New Member – Lots of Questions

    • Anonymous
      August 10, 2008 at 5:22 pm

      Hi – I am a new member. My brother Andy is 25 and has been stricken with GBS. Mom and I have been at his side 24/7 since the beginning of this illness (July 14th) and have gone through all the ups and downs with him. Following is a short synopsis.

      Andy is such a great man. His daughter will be two this Halloween and he has another daughter on the way, due October 28th this year. He is a very respectful, fun, energetic, happy-go-lucky, friendly kid that loves his family and friends. Prior to July 14th he had a sore throat and fever on and off for a couple of weeks and some all around symptoms of feeling “off or not quite 100 %”. On July 12th he spent the day at my house with the rest of my family having a pool party. He rode his motorcycle down (one of his passions) and we took a nice picture of him. On July 14th, his hands and feet started feeling numb. He went to the doctors again and they said it was just a virus. On July 15th he went back to the doctors as the tingling was traveling up his legs and they told him again, just a virus. We took him to the emergency room later that day and they said they thought it was GBS – what a shock. By the time they transferred him by ambulance to a hospital an hour away he could no longer stand, even though he had walked into the hospital just hours before. Then things went downhill quickly. Complete paralysis, inability to blink, ventilator, cathetor, feeding tube, pneumonia, tracheostomy, depression…needless to say it has been very frustrating and humbling for the family, not to mention the toll it has taken on Andy. We finally had to ask both neurologists to stop saying that he was the worst GBS case they have seen in 10 years as it was just so disheartening. He is still in the ICU and has worked his tracheostomy loose so that he can do a thick whisper to the nurses dismay. One of the things he said is that it feels like someone has tied a rope inside his stomach and is pulling it really tight. He’s had a lot of problems with constipation that they have tried to treat with Senecot (no luck) enemas (usually no luck) and other things. They’ve had the most luck with this medicine that they use on other patients who are about to undergo a colostomy. Any other ideas to help him out in this respect?

      Also, another problem lately has been insomnia. He will literally stay awake for three days on end only sleeping for three hours or so total the entire three days. Is this a normal side effect of GBS? They have since tried switching his morphine to another narcotic to cause drowsiness (starts with an L but I can’t remember it right now) but it causes him to be very confused. For instance he woke up crying and whispered that he wanted to check out of the Guthrie (name of hospital) hotel. I really hate to see him in that confused state. I know it’s not about me and I have completely given myself to “whatever is best for Andy” but is there anything you can recommend that I can talk to his dr’s about trying? They have also tried Ambien with no success.

      Lastly, maybe I should have posted this on the caregivers site but I really want to hear from those who are afflicted with GBS. How can I do more to help?? What is it that you really wish your loved one would have done for you when you were at rock bottom that I can do to help out my brother?

      Well, I guess that wasn’t such a short synopsis, sorry. I do need to say that I have been in constant contact with this board since finding it at the onset of Andy’s illness and that I cherish each and every one of you and the invaluable information you bring to me and the rest of the world. God bless each of you and may he work miracles in your recoveries. Thank you for being brave enough to share your experiences with us so that we may all learn from one another. Please keep my brother in your prayers. He is most certainly one of the good guys. 🙂

      Thanks for allowing me to be a part of the board.

    • Anonymous
      August 10, 2008 at 5:40 pm

      Hi! I am too rather new and have the CIDP instead of the Gillian Barre Syndrome. I really don’t know much about this disease but only a few things. But other’s in here will be around to help. Just want to welcome you here and the only advice I can give you is to Love your Brother and let him know just how much you care about him.
      The others in here will be able to give you more info! I am so sorry to hear about your brother. That must have been horrible having that happen to him. Something as simple as a sore throat to turn out being life threatening is really scary! I will keep your brother in my prayers and hope he gets well soon!

    • Anonymous
      August 10, 2008 at 8:35 pm

      Welcome to the forum. I am a newby in posting. I was diag. April 2007. I was not completely paralyzed so the ventilation part of the process I can’t help with. Thank God!
      I admire you for standing by your brother. That is the most important thing you can do for him right now. I remember when I was hospitalized (for 1 mo. total) having my family with me and supporting me made all the difference in the world.
      If Andy is as strong as you say he is, he will get through this. I’m no saying it is going to be easy, but with the family support he has is most helpful.

      Since I have been posting and venting some of my feelings so many others have helped so we are here for you and Andy. One thing I keep hearing that I have found to be so true is GBS stands for “GETTING BETTER SLOWLY”.

      GBS does not go away as rapidly as it comes. So stay with Andy and stay strong and he will progress from your strength.:)

      As far as the not sleeping. I had a rough time sleeping because of the severe pain and muscle spasms. They gave me Ambien and it did help some. I wonder if it is his anxiety level that is keeping him awake. He could be afraid to go to sleep for fear he won’t wake up (just a thought). Do they have him on any antianxiety meds. I am still taking xanax day.

      Well better go, keep in touch

    • Anonymous
      August 10, 2008 at 9:17 pm

      Hi Andy’s bro! Welcome to our GBS family. I am so glad you found us. As a caregiver, you are going to need as much support as Andy does so hang in there and reach out to us as you need to. There are parents, siblings, grandmas and people who have/had GBs here so all your questions will most likely get answered by someone.

      I had GBS 25 years ago and although lots has changed in the treatment plans, there are so many things that stayed the same. I too was ventilated and on life support. It was important to me to be able to communicate so my nurses made a chart of the alphabet and they would point to the letters and I would blink (as best I could 😀 ) to spell out my needs. It was a very tedious process, but when people took the time to let me ask my questions that brought me such relief! It is important I would think to find a way for Andy to communicate with you all.

