Another Newbie – but progressing

    • January 8, 2007 at 5:22 pm

      I came down with GBS on Sept 8th 06. Had a flu which had improved after medication and then I became numb in my midsection. Went to the ER and legs collapsed going to the bathroom. I felt awful and then I have no memories for 3 days. Next memory was Sept 12th. I was paralysed from my nipples down. No movement at all. My breathing capacity was decreased but I never had to be placed on a respirator.

      Spent a week in ICU and then was transferred to a Spinal Care unit at another hospital. 5 weeks there (intensive therapy) and then 3 weeks receiving more Electro Stim therapy in an old folks home. Got minor movement back in my feet with the Electro Stim.

      Came home just before thanksgiving in November. I can move my legs now (just the last few weeks) but still cannot walk. It’s nice to be able to roll over in bed using my legs instead of elevating the bed and trying to wrestle them around with my hands.

      I tried crawling (like a baby since thats how they learn to walk) but flopped over. Things are getting better but I realize it will take time.

      Anyone have insight on how the “walking” progresses? I can stand up in a walker but cannot yet walk with it. If I take my hands off the walker I can stand for about 5 seconds before my legs start to sink. This is MUCH better than I was before.

      Legs and feet still tingle and my midsection is still numb but I am getting some trunk strength. I became ill from my midsection up and down and seem to be getting better in reverse.

      Was getting in house therapy 3 times/week but will be starting outpatient therapy 3 times/week at the local hospital.

      Enjoyed reading the other posts – I see I am fortionate in many ways even though it has been devasting.

      John Graham
      Jupiter, FL

    • Anonymous
      January 9, 2007 at 1:28 am

      Welcome John, I am sorry you had to seek the information from this forum under these conditions. You will find it is a very close group that have gone thru a lot like you have. We can never say enough about the caregivers and their patience with us. Are you still having regular Doctor visits with your Neuro? Have they offered you any aqua therapy? Balance is important part of standing and walking. PT should continue to get your legs, hips and back stronger. Also needed to walk you need to have some upper body strenght to use the waker or cane or even the wheel chair. Occupational therapy should also still be working with you for the things you need to do to take care of your daily needs. Hang in there and be patient we all are getting better slowly! How are you doing with the fatigue? Did they stop all the IVIG treatments? Have you received Plasmaphresis Exchanges? On any pain meds? Did the GBS effect your digestive system at all? I had to receive a food tube. Your swallowing was not effected?

    • January 9, 2007 at 11:18 am

      Thanks for the reply.

      I did not have any digestive problems at all. In fact the meals in the hospital were what I looked forward to the most. However I did lose all control of bladder and bowels. I did get bladder control back after 9 weeks (hospitals used catheters, nursing home insisted on diapers only so I was motivated – particularly since they weren’t too fast about changing diapers.)

      Bowel control came back last week – thank heavens!

      I go for my first outpatient therapy tomorrow. They have a pool so I am hoping that I can use it. I did find a local municipal pool that has a lift to get me from the wheelchair in to the water and I am planning on going there this weekend once they open up for general swim instead of laps only.

      I see the doctor that treated me at St Marys on Thursday. He is not a neurologist but is a rehab physician specializing in Spinal cord injuries/diseases. Of all the doctors I have seen he is the only one I really trust. (Saw one neurologist that ordered a test and then never even gave me the results.) I did see a neurologist last week at the Clevland Clinic and they said to continue with the therapy and that no other treatment was required. Saw another neurologist in December who was amazed at my progress.

      While in the hospital I did have two regimens of Prednezone (which I think is the IVG.)

      I was able to get into the baby crawl position in bed this morning without falling over like I did earlier in the week. So I’m Getting Better Slowly.

      Hope this fills in the details.

      John Graham
      Jupiter, FL

    • Anonymous
      January 9, 2007 at 3:50 pm

      Hi, IGIV and Prednisone are not related. IVIG is Immune Globulin, Prednisone is a Steroid.
      The Hospital should have either given you IVIG or PlamaPheresis to stop the progression of your GBS.

    • Anonymous
      January 9, 2007 at 5:19 pm

      Hi John, welcome to the family. I understand about losing control of the bladder function, but fortunately did not loose bowel :)!! I was diagnosed with GBS December 2006 and I am still in the hospital in an electric wheelchair to get around. I am slowly regaining strength to stand and to take a few steps. The walking will come with time and [B]patience!![/B] I started by standing in the parallel bars, then taking a few steps. A few steps led into feet for distance and feet went on up and up!! I have started crawling as well in PT, sure feel funny but now have a total new outlook on what the children have to go thru.
      Good luck,

