Help! Information needed!!!!
AnonymousFebruary 22, 2010 at 2:17 pm
My husband was diagnosed with GBS Jan 25th of this year. This was after having gall bladder surgery on 12/30 and collapsing 1/12 with pneumonia (14 days in hospital). He said that while laying in the ER, he could feel the numbness spreading from his toes on up to his waist. It never got any higher than that (Thank God)! However, he has SO much going on with him, that no one paid any attention to the fact that he couldn’t walk. I’ll be nice and say he is an “alpha male” and not one to complain much. So we did request a neuro consult in the hospital 2 days before we left and they did the nerve test (which came back normal). Don’t get me started on the neuro doc (whose bill WILL NOT be paid by me when it arrives in my mailbox) because he did not ever even bother to show back up to speak with us and hubby was released the next day. 2 days later at a doctor’s appointment that we had had for a long time (sickle cell anemia) – this doctor was highly CONCERNED about my husband’s extremely awkward and difficulty walking. So we end up with an MRI ordered. Next day he is back into a different hospital for a spinal tap….ergo, GBS diagnosis. He did the IVIG for 5 days.
So we are supposed to see the neuro in about a month (for the first time since the hospital) and we have called to set up physical therapy at home. We have no prescriptions relating to the GBS whatsoever. I see threads talking about different sorts of medicines ad wonder if maybe any of that would help. I will ask the neuro when we see him. We do have an appt. to see the regular doctor this week for depression meds. Hubby was not thrilled that I called her today, but that is what he gets for admitting that this illness is truly upsetting him!:D In fact, I want one for myself as well. This is a horrible illness and I feel terribly for everyone here that has had it or is dealing with it.
My main concerns at this point are: I want to know if anyone has any ideas on how to make my husband feel better about this illness. He is not getting better quickly. It is limited to his lower body, but the numbness and tingling is making him CRAZY. He doesn’t sleep, can’t sit up in a chair for very long, can’t walk unaided (cane/walker) and can’t walk far with either. Exhausted and out of breath from a shower. I thought about it and I realized that he probably spends 23 hours a day in the bed. He is miserable in the bed, but worse out of it (if that makes any sense!). We have 2 children (10 and 4) and I am trying to study for the CPA exam and work full time. How do I make him feel less guilty about all of this???? I know that I am overworked and stressed out and so does he, but I have NEVER ever mentioned it. My only concession is that once I finally crawl in the bed – I am dead to the world! So I really hate it that he can’t sleep!
I have seen reading these posts that recovery varies, time lines vary, etc. So I understand that nothing is going to happen quickly anyway, but if anyone out there has any suggestions for things that I can do to make him feel better about this, I would dearly appreciate it. He feels helpless and non-contibutative. I can’t seem to make him understand that I am a big girl and can handle bringing home the bacon, frying it up in a pan, housework, kids, laundry, studying, nursemaid, hmmm…..list getting a bit long. Thank God it is not time for yard work – I can do it, but I HATE it! I am just lost as to what to do for my loved one, when I am not the one in the middle of this crisis. Thanks for letting me ramble one!
AnonymousFebruary 22, 2010 at 2:35 pm
Lost Wife –
I am glad you found this place. Keep reading previous posts & maybe you will gain useful knowledge.
I hope that some of out “male” members can share ideas about what a man feels is important in care and the type of information he needs to help in his recovery.
I know that he is mad and confused ~ normal for any human that has to tolorate this condition.
You, personally, need an escape valve for letting off steam and this is just the spot.
Good luck to you. Your journey is only started.
February 22, 2010 at 3:03 pm
Hi Lost Wife,
I am a lost mom!! Have they given him any pain meds? Neurotnin is used for nerve pain as well as Lyrica. Some take both. He may have trouble sleeping as well, so watch for that. A wise old man on the site called gbs getting better slowly. As you mentioned, it is different for everyone. Patients on your part will be big and accepting help on his part will be huge. Besides those two drugs is an anti-depressant that some on the site take. Some like it others don’t. It is cymbalta, it helps w/depression anxiety and pain. Good luck. Others will be on to help. If family mambers,friends offer help, take it, don’t try to do everything, it will burn you out fast. That was my mistake! One of many that I made.