      Also, I didn’t sleep either. I would catnap during the day but never at night. I was afraid that if I was going to die it would be during the night. I was in a health care facility for the first three weeks that was not the best in terms of long term ICU care and I was often left alone for hours on end during the night. But that is a whole other story! Back to not sleeping…so I was afraid if I fell asleep and something happened no one would know until morning. It was a terrifying time. When people would stay with me through the night, I would sleep. There was so much anxiety and stress for me and my family, I was lonely and missed my children…I had four, ages 1-8, one affected by a disability. I was not able to see my children as they felt it was not in the kids best interest. That just about killed me and when they did finally get to see me, they were terrified by all the tubes and machines. Big mistake…it was good for me but not for them.

      I also felt isolated so I really enjoyed when someone would pick up the latest newspaper and read it to me…no TV’s were allowed in ICU and if you did have one it couldn’t have the sound on. It was good to know what was going on in the world outside of my glass cubicle. My husband knew I loved to read so he went to the library and got me books on tape. That was awesome. But I needed someone to put the mic in my ear and it often fell out so I would suggest if you do this you find a way to secure it for your brother.

      I loved massages and range of motion exercises. The more people would do this, the better I felt. This may not be true for everyone but it was for me. It took my mind off the pain and helped me to relax. The massages hurt for the first month so I didn’t like them initially but loved them later as I was recuperating. The range of motion I always loved. Be careful though not to overdo it as that can do harm rather than good.

      I received so many cards and well wishes and the nurses taped every card on the walls in my cubicle so I could see them. If I was moved to a new room, and I was, the cards came with me and were retaped. I had a picture that a nephew had taken of the kids a couple weeks after I initially got sick and the nurses placed it in the arms of a teddy bear and made sure that no matter how I was positioned, I would be able to see it.

      These may all seem like simple things, but 25 years later, they bring tears to my eyes. These little things helped me stay sane over a four month period of hospitalization. ICU can be very boring and nonstimualting so I really appreciated the efforts the nurses and my family made to help me feel safe, physically and emotionally

      I am here to help in any way I can. Please do not hesitate to ask me any questions. I have always shared my story….some good, some not so good, but through it all as I tell the story, I hope I can make this journey more comfortable for someone else.

      Take care and god bless you and your family and may Andy heal.

    • Anonymous
      August 10, 2008 at 9:42 pm

      First off, I must say how sorry I am that your brother has been stricken with GBS.
      I got GBS Oct. 07, although my respiratory muscles were affected I never had to be vented or have a trach.
      I was given morphine and it played horrible tricks on my mind. I was afraid to sleep and lay awake each night after family went home. I slept when my husband was visiting as I felt safe then. The medicines he is given to help him through the initial stages of GBS may have an effect on him not being able to sleep. Hallucinations are not uncommon with the medications.
      The description he gives of the rope pulling his stomach tight may be what myself and others have had with our GBS as a tight grip, bear hug, band or someone squeezing that will not let go. At times while in hospital my grip was unbearable and I felt smothered by it, I was given ativan, that helped me relax and I also slept better with the ativan. My grip did ease up over time.

      GBS can affect the organs also. It doesn’t happen to everyone. The Bladder and bowels both were affected by my GBS. I had the cathater and was given several things to help keep the bowels moving while I lay in bed, warm prune juice, miralax mixed in water, dulcolax laxitive pill and colace stool softener gel tab. As I got better and able to move they did the rectal stimulation, kind of like pt on the rectum to remind the rectal nerves what there job used to be and get the bowels moving normal again. It sounds terrible but it works.

      Andy needs all the support he can get from family and friends now and later when he makes improvement.
      He needs some way to communicate, others here have dealt with that issue and can explain how to do that.
      Are the nurses watching for bed sores?
      Is he getting any treatments and what is it? Usually it is ivig or pp.
      No steroids with GBS.
      My prayers will be with Andy and his family
      Keep us posted on Andy and keep asking question. You will get support here.
      Your a great sister to Andy.

    • Anonymous
      August 10, 2008 at 9:45 pm

      Welcome Cathy your Brother has a very special Sister! You did not mention if your Brother had received IVIG or Plasma Exchange. Those are used to stop the attack on the mylin sheath. The GBS will start to reverse on its own rate and body functions will return with coaxing. It might take a few tries so tell Andy to be patient. I told my family to call the ambulance ata 911 to get me out of that hospital and into the one up the road! So I know what I put my family thru when under the effects of morphine. Just be patient. I can tell you that your brain is on over drive while your body is not working. You will see him very sensetive to touch which might cause pain. Swallowing will come back but it can not be rushed. Occupational Therapy and Physical Therapy is a must. It can not be over done or rushed on the GBS patient either. I know exactly where your Brother is. I was there just 2.5 years ago! Make sure they are doing eye drops so they don’t dry out. I had to request them and also they gave me a different sauve for night time. Warm compresses helped me with the pain and discomfort in the eye from the eye ball actually swelling. Tell him that talking around the trache puts a strain on the heart (this is what my Respitory Doc said) so don’t do it often. Let those vocal cords heal. Ask Andy what he needs…..he might need more than what he lets on. But don’t ask questions all day long. Just answering questions can be very exhausting. Tell him to relax and try to take a nap you are there for him. Read to him or let him listen to music. Just be sure you ask if it is too loud…..many are effected with noise due to the nerves in the ears. Ask away on the boards. Vent when needed! Did you send to the foundation for information on GBS and also a booklet for Caregivers? Both can be really helpful. Don’t worry about long posts….. remember GBS stands for Getting Better Slowly……tell Andy to be very patient. Have him show you his daily brags as he is able to do things again. I had 4 to 5 each day as I was able to move my pointer finger….lift my hand….wiggle my foot….move my leg sideways….OT and PT helped me daily get a list of things I could show my husband how I was doing daily. Being able to use my sippy cup was a big deal….his daughter will be happy for Daddy when they tell her that brag! Most important is to keep things possitive. Take care and write often! Also you might want to contact your local liason for GBS and have them visit or talk you your family.

