Welcome Hugh to this forum. We are all empathetic that you are having to travel this road, but hope that sharing the travel will help.
GBS and CIDP are complex syndromes with a lot of different manifestations in different people. Sometimes the diagnosis is easier and sometimes harder and this does not mean than your care has been substandard–just that you are an individual and doctors want to be sure before labelling someone with a serious illness like this–with all the emotional and insurance implications, etc. The members of the forum are very vocal in saying to advocate for yourself and this is extremely important. Sometimes for me, there is recently too much negativity about medicine–even the statement that doctors are stupid. This is a sweeping generalization and you should take it with the understanding that the purpose is to indicate that you should advocate for yourself and listen to what your body is saying.
Having said this, I also would like to state a couple of logical reasons that this current episode may not just be residuals.
First, you have NEW symptoms, as I understand it–new weakness in the arms and new right lower leg weakness. From what I have heard and read, residuals do not show themselves as new major and significant areas of involvement. They usually are residual to areas and manifestations previously seen.
Second, you said you lost reflexes with the “GBS” episode and got them back and now lost them again. Reflexes are a sign of conduction inside the body. A residual is inadequate healing. To lose reflexes again means that there is new damage/changes. Testing of reflexes is VERY dependent on the person doing it, I have found after seeing several doctors at a teaching hospital and elsewhere. If the same doctor found reflexes to be gone, to return and then gone again, this is significant.
A less definitive argument, but still a worthy one logically is that residuals usually do not show themselves as ALL of the original symptoms together–but rather as a part of the original.
This is not meant to be discouraging, but rather a statement that probably the jury is still out in your case as to what exactly this is. Listen to your body. The best thing for residuals is to rest, rest, and rest some more. Time horizontal is what people argue for–meaning that it seems more important to be lying down to rest (even intermittently) than sitting down.
WithHope for a cure of these diseases
Kevin, keep your spirits up and keep looking. It is hard to have the world be so different than it used to be–with a job and relative health and relative autonomy. I have a few things to say or suggest.
First, I echo what Selahsmon said. I asked a few questions about insurance if I was not able to work full-time any more soon and was told that there is a state insurance in my state also that one can get onto (separate than COBRA), but you have to have had denials from two insurance companies previous to this for coverage of your medical condition. This was all I could cope this asking at that point so I do not have more details, but you can get more information from the state insurance office about what insurance companies can deny and how you can appeal and what options there are as well as this. You might also ask at one of your doctor’s offices or medical care facility to talk with a social worker or financial councilor (I know the hospitals have them, I do not know if their interest is predominant that of the hospital or if they also help you. At the hospital where I am, they help the families, but it is a Children’s Hospital and that often makes it a kinder, gentler place, all in all). Yet another option is to search disability and/or IVIG in these threads. There have been several suggestions in the past about getting IVIG. As someone suggested, the National GBS-CIDP Foundation said at the last symposium that they have some information on advocacy and on getting medical care when one does not have or have “enough” insurance for whatever reason. It would also be a good idea to start applying for disability coverage. No one should deny someone who is bed ridden, but I have a lot seen the first application seemingly denied on everyone and one has to ask a second time/appeal to be covered. Finally, I have gotten expensive medications paid or of almost paid for from drug companies for the kids. It is often a good deal of paperwork and persistence, but it can happen for IVIG.
My final point is that my understanding that IVIG and steroids have about the same number of people respond to them if the person has CIDP and that IVIG is preferred due to long term side effects. What I remember about MMN is that this is the exception–that IVIG works much better on the disease AND has fewer long term effects than steroids. Obviously, IV IgG works well on you and immunosuppression with good doses of other meds has not controlled your disease without the addition of IVIG.
Keep trying, keep on living life as fully as possible.
