Wow, youve been through a lot. Did you have the Miller Fisher variant of GBS (affects the eyes.)
I dont know much about earthquakes, sorry

Hello – I am glad you found us and I hope that someone has something hopeful to tell you. I have not experienced the “earthquakes” you describe. But there seems to be as many unusual side effects or residuals as there are people!

🙂 It certainly seems like you have made a remarkable recovery from your initial illness.. I never had what you desribe as earthquakes.. I did share some of the common symptoms you had…. I had a lot of zaps, buzzes, and constant throbbing… Some were painful, some not…. I’m wondering if the earthquakes you are experiencing are related to either nerve repair or nerve fatique.. Perhaps the latter is more true, if you have been over doing it… Congratulations on your progress, and hope for more good news and stories.. Deanop

I have never read about any natural aides. All I can suggest is research the heck out of GBS on the internet. Not many doctors know too much about GBS, I have found. It is extremely frustrating when you want answers and the only answers you hear from doctors is that theres just not enough research.

I had huanting dreams you talk of and lost time also. It took months before I could talk about the dreams and first few weeks in the hospital without getting upset. So many things I thought I had experienced, I was told never happened.
It’s difficult to be told things never happened when in my mind everything was so real.
I believe it’s one of those nasty experiences you have in life that you will never forget but as time goes by it gets easier to deal with.
Hope you keep improving.
Shirley

A nurse told me those nasty dreams are called “ICU SYNDROME” and are not uncommon. Being hooked up to stuff that beeps & buzzes – and there is no real distinction between day and night is enough to make anyone a little crazy.

Hello Rose,
Welcome to your new family, where we understand because we feel what you feel. Would you post where your brother is located. We might be able to find another member who is near you.
I have CIDP, so my knowledge of GBS is limited. Give the others a chance to respond, since we are in different zones, we come in at different times during the day and night.

Hi Rose,

I am in Ann Arbor. My first advice if possible would be to get him to U of M Hospital here if possible as they have Dr’s experienced in GBS. If that is not possible then he definetely needs to get out of the rehab. hospital and back to the regular hospital. He needs medical supervision until his GBS is under control which it sounds like it’s not.

Usually with IVIG they give a “mega” dose of several consecutive days of treatments, you should ask if he recieved this. That is usually the amount given before us patients are put on a 2 week, monthly etc infusion schedule. If he recieved less then possibly he wasn’t given enough for it to work properly. The next step is the Plasma Pheresis which usually will come after IVIG because it will wash out the good antibodies from the IVIG.

I am the liason for this area including your area, feel free to call me if I can be of help (734) 238-0800. Best of luck to you.

Jerimy Schilz

Dear Rose:

IVIG and plasma pherises do not actually cure the damage caused by GBS. They merely stop the immune system from attacking the myelin sheaths of the nerves. Only time and nature can cure the myelin sheaths. If your brother isn’t getting worse, then the IVIG has done it’s job. Plasma pherises will simply wash out several thousand dollars worth of IVIG out of your brothers system. The IVIG will stay in your brothers blood plasma for 3 to 4 weeks and will protect him somewhat from opportunistic infection.

Pain from GBS is a result of cross-talk between nerves, and not from the firing of pain sensors at the end of the nerves. Anti-epilleptic drugs like Neurontin do a much better job of reducing pains than narcotics because they electrically insulate nerve fibers. Neurontin will treat the problem, narcotics treat the symptom.

As for your brothers decline, I would want to explore if it is, in fact, active GBS, or if he is experiencing a setback or worsening of symptoms as a result of too much physical therapy. With GBS, the nerves become so inefficient that the energy drain leaves very little energy for anything else. After having too much physical therapy, he may not have any energy reserves left. The rule of thumb is that one should never do any activity which takes longer than 12 to 18 hours to recover 100% of your energy reserves. One hour of physical therapy three times a week seems to be a realistic schedule. GBS is a nerve problem, not a muscle problem. Exercising muscles which have inadequate nerve enervation does nothing except making matters worse. Perhaps your brother’s medical advocate should seek physical therapy from someone experienced with GBS.

Rose, please take good care of your brother, you and your family will be in our prayers,

Lee

Hi Rose,

I’m with the others thinking he should be back in the hospital for closer monitoring. He might not have hit the plateau of the GBS progression and that is why you are seeing a decline right now. GBS stands for “Get Better Slowly”, it can’t be rushed and it takes it’s own darn time in doing what it wants to.

Just keep telling your brother about all the success stories here to encourage him.
Call Jerimy, he’s a great guy and as he said he is the Liason in that area.
Maybe your brother would like to talk to Jerimy himself, it’a always good to hear from someone else who has been where your brother is right now.

