[livingwith]

In 2004 I awoke to my husband looking at me with tears in his eyes. I tried to talk, but soon realized I couldn’t. I tried to lift my hand to his face and realized this too was impossible. As I looked around feeling like my entire existence was my eyes, I slowly realized that my eyes were all I felt. Then I felt those terrified eyes darting about wondering what the hell was going on. My husband, seeing the fear in my eyes, said, “Angel your on a breathing machine, and your paralyzed....Read the full article

[mudder]

No you aren't alone. I had GBS back in 1970. And I had it bad, could blink my eyes and move one finger on my right hand. 17 weeks in the hospital, and another 8 months in PT. Left the Hospital weighing 53 lbs, and that was 10lbs up from my lowest weight. Was 19 years old at the time.
I still have some residual weakness on my left side, but it's barely perceptible, and only problem is that I don't always feel the ground uneveness, so call me stumbly.
Since then, I've had a career, a 37 and still going marriage, a son, raised and grown. It's normal to find yourself depressed, GBS is devestating, shocking, frightening, very very scary. I had a neurologist who recognized that, and put me on anti-depressants, they truely aided the recovery. As he explained my body had been blown apart, and the biochemistry completely out of whack. It would be easier to get a grip on everything and put my energy towards recovery if I got enough sleep, didn't worry and obsess and stopped crying. He was right!!
First few years, tired very easily (still do), and overwhelmed my recovering muscles more than once. Today I can walk 5 miles, have learned that either I go to a movie or go out to dinner, but not both. That was harder to take at 20, then it is at 58. GBS happens, it makes you tougher, it makes you more compassionate, it makes you realize that being able to lift a hand, a baby, or kiss an loved one is a marvelous gift.
One little side note, in 2004 I woke from a nap, and over the next hour noticed the pins and needles on my right side, which became a dull numbness. Got worried enough to mention it to my husband, who got all pissy about going to an ER. Naturally I refused. Several hours later, I finally decided to go. Afraid I shocked all the doctors when I (and my husband) laughed in delight when they told me I had had a stroke. Whoopee, a stroke, so much better than GBS!

[spyderwoman]

Hi:
I read your story and the one you replied to.
My father is in the hospital diagnosed three weeks ago with GBS. He had to be put on a vent, now on a trach and is having a second round of Immunoglobulin to see if that will aid in his recovery. He's never been ill before, not even a cavity. He is devasted. He can move his head and shoulders and is working on his arms now. Lots of pain. Can't feel his feet but has severe pain in his legs. He just turned 70 but has the body/heart of a young guy. He's on various pain medication and I'm trying to keep his spirits up. I've told him the truth throughout all the meetings with his doctors. I'm being his advocate. What might you be able to share that I can let him know that might make him feel not so alone and paralyzed? Is there a GBS contact that helped you all through this and your families? I'm trying hard to do all the right things to manage his care and it's breaking my heart as well knowing he's in such pain and his frustration of being in the bed all this time. Based on the stories, 3 weeks is nothing. I'm looking for a way to give him hope. He's a very determined man so I believe he will recover. He's still in critical care after 3 weeks. It's so hard. Anything you might share will be helpful.
I'd be greatful. Thanks so much.

[seaangel2364]

Hi again- Thanks for reading my story. First I have to say, and can not say this enough, that you can NEVER EVER stop talking to him. He can't respond but he knows. My husband who was by my side every day said to tell you to rub his hands and feet. I had drop foot which is when the feet lay straight down from your legs, and my hands were curled up to my pits. He rubbed them several times a day to keep the blood flowing.

When I was sick I was in a small town and nobody knew what GBS or CIDP was let alone how to treat it. Your are lucky in that they have info. now and help groups. Not only for the patient, but the families as well. Being sick and loving someone that is sick are completely different. I've been through both, and am now watching my husband with me...still. I'm not sure who feels worse for the other!!

Here is the GBS group that I found. They have convention and more important people in your area you can talk to. Here's their info for: Guillain-Barre' Syndrome - Chronic Inflammatory Demyelinating Polyneuropathy -
The Holly Building Phone; 610-667-0131
104 1/2 Forrest Avenue email: info@gbsfi.com
Narberth, Pa. 19072 www.gbsfi.com

It will be a long road for both of you, but hang in there and hopefully it will be a short bout of this crap for him. I'm on year 4 and seem to be getting worse, but he started out healthier than I did. I wish you the best and hope I have been of some help. If I can help you at all with anything else please let me know. Take care and just be there! Shawn

[spyderwoman]

Hi Shawn:
Thank you so much for responding.
I called the GBS organization and left a message. I had emailed them last week but no one had responded yet. My Dad is on his second round of IVIG as they felt he might benefit from it. They think he may have been given the first round before the syndrome was through it's attack. He said to me today through his mouthing words that " I can bring him a better day tommorrow." He is fighting off a bacterial infection that came in through the trache. He gets no breaks either. His breathing is getting better on the daily trials but I'm sure this infection is slowing him down. He had physical therapy today and I thought he was going to kill the lady. She put him through hell and his legs are burning in pain. I can't imagine what a struggle you went through and won't pretend too. My Mother doesn't know how to help him. I'm being very honest and telling him the truth the whole way. I will take your advice and rub his hands and feet. He can move his shoulders and his elbow. Working at moving his hands now. Very rough. He's becoming depressed and I'm just trying to keep his spirits and determination in check.
Thanks for your advice and the organization. Keep working at being healthy. I'm adding you to my prayer list.