WithHope for a cure of these diseases
Hi, welcome to this site. I wanted first of all to you and Dawn and everyone, to say to not give up hope and also to follow your heart and what it says about this little girl that you love so much. Second, that is never “normal” for a child not to walk for days and days on end. There may be more to the story than you said, but it does not seem typical to treat a child with motrin or naprosyn for a month if it is believed then that she is not walking because of being in too much pain. If there is that much pain, one would hope that there would be a great effort to find out why and to reduce the pain. I just hate to hear of little ones suffering because they cannot explain why they hurt or all places they hurt. Did she get other pain medications? Did she get steroids such as prednisone? Has Selah had an MRI of the most painful knee? Has she had blood tests to look for Lyme disease, juvenile rheumatoid arthritis, and blood counts or tests to make sure that this is not something else. I work with children with leukemia a lot and have seen leukemia present with refusal to walk and sometimes with swollen joints. I am not saying that this is the reason, but it is an important one to make sure this is not the case especially if steroids have been used at any time, because leukemia needs a different treatment plan and it is serious so that it is important to make sure that it is not in any little child with limp. Also, although leukemia is a scarey word, it is very treatable in little children and the pain gets better really fast after the proper treatment is started. The children I have seen with “rheumatologic” symptoms/signs and not blood abnormalities so much (like anemia, low platelets, or leukemic cells in the blood smear), feel much, much better within a few days of starting treatment. Their parents often say after a few days that they have their child back. I say this only that the diagnosis of leukemia sounds so bad, but knowing a reason for the pain can lead to effective treatment of the underlying problem.
In Ohio, Cleveland clinic has an excellent reputation for complex diseases. I work at Riley Hospital for Children in Indianapolis which also is excellent with cases that are unusual. Here there is a pediatric neurologist, Lisa Smith, who seems very knowledgable about GBS in children and there are also several wonderful rheumatologists that are experienced in searching out the cause of joint pains–no matter the cause. If you are looking for a second opinion for a situation that has been described to you as “unique in the world”, I would strongly suggest looking for a place that will look at the whole child not just consideration of GBS or arthritis.
Finally, people can have GBS and it can be slow on onset, slow to go away, and have MRI changes especially in the lowest part of the spinal cord (Cauda equina and ventral nerve roots). So the fact that little Selah needed a second treatment with Iv IgG or is still struggling does not necessarily mean that she has a chronic problem such as CIDP or JRA or some unique persistent autoimmune disease, it just means that the jury is still out and more needs to be thought about.
Listen to your heart about your little girl. If in your heart you feel like she is not getting better yet, keep pushing for answers there or elsewhere. Advocate for her. You are her voice because she is so young. AND keep hope.
WithHope for a cure of these diseases
I would like to join everyone else in wishing you encouragement and strength in these challenging times for you and your husband.
I think steroids act two ways–to settle down the inflammation and the flu-like achiness from inflammation (reflected in reduction in the ESR and CRP) and, second, to stop the ongoing damage. These are linked but it seems like the first is manifestations of the process in the body away from the immediate area and the second is what happens right on the nerves. Since you started steroids at a moderately high dose before–it probably affected both areas, but over time and with less steroids, the effect is less. The high dose steroids may work, but since you have already been on lower dose steroids, the rate of working–especially on the manifestations of this may be “slower” to show up. this does not mean that it is not helping the underlying process, just that the immediate feel better might be a good deal less. I would suggest to give the high dose IV steroids at least three times to work before getting discouraged. It also takes longer and more to settle down a flare than to keep things steady at non-flair times.
Please be careful to not stop steroids suddenly if you have been on them for more than a month–your body has to get used to making its own steroids again. Weekly steroids does not replace the daily need for steroids in times of stress.
Cymbalta helps my pain in my feet a lot. I have been on it almost a year.
Part of the stress of caregiving is the need to always “do” things and we need to rest. Women and men often have a different list of what really needs to be done at a house. when you shared chores, most of both what your husband felt needed to be done and what you felt needed to be done was probably able to be accomplished. Now is harded. As much as possible, try to ignore things that are not “necessary” to do in the next month or two or three. Making a new couple schedule might help–such that sometimes in the morning, he will feed the dog and that you will go get the paper but only after resting thirty minutes after finishing breakfast or whatever–to space things out and to share chores as you both can. Also schedule companionable stillness into the afternoon–where both of you sit down and rest and talk or watch something on TV or listen to music. Something that is restful to both and in which time you do not run around doing things. It will help you and the both of you.
If people ask if they can help, suggest to them little tasks. One of my neighbors, bless him, brings my trash cans up to the top of the driveway each week. He takes his back to their place and then brings mine back from the end of the driveway. It probably only takes a few minutes each week, but it helps me so much. Someone might do that or bring the paper to the porch, etc. Having people come visit might help your husband a lot as well. It really must be hard to not have work to go to and to be physically limited all in such a short time. Although you have come to live with your limitations in the past 5 years (with whatever peace or not that you have about that), it still is a little different when the physical limitations are new and, hopefully for him, temporary. He is not you and you are not him. Both of you feel and need different things. You, right now, need to help take care of yourself as you also help to care for him.
