Aboard at last

    • Anonymous
      February 21, 2007 at 5:44 pm

      Hello Friends,

      I was diagnosed with GBS November 9th as a mild case. My hospitalization was six days with five successive IV-IG treatments. I had no upper body involvement, but my balance was out of wack (and still is). My symptoms are the worst on my left side. Actually that’s a blessing because I’m not dependent on my working wife as far as transportation is concerned. I have a great deal of trouble using the parking brake and exiting from the car because my left leg is practically useless, even after several weeks of physical therapy and multiple visits to my Neurologist. I walk with a cane when I can and with a walker at the beginning of the day and toward evening when my stamina is least and weakness is greatest.

      It’s obvious to me after three-plus months that remylination is not the solution to my problems. This has contributed to an inner rage at this turn of events (let me assure you that I keep a happy face and attitude towards my family and friends). Also, I am grateful, and feel compassion toward those of you who have had far more debilitation than I in your bouts with this disease. Why I am angry is that I am 78 years old, (was) happily retired with the time to do as I wish, with a health base from a lifetime of running, including marathons. Now this!

      So–here I am, open to any advice, encouragement or nagging that you wish to deliver. I get a lot of that already but not from those who are in the same boat as I. Your input I can accept!


    • Anonymous
      February 21, 2007 at 5:55 pm


      I completely understand your frustration and anger at having this happen.
      But the good news is that you are really early in your recovery, believe it or not! Don’t give up on gaining better strength and mobility. Many of us with GBS are still seeing improvement even years later. I hope you will be surprized to see how much more recovery you will have yet to come.

      Best wishes,


    • Anonymous
      February 21, 2007 at 7:55 pm

      😮 After rereading my post I recognize that I’m doing a “poor me.” Thank you Suzanne for telling me to get off it–that I’ll get better. My neurologist is the nicest and most supportive doctor I’ve ever met and he keeps telling me the same thing.

      I do want to tap the experience and intelligence of this group about some of my recovery over the past three months. I think my balance [B]is[/B] getting a bit better though I have a lot of trouble with rugs. If I don’t turn slowly by inches I’m likely to do a twirl and crash into something. I have had leg spasms when I go to bed but my doctor prescribed an anti-seizure drug that knocks me out for at least seven hours. The most worrisome thing is that my hip joints and my knees are very painful. Occasionally I’ll put weight on a leg (like going down stairs) and either my hip or knee gives way and I crash to the floor (unless I’m gripping the banister).

      By the way, I met a fellow just a couple of years younger than me who came down with GBS about the same time as I. He’s thrown away his cane and is happily normal. God bless him.

    • February 21, 2007 at 10:03 pm

      Hi Gerry welcome to our family! As always we are sorry to have to find each other under these circumstances, but there is power in numbers 🙂

      You are fresh to all of this…I was hit last year in July and am still new to it also. Recovery takes time and it different for each of us. Some that were struck hard can recover quickly and very well, others will be slower and may never be 100%. This is the same for mild cases. I have done so much research (as I am sure all of us have) and the positive outcome seems to be very high regardless of how bad off we started out as. My doctor told me he would love to see my at the 6 month mark (passed already darn it) and hear me say I dont need to see him anymore. He also said it could take 2 years or more. No one knows for sure. BUT healing is always happening in some way shape or form. Sounds like you are doing great so far and it will get better from here on out. Dont be surprised by set backs (they are disheartening but happen), but remember TOMORROW WILL BE BETTER. The biggest hurdle I am dealing with right now is fear of relapse….will be seeking help for that. Wonder if it could be classified as Post Traumatic Stress Syndrome? I dont know, but I am tired of being afraid. I still experience tingling and small amounts of weakness in my legs (mostly my left), fatigue if I overdo it or am under stress, but my strength overall is almost normal again and I can feel a difference in my body. Take good care of yourself, do what you can and remember not to push yourself too much just yet.