By the way, there are many stages to this disease that you both have to go through, denial, acceptance etc. Some steps are easier to get through than others. Just a thought, would he be receptive to a power scooter once he is able, maybe it would make him feel more independent?
AnonymousFebruary 22, 2010 at 3:50 pm
I know the fears that you are experiencing. I came home 5 weeks ago with little knowledge of GPS, no medication to speak of, could shuffle with a walker, couldn’t hold a fork etc. 5 weeks later, most of the feeling in my hands have returned, I am walking with a cane, sleeping through the night, still learning what I can and can not do. It was and is a scary roller coaster. I have sent you a private email with my phone, call if you want to talk.
AnonymousFebruary 22, 2010 at 4:12 pm
I am a “new” member with mild GBS, but I just wanted to tell you to come on here with any questions or concerns that you have. People have been very helpful and supportive to me. I have even talked with people on the phone. There are local chapters with contacts that you can talk to and they might even visit with you.
This is a very unique situation that noone else can relate to except the people on this forum. Family and friends can only help out so much. All of these people have a wealth of knowledge and experience. Everyone is affected differently so we don’t all have the same experience, but just knowing that you are not alone helps. Make sure you take some time for yourself too so that you don’t get run down. From my observations on here and personally, you have to have patience….things do get better, very slowly. You might not even notice a change sometimes. Things fluctuate daily, even hourly. Good luck!!
AnonymousFebruary 22, 2010 at 4:17 pm
I really can’t add much to what others have written, but patience will definitely be something you’ll both need. Your husband will need it as he adjusts to doing things differently or not doing them for a while; you’ll need it to deal with his frustration of having to lean on you and give his “alpha” side a bit of a break. 🙂
You guys are in my prayers.
AnonymousFebruary 22, 2010 at 5:17 pm
I appreciate all of your posts. And I should have also mentioned that I really appreciate this website and the fact that you guys have put out your thoughts and feelings about all of this for others to share, because it is truly a blessing to know how others are dealing with this.
I know that I have got to calm my nerves some and know that only time will help, but I swear, everyone is driving me crazy! LOL, we have had a grand total of 2 people to visit the house since he came home and the only offers of help that I have had were of babysitting for my girls. Not to be a “whiny B”, but when my mom made some thoughtless comment – I just exploded with “what part of he is partially paralyzed do you not understand???” This is a highly unheard of illness and people just don’t seem to have any idea of the recovery time for it. People ask about him at work and all I can say is that he is OK. I mean, (what can I say that doesn’t involve a long discussion?) he is alive, but stuck in the bed (which is crippling to his manhood and his frustration is through the roof with the way his body has betrayed him <-- and that is exactly how he sees it - as a betrayal). Patience is a virtue that I promise to practice! :O) On an unrelated note: he seems to think that a heating pad makes the numbness more tolerable (not gone, just less irritating). Since we have yet to be seen by a neuro, is this OK to do or is it bad?? I never heard of anyone talking about a heating pad.
AnonymousFebruary 22, 2010 at 5:52 pm
I was told to try both heating and ice by both my nuero and family doctor. do what works but be careful of falling asleep on a heating pad may not be safe. I have used a couple of old socks fulled with raw rice, put them in the mirco wave for a couple of minutes and they stay warm for a long time. again call if you would like to talk
AnonymousFebruary 22, 2010 at 6:02 pm
I am over two years with GBS and your post reminded me of how bad the numbness and tingling was. Lyrica and depression medication helped me survive the numbness and tingling.
Ask family doctor if they can prescribe lyrica or neurontin for him along with a sleep aid and medication for depression.
