My husband, John, has been paralyzed from the top of his head to the tips of his toes for three years since right after his 60th. birthday. His paralysis came on suddenly (all in one day). It was diagnosed as Guillaine-Barre Syndrome. At first the doctors were very positive that he would recover, but now they don't think so. He couldn't do anything except move his eye balls for nearly a year - not even breathe or eat or close his mouth or eyes. Now, three years later, he has regained the ability to breathe off the vent for part of the day, to close his eyes and mouth, to speak with effort because his mouth and tongue and face are still partially paralyzed, and to move his head enough so that he can control a motorized wheelchair with slight head movements. He lives in a rehabilitation hospital 50 miles away. We have been married 40 years and have no children and very little other family. There is no use of his hands, arms, legs or feet. He passed a swallow test this year and is allowed to have thickened liquids for recreation, but it takes great effort for him to drink even 4 ounces of anything. He is now diabetic when he wasn't before. He now has a pace maker when his heart was good before. He has been incredibly brave, uncomplaining, and cheerful through these three years. He seems to still love and cling to life even though he admits that nearly everything he enjoyed and cared about has been taken from him by this illness. He sleeps a huge amount of the time, and doesn't seem to have any energy or initiative to do much at all except listen to music and sit outside watching the birds. I work full time and spend one day a week with him at the rehabilitation hospital where he lives which is 50 miles away. I call him every night and thanks to blue tooth technology, I can read to him over the phone for an hour or two each evening.

I feel cut off from him in many ways and think that there are many things we need to be informed about. I have a lot of anger that I'm trying to curb or channel into the right places to get more help for him. I'm hoping that this forum will give me some friends who understand a situation like this. I don't think that anyone who hasn't experienced this can fully understand.

I went to a counselor recommended by my physician and after two sessions she told me that I was the strongest person she has worked with and that I didn't need to come back unless I felt the need to talk. I did all the talking and she gave me no advice. She just said over and over again - "You poor, poor woman!" I felt like I got more help from friends than from this PhD I had paid $100 an hour. I don't feel like a terribly strong person My mind and heart are full of conflicts - love for John and anger toward him; satisfaction over how I have managed, and fear that I'm not managing well; helping him as much as I can and doing enough to keep myself content. I still often hate the time I spend at the hospital and come away totally exhausted. There are more bad days there than good ones. I can't differentiate between what is taking care of my needs and just plain selfishness on my part. I feel like I have lost my husband and yet still have him. He doesn’t look, smell, or sound the same. I am selfish enough to be discontented with a relationship that is almost all give from me and almost nothing back from him, yet I know in my heart that he is giving all he can. What he can give is a verbalized, "I love you" which he does at every opportunity.

I feel so alone in this.

Welcome. I haven't been here long and while I can't relate to your situation, I think you've found the right place. There are some great people around who always seem to have support to offer.

You really do have a lot going on right now that came on very suddenly and I can't imagine what it must feel like to try and take it in. Anger and feeling conflicted is understandable. I don't know. I do struggle a lot with the idea of taking care of myself, I think many people do. And the best I can tell you, is at the end of the day, if you are not looking out for you, you aren't going to be any position to be strong for someone else. If spending a full day feels like too much right now, don't feel guilty if you need to drop down to just a half day and take the other half just for you and do what you love. Try making little adjustments, even if it seems insignificant, like reading to your husband for an hour and then reading for yourself for an hour.

I think going to ac counselor was a good move, and I can't believe that counselor's remarks. There are probably plenty of good ones around, maybe even one that has met with other people going through something similar to what you are now. Shop around a little!

Anyway, welcome again.

Well I do not have personal experience with Guillaine-Barre Syndrome, however my BF went through it with his father.....unfortunately his father did not survive. BF says to hang in there & recommended a web-site that you might find more helpful than ours (not that I'm trying to discourage you from ours in any way). Guillaine-Barre Syndrome is a devastating illness & it leaves in it's wake many destroyed lives; no you are not selfish for missing the way life used to be. Those of us who suffer from paralysis or other major disability and/or illness are not always able to do as many things to "help out", & yes unfortunately the AB partner/family/friend does have to hold up an unusually large end of things......however I think that the majority of us who are on the opposite end of that; not a day goes by that we don't count our blessings that we're still loved & cared for. As an AB I'm sure he loved you with all his heart, but I'm fairly certain that the "little things" your one day a week together & reading to him over the phone are appreciated more now than ever. What we can sometimes do to show our love & gratitude to an outsider may seem very trivial, but those of us who are lucky enough to have a special someone to care for & love us despite everything.......we give back all that we can. An AB may be able to give 75% & come with 90, we may only be able to come up with 60.......but we gave 110% to do so. Hang in there. :hugs:

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BF recommends this site for GBS support.