    • Anonymous
      August 10, 2008 at 10:21 pm

      Hi Kathy: I didn’t sleep for weeks after getting GBS no matter what medication they tried. It wasn’t until several months later that I finally got some real rest. I’m not sure that this insominia can be avoided, but it does finally pass.
      I was constimpated also for weeks and nothing helped that much either until nature finally took over. I don’t mean to be negative, only to say patience is required when dealing with GBS and its effects.
      Being confused and having hallucinations can be part of GBS and not necessarily due to the meds. My doctors took me off the pain medication because of my hallucinations but it did not help and made the pain almost unbearable. The pain some of us had with GBS wasoverwhelming so I would say make sure he is comfortable even if confused some. The need for mophine will pass too but make sure he isn’t suffering-from my experiuence that is really important.
      You must recognize that this is a long term deal. Hopefully he will recover quickly as he is young but it can be a slow, hard process.
      Welcome to the forum and know our prayers are with you and your family. Jeff

    • Anonymous
      August 11, 2008 at 8:42 am

      Welcom Andysmybro. I got it on10/13/07. It went up to my neck.They checked my breath every 4 hours for a month. The sleeping was non existent for 3 to 4 weeks. I blamed it on the bed and all the noise and the nurse coming in constant. You just cant get the rest you need in the hospital.I had broke my back and my leg as a youth and that is what hurt the most.They wouldnt give me much pain meds because it ussualy affects the breathing which they watch closely. I was at U of M in ann arbor for 5 weeks. They started rehab after 1 week which I thought was premature. The insurance required it.They dont know!!!whats best.Your brother will get better. A freind of mine got both PE and Ivig . He was back to work in three months.He was 40 at the time.He was inches from a ventilator.I got only IVIG. Today I am back to work with only foot numbness and pain. Compared to where I was I am doing well.I am 54 now.The younger you are with this I think the faster your recovery. Your brother has a good chance to make a complete recovery with him being so young.dont let him over do it when he starts to come back .
      I was in a wheel chair and walker for a few months before I started walking on my own.Take care

      I just re read ,and what Dean said ,brought back the memory of my hospital stay..While there ,you are totaly dependent on others ,you quickly find out who is gifted to work there and who is there for the money only . I sure feel now for those in long term care that need to rely on others .

      There also was a harpest who came to my room ,and played for close to an hour ,that really calmed me down.
      also there was a massage therapist that was in for nurse taining that asked if she could try massaging my back.She checked my blood pressure before and after the massage. It made a huge difference,so she made a report for one of her classes and got an A on her paper.

    • Anonymous
      August 11, 2008 at 10:17 am

      🙁 So sorry to hear that this has happenned to your brother… The others have posted a pretty good picture of things he is probably experiencing.. I wasnt’ in the hospital long with my gbs (only 5 days..).. I probably left sooner than I should have.. And my gbs reached up to my face, and partial breathing probs. , but no vent..
      I remember swallowing was real difficult, and my tongue was numb.. nerve damage?
      constipation was a big issue (stool softeners) helped
      Pain was terrible.. I had really bad back pains, and a lot of pain in feet.. couldn’t have anything covering my feet initially.. I was really uncomfortable in the hospital bed, and my wife bought me pajamas and slippers, that I wore.. the neuros at the hospital didn’t seem to care….,
      Sleep was a real problem.. My wife had a talk with the staff, and got a don’t disturb sign on door to hang in the wee early morning hours, cause I just wasn’t able to sleep.. They took blood constantly, monitored breathing, iv, ivig, etc….
      I had a room by myself thank goodness, so privacy was great… My wife stayed with me the last 4 days.. Loneliness is tough….
      I contracted gbs 10/15/07.. The doctors now think I have cidp.., and am being treated with ivig and steroids… But, I have regained a lot of strength, and do a lot of the things I did before gbs.. I tire real easy now, so I rest a lot, and I’m still a long ways off, from returning to previous work schedule, if ever… Right now I’m still not working… But, I will get there….
      Good Luck, and keep asking questions.. We all learn something…dean

      P.S. The insomnia could be drug related.. I was only on pain meds in the hospital.. Of course, I didn’t sleep hardly in the hospital.. When I got home, yes there were a lot of sleepless nights.. A lot due to pain, internal organ problems, bowel movements.. (Even your butts numb, try sitting on a toilet seat!), not including the stress, depression, and other issues… And, yes he wants to go home, and I wouldn’t blame him for sobbing and telling you to get him outta there.. He’s got a helpless feeling right now, and everyone else is in control of his destiny, at the moment.. That ain’t easy to take.. I was never so happy, as getting checked out of that hospital, when the last drip of ivig, went thru me…..Oops.. Also forgot how upset my stomach was during this whole ordeal… Pepcid helped… Never had such heartburn, other issues..

    • Anonymous
      August 11, 2008 at 11:02 am

      When someone has a life changing experience it’s a trauma. One day your body works just fine and the next day it’s gone but the mind still works.
      You should talk to the Dr. about giving Andy something for Depression. I was on paxil in the hospital and still taking it.
      You should make sure he is being given medicine for the nerve pain he has from the mylin sheath being destroyed. Lyrica is what I am on, there is another medication for it but can’t think of the name.
      Being a caregiver is very difficult and hard. While Andy is in the hospital the family should think about taking turns with Andy so they can take breaks and get some rest. Take care of yourselves as Andy will still need the support, help and care when he comes home.
      Prayers for Andy and his family.
      Take care

    • Anonymous
      August 13, 2008 at 1:03 pm

      Sorry you’re in this situation, here’s my two cents, and I’m sure people may disagree. First, my background. At the time I was 46. GBS symptoms 3/16/05 and by early on 3/18/05, I was completely paralyzed and in ICU. Had a lot of the ‘stuff’ you mentioned from your brother’s case; ventilator, cathetor, feeding tube, pneumonia, tracheostomy, depression, plus ended up getting blood clots in legs that traveled, staph septicemia; was dropped during a transfer, also ended up with a “frozen shoulder” as a side effect as I was not being moved enought. I had an advantage if you call it that, in that I was kept under by what ever means necessary. (my wife kept a journal and has the complete list, I know fentanyl was one drug.)