Joan and Bill, I just want to say keep holding on and don’t get too discouraged. You are still early in trying to figure out how to live the rest of your lives after this earthquake has hit. I understand what the others have said, but I would not say exactly the same thing, because it seems to me terribly important to talk about liver transplant because the decision to do this will have a huge impact on both of your lives for years. You cannot make the decision for your husband, because there will be a lot of tough things that only he can do like quitting smoking; nor should you let your fear of a negative outcome overshadow the decision because he might resent you. However, if he goes to liver transplant, both of you will have to live a life dedicated to this for a long time–when waiting, when in the hospital, and when being careful about all the rejection medicines and medical tests and follow-up visit. Often people are away from home a long time. I do not say this in anyway as discouragement. If this is what is wanted, it works and I have seen quite of number of people (children though) living wonderful loves after liver transplant and heard about a lot of adults. It is not a step to take lightly, though, nor without dedicated support from the person closest to the one getting the transplant.
Men and women are very different in how they approach health issues and medical interactions. Lots of guys are uncomfortable with asking questions or dealing with the emotions of illness or the possibility of death. I am not saying this is everyone, but it is more common in guys. It seems to me that you are the asker, the investigator, and the facilitator in your couple. This is a strength you bring to the couple and a huge help to your husband whether he “knows” or acknowledges it or not. It also is my impression that he is the rock, the stablizing force in the couple and that all your doing and feeling helps him to be still. It just seems to me that it would help both of you to talk about the situation. You do not have to sound negative or fearful nor like the decision were yours, but it has to be an “ours” decision by its nature and you need to know if that is what he wants to do to be able to better help get the information and ask the questions and feel the worry that does help him. Do you see what I mean?
I am just a person, not a counselor or anyone trained in all this, but I do work with children with life-threatening illnesses and their families and know how important that it is for a family to go together through tough times and how important each person’s contribution to making decisions is–no matter how different it may be. The families that survive having a child with cancer are those that work together for the health of the ill one and for the support of the others. This, like a liver transplant, affects almost every aspect of a family in little and big ways for a year or more and continues in less serious ways to affect the family for the rest of the lives of all the members of the family. This stuff is serious. this stuff is scarey. But people get through it if they stand together.
Hang in there, Jim. I have not gotten a chance to find the newspaper article talking about disability in Indiana, but have not forgotten. I will look for it. I wanted to say too suggestions, if this is possible. I attend two support groups and you live in between them. One is in Indy and is lead by a neurologist and meets every month the third Monday of the month from 6:30 to 8. It is for all people with neuropathy, but most of the issues are the same and there is a lot of good discussion about ways to help pain, wobbliness, weakness, etc. It is also not “touchy feely” and there are several men that are patients or sponses. Think about coming some time, it might help you and your spouse if you can. The other support group that has met only twice so far is in Dayton, OH. It meets on Saturdays about every three months and is specific for GBS/CIDP. It also has been really, really nice–lots of friendly folks that understand what life is like. I can get you the addresses for either or for anyone else interested. Since I drive past Richmond to go to Dayton, if you are interested but cannot drive that far, we might find a way to meet and you could ride to the Dayton meeting with me or with someone else going that direction.
Hey, it might be nice to have a listing of support groups/regional meetings available at the symposium perhaps at the state dinner.
WithHope for a cure of these diseases
Hi, Beth. i work at a clinic for children with cancer and probably 400-500 bone marrow aspirates/biopsies are done a year there and virtually ALL are with sedation. Why in the world have a child/teen go through something that is scarey and tough without it? But medical hematologist/oncologists do them all the time in adults without sedation. I am like you, treat me kinder and gentler than that. I know that bone marrow aspirates and even biopsies can be done with little pain using lots of lidocaine to numb down to the bone and having an experienced person do it, but for many people it is uncomfortable and for some painful. Pain and worry are stressors; they also impact your immune response abilities. It seems that people are more likely to flair their autoimmune diseases in association with surgeries and life stressors in which are worried or pain is not adequately addressed. All this to say two things…
Please ask that they still use lots of lidocaine even if you are sedated. It will help when you wake up.
Do not feel like you are being a “scarey cat” to ask for sedation–you likely are making things better/safer for your body with this disease. It is doing a smart thing, not being a “child”.
