Five years

    • Anonymous
      July 16, 2009 at 2:13 pm

      For some reason I felt a little *tickle* in the back of my brain today. I looked back at a calendar from 2004 and confirmed that today was, in fact, the day I checked into a hospital five years ago to be treated for GBS.

      I had been sick with flu like symptoms for a couple weeks, but decided to go on that business trip to Hawaii anyway, thinking that I would visit a doctor after returning home. Big mistake!

      Well, ten days later, my mother and a flight nurse got me back to Massachusetts near my family’s home. I could barely move at the time. The good news, is that after six weeks I walked out of the hospital on wobbly legs. The atrophy had robbed me of full range of motion, and it would be another eight months before I would raise my right arm over my head for the first time.

      Fast forward to today. Today I am celebrating. My body is fit. I just returned from Spain, walking hours a day up and down hills. I lift three times a week and have gotten back to some serious weights! I have also been swimming a mile twice a week. If there are any remaining effects, they aren’t significant enough to notice – I think I tire more easily when in conversation or meetings, but that could just be age.

      The best news? At 35 I just married the most wonderful man, surrounded by many of the same family and friends who stood around my hospital bed back in 2004.

      Why this post? I’m certainly celebrating, of course. But I am also sharing. I remember how scared I was going into the hospital. And that fear only grew worse as I became aware how serious my situation was. I had a “relapse” after the initial effects of plasmapherisis wore off, and no one in the hospital knew what was happening (fortunately a good friend discovered that this can occur and was not symptomatic of something more serious). I also remember the joy of feeding myself again, standing upright for the first time, and walking outdoors after weeks inside.

      My heart goes out today to all those who are dealing with that initial fear and uncertainty. I applaud those whose recovery has been slower than mine. I wish you all joy and peace.

      Washington, DC

    • Anonymous
      July 16, 2009 at 5:48 pm

      Hi Jonathan:
      It is always interesting to me to read others stories. I have CIDP and had my first onset and hospitalization in March 2001. I can also relate to you the joy to be able to live a fairly normal life again and have those moments that were milestones once, become common.
      I enjoyed reading how your life has become happy and healthy again. I wish you all the best.

    • Anonymous
      July 17, 2009 at 3:29 pm

      Hi Jonathan,

      Thank you for sharing your story. It’s always wonderful to read that others recover most or all of their pre-GBS abilities. Congrats on the marriage as well!!

      Take care,


    • Anonymous
      July 23, 2009 at 9:37 pm

      Hi Jonathon, I loved reading your post. Next month will be my 2 year anniversary of GBS. My husband recently commented on how good I look — great color, peppy, etc…much improved over the past 2 years. I typically am a glass half full type of person, but GBS has tried me at every level. I am so far from the person I was two years ago. Due to my neuro symptoms, I can’t even imagine a time I will be able to climb on a plane or get on a boat to see Europe. Jogging or dancing are things I can’t even let myself think about for fear of the depressing thoughts that will follow. I read this forum and can not believe the fortitude of other members who had so much more to deal with than I did. My case was so “mild”. Yet, surprisingly life shattering. I am much more confident than I was a year ago that I may escape a relapse so my days are filled more with regular life activities than fear. I’m thrilled that some have found the “good ole life”. Congrats and happy adventures! Every morsel of recovery is so sweet! Luv2sail