almost new to this

Has he received IVIG or Plasmaphresis? That will not cure the damage the immune system is doing to the attack on the myelin sheath aroud the peripheral nerves, but it should stop that attack. Then it takes time for the myelin to repair itself. GBS or [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly is different for everyone and depending on if you have a variant also it takes time to heal. REST is what the nerves need to heal and rehab is what the muscles need to gain strenght again. Keep things possitive! It is a scarey process. Ask him what he needs you to do to help. Somedays will be worse than others. Did you send for the information for caregivers? It is very helpful. You are here with family and tell him about us. Everyone here was in the hospital for different lenghts of time.

Hello and welcome, sorry to hear about your spouse. It is hard to say how his disease will progress, we all have very different experiences. Are they being aggressive with the treatments, either Plasmapheresis or IVIG? We are here to help however we can.

Jerimy

hi dreamseeker & welcome,

constantly remind him that he will make recovery. this is a miserable disorder, but the recovery rate is extremely high. let him know gbs stands for Get Better Slowly so he will know his slow recovery is normal. find out what he likes to do [ie. listen to music] & see that he gets it. neurontin for pian. plenty of rest is important. read this board to become more familiar w gbs. it is rough on the you too. we know. take care. be well.

gene gbs 8-99
in numbers there is strength

If you browse through the many stories in the forum you will get a good idea of what to expect……there are more questions than answers, each case being similar but vastly different!

I too experienced some “delirium” briefly at the point of my worst condition.

GBS is not a “virus”….it is an auto-immune disorder…..typically a virus or infection cause our own white blood cells to attack the covering of the nerves, then the nerves themselves.

Aside from the medical care, all you can do is hope and be supportive.

Getting GBS comes down to just BAD LUCK.

ds49,

I am sure it is very hard for you to see your loved one like this, as a patient it was really hard for me to see what it was doing to my family. Where are you located? I am sure that we have liasions nearby and many of us are always available by phone if needed. He had a very severe case from your description which I am sure has been traumatic for everyone. My email is jerimyschilz at hotmail dot com . I am happy to help however I can. Also please contact the foundation at the phone number listed on the main webpage, they will send you a packet of information that will be of help to both of you. Take care and you are both in my prayers.

Jerimy

[quote=dreamseeker49]Thanks for your replies.Yes he has had two doses of five days each of ivg and has been on multiple narcotics for pain antibiotics for infections and has had blood clots in the lungs and abdomen from his feeding tube.He is now off the ventilator and was in a coma for 8 weeks.He is using a trac mask with a speaker valve but is having problems understanding why him and how long it will take to get better.All the positive talk seems to fall on deaf ears one minute i think he understands and the next he is cursing about something he thinks he is seeing but does not exist.The nurses have been for the most part pleasant but to see a doc is very rare they work the 8 to 4 shifts.He thinks he will be in the hospital for 6 more months but i am not sure.He keeps asking why he got this virus and I can only tell him he was the unlucky one because all of the possible reasons to get it ie previous surgery (had his bowels perfurate from croyns in November) flu , flu shot cold have all happened to him .I am just trying to make it day by day and i really enjoy the way you people share your bumps and roadblocks it gives me a beter understanding of the big picture .Thanks again[/quote]

Dreamseeker, Welcome to the Family. Your spouse would have less delerium and better pain control with neurontin, not narcs. narcs don’t do as good a job as neurontin or lyrica does, they are made for nerve pain where narcs are not. Keep the atmosphere around him on a positive level, don’t allow negative close, sure it is good to keep him up to date on his health situation and life outside the hospital, but thats where the line should be drawn. Watch for depression, if it happens and he doesn’t seem to be able to handle it, then antidepressants are used. Ask as many questions as you have or just vent when you need to. Take care.

Jer, Dreamseeker is in Ontario Canada.:)

I am sorry to hear your husband has had a stroke to add complications to another medical condition. Just keep things possitive you can see just moving to a different room with just about the same care has given him so much hope. I don’t think they have given him much hope in rehab but that can definately change for the better too. What do they know at this point will happen he has a long recovery from GBS and will get better….it is not like a stroke that is a shorter period of time before they have an idea what has been effected. Some of the residuals they are seeing are from the GBS and will take longer to heal. Don’t let him give up and also don’t you give up! He is really in the early stages of all this. He needs to have hope and don’t let them take that away from him. Depression is part of the recovery of GBS that is all common and meds can be given along with verbal help to understand. Make a big deal out of any progress! He will be worn out from the fatigue from GBS. They will have to work him in rehab to over come what damage has been done by the stroke and he will have to relearn to do many things from both illnesses. They will have to watch him to make sure they don’t exhaust him and make the GBS kick back up, but also they have to learn now much rehab he can take with the stroke to make any gains. Gains from the stroke might be also compromised by the GBS because the muscle is not getting the message thru the nerve…that movement will help with the memory of the muscle. Once the sheath of the nerve heals he will get more and more of his movement back from the GBS….with a stroke they would have stopped with rehab much quicker thinking it was permanent damage. I hope this has made sense and it has helped. He will get much better from the GBS! I seen my husband come back quickly from a stroke and he has watched me struggle with the GBS. We now have grown closer as a couple. More patient with each other! Don’t forget age is tapping at the door and telling us to slow down too. Some of those younger people on here bounced back quicker. Take all conditions into consideration! Tell him to enjoy the journey…we have learned to listen to our bodies and end up learning more about our bodies thru this whole process. Start by working those face mucles and flash each other a smile…..it will mean so much to both of you! 🙂

Hi Dreamseeker….just a thought after reading your post and that your spouse is no longer on the vent. Have they checked y blood gasses? Disorentation, psychosis, hallucinations etc., are often the result of an infectious process or too much carbon dioxide in the blood. Make sure your spouse’s doctors check out each of these if the mental confusion is still there. From experience with my mom when my mom came off the vent. She could pull in enough oxygen but wasn’t strong enough to push out enough carbon dioxide. Sometimes coming off the vent everyone focuses on the oxygen but doesn’t check the carbon dioxide. She was steadily building up CO2 and became very psychotic. Too much CO2 = mental confusion. They check the blood gasses by drawing blood from an artery, not from a vein. Hope you guys are doing better. Hang in there.
Katy

Hi Dreamseeker. My response above was made to your post about delirium. Then after I posted it, I realized there was another whole page of posts and your question was an older one. Please forgive me my own lapse in mental status! Thinking of you and hoping you’ve had a good day today.
Katy

Wow!!
What an amazing journey, I am so happy to hear what great progress your husband has made. How amazing that you have been by his side. Keep us posted on the continued progress!

Best wishes!
Dawn Kevies mom