Beside the point, when I started getting neurological symptoms, since I work at a Children’s Hospital in a major medical center, I decided to have as much done there as possible. Why not? People are comforting and explain things more and think about your comfort a tiny bit more and I got to see what “my kids” were going through. Not to say I have not had good experience when I had tests done at the “adult” hospital a block away, but it is nice to be treated like a child. The phlebotomist use smaller needles and get it the first time every time because my adult veins are HUGE compared to a baby. I always bruise after a blood draw at the adult hospital and never at the Children’s hospital (plus there I get “cool” bandaides not the boring tan ones that the adult hospital uses. It just makes you FEEL better!) When I had my MRIs, they were teasing me that they did not have classical music to listen to and I would have to listen to Radio Disney or Sesame Street Live CD, but I think they were just teasing me, because they do a lot of MRIs of adults at the children’s hospital.
WithHope for a cure of these diseases
I would like to say several things that I hope help.
First if one is on the same pain medicine for a long time (like years as you were), it sometimes loses its ability to work as well because the body gets used to it (all the pain receptors are filled and the body is used to the metabolism). Often pain professionals talk of drug rotation–changing to another drug that acts a little differently or is metabolized differently so that you get better pain control with less drug and therefore less of the side effects.
Second, I do not know the answer to this, but would think that a block would be really hard to do–blocks work when there is one major nerve or nerves coming from one area and CIDP is usually a pretty diffuse problem–lots of peripheral nerves.
Third, keep working with the pain clinic. One of the biggest things I have found is that (at least in kids), the pain specialists really treat pain as a complex, life-impacting illness. A whole lot of people hope that a medicine will be a magic cure to take away the pain, like a lot of us hope that a medicine might be a magic cure to make us thinner. More than any place (except I hope where I work), the pain clinic at the hospital I work in treats the problem as a problem of life-impacting consequence and trys to find a number of ways to improve the pain, but mainly to help people to keep living life despite it. I have not been to a pain clinic, but I have taken care of kids that have been there and heard the parent struggle with this difference. I try to tell them that the pain doctors are not saying that the pain is in their heads when they require psychologists to see the kids–they are trying to say that pain is hard to live with AND that we all have a lot of power in our brains to impact life. They try to teach biofeedback sometimes and relaxation techniques sometimes and let the kids vent, as well, about how hard it is to not be like the other kids in activity and ease of movement. The pain clinic here also requires evaluation by PT–not as a statement that kids are lazy, but because often gentle stretches or slightly different ways to move or walk can help a lot. When we hurt, we automatically do things differently and this may not be the most efficient or “normal”. I do not know if this approach is what the place you went to uses–a whole body approach, but since you are a practical person, I hope you can see that “these caring” (as you state) people may be trying to care in a different way.
My fourth suggestion is to work with them. Tell them how changes and trials impact your life. They may have suggested it, but perhaps writing down once a week what the pain was like in “level”, but more importantly on how that impacted your life both when it was worse and when it was better. What you were able to do when the pain was less and wanted to do but could not when it was worse. Everyone has different perception of pain and different way to express it. Sometimes the most effective way to communicate is not a “subjective” level, but how “objectively” it impacts life. I hope this is clear because pain clinics can make a big difference if communication can happen both ways. But for it to work well, it takes time and it takes effort on both sides of the “table” as well as medications.
Fifth, I know there are many places that do not understand how much impact this kind of pain has on life. Just what you said, Dick, makes me think this pain managment clinic might be one of the good ones. I am not trying to justify all of them or the approach, but I have come to see the benefit in it over years of working with children with significant pain (mostly from cancer or cancer surgery). I also have seen how hard it is at first to make the connections and establish the communication for it to work well (and to sometimes set aside years of not communicating well enough or the me vs them approach that can lead to). A new place is a new place to start again with all putting the emphasis on trying to help the pain. My small, gentle suggestion for Flower is to put aside the Medical Marijuana issue. The pain clinic you went to has as you state, said that they cannot/will not deal with this. You are not going to change their minds and they are not going to change yours about this issue, so why not make it an issue on which you agree to disagree and try to move on if both sides can. You could give up or work with them to see what they might do to help your pain keeping the emphasis always on pain and its management separate from the issue of MM. It seems your pain is really bad and you need a different approach. Methadone is a really good narcotic pain medicine–it is just hard to get right as a pain medicine. But it is convenient to take because of its long half-life and sometimes has fewer side effects such as sleepiness at an effective dose. It also seems to have less tolerance build up so it is good for long term use. Our hospital is beginning to use methadone in children more and more because of these positive aspects.The biggest problem with it is that people still think of it adversely because of its use in the past for prevention of withdrawal rather than its real use as a pain management medication. But again, it is a really good pain medication.
WithHope for a cure of these diseases and a better life despite them until then.
