Looking for Help/Advice Regading Elderly GBS Patient
AnonymousMay 11, 2008 at 12:57 pm
First post, and unfortunately it is a bit of a bummer. I’ve read through many of the posts on this forum, and I’ve researched GBS fairly extensively through various internet sources. I’m looking for some help and advice concerning GBS in an elderly patient.
First of all, my Mom and all the family involved could use a healthy dose of prayers right about now.
My mom was struck with rapid onset GBS a little over a month ago. She had no history of this disorder. Within 24 hours of the initial signs of numbness in her legs, she was in the ICU. By day two she was on a ventilator. She was started on plasmapheresis on day four. By day ten, she was almost completely paralyzed including numbness of the facial muscles. Over the next couple of days, the paralysis retreated from her head and neck area and she was able to (slightly) move two fingers of her right hand. Over the past two weeks, there have been no positive changes. She is out of the ICU and has been moved to an acute care facility. Mom is still on the ventilator and feeding tube. She can no longer move anything below her neck and shoulders. She reports no feeling in her feet and lower legs. She does indicate that she is in a great deal of discomfort (particularly the lower back), and she is always asking for more pain meds. The doctors don’t want to up her meds anymore because it might interfere with what little respiratory capacity she has left.
Communications is difficult since Mom can no longer speak or write. When we visit, Mom is generally alert and responsive, but it appears that her short-term memory is greatly impaired (there’s no prior history of memory problems). She has asked, and we have had to explained, over a dozen times why she is in the hospital. She also has no idea how long she has been in the hospital. Mom recognizes family and friends, but she can’t tell you who visited her the day before. I don’t know if this is a result of the meds or is related to GBS. All things considered, Mom has been relatively cheerful, though she also has periods of confusion and depression.
Prior to the GBS attack, my mom was 75 years old and in fair health. She has a recurring form of lymphoma, has been through chemo three times, but was currently in remission. Last July, she broke her hip, and had to go through hip replacement surgery twice (the first one became infected). In the past year, she spent more time in hospitals and rehab than at home. At the time she was struck by GBS, she was living at home and could drive, but she still used a cane or walker to get around. In general, she had very little stamina and spent most of her time reading, watching TV, or visiting with friends.
This attack of GBS caught everyone by surprise, and we have no idea how many more blows she can take.
Given the rapid onset, Mom’s age, her general health condition, and lack of meaningful improvement over the past two weeks, her doctors are now giving her low odds of further recovery. I don’t know how to rate the doctors’ qualifications with respect to GBS, but they say they have collectively treated at least 20 cases, to include a number of elderly patients. We have been told that she may be on the respirator and feeding tube for the rest of her life. If she shows no further change over the next couple of weeks, we will likely be forced to move her to a “skilled nursing facility” where the emphasis will shift to custodial, rather than restorative, care. Mom has not yet been informed of her current prognosis.
My first issue regards getting a second opinion on Mom’s prognosis. I have no reason to doubt what her doctor’s are saying, but I would like to find a GBS “specialist”, if there is such a thing, to review her case. She is currently in a hospital in the Dayton, Ohio area, but we may move her up to a facility in NW Indiana closer to where we live. I am aware that each individual’s GBS experience is different, and that some people have spent months on a vent and recovered. I would like to get more information on what our realistic expectations should be.
My next issue regards Mom’s problems with short-term memory. Anyone have any experience with this? Would a change in medications help? I want to honor my Mom’s health care wishes as best as possible, but I am concerned about her capacity to understand what is going on.
Soon we will have to tell Mom what the doctors are telling us about her chances for recovery. On one hand, there is a yet unquantified chance she may get off the vent and recover some degree of mobility. On the other hand, this may be the best it gets, and it may only a matter time before secondary complications or another reoccurrence of lymphoma takes its toll. We are trying to find an acceptable median between providing Mom honest, though potentially devastating, information about her condition versus giving her unrealistic hopes regarding her chances of recovering.
We are going to gather family and friends together to provide emotional and spiritual support. This is going to be a very difficult time for everyone, and we want to do whatever we realistically can to provide aid and comfort to Mom.
I would greatly appreciate the wisdom of experience any of you may have dealing with severe GBS in elderly patients, particularly when faced with the prospect of long term custodial care. For those of you who have been severely afflicted and spent a great deal of time bed-ridden and/or on a vent, I would be interested to know how you felt, and how much you wanted to be told even if the news was bad.
Most all, we would appreciate everyone’s prayers.
May 11, 2008 at 2:24 pm
welcome to the forum and I am sorry to hear about your mom.