    • February 21, 2007 at 10:31 pm

      Gramps…It’s hell. I was 64 in Aug ’05 when gbs came along. Not retired but I hear what you say about enjoying and not having to worry so much about supporting a family. I spent 2 weeks in CCU, 2 weeks in specialty hospital to wean off the vent, 5 weeks in acute rehab hospital, and 6 weeks out patient therapy.
      I can tell you that progress is slow and somtimes it seems like you will never get back. When I came home and had to get up a few steps with the walker, I was scared to death; but for me recovery has been good. I was able to get back playing golf last spring….walking on grass the first few times was perilous. I sure appreciate the effort that goes into physical rehab, and the feeling that I can’t do it. BUT you can, because we believe in you!
      Keep the faith.
      Papa AL

    • Anonymous
      February 22, 2007 at 9:28 am

      Hi Gramps, Welcome to the Family. please don’t be too hard on yourself, you are still just a “Babe” at all this stuff.:D i’m younger then you and i use a cane outside of the house-inside only when necessary, and a wheelchair for long distances. please use all devices at your hands for stairs-railings, canes, walkers etc..you don’t want to fall and fracture your pelvis-take it from me-it Hurts! why use the parking brake? i don’t when i’m able to drive-not enough strength to push it down. as we “old timers” say to newbies-Be patient, don’t feel like you need to rush your recovery. it will take time for your nerves to come back-you might have to deal with a new normal, but you are here and can do it, in time. it sounds like you’re doing great so far, just don’t over do it, get plenty of rest and ask for help when needed. i think that is the hardest thing to do, asking for help, next to be patient, but it is the most important thing to do for a good recovery. feel free to ask all the questions you want and to vent when needed. stay positive and take care.

    • Anonymous
      February 22, 2007 at 10:38 am

      I am so grateful for your uplifting messages! I’m not known as a softie, but I was blinking away tears as I read them. Thank you Suzanne, Lori, Al and Cheryl. It really helps to get this kind of support from those who have or are experiencing this disease (oops, I mean syndrome).

      Like all of us I have to rely on my mate or others to carry on other aspects of living. We have a frisky 2-year old Black Lab that needs a lot of walking. That was my responsibility and my joy (I love Keppie almost as much as I love my wife!) and I considered that not a chore but part of my personal exercise regimen. We put on about five miles a day in three trips around the neighborhood.That was the equivalent of my running habit which has gone into history. Now my wife Elaine takes him–twice. So I drive him over to my daughter’s home so he can run in their fenced in yard. Gets me out of the house.

      There hasn’t been much discussion about how GBS takes us down. In my case both my neurologist and I think that it was a bacterial digestive attack. About two weeks before I landed in the hospital I had a really bad three days with a “stomach flu.” Chicken is a staple in our house since we eat a minimum of red meat. Chicken has been a carrier of Campylobacter J Juni (about 80% infected). And Campylobacter has been implicated in a high percentage of GBS cases. If this sounds too academic, forget it. Just my curiosity.

      One other thing. I live in Indianapolis, Indiana which has a marvelous medical community. My doc has referred me to a) a neurosurgeon. It seems that an MRI shows a possible disc fracture, and to b) a rehab physician. More opportunities to get out of the house.

      Thanks again. I’m feeling more positive already.

    • February 22, 2007 at 1:02 pm

      Chicken scares me now…I cook it within an inch of its life before I serve it. And even then, I will rarely eat it myself now. Someone else here is a “chicken overcooker” now too (made me feel relieved to hear that I am not the only one).

      I believe my intro to GBS came from a day at a local beach last summer. I cut my toe on a submerged rock and immediately had a wierd sensation spread over me that what had just happened was not a good thing. Cant explain it exactly but maybe somewhere deep inside I knew something. I found out later that the beaches had been posted recently for a sewage spill south of our border….and we all know water moves and bacteria doesnt know boundaries. I met a woman whose hubby had been fishing near where the kids and I had been wading and people watching (during the exact same time give or take a day or two)…he also got sick around the same time I did! He had been holding hooks and such in his mouth and of course didnt wash up while fishing. His symptoms were just like what I went thru only milder. Strange huh? I would love to find out if anyone else got ill around that time and had also been to the beach, but how would one go about finding out that sort of thing?

      You will be walking your beloved Keppie soon. And he will know to take it easy on ya and love you dearly as always. They are so in tune with us and understand more than we realize.

      We’re here for you!