I hope that life starts getting easier today for you, Linda. Do you think the sensitivity after swimming was due to the temperature changes, maybe? It is hard on a lot of us to be hot or to be cold.
The interpretation of nerve biopsies by the pathologist is the hardest part and I have been told that lots of places do not do this as well because they do not have as much experience. I was told that if ever a nerve biopsy was done to make sure to go to the most experienced place you can–because there are some challenges to do them that does not lead to longer term side effects at the biopsy site, but mostly because you want experienced pathologists looking at the slide so that the best information possible can be extracted from the biopsy. I am glad you are going to go to Duke for the biopsy–it may save time in the long run.
WithHope for a cure of these diseases
I work a lot with young people with cancer and it is really common to have a tough time on the anniversary of diagnosis (and for them also on the their birthday or sometimes Christmas–times also which are really memorable and in which you tend to think about how life has changed in the last year). It is not so much the day and the representation of changes in life and, for us, often “trauma” about the initial times that has not been sorted through–such as how scarey it is to have your nervous system shutting down, to need to be on a ventilator, to not know the future any more, and having one’s previous position in the world so altered so abruptly. In some ways the anniversary reaction is likely a way to process it through to help mentally heal, because last year all you were trying to do was survive.
I have three suggestions. First when you begin to feel overwhelmed about the last year, say to yourself what good things have happened. You probably never knew you were as strong as you are. You probably did not realize as many people care as do. etc. Think about the progress that has been made and that you are no longer so acutely ill. Share with your family about the love and support.
Second, do things specifically that are different than last year. If you went to visit in-laws last year also, either go another weekend or make a different schedule or do different activities–whatever it is that reminds you so much of the “trauma” of last year. Go to the movies if you did not last year. Go to different restaurants. Sleep in a different room. Whatever helps. This is so you will not be overwhelmed feeling.
Third, give yourself permission to grieve. It has been a tough year and your life is not like it was before and probably will not exactly ever be again. This does not mean that life will not be good, just that it forever will be different. That was a pretty dramatic shift in life that happens–like people feel after Katrina or after the flooding.
WithHope for cure of these diseases so that they are not as traumatic.
Hi, I hope all gets better for both of you.
I have a couple of little suggestions. First, be careful about your husband having any surgical procedures like wisdom tooth extractions. It will be harder to heal since he is on steroids and any infections/inflammation can flare the immune system and cause worsening of the CIDP. That does not mean he could not have what he needs to have done, but I am trying to say only do what needs to be done–not elective procedures at this time until everything is more settled and clear.
You may want to together think about a second opinion, since you are not keen on the current doctor and since these are hard and rare diseases. Perhaps your husband will agree since it is clear that you have questions that you do not feel are being addressed for the best for you–even though he is okay with the current doctor. You can search Knoxville in the threads and find suggestions. One person that volunteered to help answer questions was jack11309 who lives in the area. It sometimes helps a lot to talk to someone else that is facing this illness. So if your husband does not want to get a second opinion, think about searching out someone else that lives nearby and calling them.
Third, it is an unfortuante fact that a lot of medical care happens only on appeal. In fact, it often seems like places say no without even seriously considering the situation. So do not be discouraged about the need to appeal by a strong letter–just be persistent.
WithHope for cure of these diseases.
Shannon, I also want to encourage you to get help. Anorexia is a very difficult problem and can be fatal. As you are aware, it is dangerous when there start to be alterations in the heart/cardiovascular system including irregular heart rates, passing out or almost doing so by inadequate blood supply to the brain. Please be as honest with the psychologist/psychiatrist as you are with us and listen if the medical personnel think hospitalization is needed. It is really hard to reverse the trend of weight loss and to get back to a safer place and sometimes things may get even a little worse before getting better if a person addresses issues and concerns. When someone is a caregiver, they sometimes do not want to think about themselves, but it seems to me that the state of your body right now is rather in a dangerous place and you know this in your heart. I have seen a lot of caregivers not take care of themselves because of using all their energies of those they love who are ill, because of frustration about the unfairness of illness, or sometimes even guilt or wish that the cosmic balance will alter to release those they love if they are affected so. You are a special person and deserve health and peace. We all hope these for you and for Ben.
With hope for all those that care for people with GBS/CIDP
We are here and we are listening and I’m sending you a hug. I remember reading about raw iron (pig iron) being smelted down and then molded and coming out stronger. Never could remember the book. That’s how we are when we’re going through trauma’s and loses that melt us down. We can come out strong. If you need someone to talk to all you have to do is click on one of us and ask for a phone number.