    • Anonymous
      January 9, 2007 at 10:19 pm

      Hi, John,
      We both started our nightmare journey the first week of September. But mine took a month to peak…thanks to my Huge amount of supplements. I chose to stay at home alone when the hospital sent me home with a broken ankle and I was like a rag doll!!I too had trouble crawling at the beginning so I scooted/dragged my body on my butt. Crawling is good for the brain development. But now I have caluses on my knees. I am amazed that you can get onto a bed. I haven’t been able to do that in three months. I roll my body onto a couch. How do you get onto a bed if you cannot stand?
      I have not had Physical therapy since my health insurance doesn’t work up here in Pennsylvania…don’t get GBS when you are out of state! I wondered if not walking or standing would for three months would leave me unable to walk when I am ready. I didn’t push my wanting to work. I figured that if the nerves are damaged and need to repair themselves, then why push it by walking/standing. So I decided to wait. I hope to be walking soon. I wondered if people get permanent damage or residuals from walking too soon. So I am using this second experience with GBS as a science experiment. We’ll see.
      Do you happen to know a sergeant in your police force named Mike. He is head of the Police Union…..? I forget his last name…..

    • Anonymous
      January 9, 2007 at 11:34 pm

      i cant believe some of you are sent home before you can walk. That must be incredibly difficult for you. It was bad enough being immobile while i was in icu with 24/7 one on one care, i cannot imagine how difficult it would be at home.

      It seems there are a lot of you struggling to get physio too. I was lucky i got physio twice a day while i was in icu. Even when i was paralysed they would come and move my limbs. Maybe that contributed to my rapid recovery. When i went to the ward i could not even get out of bed on my own. Within days i was walking and by the time i got transferred back to my local hospital 10 days later i was walking all over the ward with a walker and able to shower myself.

      I spent 10 days at my local hospital for inpatient rehab. I had physio twice a day which was basically relearning how to walk, balance etc. Within a few days i had ditched the walking frame and after 10 days they said i could go home with no further physio required. They said if i had required ongoing physio they would have kept me as an inpatient.

      I am releived i did not have to fight for any of the treatments i received. (maybe if i had gone through my insurance company it may have been a different story!) Maybe if some of the people who make the decisions had to go through what we have been through they might be a little more caring.

    • Anonymous
      January 9, 2007 at 11:53 pm

      Been out of state for the past 6 days …. My history was completely paralyzed with trach for 6 weeks. OT and PT everyday in hospital for a month where they taught, for that month, me to roll over, stand with eyes closed for a while and to walk … well, it was a type of flopping about walking. Once I returned home and went to private PT three times a week I was told I needed to crawl first before they could teach me “properly” to walk again. This crawling and walking correctly, i.e. what to put down first and how to swing my legs, probably took another month (at least) AFTER the initial PT in hospital.

      Have spoken to a few in rehab and they were also learning to crawl again, but it takes a LOT of energy and pain. Hang in there, a great deal of sweat and TONS of tears … along with a lot of crawling helped me.

    • Anonymous
      January 10, 2007 at 12:03 am

      I had CIDP rather than GBS, but still spent 2 1/2 years strictly in a wheelchair. I was able to go home because I could transfer from my bed to my power wheelchair by myself, & my husband lowered our bed so I could transfer into that as well. I didn’t really receive any PT after I got home. Well, at first I did have a PT come to the house twice a week, but we soon realized it was a waste of time for me, as I was still deteriorating at that point.
      Anyways, I did begin walking again after my CIDP was arrested & I had some nerve regeneration. People always ask when they will walk, I believe the easiest answer to that is when enough nerves heal. Your brain seems to know when you are ready, no matter how long it has been. I walked long before I could crawl, which seems weird now. But just be patient, get tons of rest/sleep & you will know when you are ready.

    • Anonymous
      January 10, 2007 at 12:23 am

      I thought my recovery was amazing. Nice to see others that did well quicker! I come home after being able to walk to get me from the bed to the bathroom….they really wanted to see at least the lenght of my house. Coming home really depended on walking up and down steps. I was not able to lift my feet up to get into the tub, never thought about it until I went to get into the car. I could not get my feet up into the car and with running boards and short legs the seat was too far back to actually fall into the car. I was determined to get home and they brought me a step that was lower that I used to get into the car after 30 minutes of panic! Got home and was not able to crawl yet. My upper body strenght was so poor that I could not lift my shoulders off the bed with out using a strap that had a wire in it and it went around my foot to help pull me up out of bed by straightening my leg and pulling against that strap. I always had a fear that I would fall during the day and being at home by myself I had to ask the Physical and Occupational therapists to show me how to get down on the floor and how to get up. I had lots of trouble going down and much more coming up! I still practice laying on the floor and getting up. I do not do much crawling but I do remember the extremem pain that was in my shins and knees. I think that might be why they did not make me crawl until I got home on a rug and I got more upper body strenght. Now I am still working on strenght. Pushing away stuff with my arms is easier than pulling stuff or lifting or pushing stuff up to the top shelves. Slowly lowering things is also one of the things we did not do much practice with. Things are slowly getting better, but I was surprised to see that you had to crawl to come home. I would have been in the hospital for a few months more if that would have been me! Over Summer I was able to put my butt pointing down the hill and actually get myself up into the stand. If I don’t have the assistance I am still not strong enough to stand up without pushing up on a table or chair or the bed. I am back in rehab trying to get to the next level after I let my strenght catch up to their demands. By Summer or even Spring I would like to be able to stand up in the middle of the room or out in the yard. Keep up the great threads! Be happy and work consistantly, remembering the patience! This is not a race and speed right now will not help us! Thanks for the support and encourgement!

