Worried Daughter, Great Advocate! Don’t be afraid to ask questions but remember they can only guess on the timeline he will need since everyone’s recovery is different. He will slowly increase strengh as the nerves heal and the muscle increase in strenght. (slow process~horribly slow) First with GBS there is a mental fog that keeps you from remembering to do things that seem normal routine. For him drinking could be one of them. Getting containers open and handling something even under a pound could be painful and too heavy to control. Does he have a sippie cup with two handles that they can put on his bed table? Some of us have had trouble with the pain in the wrists that feels like carple tunnel and I can tell you it hurts and keeps you awake! Think twice if they want to operate on it. It does get better in a few months as those nerves are less inflamed. Also, having MF might have effected his eye site that pouring water from his pitcher to his glass is difficult. With the feeding tube they should be flushing it several times a day and that is a good way to get fluids into him. Having problems traveling to the bathroom will make a person take in less fluids, resulting in fewer trips but dehydration. As far as swallowing he should be seeing a speech therapist to monitor the swallowing strenght. Remember swallowing, chewing all zap strenght at first until those muscles get stronger. He would be also careful of vomiting so food is not caught in the lung and result in pneumonia. The phelm will continue until the trache is removed. Both the feeding tube and the trache are left in usually longer than usual because a patient can back slide after exercise. They will as a precaution leave them in rather than risk more surgery to put them back in. They can give breathing treatments to break up some of that phlem. Also they can suction him for a plug but they try to let the patient clear those themselves to gain strenght. Once the throat muscles get stronger he will be able to clear his throat too! Even now we all have residuals from doing too much and not listening to our bodies. I am still seeing an Neuro Optomaligest for my eyes. They keep checking the periphal vision and the field of vision. Mine is still getting better 22 months after onset. Sounds like he is doing really good. Stay possitive and remember GBS also stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. Hopefully he will be able to post messages here for himself. Please tell him we are thinking about him and his family.

I know you are worn out with the trip and I am so sorry to hear of your Dad and his fight with GBS. It is a fight to survive and sounds like he got hit very hard. I had a mild case in April of 2006 and its been 6 months and I measure it now in months. I am 70 years old so I can identify some with your father. As far as pain goes, with me it is constant, but not sharp pain that makes you scream out. It is hard to explain to someone who has not experienced this condition. Your father will eventually come out the other side, but it will be slow and hard on everyone. That is one thing that is common about this disease and always the same. It affects everyone in the family. I take 3000 mgs daily of neurotin but it does not completely take the hurt away. Weakness in the arms and legs is my biggest problem now, but your father is a long way from being to that point yet.
With me, I did not want anyone but my wife to visit when I was in the hosp. and even when I went home, I did not want visitors or even my kids for awhile. It took energy to even think and I did not seem to have enough to even talk. It might be as well to let your father know you love him and are praying for him in some way other then driving all that way to see him. He knows the burden of that for you and that hurts him as well as the pain of GBS. These are just my thoughts after reading you report. I hurt for you and your family and I hope you will keep us advised of your fathers progress. Much Love. Osborn ellijay Ga.

Hi Renrose

I used to tell my husband about some of the posts on this forum. I would print them out and read them to him.

I can appreciate the emotions you’re feeling. When I would touch my husband he would signal no. I guess he would have heat sensations where I would touch him. It was hard as a loved one to understand because I just wanted to touch him. After that I would try to remember to ask him if it was okay to touch him.

It was also very hard to communicate with my husband. At times he was completely locked in. Also as he wasn’t very good at mouthing words. He would just talk in a sentence so he was pretty hard to understand.

He was depressed and at times didn’t want visitors other than myself… and even then… sometimes he really just wanted/needed his nurses. It was tough to understand. His night nurse was great and would spend time talking with me, giving me updates in the evening. They would always tell him I called.

I hope the next time you go up he has an ‘up’ day too. Maybe if you’re not going to see him for awhile you could leave a picture of you if you haven’t already.

Take care,
Wendy
Husband CIDP May 05