Living Death, Purgatory, need information
AnonymousNovember 19, 2007 at 3:30 am
A year and a half ago on June 4, 2006, my husband went from being a very healthy, clean living active 60 year old farmer to total paralysis (top of head to tips of toes) on total life support in slightly less than 24 hours. He was building a duck pen at 10 a.m. and so paralyzed he couldn’t even close his eyes and mouth by 7 a.m. He had plasmaphoresis treatments several times followed by IVIG treatments as soon as he was diagnosed with GB during that first 24 hour period. Prior to the onset of this horror, he had been treated for an absessed tooth and had a 24 hour stomach flu.
It is now a year and a half later and he is living in a vent unit at a large rehabilitation hospital 50 miles from home. We used up a million dollars in health insurance in about ten months and now medicaid, after having us go through what was essentially a divorce division of property procedure without the actual divorce, has taken over the cost of his care.
After 10 1/2 months of being unable to speak, he very suddenly got back his ability to speak using a speaking valve. His speech is distorted because his tongue and mouth are still partially paralyzed. At the one year point, he started to breathe on his own enough that they began weaning him off the vent. Now, at a year and a half, he has progressed to the point where he on the vent only four hours each day. He hasn’t tasted food in all this time and still is being fed with a stomach tube. He can swallow but can’t manipulate food or liquids in his mouth well enough that aspiration is not a big danger.
He has gained back very little mobility anywhere on his body. He can now close his eyes and mouth but can barely open his mouth. He can move his head slightly – enough so that he can drive a wheelchair with head movements and use a head mouse to use the computer. He wears a pain patch and gets regular doses of neurotin so he sleeps a lot of the time and does not seem to have much concern about filling his time. He seldom watches television. He just seems content to go with the flow even though his mind seems to be alert and functioning. He used his programming and mechanical skills to assist an inventor in creating a much improved head mouse. He seems content to lie there and listen to music and likes to be read to. He seems to be stoic and peaceful most of the time and even still has a sense of humor. He jokes with his care givers, and usually thanks them. I read to him over the telephone at night. (He has a blue tooth). I spend my two days off from my full time job a week with him at the hospital. He says that he prays a lot. His spirituality has increased through this ordeal and mine has decreased. He is forgiving of those who have been cruel and neglectful, and I am angry as hell and daily wish terrible things would happen to them.
The neurologist who initially treated him has visited him in the hospital once at the end of the first six months. He has never given us any prognosis and I don’t know how to find out if John is likely to be in this condition for the remainder of his life or if there is any likelihood of improvement. I have lost all respect for doctors and pretty much lump them all into an “I hate your guts” category. I haven’t met one since this happened who seems to give a **** about anything except money. I even hold lawyers in higher regard.
I feel like we are in purgatory. We both say that we aren’t really living. We are just in a stage of waiting. Very often I wish that I could just quit existing rather than go on waiting like this for the rest of my life. There is no danger of my doing myself in because I would never abandon him to suffer alone like this, even though I now understand why some people do abandon loved ones in this condition and no longer feel judgmental toward them. We don’t have other family members.
I have now encountered two other people who were diagnosed with GB and seemed to have had fairly fast onset of the condition like my husband and who have had very little recovery after years have passed. One is a 28 year old man who has been as paralyzed as my husband now for 5 1/2 years and who also was a very healthy, active builder until this happened. Another is a much older, very obese woman. Is anyone gathering data about people who seem to get GB and then don’t recover. They just seem to remain totally paralyzed. My husband and the other young man now are having their joints freeze up because of continued bone growth so if the nerves ever started working again, they probably couldn’t move arms and legs again anyway. (Yes, they do have regularly scheduled physical and occupational range of motion therapy.)
I really wonder how many other people got this horror and just stayed totally paralyzed. Are there any medical people who are even remotely interested in this and are bothering to gather any data about it? Is there anyone out there qualified to give us a prognosis or to evaluate my husband’s progress or lack of progress? Is it possible that he doesn’t have GB since his history now seems so different than that of others who have had this. I never thought I would envy people who had spinal injuries and became quadriplegics, but there are a lot of them living in the hospital where my husband is, and they have a much better quality of life. At least they can breath, eat and talk. They all seem to have a great deal more mobility and less pain. He seems to have more in common with the advanced ALS patients except that he seems to be very slowly improving slightly over time rather than deteorating. It’s just that at his present rate of improvement, we will be dead or 100 years old before he improves enough to have any kind of decent quality of life back.