Sleeping with a pillow between the legs helps relieve some of the heavy feeling that some get with GBS.
Your husbands body has been through an ordeal with gall bladder surgery, pneumonia and the shock of getting GBS. He needs all the rest he can get now but he also needs to be able to sleep.
Take care of yourself, you have a lot going on, get all the help you can from family and friends.
Your family will be in my prayers.
AnonymousFebruary 23, 2010 at 12:10 am
I am glad you have found this site. The people are wonderful and can offer help. I use a rice bag heated in the microwave to help with numbness and pain…be careful it isn’t too hot!
I wonder if your hubby could come on the site. This way he will see that he is not alone and that there are things that might help him. Such as medications and treatments such as IVIG.
There are spport groups in some areas. If you contact the GBS/CIDP organization they can tell you where support groups are located.
You need to take time to look after yourself so you don’t burn out.
Try to cut corners while cooking, buy ready made foods, make double batches and freeze half for another day.
Do you have any friends or family that can help by preparing meals on days you are very busy?
Keep up the good work, your hubby is lucky to have a loving wife,
Rhonda from Canada
AnonymousFebruary 23, 2010 at 9:15 am
Your husband sounds like me. I was blessed as only my legs and feet were affected. I too started with a wheel chair and then a walker and finally a cane.
One thing I was told to do.FIGHT FIGHT the disease. Be thankful it was not worse as so many here really had it bad.I have to say this as I see it. Your husband needs TOUGH LOVE Stop the poor me.
Make him do things or at least try. Point out the millions who have to live in a wheelchair or walker or cane.As Dawn said he will heal but slowley.He can recover from this but liveing the POOR ME he will stay where he is. It is his choice. Either FIGHT IT AND HEAL OR SIT AND ROT.I am sorry for being so blunt but you are being used and you show it in your letter. You need rest and help and tell him there is not a pill that will heal him. He and God have to do the healing.I was walking again in 4 months>
Bless you and PLEASE think of yourself and share your pain and REST>
Love your friend (Lakoda)[/COLOR]
AnonymousFebruary 23, 2010 at 10:23 am
I just want to comment on the family and friends aspect. I too went through a frustrating situation with mine. They were supportive in the beginning, but then they don’t want to hear about it anymore. You may need to seek out some therapy, a professional. Don’t be afraid to ask for help. I didn’t and was trying to work, take care of 2 kids, and it was VERY difficult. I am not sure why I pushed myself. I think I didn’t really understand what was going on.
You have to learn to let things go, like the cleaning, etc. It is very hard to change your life, but you need to prioritize. Another thing a doctor told me is that the depression and anxiety is a physical symptom, ie. not because you have the physical symptoms you are depressed. I had anxiety attacks where I would pace around the room, cry three times a day, totally not normal for me. I have been on an upswing lately and in conjunction, the depression and anxiety have abated. It is incontrollable sometimes and related to the disease. That helped me to know that I wasn’t crazy, that there was an actual cause. Hope this helps you to understand how it is affecting your husband.
AnonymousFebruary 23, 2010 at 11:07 am
Your husbands GBS is so recent for both of you. Our intentions with advice is well meaning but can also be over whelming when you do not know which way to turn.
When you registered with the GBS/CIDP organization you should receive a packet in the mail with very helpful information. The Guillain-Barre Syndrome booklet has very useful information, including the different stages someone with GBS goes through that Dawn mentioned.
Good luck to you
AnonymousFebruary 23, 2010 at 12:51 pm
Hi Lost wife and welcome.
I would recommend your husband keep a journal up to date and write in there what he can and cant do. As far as you , do you have a church you belong to? Our church came out 2 times a week with a meal so my wife could at least get a break. Also they formed a group to come and rake my leafs for i live in the middle of the woods. They winterized my camper, put my plow on my truck , cleaned my chimney. I was truly blessed. Dont be afraid to ask your church if you have one.GBS is Getting better slowly and every day is a tiny bit better then the last.