You are right, every case and every person is different. Right now, she could very well be in the plateau stage of this. Meaning nothing is getting worse or better at this point. Dont let the doctors who have treated only 20 or so cases tell you what her outcome will be. There was a lady who was worse than your mom and her doctors told her family it was best to turn off life support!! The family didnt and the last we heard she was doing much better and improved greatly. I dont want to freak you out, I am just trying to tell you what doctors say and how that persons case turned around. There are others who were on a vent for many many months and they are living close to normal lives now. Encourage her, dont tell her what the dr’s said or it could ruin her spirit and cause her not to improve because she could just give up. There is always hope, help her fight this.
Memory…a lot of us suffer from “brain fog” and memory issues. Meds could be a large factor but for some reason GBS seems to make short term memory wacky as well. I still have issues almost 2 years later but it is a lot better than it was when I was first sick….I was considered a ‘mild’ case since I wasnt paralyzed or vented, but it was still hell.
Give your mom all the support you can and then some. Dont let the dr’s “bully” you, and insist on the best care and ask for second opinions thirds fourths if necessary. The people in this forum know a lot more about GBS than most doctors. Dont give up and dont let your mom give up.
Take care and be well
AnonymousMay 12, 2008 at 12:17 am
Hi Andy, Welcome to The Family. Wow your Mom sure has been through alot this past year. There is no way a dr can tell you she is recovered as far as she will ever be, it doesn’t work that way. We say GBS stands for Getting Better Slowly and not giving up ever. GBS doesn’t know gender, age or other health issues. It is a very individual syndrome. There are some people who had very little paralysis but still can not work or have the same lifestyle as they did pre-gbs. I know a man who was in his 60s, who was very active pre gbs, about to be released from a hospital after a short stay and suddenly died from gbs. Only 3 to 5% of people with gbs die from it, that is a very low percentage.
What pain meds is your Mom on? Alot of us are on neurontin, it is non-narcotic and doesn’t affect the breathing muscles. It is very safe and works on nerve pain when opiates will not.
You mentioned pp but not ivig, is there a reason the drs are not using ivig on your Mom? PP works on 70% of patients, if she had good results with pp the first round then why haven’t they repeated pp or use ivig? Ask the drs for their reasoning and ask them to either repeat pp or try ivig. Ivig has the same 70% and it is actually less invasive on the body then pp is.
It sounds like You and Your Family are very supportive of Your Mom, that is the best thing for a gbs patient. Look for small positive improvements vs large improvements, they come in small packages in recovery. Recovery can take from a few days to years and years and years-there are no boundaries with this syndrome. Recovery can not be rushed in any way, it has a mind and pace of its own. GBS is the rapid form of the cidp syndrome. CIDP usually has a slower onset vs gbs having an acute onset. I don’t understand the meaning of your phrase “lack of meaningful improvement” with gbs there is no such wording, you will understand that after years of no new positives, it should not be used in newly dxed patients. There are good days where the improvements are seen right off, then there are bad days, sometimes alot of bad days, where the improvements are hidden until the patient uncovers it by making a certain move or trying new movements and voila an improvement appears.
Has your Mom been getting passive movement therapy everyday?
One place you might want to call or have her dr call, for a second opinion would be the University Hospital in Chicago-others on this site might be able to pm you the name and number of the dr or hospital there. Another place might be U of Michigan, They are very good with GBS patients.
Memory problems are common, most clear up during recovery phases, but may recur with fatigue and over doing things.
In my opinion, its better to be totally honest with your Mom about her condition. She knows there is something wrong with her body, but might not understand just what until she is told, then it might make it easier to except and deal with. Its natural to want to protect her from bad news, but its not natural to keep her from dealing with her body’s messages to her mind. With support she will be able to handle the news and start positive thinking and recovery will follow the path.
I’m curious about her chemo treatments, what type of treatment did she get the last round?
Your Mom and the Whole Family is in My Prayers and Thoughts. Take Care.
AnonymousMay 12, 2008 at 2:15 am
I’m not sure why ivig wasn’t used. From the literature I read, I thought the treatment protocol was either PP or ivig but not both at the same time. I also thought that these treatments were only effective during the actual “attack” phase (first 1-2 weeks) and not during the “recovery” phase. Is this incorrect? Thanks for the advice on the pain meds. I’ll check with the doctors in the morning.
We keep prodding the hospital staff on the passive range of motion/flexibility therapy, but we don’t think it is being done often enough. We may have to take over that duty ourselves, but first we need to relocate her closer to where we live.
I can’t remember the exact chemo treatment used the last time. It was completed over two years ago, so I don’t think it is connected to the GBS.
I’m not too far from Chicago, so maybe the University Hospital would be a good place to check out.
I think we need to figure out this memory problem before we load Mom up with too much information. I am reminded of a story of an Alzeheimer patient whose husband had passed away. Every morning, she would ask about her husband, and the medical staff would have to tell her the sad news of his death. By the next morning, she had forgetten again. She re-lived the trauma of her husband’s death over and over again until someone finally realized that nothing good was being accomplished. From then on, they simply told her that her he had visited while she was sleeping and would return later. She was always satisfied with that answer.
