• Anonymous
      April 23, 2010 at 9:20 pm

      Where was I a year ago? It’s a question that’s been floating around my brain lately. My health was severely compromised by GBS, an adversary I wished I had never heard about, much less experienced. This syndrome that was thrust upon me, left me paralized, gave me no choice but to accept it. In an odd sort of way, going from happy to helpless, it was “health’s perfect storm”.

      Today, I am back to about 90% pre GBS. As I was reflecting on this year, I was wondering what some of you might have used to help guage or pace your recovery. For instance, I used the idea of running a marathon, knowing that the race would be hard and unlike anything I faced before. I often would use visualization/relaxation techniques where I would dream of walking/running, even though I couldn’t move my legs. In an abstract sense, I imagined my recovery as one of those connect-the-dots puzzles I did as a kid. Move your big toe, connect a dot. Bend your arm, connect a dot. Go to the bathroom by yourself….let’s see….that must be worth several dots!!

      I think, in addition to having faith, being creative and having a lot of positive imagery really aided in my recovery. I’m interested in what helped you. Hope your week and progress are going well.

      Quote: “Let us look at the good of life, a little apart from our own particular sorrow”. George Eliot

    • Anonymous
      April 26, 2010 at 12:02 am

      Well, first of all Tom – happy GBS “birthday”. On that day we wake up paralyzed and realize that once again we are being thrust into the world as helpless as we were (oops, more than I’d like to own up to) ___ years ago – that is the day we call our GBS birthday. Two very important things have helped me through – from Dec 25th to now – my faith and my family. Faith kicked in right away as I lay in the ER praying to find out what had gone wrong with me. Faith several days later in thanksgiving when my neuro introduced us to the name of the beast – Guillian-Barre Syndrom. And faith again and again as I battled in PT, until I could “walk” again – halting, jumpy, bumpy steps gripping to the walker with all my might, grateful for the gate belt and Shelly who hung on tight. But walking. And faith now, as I do better and better, and pray that I’ll be strong enough to go back to school in August.
      Secondly – family. The wonderful husband who did not leave my side for 8 days, except to go home, feed the dog and change clothes. The same hubby who rubs my feet when they cramp, wraps them in blankets when they are made of ice – and who took me dancing to his high school prom 2 weekend ago. And my 84 year old mother who brought me birthday cake, ice cream and a party whil I was in the hospital. She hates to travel, yet talked my sister and brother in law to bring her to Tucson for the event. She was on the phone daily to check my progress (still is). She worries about me, loves me and is my greatest cheerleader.
      My sister in Colorado who has called more since GBS than ever before. My children who worried, called and visited. My granddaughter who somehow pushed buttons on the hospital phone and ended up transmitting our conversation hospital wide on the PA system! (She is 18 months old) My one daughter in law who has called every day since I got sick – yup, a daughter in law!
      Tom, knowing I can take everything higher and rely on my faith, and knowing my family is here supporting me, having confidence in me – and drying my tears. That is why I have gotten well as fast as I have. Great doctors have helped, too – and the right cocktail of medication. This forum helps – a lot. I know I am not nuts, I find that my aches, pains and symptoms are real. I think the list goes on and on, but it all boils down to this – a person can not walk this GBS trail alone. We need the support and love of others. And those same others are there to help celebrate our success. It is a longer walk than I ever expected. Heck, I didn’t even know this road existed a year ago.
      Sorry this post is so long – I am feeling introspective tonight. Best to all of you!

    • Anonymous
      April 26, 2010 at 9:15 pm

      Hi Cathie… The resilence of the human spirit is really astounding, but pales in comparison to things unseen from a higher order. Can’t tell you how much scripture helped in my recovery. (Favorites from Psalms, Proverbs, and I Corinthians chapter 13).

      I too had a lot of family support…my wife who read and held my hand in the darkest times…when you wrote about the foot rubs, it reminded me of how my brother would massage my feet and give much needed relief to my tingling toes. He did everything and more that one could ask of a big brother. And our daughter who at 20 gave up making money for college and being with her friends….who stepped up to the plate to help her dad in ways I wouldn’t have dreamed about. I could go on and on………but along with those simpliest of life’s things which I will not take for granted anymore the love of God and family is at the top of the list.

      I trust that you are continuing to take those “baby steps” to your recovery. For those new to GBS I implore you not to get discouraged, channel negative energy in positive ways. Remain strong in your commitment that you will indeed improve……and in the long road that we seem to be on learn how to not just survive but thrive. It won’t be easy, if you can get past the unfairness, hurt and pain, there are rewards along the way that will make you a better person. May good things continue to happen in your life. Take care…………..

    • Anonymous
      April 26, 2010 at 9:53 pm

      I think that anything that does not kill you does seem to make you stronger. I often wonder why God allowed this to my baby girl, but one thing that I know for sure is that I could never go back to the way that I used to be. I can never walk by a child in a wheelchair or using a walker and think none of it anymore. I just get teary at the sight. Good days seem so much better and the sun seems brighter although we are going through a time of numbness of heart right now due to recent bad prognosis. I love the imagery that you talked about. I believe that this is biblical. The bible talks about thinking of the good and the lovely and to meditate on these things. I have been trying to think of a day that all the problems taht we have will be gone. You have made great recovery. I cry for those people who don’t have someone to sit at their bedside or rub their feet and believe me there are many.