For what it’s worth by way of encouragement — I was hospitalized for 7 months (on trach 4 months) in 1999 with GBS (age 50 then); for the first 3 months, I was completely paralyzed and only able to move eyes. My recovery was slow, but I was back at work (attorney) full-time by Sept. 2001 and have been about 95% recovered for several years. I still have minor balance problems and slightly weakened/stiff fingers, but other than climbing ladders and jogging (toe-drop would trip me up), I can do pretty much everything that most 58-year-olds can do — no wheelchairs, walkers, or canes. A little less energy than I had before the GBS, but I do not even need afternoon naps, just a solid 8 hours sleep each night.
By way of suggestions drawn from my recollections and that of my wife (who was my constant advocate in the hospital 12 hrs/day) —
Help the patient communicate by using a letter chart (A-Z in 5 rows + 0-9 across bottom) with the caregiver running his/her finger across the rows and the patient blinking or moving his/her eyes at the appropriate letter (write down the letters on a piece of paper).
Try to keep the patient in the hospital rather than going to a nursing home. Identify and emphasize any even minor medical issues that render nursing home care arguably inappropriate — i.e., feeding tube infections, trach infections, bed sores, elevated blood pressure, blood thinner meds, infections, need for chest x-rays to monitor pneumonia. See if there’s a hospital in your area that has a vent rehab unit and try to get the patient transferred there. In my case, the insurance required, as a condition of my staying in the hospital that I be able to do 3 hrs of PT/OT per day and that I make progress in the PT/OT towards being able to care for myself. My wife was able to convince the insurance people — with the help of sympathetic PTs and hospital administrators — that I could meet these requirements. Application of the standards seemed to involve a lot of discretion so being both nice and assertive in dealing with the insurance people helped. Re the insurance — ask the insurance company to assign a case worker or major-case-unit rep to the patient; most insurance companies will do this for major claims and the case worker/rep usually has much more authority/discretion to waive claim limits/requirements than the first-level claim processors. At my wife’s invitiation, the case worker assigned to my case visited my wife and I in the hospital and thereafter viewed me as a person rather than just a stack of papers. Argue to the insurance company that it will be cheaper for them in the long run to keep the patient in the hospital than to send the patient to a nursing home or home where the patient will develop multiple medical problems and need to go back into extremely expensive intensive care.
Find some favorite photos that the patient likes (particularly happy/restful photos like from a vacation or a picnic), blow the photos up to 8×10 or larger, and stick them on the wall where the patient can see them. The photos make the patient feel better and give the nurses/CNAs/PTs something to talk to the patient/caregiver about (making them think of the patient more as a person).
Try using a tape recorder/Ipod to play favorite (upbeat) music or books-on-tape for the patient.
If the patient has to do unpleasant or extremely tiring exercises (for me, I had to sit up in the wheelchair for 1 hour each day to strengthen my trunk muscles and this was depressing/exhausting at first), get some upbeat videos (perhaps exercise videos or music videos) to play on the TV while the patient is doing the exercises (watching Shania Twain videos actually took my mind off how tired I was).
Encourage the caregiver to talk on the phone to family/friends while the patient is in the room listening to the caregiver’s end of the conversation — this gives the caregiver moral support and, at least for me, overhearing the conversations made me feel better.
If the hospital day seems exhausting for the patient and/or caregiver, try to get all the hospital staff to agree to one hour each day when no one will come into the patient’s room (perhaps around 2:00 in the afternoon) — put a sign on the door — and then let the patient and caregiver sit quietly doing nothing during that time (perhaps the caregiver could read silently or doze in a chair and the patient could listen to a CD or nap).
If there are local friends/family who would like to help, set up a calendar and schedule people to come to the hospital on specific days/times that work best for the patient/caregiver. Initially, my wife scheduled people to come during the rest-hour and my wife would go down to a quiet room somewhere and nap or take a quiet walk. As I started recovering, my wife scheduled people to come during lunch and dinner to help her feed me (which was more a rehab exercise than eating as I slowly regained swallowing and gag reflexes).
If you have not done so already, contact several people through the GBS Foundation who, like me, have gone through this experience and are happy to talk on the phone with additional tips/suggestions as new issues constantly arise. There are probably GBS veterans in your area who could even stop by the hospital for a visit — one of my few positive memories from my time in ICU was when a local attorney who had survived a severe case of GBS 20 years earlier visited with us for about 30 minutes. Just seeing this healthy, active person made my wife and I feel much more hopeful.