AnonymousFebruary 23, 2010 at 2:18 pm
I think I must have been ranting a bit much! Mochacat said “Your husband needs TOUGH LOVE Stop the poor me.” Oh, this is not it at all. He is NOT having a pity party – like “oh woe is me”. He is SO upset about not being able to drive and get the girls from school, not being able to have dinner made for me when I get home (which he has tried several times – quickie things that he doesn’t have to stand over the stove for too long with), making me do all the shopping and running around. That’s why I said he was an “alpha male” – he is upset at not being able to do the things that he was doing and then watching me run around trying to do everything. He is more likely to say “I’ll do it myself” and fall on his face, then to whimper sadly and ask me to do it! Psst….and to the one who said let the housework slide – that has been the most fun part! lol
My original post was to really ask if there was any way to reassure him that it is OK. We have been married for 12 years. This is what marriage and love are – sickness and health. To me it is no big deal just make some adjustments to the way things get done. I just can’t seem to get him to see it my way. He wants to be the Man and take care of his family the way he was doing before and it hurts him not to be able to do it. He tries very hard though. We are both just a mess – he is worried because he doesn’t want me unhappy and I am worried because I know he is!
But please understand that while I was complaining and tired and frustrated with the lack of definitive information regarding GBS – my hubby really has been a sweetie! He asked me about 2-3 weeks ago, what would happen if he never recovered? I looked him dead in the face and told him “that the level of care that he was currently receiving would NOT be sustainable indefinitely!” :p
February 23, 2010 at 2:55 pm
I like your attitude! I chuckled at the last line!! Unfortunately, there is guilt on their part. My 13y/o, 9 at the time of dx, feels guilty all the time watching me do everything. He feels guilty about not helping w/the grass, snow etc. I can’t even imagine the guilt your husband must feel as he is the head of the family unlike my son. I guess the only thing to do is keep reminding him you don’t mind and tell him there might be days you are crabbly and he will just have to deal with it. Maybe he could come on the site and hook up with one of the guys. Steve, Mocha cat is a nice guy, or Norb, he has alot of help from his wife. I bet he could relate to your husband from a male perspective.
Just make up an inside joke every time you see he is feeling bad about you doing stuff, I don’t know…maybe tell him when he gets better he is takling you on the vacation of your dreams or he will have to pick up dog poop from the yard and clean all of the toilets for life when he gets better. Something silly and stupid to make you both chuckle. It will get better for both of you, it just takes patience!
AnonymousFebruary 23, 2010 at 3:45 pm
You need to tell a doctor what you have told us on this forum. You need to make an appointment for your self as well, and tell Dr. just how you feel. Hubby can use some of his frustrations of seeing others come and go and here he stays in bed 23/7. He can never give up hope and he must get it in his mind that he will not always be in bed 23/7. Getting out of bed was the biggest motivator for me, and I never gave up, and too this day I have not given up. He has plenty of reasons to fight for now and it is the 2 little girls and a loving hard working wife. Wife, please take a day off and go see a DR. for yourself…it will be a big help you you and your Hubby.
Love and Prayers,
AnonymousFebruary 23, 2010 at 4:17 pm
When i came home from the hospital, I would try to do little things around the house to help out my wife, the love of my life and now my caregiver. I would get extremely frustrated at about 15 minutes into any chore. I have always been the cook at our house, we both work, and I enjoy cooking and am quite good at it. But I could not even concentrate on the simplest task. I felt bad having to relie on my wife for everything including bathing. We live in wisconsin and when she not only was taking care of me but had to shovel snow that was one of my breaking points. We since have hired a young man to do the shoveling. I am now after 5 weeks capable of cooking again and doing little chores. I can even get down to the basement (very carefully) and work on my wine making and some laundry. I now have about an hour of activity before needing just 10 to 15 minutes of down time before continuing. I can keep that pace now for about four hours. i am hoping that next week I willl return to work for a couple of hours per day and increase from there. I felt and still feel your husbands fears. I have asked my wife many time what would we do if I don’t get better and each time she says that we will deal with that if and when that occurs. In the majority of the GBS cases, he will get better maybe not all better but good enough. I worry about my job, health insurance, my gardens, vacations, visiting my grandchildren. These are all big things to worry about but number 1 is to get better first so that these things can happen. I sent you my phone number, when he is ready have him call mei if he would like to talk.
