I need help! Sever GBS
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June 6, 2011 at 10:36 am
My wife is currently in the hospital. She has been diagnosed with GBS. I am trying to understand how sever she is and what the out come may be like.
She has been in the hospital for a few days shy of one month. She spent 3 weeks in the ICU and has been on assisted breathing for most of this time and is still on it even with the tracheotomy. The disease paralyzed her completely and even affected her eyes.
Now that it’s been almost a month since she has been there I was hoping to see more improvement than where we are today. Here current abilities are that she can move here arms, head, and neck and wiggle her knees just a little. Her movements are for the most part uncoordinated. She can’t feel her feet or move them or her toes.
She still has quite a bit of twitching that goes along with this but the twitching that really concerns me is her eyes. They roll back into her head and they move together like she is looking at the middle of her forehead. -
June 6, 2011 at 8:30 pm
Dave i am sorry to tell you that everyone has a different lenghth of recovery.Yes and it does depend just how her strength and pain is.If she is off vent then that is a huge step.!!And i always was reasurred that i would get better and stronger.Her rehab is also important.And you have turned to a great foundation for support.Remember you can also call for extra help and info.I also was severe so i will say there is always hope.Wishing you the confidence that this will get better.Be positive for both.Good luck.
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June 7, 2011 at 10:46 pm
Dave –
I am sorry you and your family are going thru this. I was where your wife is now 3 years ago. GBS is a scary thing and unfortunantly there is no set time limit on it. You have to keep being positive because she will get better. The strides she makes may be small but the more incouragement you can give her the more it will help.
I don’t really know how hard it is to watch a loved one go thru this so I can only speak from the point of view as the person who had it. I can say the more I saw my husband and family the more strength I got from them. She will have days where she is so frustrated and angry but that is the strength that will keep her going and help keep her from giving up. And trust me there are going to be times when giving up and crying are all you want to do.
The best advice I can give you is to be by her side and never let her feel she is alone. The paralysis, numbness, tingling and the ventilator will all slowly get better and go away. It could take awhile but the support to never feel alone is the best thing you can do for her. The rest her body and the medicines will take care of.
This may not be the advice you were looking for but I think not feeling alone helps make this whole thing a little less scary. This is a great forum and you will always have friends here who will listen and help in anyway they can, for both you and your wife.
I will keep both of you in my prayers and keep me posted on her progress.
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June 8, 2011 at 4:32 am
Dave – welcome to our family! I am sorry for the need to join us. You will find lots of helpful info. Keep asking questions – someone will answer. Besure to contact the Foundation for an info packet.
Nerves can take a very long time to heal. The longer the specific nerve the longer the time – like in the legs. Be attentive to her nutritional needs. Many of us found a “key” in this. Also for some, massage therapy – very gentle at first, can be soothing as well as encouraging healing by moving the blood flow. Remember that the nerves are the body’s communication system and when it “goes down” lots of things can and are affected. Infact it’s only rather recently that the docs could admit that heart rythyms can be affected. Mine most definitely were. It can mess with blood sugsr levels ’cause it can mess with the functioning of the pancreas. I suffered with horrible headaches but as I’ve continued to improve the headaches have also. The list is long- just remember that the “morse code” is garbled:eek: Infact your dear wife may have difficulty in formulating what she wants to say (she may think one word but another will pop out:eek:) Also she may be in a lot of pain when touched. I couldn’t even tolerate the sheet touching my legs!
Keep your questions coming. And please, tell your wife that the whole GBS family is praying for and cheering her on. We look forward to her coming here and introducing herself. If you have children make sure that she gets to see them. Isolation can be scary and depressing:( hugs to everyone involved! -
June 9, 2011 at 12:40 am
[QUOTE=dave824]I was hoping to see more improvement than where we are today. [/QUOTE]
Ah, good, you’ll understand why around here GBS also stands for “Getting Better Slowly.” If your wife had a quick recovery it wouldn’t be GBS 😛
Patience, Dave. The remarkable thing about GBS is that recovery does happen. I don’t know of any other patients with nerve damange who can say that. It doesn’t happen on your timetable, or her’s, or any doctor’s. But it does happen.
