiness to the others. So, I want to see everyone here to give me a smile! (from your heart, don’t force one out) ๐Ÿ™‚ Happiness is like perfume, so put a drop on yourself!

      ๐Ÿ˜€ <-- yes, a big one is even better. (Now, everyone probably think I am crazy.)

    • Anonymous
      June 21, 2006 at 1:38 am

      Well, sorry you are at this stage of things. One coping mechanism that worked for me is doing even the smallest kindness for someone else needing encouragement, by mail, through cyberspace, over the phone, in person. Sometimes by reaching out to others, we find a new distraction that’s positive for the spirit, and this helps heal the body, too! Mailing the simplest token of thoughtfulness to fellow patients can feel sooo good on both ends of the giving and receiving chain. Best wishes!

    • Anonymous
      June 21, 2006 at 5:42 pm

      this is a vary refreshing place to be. I’m married to a vary wonderfull man, who has kept his word when we said our I doe’s. I’m a cheese head, WI.
      I love to garden, and can my own food, alot of that will be out for me this year. I also love to hunt and fish. Da hubby and I got married opening weekend of bow season, LOL a polish honey moon. I have 1 child shes 24 from a previous marrige. ontil last week, she was liven across the street from us, she got evicted because of her loser boyfreind, drugs, and da boyfreinds nut case mother.(vary long storie). I also I IBS with da trots, when its hard for me to get going, makes it a race.
      I tend to push myself vary hard in PT, they keep tellen me to slow down. I had my own cleaning company for 19 years, I even clean for a few of the Chicago Bears when I lived in IL. My hubby asked me to give it up 3 years ago, I tend not to slow down,so the past few years have been a bit off for me.thats me in a nut shell. Thanks again for the vary warm wellcome. and my name is Denette.

    • Anonymous
      June 21, 2006 at 6:01 pm

      welcome cheesehead,

      scott & i are also of that odor, oops, i mean order. i only say that cuz i think farve should not have stayed another year. hope i am wrong. hate to see my/our team nosedive. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 22, 2006 at 12:24 pm

      dear netski,

      i am new to this awful thang called GBS at age 32. i am
      also having a hard time adjusting to my new form of existance
      that has confined and bined me to spend alot of time in a prone
      position. i was very active before and now i watch the morning
      show, tons of movies, read, and do phsical therapy with my mom
      twice a day. i also daydream. This really does suck, i agree! why me
      i ask. what did i ever do to deserve this. why am i not getting better
      faster. what the F? this is so crazy, never in my wildest dreams could
      i have ever imagined i would be struck down with such a thing! I cannot
      even see strait now- i have double vision and am currently wearing an
      eye patch. THIS IS REDICULOUS!!! anyway to switch over to a positive
      note-You must keep telling yourself that 1. This is not forever you will
      get better. 2. You didn’t die in a car accident or become paralyzed
      permanently. 3. One day you will be able to look back at this crap
      and say wow that was crazy egh? best wishes to you netski-hang
      in there cuz thats about all we can do right now.
      sayz mizliz

    • Anonymous
      June 22, 2006 at 6:10 pm

      boy can I relate to you. if ya ever want to talk, e-mail me your phone number and I can call. I have unlimited long distance now, and plan to se it to death if i can.
      I got to PT 2 times a week, and work at home.my e-mail is [email]netski@charter.net[/email]
      Chances are they are going to put me in the pool next month and see how i do. I have a special life vest for da boat, but am somewhat chicken about going. I’m not even close enough to swim yet.
      I’m going crazy because my house isnt clean, and I just cant do it all.Being in the cleaning biz for 19 years makes it that more NUTS. anyway, you hang in too.

    • Anonymous
      June 25, 2006 at 12:14 am


      I am 6 years post GBS. Yes, it sucks big time. My doctor wasn’t agressive enough, and I have to use two canes to get around.

      But you know, all that time that I was laying prone and couldn’t do anything, I asked God if I could just be able to walk and clean my house. My husband tried but he didn’t do it like it should be done.

      While I was in my wheel chair, I washed the floor. It only took 4 hours but it felt sooooo good to see a clean floor. We all know exactly how you feel about now being able to clean or function the way you did.

      Take it easy, go slowly, exercise every day as much as you can without over doing it. We have to take tiny steps to eventually take bigger steps.

      We are all with you…….


    • Anonymous
      June 25, 2006 at 9:57 am


      Yes you are right, GBS really sucks it big time. I am 32 as well, was very active, working P/T, a P/T nursing student in the junior year, and raising two young boys, and then this. I am lucky I must say, I think speedy plasmapheresis has helped me alot. I can walk, go places again (within reason), clean some stuff, and I am back to work p/t and increasing my hours slowly until I resume full time in september. The financial and health strains of this disease has made it so I can’t return to school anytime soon. ๐Ÿ™ My dream was to help patients, and I ended up on the other side of the spectrum. But like everyone has said, you find your limits and, like Oprah, find a “new normal”. I try to focus on the good things, like, look at all the time I have had at home with my children now. When I was in ICU, I prayed to god to let me see my children grow up, so I am getting my wish. When I was in school, I was missing out on them so much. I am thankful for the roof over my head, and to see the flowers growing and the birds in the backyard. Hang in there, if u wanna chat, my email is [email]cara922@ptd.net[/email].

    • Anonymous
      June 25, 2006 at 9:26 pm

      Ya know, I think about this woman I cleaned for, I did for 8 years, she was in a wheel chair,she had polio,, she would get on her butt for years and clean up her floores, and she had a house full of farmers.
      What am I whinen about? she went to town, but its was rare, she loved to garden like me, andf when she could’nt, I planted and weeded for her, she did what she could.I do have a question. what is IVIG, and why didnt I get that? I’m thinking because my case is mild, if you can call this stuff that.