      My suggestions for you, keep a journal, what, when, who, numbers from vital signs etc. anything you can. After it was over, it was helpful to my recovery to go back and see that information. Maybe I’m morbid, but I would have also wanted pictures to rationalize to my self how I got where I was. Cause when I came out of it, I didn’t know how bad I was. I just knew I wasn’t where I was before I went in the hospital.

      I was in ICU six weeks and have almost no recollection of that time. I do have some very vivid hallucinations though. As a result of the sedation the neurologists didn’t get a good read on me as they had no baseline. My wife has the distinct recollection of one of them preparing her for the fact that my mental state would be like that permanently. As often happened the nurses stepped in and told my wife it had more to do with the cumulative effects of the sedatives that I was now being weaned off of and that I needed time. I don’t remember the exact time frame they gave her, but I know it was almost exact. One factor was that unlike a lot of people who say they were in the best shape of their lives, I was obese, and the sedatives end up in the fatty tissues so it took longer with me. So here’s another suggestion, and I hope I don’t offend anyone. Have the family members / friends take care of the nurses and the aides. I had two friends who would come to visit and one of them had this down pat. He’d always show up with something and leave it at the desk and make sure they knew what room it came from. Often it was just a lot of Dunkin Donuts or other junk food. I feel it shows a few things, one that someone else besides the nurses / aides is there for the patient, and also that it’s a visible sign that they are appreciated. It didn’t help with all the staff, but it helped.

      Have the friends / family keep limbs moving (check with staff due to tubes etc,) fingers, toes, as much as you can. My case was pretty bad too, but after six weeks in ICU and six weeks in rehab I was released and could walk short distances. Three months after that (six months after start) I was able to return to my desk job. Over the past 3 years I’ve improved, but still have the fatigue and have permanent nerve damage to both feet and my right hand (medial nerve – yes I was right handed.)

      I’m not the first to say it that while we may have a lot in common with the disease, no two cases are alike.

      Best of luck to you all!


    • Anonymous
      August 14, 2008 at 6:29 am

      Hi Andy’sbro!

      My story is very much like your brothers although mine happened so quick i took myself off to hospital within a few hours of my first symptoms they progressed so quickly. I was unable to walk within 24 hours and completely paralysed on a vent in 48.

      i was in an induced coma for 5 days and had some pretty bizarre hallucinations in the days after. There is such a thing as “ICU psychosis” I believe it is a mixture of the meds, the surroundings and lack of sleep. It is incredibly hard to sleep in ICU as there are monitors beeping constantly, lots of activity 24/7. I found my best time to sleep was just before dawn. Unfortunately this was the time they did all the bloods, washes etc. I was lucky, most of my nurses were angels on earth and reorganised everything to get me into a routine. They changed my washes from morning to night in the hope that it would relax me and avoid me being disturbed in the morning. They also put signs up on the board to be quiet near my bed (some of the night shift were very inconsiderate and would gather at the end of my bed for a gossip session!) One of the benefits of being a long term patient, the nurses get attached to you!

      I spent 4 weeks in ICU which isnt all that long by GBS standards. It sounds like your brother is doing quite well if he has a trachy and is able to talk (not that that is a good thing if they dont want him to) If they let the cuff down on his trachy he will be able to talk. If he can swallow, you can also drink and eat with a trachy.

      As for the bowels – they can be paralysed too. I had every enema in the hospital with no success and ended up having a manual evacuation after 24 days 😮 Believe me that got things going in a day or so! What also helped for me was gravity. After a couple of weeks i was hoisted into a shower chair and taken for a shower. They would leave me to sit over the toilet as long as i needed and i found that worked for me. My body must have got into a routine and knew that evenings were the time to go. I know TMI but after youve been poked and prodded like we have, you learn to leave your dignity at the door as they say. I’m sure your grateful for any tips or tricks that might help

      What can you do to help – lots of visits – short but often. You get extremely tired at times but it can get so boring too. Dont get everyone to visit at once, break it up a bit to fill up the hours in the day. that will most likely help with the depression too as that tends to creep up during solitary periods.
      Andmake sure you let him know there are lots of people on here wishing him well and a speedy recovery. It really does give you stregth to know people are praying for you and thinking of you. And let him know there are people here that have been through what he has been through and made it out the other side. One of the worst things is not knowing how long it will take. But ther is light at the end of the tunnel, he just has to hang in there.

    • Anonymous
      August 14, 2008 at 10:46 pm

      HI andy’s bro-welcome and God Bless the caregivers.
      I have cidp but wanted to add my thoughts coming from a bit different angle-as a former ICU patient and I was an RN for 32 years

      I still remember how it felt to lie awake all night and listen to all the nurses talk and all the monitors beep and my family had left for the night and I was awake for 3 days and nights, exhausted and very ill, but awake. I wasn’t restless or complained a lot and the nurses charted I had slept well! I know this because the doc would comment in the mornings about it….well I finally told him and things changed and I really did sleep after new med orders and instructions to the nurses, etc. I later would tell my patients you don’t come to a hospital to sleep, you come to get well, and I was there to help them get well. A little bit of truth and humor combined. ICU psychosis is real.