In a perfect world, I would want Mom to know everything that we know about her condition. However, in her current condition I don’t know if it would create more harm than good. I’m hoping we figure out a way to thread that particular needle.
Thanks for all the advice!
AnonymousMay 12, 2008 at 8:59 am
I sent you a pm. I was treated with 15 pp treatments and on lyrica for nerve pain. I also had the memory problems that seem to get better as I got better.
Your mother needs to be close to her family and loved ones as you are all going through this with her.
Travel slowly with patience
Prayers are with all of you
AnonymousMay 12, 2008 at 10:47 am
Andy, I am also in Indiana, in Indianapolis and see a very good neurologist at Indiana University Hospital and can PM you his name. Someone else on this website also saw him and thought he was great.
I have a question. How many plasmaphoresis treatments did your mom get? Sometimes it takes quite a lot to make a difference. I also would like to clarify what Angel2ndClass22699 said. I think she meant that 70% of people respond to plasmaphersis and 70% to IV IgG and this is the same number, not that the same people respond to each. Some people respond to one and others to the other. You are right in that Guillain Barre is supposed to be a one time illness and you should not “have” to keep repeating treatments, but in reality there are two things also to think about regarding this. First, that you have to get the antibody level that is causing the damage down enough to heal and how much it takes to do this varies a lot from person to person. Since your mom has only recovered a little head and neck function and is still respiratorily quite compromised, my guess is that her damaging level of antibodies is still really high. Additional plasmapheresis could help remove more antibody or the administration of IV IgG could help swamp the system with immunoglobulin so the bad stuff does not bind to nerves and so that her own production of (especially bad) antibodies is shut down. It will take a while to heal, but right now it is critical to stop any additional damage. Do you see why people are saying she probably needs additional therapy at this time?
Control of pain is really important. I echo the suggestion for a medicine that helps peripheral neuropathy–neurontin or Lyrica or Cymbalta. Methadone is a narcotic but one with a really long half-life and can have less effect on breathing while still help with pain because of these features. You just have to start slow and build up.
Another reason for memory concerns is the stress that she and her body are under right now. This may be her brain protecting herself in this stressful time, so I agree not to force it, but also advocate not to lie about her situation. One thing someone can do is make a note of progress–such as when she can move a finger or shape out a word as this can be something that help her to realize that there is slow progress being made when she is more aware of the situation. Back to the statement before, if she asks how long she has been in the hospital, answer–long enough to make progress in moving your head and if how long will I need to stay–long enough to be able to breath better on your own or something like that. If she does not get back memory, the medical staff might should think about an MRI of the brain to make sure there was not a stroke also.
Part of the reason that angel2ndClass22699 asked about chemotherapy is that some forms of chemotherapy can help suppress the production of antibodies–and some forms of lymphoma/myeloma might have a greater chance of abnormal production of antibodies so that treating one helps the other.
WithHope for cure of these diseases
AnonymousMay 12, 2008 at 6:58 pm
Well, I’ve been peppering the hospital with questions…. thanks for the tips. Still awaiting answers on most of them. I was told that the reason they opted for PP rather than ivig was due to an elevated risk of renal failure in elderly patients. I guess it’s kind of like Mom’s chemo… the treatments can almost be as bad as the disease. I’ve asked drs to revisit the idea of a subsequent treatment with PP or ivig.
We are actively looking for a good facility near NW Indiana. Chicago is actually the closest big city, but it’s still 1-2 hours to get anywhere in the city, depending on traffic. Since this is going to be a long haul, we were hoping for something a little closer. If anyone has any suggestions, please let me know. We’ll work it out one way or another.
One other problem I need to figure out is the Medicare/private insurance maze. It seems that a lot of Mom’s care decisions are being driven by the insurance guidelines. 😡 😡 Perhaps this is worth another thread, but does anyone have experience with getting doctors/treatments/medicines/facilities approved when the insurance folks are trying to move a GBS patient off to custodial care?
Thanks for the advice, prayers and private messages.
May 12, 2008 at 8:25 pm
We live in a suburb of Chicago and we drive to Rush Presbyterian. They are the top five for neurology. Our peds neuro is the head of pediatric neurology and was the only doc that figured out what was wrong w/Kevin after 2 mis dx. If you would like, I could contact him and ask who the best to see would be. I hold this mans opinion in high regard considering the help he has given us. There is a doctor Arnason (spelling) on the foundations board, he is at the University of Chicago. No experience with him, I just know he is here.