Hi … This is Harry’s wife, here. I just thought I’d put in a few words for you, too. One thing to tell your husband is that he’s not used to planning his life out several months into the future … like when we were pregnant! As women, we’re used to that sort of thing, and men aren’t. It took Harry awhile to realize that he maybe can’t do things right now, but he can see the improvement he’s making, and he can now see that the other things will improve, too. Maybe not as fast as he’d like, but it’s coming. His neurologist really did a good job of explaining that we have to wait for the inside healing to take place. While he feels good on the outside as feeling starts to come back, and he can walk better, he gets so tired because there is still all that nerve-healing that is going on inside. Harry noticed several times that when he felt particularly good and did extra things, he got super-tired, and it set him back about three days when he couldn’t do anything, and then he had to start over again. It’s a slow process; and that’s been the hardest thing to deal with. One person on this website said that GBS means get-better-slowly, and that really is true! So just keep telling him that it’s just one day at a time, and soon he will see improvement. One of your jobs is to hold him back and not let him do too much. I’ve had 37 years of practice, telling Harry what to do. Sometimes he even listens =-)
AnonymousFebruary 23, 2010 at 8:19 pm
I am sorry I came across so hard and cold in my last post. I know what it feels like going from normal to crippled in a blink.
I was told by my doctor I was going to heal. I had a choice.I could heal with excitement or heal with anger or hurt. I was told to look constanley for any improvement every day. At night I tried and tried to slide one foot over another. And in about 4 days I did.I told everyone.
At 1st I wanted to do my share at home and was told my share was to get well.
In therpy when I was told I had done enough of an exersise and I had not done good I would say NO I want to try it again.My therpist was very hard with me as I told him when we met not to patronize me.
It has been over 2 years and numbness is still in my feet. not like it was, I drove my car when I was useing a walker.One day at a time and faith within yourself you can and will do this. ONE DAY AT A TIME.
I walked in 4 months and so will you. I put so much faith in the Great One and WE did it together. I am with you in prayer and faith. Your friend (Lakoda)[/COLOR][/SIZE]
AnonymousFebruary 24, 2010 at 5:47 am
Welcome to both of you. You really have gotten some great advice about dealing with the physical and mental storm that your husband is in with this disease. I would like predominantly to emphasize the “getting better slowly” part and say that it is important, as others mention, to hang on, to note the slow progess that gets made, and to readjust approach to life. There are still a lot of things that your husband can do if you both help to be creative about breaking things into little steps and look to emphasize what is possible now. For example, instead of running around in the kitchen, it sometimes is easier to sit at the table and work on part of dinner. Reading and helping the kids with homework. Start a special “daddy time routine”–it will help him and them cope with the changes in life.
One of the best things I did was get a really comfy lounge chair so that I was out of bed and yet able to be comfortable in the den.
It is really, really hard to live with a lot of pain. If your husband has sickle cell disease, you both know this. A lot of the medicines mentioned can help. Cymbalta is good for the pain and tingling. Neurontin/gabapentin is a tried and true treatment for pain. You have to start this medicine slowly because it can make you really sleepy. A newer form of neurontin is Lyrica and a number of people tolerate it better. Elavil is an “antidepressant” but is really good for helping with pain management and also with helping people to sleep, so it works three ways. If you do not have an appointment with the neurologist for many weeks from now, either call that office or call one of your husband’s other doctors about helping to manage the pain and fatigue better.