      Like GBS, I am very sensitive to sounds and touch and smells–you know the five senses. But as a nurse I just wanted to mention what others have touched on–and some suggestions I was thinking about while reading all the above posts. And back to those senses, where you can help. Sight-Jan’s right-bring in pictures and add his passion-pic of his motorcycle. All these pictures “humanize him” and it gives a reference for the nurses to talk to him about as they are bathing him, turning him every two hours, etc. Helps him relax to hear about his family, pets, motorcycle, etc. and see them. Smile and relax when you talk to him-he has gotten real good at reading your face and stress level. Talk about everyday things, brothers are good at that, this works into hearing-be honest with him and reassure him this is going to be slow but you will be there with him every step of the way, speak quietly and slowly. And do encourage him to show you what little thing is better-he’ll hear “better” and be encouraged to “show off” what he can do and praise him. Read a book, newspaper, bring in a cd player with his favorite music, dvd player with favorite movie. Touch- even though he may be oversensitive, if you are a touchy family, just lay your arm over his arm, whatever, touch-help the staff with the range of motion exercises-they apprecriate your help and so does your bro and it makes you feel useful. A touch is so reassuring, even if he is confused or hallucinating, touch him, it relaxes, message him-it gives you something to do while you are talking to him and it does help reduce the pain and anxiety-careful tho like others say, not to overstimulate. Smell-remind everyone NOT to wear perfumes and after shave, etc., anything smelly, it irritates him more. Smell and taste go together here-as the feeding tube comes out and he can drink/eat, bring in his favorites-juices, etc., soups, does he have a favorite glass or coffee mug(doesn’t every man?). Favorite pillow or blanket? Jan brought out one of most important things-communication for him-find a way when he can blink, alphabet, whatever it takes so he can “talk” to you. It is terrifying to have a trach and can’t talk AND can’t breathe and when he is suctioned, to get that rattling sound of secretions in his airway that have to come out so he can breathe, he cannot breathe when they are doing the suctioning. And Jeff is so right-keep Andy comfy with pain meds, anti anxiety meds, make sure none of the tubes are pulling(men hate catheters, well so do women) and make sure they are turning Andy every two hours-find his position of comfort and keep his skin in good shape so it doesn’t break down. Short visits, lots of pictures, structure and block his care so he can rest often, and turn off as many of the bright lights as you can. I wish you all the best-and hope most of my lengthy talk here is already being done. Nurses like treats, true, but you know what I always liked the best-seeing family come——a lot of patients are forgotten alot by their families-why visit? the nurses and doctors are there—-so sad, but true. I took care of so many of my family members when they were in ICU and wherever in hospitals,rehabs, nursing homes-well, I was qualified but it gave me something to do and I like to think I was a better nurse for it. And last-Andy-s bro—–take good care of you and your family…

      Sincerest best wishes,

    • Anonymous
      August 16, 2008 at 3:00 pm

      Hello, my name is Tina,

      I am still recovering from what my Neurologist stated was not quite the worst case he had ever seen, but probably the second or third worst case he had ever seen. I was admitted to ICU on May 04, 2007, experienced everything your brother is experiencing. Don’t want to repeat everything most of the other posters have already stated, but I have experienced them all. I was in ICU for 10 weeks, I was transferred to a Skilled Nursing Facility (SNF) for another 14 weeks. Came off the respirator about 12 weeks at the SNF, was still communicating with abc board. I slowly began to whisper just before coming home on that 14th SNF week. Came home on Nov. 01, 2007 and continued with in home care. I continue with PT twice a week and OT once a week. I remain in a wheel chair and still require full assistance, but I can sit up now, help in transfers from wheel chair to toilet, to bed, etc. I am very slowly still recovering and I have not hit a plateaue, I continue to improve each and everyday, I have limited hand movement at this point, but it continues to improve. It has been sixteen months for us so far. Like I said, I am experiencing one of the worst cases. I am 50 years old now and prior to this I was in great physical shape and I plan on getting back there, hopefully, in less than another year. Patience is very important. I am still taking various medications, but have cut my dosages back. Vicodin for pain, neaurontin for pins and needles, ambien to sleep, Ativan for anxiety and prosac for depression. I am eating good, take plenty of vitamins, lead a life in a wheel chair at the moment, but getting better and stronger everyday. I hope your brother’s recovery is quicker than mine is going, but he will get better, and just hang in there and take things one day at a time. As far as what you can do to help, just heed all the wonderful advice and ideas of previous posters. Things will get better. Sincerely Tina C.

    • Anonymous
      August 16, 2008 at 4:30 pm

      Hi! I am Cathy C. I was diag. April 2007 with GBS and was hospitalized for 1 mo. I was not on a resp. I was able to maintain my airway although I did get a bad Pneu. & was very ill for 2 weeks & forced to con’t in-pt. rehab. My recovery is slow also. Although I am not confined to a WC I can only walk with a rollator, I don’t drive & I am not doing PT/OT at this time. I am having trouble with wt. gain due to the meds side effects and the inactivity. I want so bad for this to all end as fast as it hit but we all know that is not going to happen. I would love to hear more about your progress and tx. plan.
      Talk to ya soon!

    • Anonymous
      August 16, 2008 at 11:47 pm

      Hi Cindy, Thanks For Writing Me. I Am New To This Site. It’s Nice To Know Otheres Are Going Through The Same Things. This Is A Wicked Illness. Gotta Go. Hope To Chat Again. Tina C.

    • Anonymous
      August 18, 2008 at 9:42 pm

      Hi-just checking in to see how Andy is doing, and how the rest of you are. You are all in my prayers.

    • Anonymous
      August 20, 2008 at 8:44 pm


      Just some words of encouragement your brother is not the worse case ever because the symptoms and story you just told is exactly the story I am living right now. My mother was diagnosed with GBS on the 13th of July. On Monday the 8th she had tingling of feet and hands and we took her to the ER Tues. the 9th and she was not hardly able to stand by that evening they admitted her to the ICU unable to breath well and continuing to grow weaker. They were baffled by her symptoms so they transferred her on Fri the 12 to a bigger facility where they diag. her with GBS. She was intubated and was on the brink of not making it for the first couple of weeks very unstable vitals. She is now stable but she is unable to move anything below her shoulders she feels nothing but pressure and a lot of pain in her hands and feet and mostly her legs. She now has a trach. She also did not sleep and is still not sleeping well at night. She did suffer a lot of confusion also exspecially when she did not sleep. She was very constipated at first but now she is having the opposite problem. She has good days on the vent and bad days where she needs much more support than the day before. She did not get a pneumonia but she did have a lot of fluid on her lungs but not in them. She has been in the ICU the whole 6 weeks but now that she is more stable they are going to move her to an Intermediate floor where she can still be on the vent but needs a little less one on one time. She has been so brave but boy what a challenge for her and the family. I cant imagine having a young father going threw all this. My mom is almost 66 and my father is retired so it makes it a little easier that way to deal with. I hope your sister in law is doing ok with expecting a baby soon. I hope he continues to improve and is able to be home for that baby. The physicians told us that progress would be slow but boy I had no idea what slow really meant untill we were faced with this. Good luck and I hope your brother does well.