AnonymousNovember 19, 2007 at 4:12 am
I just got through reading this, and feel horribly for your “situation”.
I don’t know what to say, except, to please try to obtain and sustain a
“positive outlook” for your husband’s recovery. Even tho everything seems
bleak, recovery from GBS is a slow, evolving process, and it has only been
a year and a half since the onset……………….people have continued to improve over years and years of this.
I realize that being a “caregiver” is harder than being the “patient”, but you
have demonstrated your amazing strength already………please don’t give up.
Things DO have a way of “working out” 🙂
AnonymousNovember 19, 2007 at 8:10 am
no doubt john has one of the toughest cases of gbs i have heard of & i’ve heard of near 2,000. although i can’t be sure, this does sound like gbs. as you know, you do not recover from als & the average life span of an alser is 4 years from dx. no matter what neurological prob he has, time is the greatest healer. as long as you see him improve, as slo as it is, he will continue to make progress. i think & hope you can see that his attitude is better as it is rather than he being upset over it. john is an amazing person to be able to accept his condition.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousNovember 19, 2007 at 8:21 am
I feel your anger and hurt. This is good to let it out instead of holding it in.I agree with you about 60% of the doctors. They are usless and are not doctors as they only care about the $.
I got GBS after a flu shot and I was blessed as in 3 months I was walking again. I am praying for you and your husband and will every day from now own.
As I read your letter I saw postive things starting to happen to him. He is starting the healing process and it is slow. (GBS–getting better slowley)In my beliefs there is a reason for every thing that happens in our life. Your husband has become spirtual and forgiveing.I was angery and hurt and wanted to give up. but I accepted it and made up my mind I was going to get better and my caregiver did the same and she praised me every day for something new I could do no matter how small it to me was a blessing.
You will find out that almost everyone here is very postive and loveing. They have walked the path and felt the pain and suffering.
One thing I have learned is how people feel about the handycapped. so many do not want a thing to do with us. few offering to open a door for someone in a wheelchair or a walker. many looking away thinking that you are not there. Yes I saw this and all I did was smile at them and silentley said a prayer for them.
Your husband is not being punished. My God doesn’t punish his children. I do see you being guided to accept what is happening. and to let it go and let God. We heal one day at a time. The care giver is the angel from God to read to us to do for us now till we are able to do it ourselves.
My feelings are you should fire his Neuroligist and demand someone that knows what GBS is and how to treat it and someone that has feelings.Someone here may be close to you and can put you in touch with a careing doctor.
Above all this is the place to vent your anger and pain. We are loveing careing people and we have walked the path ahead of your husband. We in most cases know more than doctors. You may not like some of the replys but we give love and the truth.I see a big blessing in your letter. Your husband is starting to improve and you are a loveing giveing wife. May Gods blessings be with you’ll. Your friend (Steve)
AnonymousNovember 19, 2007 at 11:03 am
I am so sorry for your pain and suffering. I can’t imagine how difficult this is for you to endure. I am glad you found this site. Please contact this foundation for more information so that you can get a local contact person to help you and your husband. Someone can even come to see you at the hospital depending on where you live. Get as much information as you can by going to the website here and stay in touch on this forum. There is tons of support, experience and true compassion. Tell your husband about this site too so he can read and get hope/friendship.
