Your Replies

  • November 23, 2016 at 8:10 am

    I had GBS 4 years ago. I had the Prevnar 13 shot a year ago on the advice of my PCP. I’ve had no issues.


    September 18, 2016 at 10:53 am

    When I was a little over 3 years I had another round of P/T specifically directed at improving my balance. It really helped. Though you will never find me on a balance beam, I now get up without holding onto the nearest stable object. And, in the last 8 months I have not fallen at all.


    August 15, 2016 at 10:42 am

    Here’s my timeline as I recall.

    10/15/12 – Went to hospital slurring my words. Otherwise,felt okay.
    10/16/12 – Coma begins. I think they added the vent then.
    12/10/12 – Wake up. Not exactly sure of the date. Pretty close since it didn’t seem that long before they shipped me to rehab hospital.
    12/19/12 – Arrived at rehab hospital. At this point the only movement I had was being able to touch my right ear with my index finger. My left wrist was limp and my right foot was dropped.
    1/24/13 – Went home. I was able to go maybe 50 steps using a walker. I needed assistance to get up to use the walker. I used a fork with extensions.
    1/29/13 – Started out-patient OT and PT.
    2/15/13 – Graduated from the wheelchair. Was able to get up on my own to use the walker.
    4/15/13 – Graduated from walker. Had an ankle brace on my left leg, a brace from my knee to my ankle on my right foot, and used a cane with 4 legs.
    4/19/13 – Had first movement of the wrist. 3 days later my OT measured it a 19 degrees. Not much but a major highlight.
    5/31/12 – Finished OT. I am still doing at least half of the exercises daily. My left wrist works fine but it still is not as strong as the right one. Also, on this date I started water therapy.
    7/31/2 – Finished PT. I was able to walk unassisted though with a noticeable limp.
    12/15/15 – Started balance therapy. As far as I understand, the muscles we develop as we learn to walk (and before that) as a child lose their tone after all that time I was not able to walk. With the daily exercises I was given from the PT, my balance has improved dramatically. Now I can just get stand up without feeling I might fall. As an extra benefit my PT corrected the way I relearned to walk. My right foot is now doing heel to toe. I was walking flatfooted so as not to fall. That style is no longer necessary.
    8/15/16 – Currently, my arms from my shoulders to my wrist work fine but always feel a bit stiff. Sort of like waking up and needing to loosen up. I don’t have all the feeling back in my fingers but I can now do normal buttons but don’t ask me to pick up a penny from a table. As I mentioned before my left wrist works fine but is slightly weaker. My right leg from my knee to my ankle aches a bit all the time especially at night. Most of the time I can ignore it. I do lose a couple of nights sleep each month. My right ankle is somewhat diminished but considering it didn’t work at all I’m quite pleased with its progress. And as all of use know, we learn to live with uncomfortable feet. I assume my are no better or worse than the rest of us.

    I hope you find this helpful.


    July 24, 2016 at 8:00 am

    I had absolutely 0 movement in my left wrist for 6 months and 4 days(who’s counting). But, the next day it moved a bit. The day after that I had OT and she measured the movement at 19 degrees (which isn’t much but it is not 0). That was late April 2013. Today, I have complete use of the wrist with slightly less strength. I still do my OT exercises daily so that maybe someday all the strength will return.

    Keep up the support. He’s lucky to have you.


    July 24, 2016 at 6:40 am

    Here’s something I found comforting early on (I wasn’t alone in how I felt) and I hope it helps you. When I first was able to use a walker I would get up after sitting a awhile and those first couple of steps were awful. The feeling was like my calves were going to tear. Well they never did. And pretty soon that went completely away. Hope you find this helpful.


    May 20, 2016 at 1:50 pm

    I was loaded up with all the shots in September 2012. My granddaughter was born 10/1/2012. I got GBS 10/15/12. I’ve never received a vaccine since September 2012. My grandson was born 7/13/2015. I have been baby sitting regularly from the first week. My grandson is okay. Me too.