Main page for GBS.org
http://www.gbs.org.uk/index2.shtml

GBS.ogr forum/message board
http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi


BF says that GBS is usually recoverable. And that the Dr.s are essentially playing a guessing game. His father had it as I said & his father ended up dying from "scerosis of the liver", not a drinker.......his kidneys went 1st then his liver. He says when you go to see hubby check his urine bag if it has any orange or brown tint to it then you need to get him checked ASAP. Also his father had intense pain whenever/where ever he was touched which BF said is a sign of GBS. BF said GBS eats away at the myelin sheath & this is what causes the excessive pain from head to toe......but that it usually will start to regenerate once the initial flare up of GBS starts to subside. BF would like to know if they used IVIG to treat your hubby.

Thank you Wheelie Bear and Ohio for your responses. I did know about the Guillaine-Barre sites but haven't managed to find anyone there with the same long term problems. Most of the people I found are either dealing with the initial stages of the disease and drop out when their partner gets better or the disease has not totally taken away their life and put them permanently in an institution. They were helpful initially with information about medications and treatments, but don't seem to be dealing with the things that come with long term total paralysis like bedsores, bladder spasms, pneumonia, lack of activity.

Is anyone here like me dealing with a partner who has to live in an institution because his care requirements are too skilled and around the clock? Also, John is a big guy - over 200 lbs. It takes more than one person to turn him and lift him. I couldn't even find an institution close to home who could manage John's cares. Everyone turned me down. I was told that only three places in our state can handle this level of long term vent care, and John's rehab. hospital has lots of patients who have come from neighboring states because there isn't anything comparable in their own state.

I can't retire and move closer to him. I'm too young and not financially able to do that yet.

Is everyone here able to use their arms? Do people post who are total quads? I don't even know your terminology or abbreviations. What is an AB? I did figure out that SCI is Spinal Cord Injury. John's spinal cord may not be broken and he may still have all his senses of touch, taste, smell, hearing and sight in tact, but there is practically nothing on his body that he can move at will. His mind doesn't seem to be affected except that he is so medicated that he needs to sleep a lot of the time. He beats the recreation lady at the hospital in strategy and reasoning games.

Sorry hun.

AB= Able Bodied
W/C= wheelchair
SCI= Spinal Cord Injury
TBI= Traumatic Brain Injury
On our forums these 4 are the ones I see pop up most often


http://www.apparelyzed.com/forums/index.php?showtopic=4462

Here ya go......this should help you out with most of the abbreviations.


There are a few quads but most of the quads who do post have some arm & hand function.......many of them can at least type with their thumbs.

As for lifting him my Mother works with a lady who is well over 300lbs., trust me my Mom may be able to lift my skinny butt up but she aint liftin' THAT lady up. There are lifts that can be bought to get him up. Being that he is still on vent part time most facilities can't take patients like that unfortunately. The one small point of light on that subject is that the facilities that are lower level of skilled care don't get checked on as regularly as do facilities that are connected to/affiliated with a particular hospital; that hospital wouldn't want IT'S name dragged through the mud with lousy care.

And the Dr.s ruled out EVERYTHING else? They're 100% sure it's GBS? Only reason I ask is because according to all the medical literature he should be getting better.

Sorry I can't be of more help to you.

Hi Birdy
Welcome, I hope you find some answers here, you will certainly find support and an outlet to vent. Good ;luck with everything, it sounds like you have a lot to cope with.
Take care
TrinX

Hey Birdy,

Welcome aboard, there are a lot of lovely, caring, supportive people here, hope you find some comfort as you work your way through your's and your husband's struggles. I have some good friends of mine, over 20yrs now, facing similar issues. He has C1 level functionality at this moment in time, due to polio, and has much the same functionality as you husband does.

Neither of my friends are members of Apparelyzed, but, if you would like to, send me a message with your email address or contact info, I will talk to them about your circumstances and see if they would be willing to start a conversation. Both of them are wonderful, strong, caring people and I'm sure you all could/would benefit from getting to know each other.

Be well, take care...

Jerry

8i know a gentlemen with the same infliction
its now a year he eats he can touch his nose which is amazing, he is getting there but his wife is very frazzled .. hard work but the recovery is there eventually .he is still in hospital and be a long time before home