    • January 13, 2007 at 3:15 pm

      I to am suprised at the numberof people who were sent home not being able to walk or even use their upper body to transfer from bed to wheelchair etc. Particularily since many had no one at home to help them.

      I have been doing well at home. I did not lose use of my arms or hands (although the hands tingle a bit). I learned to transfer from a wheelchair to a bed and vice versa in the hospital. They also trained me on going from a wheelchair to a car. I have a hospital bed which raises and lowers so that helps. I also have someone at home that provides excellent care for me.

      When I first came home I used a transfer board to get in/out of bed. However I have a friend who has been in a wheelchair for 15years and she showed me how to get in and out of bed without the board. I do it all the time now. I use my arms ( strengthened from all the weights I lift in PT) to do the transfers. I am also getting significant help from my legs now and this enables me to get in or out of the tube without assistance. Toes, feet and legs are comming back – in that order – but my trunk is still weak.

      Big step yesterday! I have been a private pilot for many years and while I sold my aircraft after getting sick, I have friends that fly. After getting the doctor’s OK, my friend took me to the Light Sport Aircraft show in Sebring yesterday. He has a Cherokee 6 which has a door to the last row of seats. It is low enough that I can transfer (with a transfer board) in to the aircraft. My friend then put the wheelchair in the luggage compartment and off we went. After being grounded for 4.5 months it was great to be in the air again. Brought tears to my eyes on the takeoff! The show was excellent. I was even looking at new aircraft since I hope to own one again someday.

      I was at the doctor’s office on Thursday and he thinks I will be walking at 95% of my previous abilities in 3-6 months based on my progress. (I had one doctor say I would never walk again period.) This is the first time they have made definitive statments about walking again! So far I have not been plagued by the fatique that seems very common amonst GBS victims.

      I’ve got a ways to go but the outlook is positive now.

    • Anonymous
      January 13, 2007 at 3:56 pm

      Greetings John,

      Welcome! I was one of those sent home from the neurologist’s office barely able to walk. My balance was completely gone and reflexes gone – and I still experience trouble with both to this day. The doc said I shouldn’t be alone, but was stubborn and stayed by myself. My family was close by and come over often, but I would crawl around my apartment. A few months later, I would have to go down the stairs on my butt – can’t imagine what that looked like. As I look back, I shouldn’t have been home and think I would be better off today if I had had some therapy – long story, had a session or two and that was it due to my job that shortly thereafter fired me.

      We’ve all got quite a story to tell and as you can see we are all ears. Glad to see you found us!

    • Anonymous
      January 15, 2007 at 6:30 pm

      John and Chrissy..
      The ER doctor wouldn’t admit me after I broke my ankle. Told me not to walk on it. When I told the nurse I had Guillain Barre and no strength in my arms or legs, lived alone, and begged them to admit me, she went to talk to the ER rent-a-doc, and he told her NO. Did not even take my blood pressure which was soaring. I fell on my ankle because my legs were getting paralyzed.
      So crawling at home seemed to be the only thing I could do. John, I have not slept in my bed since Oct 9th. It is a tall 100 year old brass bed and I fear getting on and off of it. I can’t wait to get in the tub and then sleep in my bed. You are lucky to have a PT and friends to advise you. Chrissy, I can identify with your situation of living alone. You are so blessed to have had family and friends to help. I have been living alone here. My best friend stops by every 2 weeks to help out for a few hours. Her boyfriend comes once every 7-10 days to get me groceries. I really needed someone to stay over the first few nights, but he was unable because his cat would get lonely. It has been a dark night of the soul. Scary and painfully lonely.
      Chrissy, when I got GBS the first time – 20 years ago – I taught Monday, WEd, and Friday….due to the fatigue and difficulty walking. The superintendent gave me a poor rating because of my absences for a few months. But when I went in,I did plans or the next day so the students did not miss any of their education. WHen I told him what I had, he said that if I weren’t hospitalized, then I should not be absent! Guess he never was really sick…… I feel for you, Chrissy, in losing your job.