All my best,
AnonymousNovember 19, 2007 at 1:25 pm
I also am very sorry to read of your frustration and I suppose anger too at the entire situation. One of the things you said though struck home with me, and it is that you are waiting for things to get better so you can move on with your life. On a daily basis, I did the same thing, and for months. Every day wake up to see what has changed, what got better, most of the time nothing, and then be frustrated. I was playing the waiting game before I could move on with my life. Now 8 months later and counting, I am not waiting anymore. I am choosing to live my life as I am right now. I walk with a cane, not very far, can’t do a lot of what I used to do, BUT I am focusing on what I can do, today, and moving forward. If I get better great, but I will not have wasted my time waiting for something that may or may not happen. It took me a LONG time to get to this point, but you know what? I feel better about my situation. There area many patients in your husbands predicament who start planning their life as it is now. GBS is a very slow process for healing, and no one can predict how far he will come. But I would sit down today and plan your lives as they are right now, and if things get better, I’m sure you can squeeze that in as well. I hope this all came across correctly so you understand what I am saying…..Gabrielle
AnonymousNovember 19, 2007 at 2:05 pm
This is just another example what our precious caregivers go thru. Please don’t feel bad about coming here to vent. By asking questions that is how we get suggestions to make things better. All the gadgets that are available for the patients now are amazing and as your husband recovers he will be able to use more and more of these items. I agree with the others that once the GBS starts to reverse and the healing process starts it is a slow road and patience is a virtue! I have talked to several people that post here that are slower in recovering. As you know everyone is different. The sheath of the nerves grow at a very slow rate each day and that process takes years to completely reach the longer nerves in the arms and legs. At this stage your husbands body is still leaking energy out into the muscles and causing fatigue. This can be mistaken for not caring or giving up or he/she has a bad attitude. From what you have mentioned it just sounds like frustration is present but he is trying to keep possitive and that his sense of humor will help greatly. I don’t remember reading if he has had nerve conduction test and biopsy but that would be a good indication of what is going on in his body also. Physical and Occupational Therapy should be continued to be given and just be geared to his body and movement to keep things moving. Making sure they don’t over do it and set him back. Rehab is a very slow process and I am still working on areas that are slow healing. I have talked to a GBS patient that lives close to me and he is in a very similar condition to your husband and has not given up on his body. Amazingly he is still showing signs of improvement after 16 years. Now he can actually crawl up the stairs to the second floor. He is able to conduct his business from him home and just paces himself. So be patient you are still in the early stages of this illness and others have been in wheel chairs after long stays in the hospital and now up and walking with a walker/frame/rollator. Some have actually weaned themselves off of the cane. No doctor can tell you how bad it will get or how long it will take or how much damage will be done. As his caregiver you need to take care of yourself. Stress can do a number on our caregivers and they do too much trying to do their jobs and our jobs and hold up the world. Sounds like now he has things under control and is just waiting to see improvements. He is adjusting and taking advantage of good days and settling into a routine. Don’t take on too much responsibility and pace yourself so we don’t have to worry about you becoming ill. Communication between the Doctors and Rehab and his needs and your needs should be addressed. Anything we can do to help you to make it easier let us know. I am sure there are liason in your area that can call you or may be able to visit with you and give support. Till then you have your extended family here. You can send me a private message and I can call you if you would like. That little bit that one of us can do to help get you thru another day would make us feel good! Remember we have all been there in one way or another.
November 19, 2007 at 2:24 pm
I became paralyzed within 24 hrs just as your husband. I was in a hosptial for about 6 months and when I got home I was still totally paralyzed. I was fortunate to be able to hire live-in caregivers to help. It has been four years and I am still recovering. I think that your husband is a wonderful man and is taking it all very well. I did it in a similar way and always with a smile on my face. Care givers respond to kindness as well. They have a hard job and being nice to them will be rewarded with them being nice back to him. Getting angry for being in this situation will not change anything except make life more difficult for you. This experience has brought my wife and I closer together and although I am still in a wheelchair, we enjoy life…not in a same way as before but I believe in a more meaningful way.
This is life and you must accept it and live with it. Your husband will get better slowly I am sure…but in the meantime continue to live your life the best you can without anger and with love for him. I have gone through exactly the same symptoms and recovery in the hospital that he is. At one time I just wanted a drink of cool glass of water and if I died after that I was ready. I failed my first swallow test and that was demoralizing, but 3 weeks later I passed it and couple of moths later I had that cool glass of water and it was glorious. He will get there and he will appreciate life more than ever before. He will appreciate every breath, every drink and every step he takes. Be there next to him and share in these glorious moments that he and you will experience.
During this time of recovery, I have cried many times, not because I feel sorry for myself but more out of frustration and desire to get better. The recovery is coming very slowly but in the meantime I have become more well-rounded by having read many, many books even when others had to change pages for me. I think I am a better person for having this experience. Thank God that he is still alive and that his mind is OK.
I agree with you. the doctors, except for the initial treatments (PE, IVIG and treache (sp?) ) did nothing for me. Please read my article that was attached to the posting “Could testosterone be the cure for GBS”. If you could find a doctor to give your husband an ijection of testosterone, I believe it will help him just as it did Bob.
