recovery, Exercise, and Vaccines for itnernational travel

    • Anonymous
      May 28, 2008 at 12:06 pm

      I love traveling internationally, and after June I will be 1 year past my last IVIG treatment, and my doctor told me to avoid any vaccines for at least a year after my last IVIG treatment. From reading on this website and others dealing with vaccines and GBS I am now concerned that maybe I should avoid vaccines all together going forward. The problem is I love to travel around the world, and would like to continue doing so. IS there any sort of waiver you can get to avoid having to get vaccines when traveling into other coutnries that normally require them?

      For those going through this the first time, I have been a “Lurker” here since I was diagnosed last April with “GBS variant” after three months of being mis-diagnosed and treated incorrectly with steroids by various medical facilities I do think the steroids gave me some permenant damage I may not have gotten if correctly diagnosed. I can’t be bitter about all that since my symptoms didn’t match the typical GBS diagnosis and it took a long time before I got to a neurologist who had experience with GBS and did enough reading to find a single case that mathced my symptoms almost exactly. Since the case I received is very minor compared to many on this site, I consider myself very lucky to still have my job, the ability to walk without any difficulty, and some minor facial paralysis that you only really notice when I try to smile or laugh as residual effects. Some of the stories I have read here, especially regarding kids or young adults have broken my heart a few times, but I think it is also great that people lend a shoulder to new folks going through this for the first time.

      Does anyone here have a job or an addicition to traveling internationally, and if so do you get vaccinated or is there some sort of waiver I might be able to sign to avoid the vaccination requirements because of being at high risk for a GBS relapse?

      And other then swimming, for those who may be dealing with health that is good enough to get back into exercising, are there any exercises you have found helpful in improving your reaction time for your legs?
      (I.e. right now when i try to run or jog, often times my brain tells my legs to move, but there is enough of a delay in that getting to my legs that I often times stumble or trip when I try and do so.) My arms seem to be OK, but I do have some issues with typing where i type out a full sentence and realize that many of the letters have been entered incorrectly because I am not typing as fast as my brain is telling my fingers to type sometimes. Thank goodness for spell check. Are there any exercises you have found that over a long period of time help you get back some of your reflex time. I know it will never be back to normal after the nerve damage I have suffered, but I’d like to be able to get to the point where I can jog slowly again without fear of tripping so much.

    • Anonymous
      May 28, 2008 at 1:36 pm

      Hey Glenn,
      I would caution you to just be careful as you travel.
      I am a former Intl Flight Attendant and I have CIDP now
      I first was diagnosed with GBS and thought I recovered
      went back to work for 3 months and became severely
      worse, we are all different but having a low immune system
      we are all more susceptable to airborn viruses. Having
      said that I wouldn’t ever tell someone not to travel if they
      want to for I feel it is the greatest life experience one can
      have. So enjoy your life while you are able but be very
      careful on the countries you pick because it’s not worth
      risking your health. On the vaccines some are only highly
      suggested mostly for good reason but not always required.
      Check with the consulates.

      Have fun,

      Joyce

    • Anonymous
      May 28, 2008 at 7:53 pm

      Glenn,
      Thanks for bringing up this subject. I could not travel because I took care of my mom in the last five years of her life. Since I was a teacher, I had planned to travel in the summers. Then GBS hit. I had to retire early and now fear the immunizations. I had hoped to visit Egypt, India, Nepal. I even found someone who could get me into Bhutan – where the Gross National Product is Happiness!! I am even scared to fly in this country due to the fact that the air is circulated so you are exposed to everyone on the plane. I am giving my body a good two years post GBS until I even consider flying. I stayed away from people this past winter to lessen my chances of getting a cold or flu. My first international trip was to Lithuania and Russia when there was still an Iron Curtain. The second trip was backpacking alone through 10 countries in Europe. The third trip was Italy and Greece. I usually travel alone because I cannot find people who are as passionate about traveling as I am. PLease let me know what you find out.
      Amanda,
      Any countries that you would suggest I avoid?

    • Anonymous
      April 9, 2012 at 10:53 pm

      Kinda of a VERY late update here (almost 4 years) but I did finally get the nerve up to fly internationally again, and elected to go the safe route, and hit an area of the world I love the history from, but had never visited. I flew to England for a Friend of mines brothers wedding, and she and I traveled all over the place in England and Scottland. It was a great trip, and no ill effects from the flight, or the tons of walking and hiking around the streeet and hills of the various sites we saw there.

      I know this is pretty tame to start with compared to many, but I have found over the years since my diagnosis with GBS that I tend to get faigued much more quickly than I would like even though my actual symptoms of paralysis in my legs, face and arms have improved a TON since I wrote this initial forum posting. I still am very weak in the upper thigh area of my legs, but my hands dexterity is almost back to what I remember it being (some fairly regular typo’s when my hands fail to keep up with what my brain is telling them to type), and I am trying to slowly get back into more exercise programs that push my limits more so I can try and be in better shape when I start hitting other areas of the world I want to travel to.

      So overall I’d have to say I am very lucky in my current situation. I am still SLIGHTLY limited physically for normal day to day activities, and moderately limited in things like jogging or running, with some imbalance, and fatigue but its not debilitating enough for me not to gte on with life, my biggest issues over the last few years have been forcing myself to get back out with friends and family instead of cocooning myself at home with the internet and some occasional excusions with friends.

      does anyone have any recommendations on exercise programs that have worked for you to improve sength in nerve damaged areas of your body, particularly legs?

    • GH
      April 9, 2012 at 11:17 pm

      If you can run at all, I’d say that’s an excellent recovery! I walk without a cane now, but wouldn’t think of trying to jog. I use a bicycle on a training stand at home to exercize my legs. It’s the only way I can move fast enough to get my heart rate up.