    Good luck. It’s going to be a tough call. But, for me, I’d rather wait awhile to see the grandchildren than go through GBS again. I hope you don’t have to make the choice.


    October 25, 2015 at 8:01 am

    They tried those boots on me too. But, my feet were so sensitive that I could not bear to wear them. The fluttering of the sheets when anyone walk by the foot of the bed was excruciating. I did however, try to put my feet against the foot of the bed to stretch them out. When I could bear having them touched (my right/dropped foot especially) the most effective attempt was when a therapist placed it against their chest and leaned forward. That didn’t begin until mid January, about 3 months in.

    October 24, 2015 at 6:37 pm

    I might be using the wrong term. One piece of equipment I was strapped in as if it was a bed and raised up close to 90 degrees. That was okay. The other I was strapped in and they tried to straighten my legs and stretch out my Achilles tendon. That was unbearable. I thought the later device was a tilt table. I guess I got the names mixed up.

    October 24, 2015 at 6:16 am

    Your father’s GBS seems to be quite similar to mine. “Luckily” for me I was unconscious (10/16 – 12/10) during the time I had a trache and pneumonia so I had a later start on the mental anguish he is now going through. My wife tells me that the respiratory doctor was very aggressive. Fortunately his approach worked for me.

    On 12/19 I was shipped to a rehab hospital. At that time I could bend my right arm to touch my ear but no other movement. My left wrist was limp and my right foot dropped. I also had extreme difficulty swallowing on my own which required several weeks of therapy to correct. Also, I did not have the strength to change the channel with a remote. The buttons were too hard for me to press. When I was released on 1/24 I was able to take about 100 steps using a walker and get from my wheelchair to either a couch or a car.

    On 1/29 I began out-patient physical and occupational therapies which continued until 6/30 for occupational and 7/31 for physical. By 3/1 I was out of the wheelchair and using the walker exclusively. On 4/19 (the Saturday before my birthday) I had the first movement of my left wrist. I can’t be as definitive about my right foot since I was always working it with the walker. Though not perfect it is no longer dropped. By 7/1 the walker was gone and I was using a cane with braces. By 8/15 I was walking (with a noticeable limp) and began drive.

    Today, 3 years out (10/15/12) I still limp a bit but I am able to play golf 2 to 3 times a week. I continue to do my therapies for about an hour a day. My left hand remains a bit weak and my right leg aches a bit. I always feel I need to loosen up a bit but can’t quite do it. And the feet. Everyone who knows me stays clear of them.

    If you ever hear that the want to use a “tilt table” REFUSE. It is extremely painful and did nothing to stretch me out. Also, keep in mind that time drags for your father. He can’t believe that he will ever be able to do anything but lay there. He really needs your support.

    Please let me know if I can be of any help.


    August 31, 2015 at 8:38 am

    Sounds somewhat similar to the symptoms I had with Lyme disease but nothing like those with GBS.

    April 30, 2015 at 7:06 am

    I’m assuming I’m not the first to make this point but isn’t it possible (probable?) that the whole vaccine argument is backwards? Maybe the real culprit is a flawed immune system. I too had a flu shot about a month prior to getting GBS. I also had flu shots for at least the previous 10 years with no ill effects. But, prior to GBS I had shingles and lyme disease. So, sometimes my immune system worked and other times not. Oh yeah, I got GBS in October, which I believe is during the flu season.

    February 27, 2015 at 11:18 am

    Firefox is difficult to use too.

    February 27, 2015 at 11:16 am

    Jack, I have also used Predisone with no adverse reaction. I got GBS in 10/12. I first used Predisone in 1/14 for my back. I’ve used it every 4 months since. I started with a 6 day ttreatment and now use a 12 day. The only result for me is relief for my back. Eric


    September 30, 2014 at 6:08 am

    I agree that fixing this website is a must. Oct 15 will be 2 years for me. I will always be grateful for many of the insights I learned, especially during the first year.

    September 24, 2014 at 4:33 pm

    Click on “GH”.