Your husband’s good mental attitude and your support will get you through this but it will not be easy. Accept it and just live. Make the best of the bad situation. Show your love for your husband and tell him and yourself that all will OK with time…and it will. And please do not turn away from God for only with his help will both of you get through this.
May God bless you and your husband. My thoughts and prayers are with you.
AnonymousNovember 19, 2007 at 3:03 pm
Since coming to this forum IMO John your husband has a real bad case of gbs. When it hit me it was quick but I was not down in 24 hrs it took three days to put me on my back in ccu. I had a good experience with the docs and caregivers. Recovery for me was fast but I do not think it will ever be complete recovery. Still got alot of problems with strength and my legs. I will keep you and your husband John in my prayers. I am sorry for your anger at the med field but in this disease I don’t think the docs know much about it. MY first nuro was a joke but I got a good one now that does seem to have some understanding of the disease. I know one thing about it is to never listen to someone who says he will be this way the rest of his life they just don’t know. Watch for the little improvements in John and praise him for them.
Acute onset March 2007
AnonymousNovember 20, 2007 at 11:35 am
I had a very severe case of CIDP, so I know a little of where your husband is coming from. I needed total care, was inpatient in 3 hospitals for 3 months,& my husband took 3 months off of work under FMLA for 3 months to take care of me. Then it was my mother who moved in with us for 9 months until my youngest son graduated from college & took care of me during the day (he worked after noons.) How I hated losing control of my life; your husband’s attitude is much better than mine was.
I don’t know what to tell you. Ironically, I have always envied people who had GBS & not a severe case of CIDP like I did, as they seemed to make better recoveries then I did. I don’t know if your husband will improve much more, I never knew that there were people with GBS who did not recover at least fairly well. But as most tell you above, you have to learn to live with your new norm. It might be horrible, but you have to deal with it, as you really have no choice. Another thing, this whole experience made me more religious, whereas my husband turned away from God as you did. It must be harder watching someone go through this than I realized. I am just so sorry for your situation, I don’t really know what to say. We are always here for you, if that helps at all.
AnonymousNovember 20, 2007 at 8:59 pm
responded before me and those who will after me-all of us know and have learned how fragile we can become.
We each have been ‘hit’ by this immune thing is ways we learn make us either fragile and/or tough. Often both in that we fight it to the best of our abilities. Most frightening is the ‘dealing with the docs’….they sure don’t tell you much do they? Not near enough of what you want and need to know, when you think you need to know it….often what information we are given, is either too little/late or not in chunks we can take in at that particular time.
I have found that learning as much as I can about GBS & CIDP has been my own defense to challenge doctors to get up and do their own homework and get busy! The learning has helped me understand and cope with all the frustrations that come with this territory, then deal with it as best I can.
As for recovery, there are soo many variables with each of our recoveries, and the degrees we recover.
Sometimes I feel it’s like buying lottery tickets? When you buy, there is the hope, if you don’t win? There’s always the next time….in our case, it means tomorrow, and the day after, and the next one. These days are precious as it means we still have our gift of life to live the best ways we can. Share your love with your husband, it is hard to sort all this all out – I know! Have you talked to John’s doctor about your own stresses thru all this? You might benefit in the talking to not only those here, but to others in situations similar in your area. [You would be surprised that there are others-there are]
As for prognosis? Get copies of all John’s medical records and send them to someplace, such as Mayo or Hopkins for a ‘second opinion consulatation’. It might cost dearly, but it also could add insight into possible future therapies and treatments. That other opinion could also be cheaper in the long run, as docs are notorious for being ‘super cautious’ with GBS and CIDP.
I suspect I am not speaking for myself only here, it’s like life has taken the rug out from under your feet! One day you are going thru it all, the next WHUMP! You have a heck of a serious problem….no warning no nothing.
My heart and my hope are with you both.
AnonymousNovember 22, 2007 at 9:24 pm
I have read your post numerous times.My heart aches each time. My husband has GBS, although not nearly as severe as your husband. I wish I could tell you something that would be more encouraging. I have had many of the same feelings.I wonder to myself if things will ever get back to near normal, it seems as our life has come to a standstill and everyone else is going on with theirs. Going through this has made us more spiritual.I honestly don’t believe we could have made it this far without the support and prayers from our church, family and friends. It is a very terrible thing for anyone to have to go through. Please hold on, time will only tell.
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