    • Anonymous
      January 24, 2007 at 1:12 am

      I hope your therapy goes well, considering. I don’t have a lot of medical input to give you, except maybe listen to your body. I realize it’s hard to listen to a part of your body that’s not communicating or getting communitation correctly. But other parts of your body will tell you. Don’t over do it. You already know that don’t do? Good luck!!!:

    • Anonymous
      January 24, 2007 at 1:21 am

      I may be posting to your thread a little prematurely, but I had to respond. When my husband Jacob was first diagnosed with GBS, they tried to discharge him after giving him treatment without a wheelchair. His legs were still paralyzed. What was he supposed to do, crawl down the street and on to a bus. He had to scream like a banchy and threaten lawsuits to get a wheelchair. I haven’t read the responses to your thread yet. I’m sure you’ve gotten some good encouragement and advice. I’ll respond again tomorrow. Don’t let them *7%^& you over.

    • Anonymous
      January 31, 2007 at 4:13 pm

      Hey John, it looks like we both got GBS in September. You asked about the walking progress and I can say I guess its different for everyone…my best advise to you is to do the stretches and exercises that the therapist give you—i know it can kind of be annoying at times but trust me they do work and it does take time. Stay postive and im sure you’ll be walking in no time 🙂 . Oh yeah one more thing you’ll know how far to push your self and what your body needs—remember to do what’s best for you. Good luck in your recovery, and like myself I know is going to be a long journey.
      Take Care.

    • Anonymous
      January 31, 2007 at 6:46 pm

      Hoo boy! I guess there are some benefits to be really really really dependent on a ventilator/stomach tube! I had 3 weeks in ICU then was transferred to a long-term care facility. After about two and a half months or so, I was strong enough to sit in a wheelchair for long periods of time and so they transferred me to rehab. Thanks to insurance, I had a whopping 12 days to rehab but they were otherwise great so I shouldn’t grumble much. But in that time, they taught me to get in and out of bed from/to a wheelchair. And they taught me to stand and start taking very small steps. And can I just say OUCH OUCH OUCH after so long being off your feet they really hate a full body’s weight back on them. But anyway I was discharged able to walk only short distances and mostly using a wheelchair. But with PT I got to walkign with crutches in a couple of weeks and then with just one crutch soon after. By the time I’d been home for about 6 or 7 weeks, I participated in a five km walk. Big mistake, don’t get me wrong! I was sore and exhausted for almost a week after, but it was really the last big hurdle to walking like anyone else. (It was so weird to break into a sweat just standing, though obviously it makes more sense with the acceptance of just how severe GBS can get… At the time, it was just embarrassing. I’d be sweating after like two minutes, standing stock still.)

      Anyway, it sounds like your progress is positive. My guess — though everyone is different — is that you’ll continue to recover at a steady if frustratingly slow speed. There are plateaus we all hit where we don’t obviously heal for a week or more, so don’t be surprised if you hit one, but overall that should be a worst-case scenario for you as long as you don’t overdo it.

      I’m overjoyed to hear that you don’t have any fatigue so far. It would be completely wonderful if you could get away without any real noticeable fatigue. But (and man, I feel like I’m just the Gloomy Gus today with my dire warnings) you should just be aware that sometimes when we’re really focused on healing and getting better we don’t notice the fatigue because, well… we’re not ready to. That and/or because the PT is careful not to overdo it and, if we can’t walk much or at all, we can’t really try to do too much. Once you’re walking with crutches and/or unsupported, pay very close attention to signals your body gives you. It’s when we think we can go back to normal that we start to overdo it and fatigue can hit home. The more you ease into activity, the better you will be able to discern any new limits you have without suffering exhaustion for a day or two after.

      Keep us posted!

    • Anonymous
      January 31, 2007 at 7:38 pm

      I came down with GBS around Thanksgiving of 2004. Had a case of the flu for almost two weeks prior, then I woke up with pains in my arms, went to the emer. rm, they chaged meds and went home. Next day woke up and couldn’t walk, crawled to my car and my wife took me to emer rm again. after about a half hour a neroulogist came in looked at my blood resuts played with my legs and said I had GBS. He got me to another hospital and started me on plasmaferrecious( probably not spelled right) the next day. Two weeks in the hospital and I was barely walking, got sent to a rehab and spent two weeks there, went from a wheel chair to two canes. I was out of work for about two and half months. Luckily I am one of the ones who has good health care and had the ability to save sick time over the years and did.
      To this day I still have some numbness in my toes, and when I over do it and don’t get enough rest I start getting the muscle spasms again.
      I added this to the fact that I found out in 1998 that I have Hep C. Went through the treatment but it didn’t work for me
      My wife says I just like trying on the strange diseases.
      Everyday is a good day to me when I can get up and walk around.