update on my dad

    • Anonymous
      August 11, 2007 at 9:27 am

      Hi Everyone,

      Well, it’s been almost 4 months now since diagnosed with GBS/ Miller Fisher. He had about almost 3 months in hospital and then moved to a convelescent hospital. In the last 4 weeks he has been dehydrated twice and this time it was so bad that he is back in the hospital. He still has his feeding tube, and has a trach to keep the airway open because of the excessive phlem in his throat/ chest. He has been able to eat a few spoonfulls of soft foods and then he says it’s too hard. His physical strength is coming back faster than the eyes and swallowing. Any advice of what to ask doctors about progress and the plan of care? Is this normal? He keeps having these setbacks and it is taking a toll on his body. He is only 64. Again any responses would be great.

      Thanks, Worried daughter

    • Anonymous
      August 11, 2007 at 2:22 pm

      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.

Update on my Dad

    • Anonymous
      October 22, 2006 at 11:39 am

      Hi, everyone:

      Well, after driving for 1700 KM (over 1000 miles) round trip yesterday, I was only able to see my Dad for about 45 mins. He was tired, frustrated and upset. On the bright side, he is able to attempt ‘mouthing’ words as he still has a trach and can’t speak. Today marks 10 weeks. He is still unable to move anything below his neck. He can move his head side to side and up and down about an inch though. His eye were fierce and angry and it was hard to see him upset like that.

      Is there someone on the forum here who had this level of paralysis from GBS/CIDP and has come back? It would be so good to be able to give my Dad the news that I know of someone who has been where he is at 10 weeks in and still very much in need of the ventilator and unable to move.

      He has a bedsore on his tailbone now and it’s hurting him. The nurses reposition him every couple of hours. Not knowing what a GBS person feels as the nerves rebuild, I am blind and feel like an infant to this disease. What does it feel like? Do you have ‘pins and needles’ all over or is it a different sensation? I need so much to try to understand what it is my Dad is feeling. Does it hurt a GBS person to touch them? I laid my head on his chest and it looked like it hurt him. I am so scared of causing him more pain but at the same time I need to touch him and hold him.

      So I guess this was one of the low days. When I go up in 2 weeks, hopefully it will be an ‘up’ day.

      I am so glad that I have this forum to express in now. Even after writing this it feels like I have let it all out and I feel lighter for it. Thank you.


    • Anonymous
      October 22, 2006 at 3:41 pm

      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.

    • Anonymous
      October 22, 2006 at 9:58 pm

      Hi, Osborn:

      Thank you so much. Yoou know, you read my mind. I thought about that on the way home that maybe I am causing my Dad more stress from him knowing how far I have to come to see him. That is the last thing I want to do. I am going to ask the nurses the next time I am up there if there is a portable phone and then I can call him and tell him I love him. Winter is setting in here and soon the roads will make going to see him impossible for about 3 or 4 months so I will go one more time and then Mother Nature will keep me home for awhile.

      I am off to eat some dinner and hang out with my son. Have a good night!


    • Anonymous
      October 23, 2006 at 1:10 pm

      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,
      Husband CIDP May 05

    • Anonymous
      October 24, 2006 at 12:14 am

      Hi, Wendy:

      Thank you so much for the thoughtful response. You so very well state exactly my concerns. My dad is my best friend. I am 40 years old and for many years he and I didn’t see eye to eye and we didn’t speak at all for almost 10 years. Then about 15 years ago, he called me and asked me if I was still ‘pissed’ at him and I had to laugh because I couldn’t remember why I was mad. We fixed the fences and have been best of friends ever since. My dad is my rock. He and I hunt and fish and hang out. To see my strong, handsome, loving and proud father helpless and dependant on those around him, even to just comb his hair, as all of you know is heartbreaking. Having you all here is exactly what the doctor ordered. I told my dad when I was there that I had found a group of new friends that were able to understand both his side as well as mine as a family member of a GBS patient. That made his eyes smile which made me feel better. I know patience is key. It really is hard though.

      You have no idea how much I needed to read your note Wendy. Thank you.