    • Anonymous
      August 20, 2008 at 9:09 pm

      Distressed Daughter,
      Welcome to the forum, sorry to hear about your mom. I was diag. 16mo. ago & not nearly as bad as your mom. Thank God, early diag. & early tx. slowed progression. This has been the longest 16 mo. of my life. I have 2 grown daughters & let me tell you they have been my rock. My oldest daughter is an RN & she diag. me & stays on top of all my medical needs.
      Just con’t to be there for your mom & your dad. This is going to be a long slow process, just be strong & supportive & you will all get through it.
      Your all in my prayers!:)

    • Anonymous
      August 20, 2008 at 9:09 pm


      Just some words of encouragement your brother is not the worse case ever because the symptoms and story you just told is exactly the story I am living right now. My mother was diagnosed with GBS on the 13th of July. On Monday the 8th she had tingling of feet and hands and we took her to the ER Tues. the 9th and she was not hardly able to stand by that evening they admitted her to the ICU unable to breath well and continuing to grow weaker. They were baffled by her symptoms so they transferred her on Fri the 12 to a bigger facility where they diag. her with GBS. She was intubated and was on the brink of not making it for the first couple of weeks very unstable vitals. She is now stable but she is unable to move anything below her shoulders she feels nothing but pressure and a lot of pain in her hands and feet and mostly her legs. She now has a trach. She also did not sleep and is still not sleeping well at night. She did suffer a lot of confusion also exspecially when she did not sleep. She was very constipated at first but now she is having the opposite problem. She has good days on the vent and bad days where she needs much more support than the day before. She did not get a pneumonia but she did have a lot of fluid on her lungs but not in them. She has been in the ICU the whole 6 weeks but now that she is more stable they are going to move her to an Intermediate floor where she can still be on the vent but needs a little less one on one time. She has been so brave but boy what a challenge for her and the family. I cant imagine having a young father going threw all this. My mom is almost 66 and my father is retired so it makes it a little easier that way to deal with. I hope your sister in law is doing ok with expecting a baby soon. I hope he continues to improve and is able to be home for that baby. The physicians told us that progress would be slow but boy I had no idea what slow really meant untill we were faced with this. Good luck and I hope your brother does well.

    • Anonymous
      August 20, 2008 at 9:12 pm

      Andy’s Bro,
      How are things going? How is Andy doing? Just haven’t heard from you for a few days and just thinking of all of you and especially Andy. Hope thinfgs are improving for Andy. Keep us posted!

    • Anonymous
      August 26, 2008 at 4:35 pm

      I am just returning from vacation. My mom/dad and doctors convinced us to go as Andy was doing quite “well” (such a relative term, isn’t it…) before we left. Also, as a mother of 4 it was good to reconnect with my family after a month spent at the hospital.

      First of all, I want to start out by sending a HEARTFELT thank you to each and every one of you that offered words of advice, kind thoughts, prayers, and shared your stories with me. It literally brought tears to my eyes to see the outpouring of care and concern from people who do not even know my brother. Again, I can’t tell you how much it means and how important you all are to me and to my family. God bless all of you!

      Good news: Andy is doing well! He has been transferred from the ICU to a community hospital and has just had the trach removed earlier this week. He has no IV’s at this time but still has the feeding tube. However, he was given a grilled cheese sandwich and tomato soup for lunch yesterday that he managed just fine with (insert wild applause here!!) He’s very happy to eat/taste real food again. It was quite a shock – both good and bad – to see him after a week of worrying incessantly about him while on vacation. The good was just to see him using his wrists to bring a cup with a straw to his mouth and to hear his voice again. His face is still pins and needles and it seems like his lower lip is a bit frozen so speech is a tad bit slurred but beautiful to hear. He’s very happy to no longer have the catheter, not sure if he’s regulated his bowels yet or not as I didn’t get time to hang out with him 1:1 dut to lots of visitors. The bad shock was to see how much weight he has lost. They said he has lost 45 pounds so far but hopefully now that he is able to eat some real food he’ll gain a little back. Also, I know that some of the loss is due to muscle mass loss so hopefully with his PT and OT he’ll be gaining more muscle mass each day.

      To answer a prior post, he did two rounds of the IVIG treatment. The neurologists’ at the previous hospital he was located really did not want to do plasmapheresis and said it would be a last resort only as it would undo all the “good” the IVIG’s were doing. They were consulting with a GBS expert in Hershey, PA who concurred so we were cautiously optimistic that it was a good decision for Andy. Now that he has had some recovery we are happy with the decision.

      He has developed severe pain in his feet so that is the next big obstacle (one at a time, right?) to work on. More good news is that the motorcycle club he belongs to is having a benefit in his honor this Saturday. It has been good for me to help out and get involved and we are all really looking forward to this Saturday!

      Lastly, I’d like to post a picture of him pre-GBS and post-GBS with his permission and if it’s ok with those on the board so that you can have a face to go with his name.

      Have I mentioned how helpful you have all been? 🙂 Seriously…thank you.