    • Anonymous
      February 22, 2007 at 4:43 pm

      Hi, Since I found this website 1 week ago it has helped me so much.
      I was diagnosed with severe GBS on October 30, 06. My story is listed under How not to Retire. As your date is so close to mine I would like to keep in touch to see if we are dealing with alot of the same symptoms. I have such weak legs if I am on them very long. And by 4 in the afternoon I hurt so bad in the small of my back, and the back of the neck. And then my whole body trembles. I am trying to rest more and build up my endurance. I go to bed at 9 P.M.
      and get up at 9 A.M. But sleep doesn’t come easy so I take Ambium CR.
      And when I lay down my heart pounds so hard in my ears, it feel like a train going through. Thanks for any info you can pass my way.

    • Anonymous
      February 22, 2007 at 5:26 pm

      Hi Jerry.
      You sound like me I was in the hospital for 5 days and had IVIG for 5 days. My GBS was mild too. My feet are numb. I can drive use a walker and cane and walk with out any thing from time to time. I also have the poor me at times and all I do is look back and see my progress. I read about others far worse than I am. You and I and a few more have been blessed greatley and we can do so much for ourselves, and others. I heard and heard PATIENCE ONE DAY AT A TIME. Count your blessings and be thankful ours was caught in the early stages. and lets pray for the ones in a far worse state than we are.

    • Anonymous
      February 22, 2007 at 6:40 pm

      Hi Gramps,

      We are all entitled to a little pity party now and then, so no apology needed!

      It does sound like you will make a great recovery, since you are doing so well (a relative thing I know…).

      When I got sick, I had 2 large cats. My husband set up a hospital style adjustible bed for me, since I couldn’t sit up by myself. It was only a twin size, but somehow both of my cats managed to squeeze into the bed beside me every day to sleep. It made me feel so good to know that they could sense that I was sick, and wanted to be with me. I still love to look at the photo my husband took of both cats in that little bed.:)

      Being well enough to walk Keppie again sounds like an excellent goal. Animals can give us so much solace and comfort, as well as some much needed laughter. I’m glad you have one in your life.


    • Anonymous
      February 22, 2007 at 11:22 pm

      [B][COLOR=”SeaGreen”]Gerry….hang in there my friend. You are certainly not alone. I did 5 days in hospital with the IVIG solution in mid December of last year. I’ve had 1 reoccurrence early February, but this past weekend I’ve been able to raise my left eyebrow independently of my right. Something I haven’t been able to do since 12/10/06.

      My hands and fingers are still numb and tingly, but my Neurontin seems to stem those symptoms for about 4 1/2 to 5 hours. Day at a time Gerry and you’ll get there.

      Guys don’t have the same patience as the ladies seem to possess. Remember that it’s not on our time that we get better.[/COLOR][/B]

    • Anonymous
      February 23, 2007 at 2:36 am

      Gerry, pet therapy is great for us. my Henry loves to play ball all the time, i had to teach myself how to throw the ball for him. and man did he work me somedays.:) he is a mommas’ boy, and i wouldn’t want it any other way.:) i am the main dog walker during the nice days. Henry use to pull at a steady pace, until the first walk post gbs, when he immediately changed his pace and slowed for me. he even knows when i’m going into another relapse-he stays at my side and won’t even let me have privacy in the bathroom, he scratches at the door until i open it, he gets on the waterbed and lays his head and front legs across my legs or belly. animals are just amazing.

    • Anonymous
      February 23, 2007 at 1:16 pm

      Hi Diane–
      While I was in te hospital I wowed the staff with my progress–leaning to use the walker even to going up and down stairs, being ble to rise from a chair without using my arms as levers, etc. Then after discharge I was sent to rehab where I had an hour of exrcises twice a week. Then–I started to go downhill. I seem to have some of the same stuff you are experiencing, but as you have probably learned there is a lot of variation in how GBS affects people.

      My thighs and legs are quite numb most of the time. I get much of my exercise by going upstairs where my computer is and this is a real chore. I have loud (to me) ear noises sometimes, like a hurricane passing through my head.

      So–what does this all tell you? We do have some similarity in residual effects from what can be a scary, life-threatening illness. As all of our friends on the GBS website insist, we [B]WILL[/B] get better and it will [B]TAKE TIME[/B]. I believe it and so should you. Keep in touch!