There is a misconception that GBS is transient and that one gets it and recovers from it rapidly. As so many here will tell you, this is not typically so. Since it is so rare, it takes lots of people talking together like on this site to really see what the illness is like. A lot of neurologists say that fatigue does not happen and yet the experts that really see a lot of patients know that this is a very underappreciated aspect of GBS. To get past it, you have to be creative–do as much as one can sitting or reclining and do things in small steps.
Physical therapy can definitely help, but one has to have a therapist that appreciates the fatigue part of it.
To me, a shower was wonderful but exhausting. I would have to go lie down after a warm shower to recover. The reason to say this is to mention that even this “little” aspect of life was hard. It would have been easier with either a stool to sit on or one of those shower hoses. It is a “little” thing but important. You have to rethink how to do a lot of things in life. I think the most important thing is to try to be positive about this. I tried to approach it as “reprioritizing my life”–to not sweat changing in the small stuff so that I would have more energy and stamina to do what was really important to me.
Make sure that you and your husband stay “peopled” in your life with friends and people that care. Don’t be “too strong” to reach out.
I just want to re-iterate really, really to address the pain today. Your husband may be super stong, but this wears anyone down terribly.
WithHope for a cure of these diseases
AnonymousMarch 5, 2010 at 6:59 pm
Dear Lost Wife,
First, I want to tell your husband how lucky he is, and believe me, I do know. I will not go through all my story with GBS, but I was misdiagnosed, did not get either IVIg or plasmapheresis treatments, got another neurological disease, Transverse Myelitis, a blood staph infection (staphylococcuss aureus), a tracheotomy and hooked to a respirator, internal bleeding, pneumonia, a temperature of 107.9, BP 44/0 by Doppler, and an EEG that showed no activity. My wife, Rosemary, was told to make arrangements for a post-mortem. But she did not make those arrangements. And I can safely say that my two pcp’s, and the two neurologist did not have a clue as what they were doing, how to diagnose, or how to treat me. I was totally paralyzed and the only thing that worked on my body was my eyelids – I could blink, and that is how I communicated for about 2 weeks, then I went into a coma – That was on Jan 5th 1997, and I don’t remember anything until Jan 30th 1997. But I do know my wife saved my life at least 2 times!
After 5 weeks in the Hospital ICU, I was transferred to the Rehab floor of a nursing home, still totally paralyzed and on a respirator. After approx 4 mos in Rehab I was released to come home…and could walk about 30 ft with a walker. My legs/feet were in severe pain but I had no medications. I continued Rehab 3 x a week as an out-patient for another 4 mos, and could walk with quad canes about 300 ft. From there it was self therapy. Long story short, the GBS went into CIDP, and I started IVIg treatments, was put on neurontin for the legs/feet pain, klonopin for my chronic back problems, and topomax for my axonal nerve damage.
As a man that came out of a coma, I knew I was alive, but barely. I have always had a strong will to accomplish or overcome anything. It didn’t take long to acknowledge this would be the biggest obsticle I had ever faced, but I sucked it up and went after it head on. I kept a possitive attitude, a strong will power, faith that God would give me the strength to survive and overcome, and a strong love and sharing relationship with my family.
When I got home I set a schedule that I did every day: 1 hour every morning working my upper body with two 10 lb dumbells; 2 hrs every afternoon walking up and down my driveway (paved, 200 ft long), first with my walker, then with my cane. Then I broke my right ankle – a two month set back.:(
Today, I get regular treatments of IVIg; lyrica 150mg x 2/day; cymbalta 60mg x 1/day; topomax 100mg x 2/day; klonopin 1mg x 4/day; (no neurontin); and OTC drugs; omega 3 (fish oil); vitamins B-12 and B-Complex. I do take three more meds for my heart (Inderal, isosorbide, plavix).
During these past 13 years I have learned that a strong spiritial and family love will heal, restore, and protect life more than anything else on this Earth.:)
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