      Season (Andy’s sister)

    • Anonymous
      August 26, 2008 at 4:52 pm

      Season, I love your name! Now, about Andy….this is wonderful news. It is amazing isn’t it? I lost lots of weight when I had GBS as well. I needed to lose though so it was a good thing for me! 😀

      The pain in his feet is normal. Most of us had that and some of us continue to have it years later. I hope he is one who doesn’t have to suffer with it long term. They will likely be giving him something for the pain. Often Gabapentin or Lyrica are used.

      I am glad you got your vacation! I am also the mother of 4 so can relate to how important time is with your kids and how important getting away can be. My kids are all grown and gone now but you never forget the days of raising them! 🙂

      Good luck with the fundraiser this weekend. I will say a prayer that it is successful. Know that I will be there in spirit for you all as I am sure others here will be also.

      Take care and thanks for the update.

    • Anonymous
      August 26, 2008 at 6:40 pm

      Sounds like Andy is showing improvement. So happy things are starting to get better for him! Will still keep him in my prayers! Hugs

    • Anonymous
      August 26, 2008 at 7:07 pm

      Hi, Andysmybro.
      Others have given you more information on GBS than I possibly can offer, but I do want to tell you how important it is that you and other family members be there for him. I, too, had one of those “worst” cases and was hospitalized for a total of nine months, six of it in the ICU. I also had a heart transplant, which apparently triggered the GBS. My wife left me when I was in the hospital absolutely unable to even feed myself, much less do anything else to take care of myself. I do not believe I could have made it through the entire experience had it not been for my sister, who was there for me almost every day. Even though he can’t communicate, your brother needs you to talk to him, to let him know he is loved, to encourage him to dig deep for the strength to make it through.
      I am now three years post GBS and continue to make small, incremental improvements almost daily. At some point I had to become grateful for what I have left, not bitter about what I lost.

    • Anonymous
      August 27, 2008 at 9:36 pm

      I am so glad to hear that your brother is doing so well. I am glad he is recovering so quickly and making progress. I wish I had better news to share about my mom. She is still so sick. last Monday marked 7 weeks from the onset of her symptoms. She is still totally paralized from her shoulders down and on the vent. She is in so much pain that they keep her pretty medicated but they really want her to be as unsedated as possible so she is as alert as possible. She is able to swallow finally so she can take small sips of water and yogurt etc. but she still cant’ move anyting below her shoulders. She has had two treaments of IVGS and one of the blood therapy. She has good days and bad days and today was a hard one. I see her every day and she has been in good spirits until just the last few days. She is discouraged that she is making such slow progress and is really flustrated she still cannot move anything and has very little feeling. Has anyone out there had a case of GBS this severe? I just hope she can recover from such a severe case.


    • Anonymous
      August 27, 2008 at 10:17 pm

      Hi, I was totally paralyzed and on life support. The gains are small at times and it can be discouraging. Keep reminding her of the little things that she is acheiving, such as the ability to swallow and sip. That is a huge start although it may seem small right now! GBS-Getting Better Slowly.

      I was in ICU for almost 2 months before I could go back to the ward. It was a very trying time. HAving you there will be the best help you can give her. Reassure her, share our stories with her so that she knows there is hope.

      I hope you got my last post suggesting you read through the caregivers thread. You need to keep yourself well and rested so that you can help your mom. We need our caregivers and can never thank you all enough for what you do to help us through this time.

      Take care and if you have any more questions, if I can answer them I will.

    • Anonymous
      September 4, 2008 at 12:13 pm

      Season, So glad you got to take a vacation and very happy for your brother’s improvements. Please tell him he has been in all our prayers-all of you have. Good luck on the motorcycle benefit-any chance Andy would be up to an 1-2 hour pass by ambulance-maybe the company would donate their van or something so that Andy could attend the benefit? That might perk his spirits up, or otherwise get the gang up to see him. Please let us know how things go and tell him we said hi.

    • Anonymous
      September 5, 2008 at 2:29 pm

      Hey andysbrother, I hope Andy is doin better now.

      It was a bit weird reading the start of your story as it was very similar to my experience. I was 26(this happened 4 years ago), I had a flu and sore throat for some time. Started feeling generally weaker but didnt pay too much attention to it. I thought I was just sick with the flu. A couple days later I had a weird feeling in my legs. I couldnt explain this so I just let it go. I got worsem got a fever, stayed a day in bed. The day after my mother called me, she said I sounded so blurry that she insisted on coming over. I didnt like this so I got up to clean up a bit. As i got out of bed my legs let go and I was laying on the floor. There I waited for my parents to arrive, they called an ambulance and we was off to the hospital.

      Arrived at the hospital my condition continued to get worse, the doctors had no idea what was wrong with me. they thought I was on drugs. I had big problems swallowing and soon my breathing became a problem too. After two days there the doctors agreed that I might have GBS and put me in intensive care and on a ventilator. They also put me in an induced coma which I stayed in for a week. Waking up I couldnt move anything. The ventilator prevented me from speaking and even my lips were too weak to move properly so nobody could get what I wanted to say. This was the most frustrating of it all.

      What I really wanted to tell you was my positive experience. I stayed in intensive care for a total of 10 days. Then I was transferred to a neurological department in the hospital. After staying there for a week I took my first steps on my own. A week after that I was transferred to rehabilitation. there I stayed for a total of two weeks before I was discharged. I was fit to live normal again, weaker than before but able to do everything I could before. I got plasmapheresis about 5 times, and I think that was what made me recover quickly.

      I just wanted to show you how someone who got the bad case of gbs could recover and get really good again. Today i’m 100% fit, I work fulltime (+ some hours now and then on a second job), I got married, I got a beautiful daughter and I can participate in physical activity (soccer,basketball etc) when I like. So never lose hope, I know my parents was imagining the worst scenarios possible when i was laying there in a coma, my father even had plans for building a ramp for my wheelchair (thank god I never had to get one). The only visible sign of my illness now is the scar on my neck.