Dawn Kevies mom
May 13, 2008 at 1:37 pm
Since you are also looking for a rehab, I KNOW!!!! RIC in Chicago is known as the best rehab center. Rehabilitation Institute Of Chicago. It is near Northwestern University I think in downtown Chicago. I will see if I can find the number, Kevin went to an out patient branch near our house.
Dawn kevies mom
AnonymousMay 15, 2008 at 8:53 pm
Short update on Mom,
We’re being told that Mom’s time at the hospital is almost up. Medicare only allows so much time if the person is “medically stable.” Good news/bad news is that we are still trying to find a skilled nursing facility that has ventillator care and is accepting patients. Good news is that they can’t kick her out of the hospital until we find one. Bad news is that Medicare may eventually try to push us into a facility that is far away from home or otherwise unsuitable. Anyone have any experience with this kind of problem?
Second question – my mom loves to read, and there’s nothing wrong with her eyes. Does anyone know of an “eBook” type device that has some device allowing a quadrapalegic to turn pages? It would help her pass the time while she recovers.
AnonymousMay 15, 2008 at 10:15 pm
I was diagnosed with GBS Sept 07 and I have been unable to tolorate the weight of books. I purchased an Amazon Kindle. Most books cost 9.99 and are downloaded within 1-2 minutes after you purchase them. The Kindle has really been a lifesaver for me. I holds several books and has a large easily activatable button to change pages. The on/off button is located on the back of the device (a small slide button along with the connection to the “net” to down load the books. Also there is a small wheel to work the menu. I have learned to use it and in the beginning, I had family set it up for me. The cost of it is $400 so it is rather steep in price but I have found it worth it since I have been able to put several books on it that also relate to work ( I am a school teacher), it has made it easier to reference techniques and research easier for me .
Hope this helps.
AnonymousMay 16, 2008 at 10:17 pm
Sorry to hear about your mom. I saw your last post about turning pages and I am supposing this is for her to be able to read books, etc. I know this is going to sound a little weird but a friend of mine after a car accident could not use her arms at all so she used a mechanical pencil the ones you put lead in without the lead and put it in her mouth eraser part down and the eraser was able to turn her pages on her books but she also got books on taope that she was able to listen to. Just a thought. I cannot help you with docs in your area as I am still working on getting one to help me with my CIDP and am finally getting sent to Dr. Gareth Parry who does know GBS and CIDP but he is in Minneapolis. One thing is once you get a doctor to get her on a treatment plan that is helping her then they can coordinate with her primary care physician and she can be treated close to home. I live in Mandan ND so once I get a doc to get a treatment together my primary will coordinate with them to do most everything here instead of having to go to Minneapolis often. My thoughts and prayers are with your mother and your family. Hope things turn for the better soon.
AnonymousMay 24, 2008 at 4:09 am
It is with great sadness that I report that my mother passed away this morning due to complications associated with GBS and her prolonged hospitalization. Her body had suffered many blows over the years and it was ultimately not up to the fight. She passed quiet and peacefully surrounded by family and friends.
Thank you everyone for all the advice, prayers, and support over the past few weeks. May we all hope and pray that new treatments can eventually be found to bring relief to those living with this disorder.
With God’s grace and blessings,
In remembrance of Elsie Sizemore (1933-2008), beloved mother, eternal optimist, lover of cats.
AnonymousMay 24, 2008 at 8:14 am
My wife became ill with rapidset GBS while on a trip to England in early July, 2006. She was never on a respirator although did experience some difficulty with breathing and was therefore placed in CCU. She, too, suffered from severe memory loss and confusion. I, her husband and caregiver, had to repeat information many times during the course of a conversation and had to keep discussions at a simple level, since her mental process were not then on a high level, though she is a university English professor. These problems with mental acuity persisted for at least five months, during which she improved as time passed. She has now recovered full mental acuity, although occasionally she has difficulty with even simple words that for some reason she cannot at the moment recall. From my readings about GBS, I am inclined to think that her problem developed from slight oxygen deprivation to the brain during the time she was in CCU. Dr. David Parry, a very well acknowdedged expert on GBS from the University of Minnesota, discusses the problem with loss of mental acuity in his book on GBS that was published in the last few years and can be ordered from Amazon.com. I recommend that you get a copy of that book ASAP. By the way, Dr. Parry will most likely be at the big GBS conference that will be taking place in the suburbs of Chicago this fall. You would very likely profit from attending that conference if possible. Check for more information about the conference at other places on this GBS website.
AnonymousMay 24, 2008 at 8:26 am
I just read your last message, which apparently was posted during the time that I was writing the above posting. Only someone who has been through the sorrow, frustration, and exhaustion involved with either suffering from GBS or else caring for someone afflicted with it has some understanding of what you are going through. You will find many such caring people on this Forum; suffering that brings us together. May a blessing come to all of us.
You must be logged in to reply to this topic.