Wife of GBS Patient

Hi Everyone,

I am the wife of a GBS patient. He has a severe case. My husband, Paul, is 39 and very active, plays sports 2 or 3 times a week. We have two small boys 2 years old and the other 10 months. They have not seen daddy in 3 weeks.

He had a trach put in on Monday and can no longer move anything but his head and shrug his shoulders. We live in Baton Rouge Louisiana. This came on in 3 days time while we were at Disney World. We have NO Idea how he got it, bc he hasn't been sick or had any shots recently. We just got out of the ICU on Wednesday. We are now in the RCU, we have to have someone with my husband 24-7 b/c he needs suction all the time b/c he can't swallow. He is also extremely scared. I'm scared and trying to work, take care of the kids and him.

Any sort of info would be helpful. We have done a round of IVIG and Plasmapherisis. They are talking about doing another plasma treatment on Monday.

I hope that I did this right, admins, if not please delete and let me know, thank you :)

This July I will have been home for 2 years. I acquired GBS in Oct. 2012 at age 59. His case is similar to mine however I was in ICU for over 3 months. He also is much younger so I would bet his recovery will go very well.First off, it is scary for him and everyone else, but please try to stay as positive as possible. I'm pretty sure they are giving him some strong pain-killers so he may be having some awful nightmares. I sure did. Tell him everyday that the staff is working as hard as possible to ensure his recovery. You will start to see recovery in him long before he does so let him know the least little improvement. Massage his arms and legs and wipe his face with a warm washcloth. The suction thing is pretty scary too. I felt like I was drowning at times, but they always reassured me that I would be okay and not drown even though I couldn't communicate at all. He will get better! It will probably not be as fast as you wish, but he will get better. Keep telling him that. GBS stands for Getting Better Slowly. You are going to be okay. Stay strong. There are many of us out here praying for him, you and your family. God bless.

Thank you sooo much! I will do all of these things. I try to be reassuring as possible and suction often. He has a clicking sound now that I run to, I will start the warm wash cloth today!

TLC, I am curious to find out if you were on a ventilator since you were in ICU for over 3 months. If on the ventilator, how long? My daughter 33 and an active runner is being weened off the vent and up to 18 hours a day. She has a severe case and has had the vent for over 9 weeks. Two relapses put a damper in recovery. We are now on the recovery path and everyone has told us that it is slow and you will recover. The Dr. just told her they don’t know how much she will recover or walk, contrary to everything we have read for GBS. She does have movement in her quads. Are you walking? Have you heard of people not walking after GBS?

To wife: we have read the book by Holly Gerlach of Canada and it was very helpful to me to get an insight of how the patient feels. I also contacted the GBS organization to get in contact with the local chapter. Someone came out to see my daughter who had GBS and that was very helpful to her and her husband. I am trying to set up a meal delivery for people in town or out of town by way of local restaurants who deliver. This was a suggestion by the person who had GBS. If you have someone who wants to help maybe they can set this up for you. I have been at the hospital daily and my son in law after work. Family visits when in town. She did not see her toddler for 5 weeks! She really likes someone at the hospital since she could not verbalize her needs. We used an alphabet chart. If people want to help take them up on it. Either to help with the kids or to visit. Family and friend support is so important. Stay strong. We have had so many ups and downs but keep picking ourselves back up. I like the term: getting better slowly.

Thank you Judy. We have someone here at the hospital 24-7 also. That is the hardest part is getting a schedule of ppl to be with him all the time, but we are working on it. We were on a vent for 2 weeks then they puta trach on him :(.

I will also look into the book, thank you. Have you done any long term care facilities? They are pushing us towards that, but I feel uncomfortable with it.

My daughters trach was put in after 10 days on the breathing tube in her mouth. They wanted to send her to a subacute/nursing home (maximum 3 hours therapy a day) for vent weening. Then she would be able to transfer to acute (minimum 3 hours therapy a day) or stay where she was at. Fortunately she gained a lot of movement and we were able to send her to an acute facility that does vent weening and acute rehab. Now they have told us that after 3 to 4 weeks in acute she will have to go to sub acute. Her insurance has no cap as long as she is improving, which she is. So we are in the middle of that battle right now. She would like to stay where she is at until she can go home.

I have worked in a nursing home. My advise would be to check out places before you send him. I worked in one that had no oder and caring staff. A separate area for rehab is nice. I will be happy to follow your husbands journey as we are a little ahead of you.

My daughter had her first symptoms April 4, 2015. I have been told that no matter how hard you work or try the nerve has to heal to get the movement. Although she can only start the movement of the bicycle with her legs her muscles are getting stronger as the machine works them. She is able to do a hand bicycle on her own with hands wrapped on handles.

Hope your husband hits his plateau soon and your family can start the road to recovery.

Thank you Judy! This gives me hope and helps me to start somewhere. We are currently in the RCU, they think that we have plateaued and are going to try our 2nd round of plasma on Monday.

stay positive and stay strong . you can woop this

Thanks kel I hope so. This is the most frustrating thing every.

my husband age 61 has a severe case of gbs the same as your husband. they had to put in a pacemaker. he has been in the facilities from march 13, 2015 and still in a rehab and nursing center. he can only move his right fingers and he moves his feet but that is it for the last four months and we are looking at a very long road. i will be praying for your family.

I am so sorry Jan, I know it doesn’t make it better, but I know what your going through. Praying for y’all too.

Jan, what treatments have they done on your husband so far?

AllotesWife said:

Jan, what treatments have they done on your husband so far?
he got 5 doses of ivig

Where do y’all think the best place for treatment would be, does any one have any suggestion on who to call about getting more help. We were told that this is the worst case they have seen in 10 years.

We were in a hospital that had its own neurological unit. When my daughter had her second relapse while still recovering they assigned a neurological specialist to oversee her. If you don’t have a neurological team following him now then that would be my suggestion. We are on the East coast so I can’t help you with a hospital name. My daughter had 9 plasma exchanges and 12 IVIg’s before she plateaued. She is starting week 13 and should be weened off the vent this weekend. Doing swallow test to see if she can eat or drink.

Hang in there, she has a very severe case also but is recovering like everyone says…slowly!