      I really hope your brother can experience a good and quick recovery like me, and he is a lucky guy who has family who is there for him. Thats what kept my spirits up in the hospital, friends and family constantly visiting and being there for me. Feel free to email me if you like to: [email][/email]

    • Anonymous
      September 5, 2008 at 11:44 pm

      Reading the account of your brothers ordeal brings back a flood of memories. I had GBS 34 years ago and was totally paralyzed like your brother. Insomnia is very common in GBS. Also weight loss. I was unable to swallow for 6 weeks and went as low as 95 pounds. I am 5′ 8″ tall and was pregnant at the time.

      The most important thing you and your Mom can do is to keep showing up.
      GBS is a long and frustrating disorder. It is hard when you are that sick to believe that one day you will be able to walk again or lead a normal life. The days seem endless and the frustration drives you nuts. I remember the day I took my first sip of water after more than six weeks. I was so happy I cried. One thing GBS will do for your brother, it will put things in perspective. I don’t sweat the small stuff. I. like so many others on here, know how quickly your life can be turned upside down by this insidious syndrome.

      Take Care and tell your bother to hang in there. It will get better, but it will take time.

    • Anonymous
      September 7, 2008 at 3:12 pm

      Season-just wondering how the motorclub’s benefit for Andy went yesterday?????? I hope it wasn’t a wash out……..Emma

    • Anonymous
      September 9, 2008 at 5:22 pm

      Hang in there Andy! I had many of the same symptoms as Andy(GBS/MFV Feb06) and it has been a slow and long recovery process (still at it). The one thing I looked foward to in the hospital was my wife and daughter’s reading cards and notes that friends had sent, since your vision is poor and not to mention the paralysis and discomfort. The day they took me off the vent. was my sign to get moving. As one of the great nurses said “when you can move something move it and dont stop”. Encourage him with the physical therapy and most important, take care of the care givers .Best of luck

    • Anonymous
      September 12, 2008 at 3:44 pm

      Thanks for all the encouraging words and positive thoughts!!

      Andy’s benefit was wonderful. The motorcycle ride was about 3 1/2 hours and we had about 80 motorcycles in the run. It was a beautiful late summer day (about 80 degrees). I rode with one of Andy’s friends and I can’t tell you how great it was. I kept getting so emotional because at any given time I would look in front of me and see probably 20 bikes and then look behind me and see another 60 or so and I would just think…all these people are here to support my brother! Aside from seeing my children for the first time when they were born there have been very few moments in my life that I felt completely overwhelmed with gratitude and love.

      The run ended at the motorcycle club Andy is a part of. As we all got off our bikes and headed in to the clubhouse for a drink, there was a bottleneck and the line stopped moving. All of a sudden a friend of mine that was up front came back and pulled me through the line. There, at the entrance of the clubhouse sat my brother in a wheelchair greeting everyone. I don’t think there was a dry eye in the place. Can you imagine, seeing all these big biker guys and girls crying? It was great! The nurses at his hospital had secretely worked out a 4 hour pass for him to attend the benefit and two of them actually drove him an hour so that he could surprise us!!! I can’t believe he even kept it a secret! My husband had offered to skip the benefit and hang out with him for the day so that he’d have some company and he insisted that he didn’t want any company that day. Now we know why he didn’t want company!

      They had raffles, food/drinks, a band, and a huge bonfire to end the party. A fantastic day! $1400 was raised to go toward his medical expenses so we were very thankful for that. Even more than the money, just seeing all of the people who gave of their time to support Andy was so gratifying.

      Andy is now responsible for having someone write a couple of things in his “Brag Book” every day (thanks for the sugestion). He moaned and complained about it at first but we insisted. He’s still resisting the anti-depressants for some unknown reason so the tradeoff is that we require him to list at least one positive thing in his brag book each day. We’ve found that he is starting to look forward to it though even though he won’t admit it. 🙂 He’s begun to move his legs up and down by sliding his feet up the bed and bending his knees. He still has no movement in his feet and they are quite painful. His hands aren’t doing a whole lot either but he really is making great strides. Last Friday they began some intensive physical therapy where they are helping him grip parallel bars and then two therapists help him stand. They brace his knees with their knees because his knees start to buckle. For the first time, he’s saying that it feels good. Up until now he was in a lot of pain when they would try to move him.

      He’s quite testy sometimes but who wouldn’t be? Sometimes I rent new movies and make root beer floats with the hospital ice cream and we have a little movie fest.

      That’s all I can think of for now…have a nice weekend!

    • Anonymous
      September 12, 2008 at 4:23 pm


      Your post brings tears to my eyes. I know EXACTLY the feeling when you say the overwhelming gratitude and love you felt with all of those people there in support of your brother. One year ago this month, I held a benefit for my Mom. It was a breast/lung cancer awareness benefit. I worked so hard on it with my sister…We had kept it a secret from our mom b/c we were afraid she wouldnt want us doing it. The night before, we told her. Sadly, she was much too sick to make an appearance at her party.
      I’m glad you had such a great turn out and what a surprise that your brother was there. That had to be just incredible.

      Such support helps us to believe that good people really do still exist.

      Prayers to you and Andy…and all of those that supported him that day.


    • Anonymous
      September 12, 2008 at 4:23 pm

      My sister came down with GBS at the end of June 08. First time she has ever been admitted for hospital care. She was scared to death at how fast GBS crippled her. On the 3rd day they had to put her on a respirator, which she is still on. Her anxiety level would go up and down from one day to the next along with dementia level. At times she would believe everyone was trying to kill her. But being there with her helped to reassure her she was safe, which we all worked in shifts, and now she is doing much better mentally.
      Being so helpless and not being able to communicate was the most frustrating thing for her. I made alphabet cards with 6 letters each and we would spell things out with her nodding or shaking her head. She can move her head about ½”, enough for yes or no. It helped quite a bit during the tough times.
      I wish you well in your endeavor, it is not easy for anyone. But this forum does help a lot.