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June 9, 2011 at 10:00 pm
Thank you so much for the replys 🙂 I havent been home much to keep my eye on this thread but things are starting to look up finally.
Her eyes have mostly stoped rolling back and the twitching is mostly gone. She is slowly getting her cordination back but still along way to go.
The Dr is weaning her off vent now, 12 hours on 12 off. She came down with pneumonia while in ICU but getting alot better now. She can alomost lift her knee off the pillow but still no go below that. I will keep hope going and pray for better days;)
These forums have been an amazing resource for me! I can’t thank everyone enough.
I wish all well and good health! -
June 10, 2011 at 8:44 am
Dave also while in bed be sure she has therapy and always move her hands fingers and legs .If resting my wife use to put wash cloths or roll towels in my hands so my hands would not claw.Therapy is important.As well as having feet in certain positions.My wife always played soothing music.Of course i do not remember it.Allso GBS is a roller coaster.Many prayers with you.
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July 12, 2011 at 12:53 pm
Well here we are nine weeks since she was admitted to the hospital and she is 3 days off the vent. Yay! Things have been very difficult and improvement has been very slow. Not much to say in the movement department other than what has already been said.
Do you guys think she will make a good recovery? I am loosing hope and all that I have I give to her. I know every recovery is different but I get so down some times. She is to young for all this…
I guess I would really like to hear some stories of slow but good recoveries at this point.
Thank you everyone for your well wishes and prayers. -
July 12, 2011 at 3:12 pm
Dave, hang in there!! Please don’t lose hope. My recovery seemed slow, but I had to focus and measure the “small” improvements. That’s what kept me going.
Your wife is off the vent. That’s fantastic. Have they started physical and speech therapy?
You’re both certainly in my prayers!
Take care and stay strong,
Tina
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July 12, 2011 at 4:28 pm
They have been doing physical therapy once a day but its been limited due to her being on the ventalator. The last 3 days they havent done any but I am sure they will start again soon. Also she has problems with her heart rate being high. They give her meds to bring it down but at one point it was going over 165. Now it seems to stay around 90-115. Im sure this has also limited her physical therapy. Her mom and I do little exercises with her when she is in the mood for them. Just last night we helped her sit up!
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July 12, 2011 at 9:22 pm
She is very lucky to have you there. Progress is slow but keep focused and things do get better. Learn to think in terms of months and not days celebrate every improvement. I am 10 month in and back to doing most normal things but still have a ways to go.
Take care!!
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July 15, 2011 at 11:49 am
Thank you for the reply Kevin. I have not seen many stories in the forums about slow recoveries that I can use to guage her progress by but yours sounds close. Thank you for the hope this gives me 🙂
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December 26, 2011 at 9:36 pm
My update: 8 months later and we are having improvements. Slow and small but they are there non the less. She still really hasent got much of her voice back yet but we still have therapy we do daily and have the therapist (all therapist) usually 2 times a week at home.
Still cant sit up on her own but we were working on that. Her mom said she woke up on her side the other morning. This is good!
Her legs seem to be the best thing she has going. Im starting to think Miller Fisher variant at this point. When she was in the hospital (4 months) she could only wiggle them side to side a little. Now she can lift her legs up off the bed, kick them out when in the wheel chair.
Still having trouble with her arms. Takes baclofen 2 times a day to stop the terrible spasms. Thank god it stopped. She cant seem to relax them very well. Always straight out and to the side.
Memory has improved some but still have a ways to go.I love her so much. Its been so hard and so long.
Will this nightmare ever end? I cant possibly imagine what it is like for her. Every day I see the worry on her face. The sadness. My heart is broken.
I’m back to work now and not being home with her has been the hardest thing for me.
Her mother has been here with us the whole time and I cant even express how much it means to me and how much help she has been. -
June 26, 2013 at 7:09 pm
I know it’s been awhile, how is she doing?
Yvonne
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