Randi.

[mosgoodc]

It is amazing to read these many posts from people with experience with GBS. I am coming from the perspective of the patient, but can tell you that my family talk about it and think about it as much as I do post-episode. I jogged 3 miles one afternoon, then awoke in the night with a pain in the center of my back between the shoulder blades (age 38). I thought I slipped a disk and went to see a doctor expecting to be told to take tylenol and stop complaining. Four days later I was in ICU on a vent and completley paralyzed. I was in ICU then inpatient therapy for four months total. My family came together to ensure that all available treatments were there for me. IVIG did not work in my case. I think it just took its normal course and I benefited from very diligent nurses who "turned" me often to ensure no bedsores. Family rubbed my feet and hands to try to ensure I would be in good shape for therapy when I was able. The techs who take care of the vent ensured that the tubes were clean and that my pathways were clear around the clock. I had lots of collateral problems including a MRSA infection in my lung which caused me to be isolated and subject to precautions almost the entire hospital stay.
It's for certain that a GBS patient is "in there" although they probably appear to be sedated or blank in expression. I think the mind tends to cope with this by either dreaming/hallucinating or becoming incredibly calm with surroundings. After all - you can't talk and those around you cannot understand unless they are willing to patiently spell out words by blinking yes or no to the alphabet. (No one is that patient). I think I was given the best treatment and utmost attention by a loving family. The one thing I probably could have used was a visit from someone who actually had GBS and could provide confirmation that everything was going to get much better. I hope I can provide that for a GBS patient one day...

[spyderwoman]

Hi:
I just want to thank you again for providing additional information regarding your story.
I wrote you before below and since then my Dad, Jerry, has been moved from CCU to Special Care Unit for Trach patients. He's now doing the CPAP level weaning around 13 hours a day to eventually get off the trach. He's moving his arms a bit and can wiggle his toes this week. Everything is still very shakey. He also contracted MRSA and another very dangerous bug in the CCU. Some docs wear the isolation stuff, some don't and you have to figure that's how it gets moved through from patient to patient. He has a central line and a peg (stomach tube) now. They are doing physical and occupational therapy daily and the pain is really bad for him. I'm going to share your story but agree that it would be helpful to have someone visit who has been there, done that. He keeps his eyes closed a lot but I'm guessing he's trying to calm himself and not feel so out of control. I can read his lips very well and he's learning to use the trach speaking cuff. Longtime coming...5 weeks today.
If anyone else has any thoughts...I'm hanging on by a thread and could really use the positive thoughts.
I know I'm not the victim but I'm there 6-8 hours a day before my Mom comes in to stay the remainder of the day. I also am making sure that I know all the treatment team and what they are giving him. I've made Excel documents of all his pain and antibiotic medications so he'll know what they were giving them.

[mosgoodc]

Just a quick note to follow up for Jerry and Randi. If not already suggested to you, there are two books I read while still learning to walk again after GBS (month 5). Joseph Heller's "No Laughing Matter" and "Bed Number Ten" (author's name unk). Joseph Heller was in his 60's when he came down with GBS and his story is told with humor. Reading is a great way to "Process" what you've been through. My family who were there for me all read along with me... Also one more idea for support, our family started a "Caring Bridge" page on caringbridge.com and it provided a forum for friends and family to support all involved as well as me. I keep the posts from that page in a book as a reminder of all the people who were rooting for me. Good luck and hang in there!

[seaangel2364]

Hello again- I understand about wanting a visit from someone with the disease. Unfortunately when I was sick there was only one case my nurse knew about and the girl didn't live. It seems all they knew then was that children got it. Wrong oh so wrong! I am not a child. (well all the time LOL)
Anyways, Your story mirrors my own and it was crazy to read, but comforting so thank you.

I must agree that hallucinations are very common on all the meds. Believe me I had horrific hullucinations, but this was after they started the meds. I was in my coma before, and that's when I heard the docs say that I wouldn't make it through the night. For the next three nights I tried to prove them right, but I'm stubborn and was going to prove them wrong, and I did. My husband too rubbed my feet and hands. It's crazy how much our stories are alike.

I finally see a new neurologist this month, and never have had IVIG. So I'm praying for some kind of life back. Please let me know how you are and what's going on. As you know no one understands, but the ones that love us try. I've lost all my family, but my husband, so it's hard on him as well. I say, "There's being sick, and then there's loving those that are sick!" They both are, and I've been on both ends. Here's my direct email if you'd like to share more. seaangel2364@aol.com. Take care, Shawn

[seaangel2364]

Hi again - I wish so much I could give you news that could help him if you told him. I too got MRSA and everyone had to wear gloves, robes, & masks. It makes you feel horrible as a patient even though it's nothing you did. I had double pneumonia, strep pneumonia in my blood and complete renal failure.
You know the rest. Unfortunately it's going to be a long road. From ICU to ICU-stepdown, to step-down, etc. The days are like years, but just be as positive as you can. He's going to be horribly frustrated as well, because he feels helpless. Man I lost it so many times with P.T. nurses it's not funny. "I can't lift my arms and you want me to clean my glasses and brush my teeth"??? I could't even fluff my own pillows.
Just be there the best you can, and don't take any of it personally.It's a long road, but he has wonderful people around him to help him down it. I know to it's hard on you the family member. I too was with my mom through a long horrific illness. My mom didn't make it, but your dad is much stronger. Oh my mom didn't die from GBS though.
Take care and if I can help at all here's my email: seaangel2364@aol.com
Shawn