    • Anonymous
      April 30, 2010 at 9:12 pm

      Selahsmom….. It’s hard for me to imagine going through something like GBS by one’s self, without having faith, family or friends to help us in those darkest days. I’m fortunate to have had all three.

      I know what you mean about seeing people in wheelchairs….When I see someone in public in a wheelchair, I have several thoughts that have gone through my mind….from that was me 8 months ago, to do you have GBS?, to what happened to you?…..and finally empathy.

      I have tried not to play the blame game with GBS…did my best to accept it…In your case especially, there is no good reason for children to suffer…….I wrote to Cathie that from a scriptual standpoint it rains on the good as well as the bad of this earth. But there may be little solace in that for you when your child is hurting. I do find comfort on those hard days being able to give my problems over to God. I’m not talking about having a magic wand to make all the hurt go away, just the strength to cope with that difficult moment I am having. I pray that your child will soon experience relief from this terrible menace and begin the path to a normal life.

      Thanks so much for sharing your thoughts……on the cloudy days I remind myself that 20,000 feet above, the sun is as bright as ever….I hope that soon the burden and numbness will be lifted from your heart. Take Care………

    • Anonymous
      May 2, 2010 at 5:49 am

      Hi Everyone,

      When I read about the foot rubs, it also reminded me how that was about the only touching that really felt good after I came down with GBS. Almost all other parts of my body hurt when massaged, but those foot rubs were definitely a welcome treat. It may be something we could recommend to all care givers of people with GBS.

      On my recovery I had similar milestones of being able to do things on my own, but I also had many smaller goals or dots that I connected. For me going to a gym and using all the machines regularly helped alot psychologically as well as physically. The reason is that every week, I could see that I made progress on at least one of the machines — by upping the amount of weight I could move or by increasing the time on a cardio machine. So each week or almost each day, I just felt good about the small progress and didn’t worry about the fact that I wasn’t able to run or play tennis or climb mountains yet!

    • Anonymous
      May 2, 2010 at 1:54 pm

      Foot rubs & GBS?
      When I got GBS, my feet felt like feet do after they have been asleep and are tingling intensely with fiery pain. Touching them was extremely painful and maddening. What helped was stretching out all of the continuous foot cramps that were most severe in the first few months.

      I’ve been on my own with all of this; the medical people ignored all of it, and I didn’t find this site till many months later to even begin to understand what had happened to me and how to deal with it.
      No friends, near-by family or neighbours to help me out.
      But God kept me alive and I have recovered about 30-50 % after 2 1/2 years.

      This ongoing GBS pain, damage and paralysis is one of the worst things I’ve dealt with in my life. I only know one thing that has been worse than this and that is dealing with the shooting death of my son. I am learning how to survive that, and whenever GBS seems to be too much, I tell myself I can also survive this ordeal. We’ll see.

    • Anonymous
      May 2, 2010 at 4:53 pm


      The more I read about the stories of GBS survivors, the more I realize how unique each of our stories is. I can’t imagine having to go through this ordeal by myself. I believe that along with faith, you must possess a strong tenacity for survival. I suppose in the final analysis, we each had a time when we were at a crossroads… I fight this syndrome or do I simply cave to its whims and let go? It is a deeply personal decision. Thankfully, you have chosen to fight this “monster”, (on your own) and become the best that you can be. People need to be inspired by stories like yours to be given hope that tomorrow can be a better day.

      Life is changed forever for most GBS sufferers…you have the statistics to prove that. But one thing that is not measureable is the resilience of our human spirit and the strength in our heart to go another day. In the toughest times I always clung deeply to the idea that if I could hang on one more day, things would be better. I am glad that you have chosen to move forward against the many obstacles you are facing. I think you will be rewarded for staying the course and wish you all the best.

      Okay………on the lighter side of things,…..I’ll put you down on the “no foot rubs” to be given list. Take care and may this week be filled with many good things for you.

    • Anonymous
      May 2, 2010 at 5:27 pm

      [SIZE=”2″][COLOR=”RoyalBlue”]Hello Tom.
      I am on my 3rd yr of recovery from GBS. I was very blessed as what I had was mild and caught in time. I went from a flu shot to crawling through my home. Then I was put in the hospital and didn’t know what I had. I had never heard of it.
      I spent 5 days in the hospital and had 5 IVIGs. Got out on a Sat and started therpy on monday.I was in a wheelchair and it taught me and showed me what it is like to be handicap. To see people look the other way when I was trying to open a door or when I was useing a walker and cane I was invisable to the ones sitting.
      It open my eyes to the handicap for life and now when I see someone I say Father bless them.
      I speak out to anyone who will listen to the dangers of flu–neumonia or any shot made with eggs.
      I still have some numbness in my feet but have learned to live with it.I do most anything I like Now. but still come here every day as the angels here sure gave me love and guidance. Bless you and never forget the ones sent to you from the great one. Your friend (Lakoda)[/COLOR][/SIZE]

    • Anonymous
      May 2, 2010 at 6:37 pm

      You may have had to weather this by yourself – with nothing but heavenly support, but I want you to know your posts have meant the world to me. Your love of the garden, your faith, your positive attitude have been there when I’m feeling down. Thanks.
      My foot rubs only work when it is my hubby working out the awful cramps – to have a foot massage sounds like a prescription from h___. Ah, so we each differ.
      Yesterday I went to Joanns Fabric store in my wheelchair. A lovely lady (employee) held the door open for me. Several customers helped me reach the elastic or fabric that was too high reach. I turned the corner into one of those center isle displays and was stuck. Another customer just shoved the whole display down the isle so I could get by. Every step of the way someone helped. I was humbled, and vowed when I am out of the wheelchair I, too, will be a helper rather than a “looker away”, which my grocery is full of. I agree – our society is so P C that we think it is offensive to notice someone’s disability. I actually am pleased when someone has the guts to engage me in conversation. It gives me another chance to do some GBS instruction.
      This is a great thread – thanks for statring for us, Tom!

    • Anonymous
      May 2, 2010 at 8:58 pm

      I really like how we can come to this site and share our triumphs and yes our sorrows without fear of rejection. It is a tribute to the each of you who share your stories and lay your hearts out on your sleeves if it will help someone through a difficult time. My gratitude is immense for every one of you.

      The last couple of posts by Mochacat and Cathie talked a little about how the public treats or reacts to those in wheelchairs and walkers. Each had different experiences. Why do you suppose some people run away and others can’t do enough for you? My wheelchair experience was mostly positive.

      Don’t you just love how a thread can somehow morph and take on a live of its own? May all of you have a great week …………

    • Anonymous
      May 3, 2010 at 8:17 pm

      Dear Tom.

      It was almost 34 years ago that I woke up with “fuzzy feet” and ended up, within days, on a respirator and totally paralyzed. I had ever heard of GBS and the first question I had for my doctor was; “Will I survive?” He said that I probably would. With that in mind, not that I totally believed him, I began to make my deals with God. I was pregnant when I came down with GBS so my first request of God was that my baby not be affected. My next request was that I would get off the respirator. Once off the respirator, I then asked God if he would give me the ability to swallow again. I could not swallow for 45 days and I was so darn thirsty. ( A little note here; hunger goes away eventually, but thirst does not). Once I could swallow again, I prayed to God that I would be able to walk again. In time, I was finally outfitted with a pair of the ugliest orthopedic shoes available and took my first tentative steps, with the help of parallel bars, and I knew I would walk again. Then, I thanked God for helping to bring me through this and asked for one more thing; that I would not be left so disabled that I could not raise my children.

      Did I recover 100%? No, but I recovered more than I thought was possible and I try to remind myself, everyday, that it could have been so much worse. Now, older and hobbling a little more, I try to think of all the ways I have been blessed. And, in case you are wondering, I now ask God to let me be healthy enough to help raise my grandchildren.

    • Anonymous
      May 4, 2010 at 6:58 pm

      Hi Boomerbabe,

      Thanks for sharing your story of faith with me………….and the others who read this. GBS is so compromising on its own, let alone being pregnant. That must have been a very frightening time for you. Because of your faith, you were able to persevere through those rough times by setting and reaching goals. It gives encouragement to hear those kinds of stories.

      When I lay in bed so many hours while recovering, I think the most prevalent goal for me was…just let me walk again. How fortunate I am that wish came true.

      I think that GBS sufferers should publish a “GBS for the Soul” book…….then Hollywood could take a story like yours and make a full length movie out of it. What could we call the movie? “Boomerbabe Beats GBS”…..take care

    • Anonymous
      May 5, 2010 at 11:01 am


      I think that setting goals during recovery is essential and also acknowledging improvements. I was so severely ill that I often did not notice the little improvements and would get frustrated. Fortunately, my mother would point out every improvement, no matter how small. By pointing these out to me, I realized that I was recovering, albeit slowly. As for my faith, it and my family pulled me through.

      If you have not read it, Joseph Heller wrote a book about his bout with GBS;
      “No Laughing Matter.”

      Take Care, Susanne

    • Anonymous
      May 5, 2010 at 7:40 pm

      Hi Susanne,

      Thanks…. I had heard about the Heller book and read some critiques about it on Amazon, but decided not to get it. Think I need a little more distance from my own case………….

      It does seem that improvements come very slowly, almost negligible at times. We being the irresistable force and GBS the immovable object…..I am glad the irresistable force is winning!!

      I also was reflecting on how most of our successes are measured in physical ways………….but today as I was mowing the lawn, the smell of our lilac trees brought on a whole new arena of olfactory sense I had taken for granted………..along with vision at the sight of the beautiful blue sky….it reminded me about your craving for water….how satisfying it must have been for you once you could drink again. We have so much to be thankful for, in many different ways. Hope the week going well……….tom