Wishing your Brother The Best.:)

Rose,

So glad you found our site. It will probably provide more information that you can usually get from the medical community. GBS is rare, few doctors have experience with it, and the symptoms, presentation, and after effects vary greatly from person to person.

I agree with Lee suggestions, and would add that your brother should be in a hospital setting, especially if he’s having trouble breathing. GBS patients can stop breathing and he needs to be closely monitored.

Also, it sounds like he’s getting way too much physical therapy this early. Too much can cause a setback. Remember that this is a disease that heals very slowly. One of the difficult things about it is that movement that used to take just a little effort pre GBS, requires enormous energy post GBS.

If you haven’t already registered for the physician’s information packet on the main GBS Foundation website, please do. This info. will be sent free of charge and can help to educate his caregivers.

Best wishes to your brother and hope he gets good care.

Welcome Rose,
I am very sorry to hear of your brother’s GBS.

For myself, I had approx. ten days of IVIG treatment with my GBS with no improvement and I was going downhill with pneumonia, and a collapsed lung. Plasmapheresis was started and I had [U]immediate[/U] improvement. I had ten sessions of plasmapheresis in total, five to start with, I was regaining use of my hands again, and then I caught pneumonia again, had to go back on the vent and I was back to square one with my GBS again, completely and totally paralyzed again. Five more sessions of plasmpheresis resulted in my continued improvement. I am not HIV positive, but I have read of the association of HIV and GBS, in the medical community it has been documented since 1985.

Below is an article I found online regarding treatment of GBS in HIV positive patients, keeping in mind it is from 1992, it does discuss the use of prednisone which I know is not recommended in GBS these days, CIDP yes, GBS no., but it is an interesting article as it does discuss plasmapheresis:

[B]Treatment of HIV neuropathy with plasmapheresis and intravenous gammaglobulin: an update[/B].

Int Conf AIDS 1992 Jul 19-24; 8:95 (abstract no. PuB 7281)
Kiprov DD, Stricker RB, Miller RG; California Pacific Medical Center, San Francisco.

——————————————————————————–
“Patients with human immunodeficiency virus (HIV) infection may present with a variety of clinical syndromes that appear to be the result of immune dysregulation. One such syndrome is inflammatory demyelinating polyneuropathy. This peripheral neuropathy may occur as an acute illness clinically resembling acute Guillain-Barre syndrome or it may have a more chronic course. Autoantibodies against peripheral nerve antigens have been identified in patients with HIV-related polyneuropathy. Both the acute and chronic forms of HIV-associated neuropathy respond to therapeutic plasmapheresis. The initial response rate is approximately 80%. As in many other autoimmune conditions, some form of drug immunosuppression is necessary to control the rebound phenomenon and sustain the short-term effect of plasmapheresis. Use of immunosuppressive drugs and cytotoxic drugs in patients with HIV infection is controversial, however, due to concern over additional immunosuppression by these drugs in patients who are immunodeficient. We have used plasmapheresis with or without corticosteroids in 15 patients with HIV-related neuropathy. The initial response rate from plasmapheresis alone was 80%. Prednisone alone as a maintenance therapy failed to control relapses in all but two patients. No side effects related to the plasmapheresis treatment were observed. All patients who were treated with prednisone experienced side effects related to the steroids. Bone necrosis was seen in three patients, two requiring total hip replacement. No significant immunologic changes or increase in frequency of infections were seen in patients on corticosteroids. Recently we have treated 12 patients with the combination of plasmapheresis and intravenous gammaglobulin (IVIG). IVIG is introduced after an intensive course of 6 to 9 plasmapheresis treatments. The maintenance is usually given on a monthly basis. Our results with this combination treatment have been rewarding. Relapses are less frequent, and in some patients we have seen remissions of more than 6 months without any treatment. If properly administered, certain brands of IVIG have minimal or no side effects. It appears that the combination of plasmapheresis and IVIG is a potent immunomodulatory therapy for patients with HIV-related neuropathy.”

The link for this article is: (Link deleted by Administration)

sending my thoughts and prayers to you and your brother,

cg

Rose, I think it’s 6 weeks wait time, but not sure. Hopefully someone else will know the time frame.

If they gave him Plasmapheresis now yes it would wash away the good antibodies.

Rose,

You guys call me anytime if I can help. Also let me know which hospital he ends up at. My thoughts and prayers are with you all.

Jerimy

Rose,

I myself have had 8 IVIG’s and my doctor had told me that it only stays in your system for 28 days. It was 1 month after my last IVIG that I started my 5 treatments of plasmaspherisis. I hope this information helps and take care and sometimes you have to be pushy with doctors. I am also on 10 mg of prednisone I started out on 40mg everyday. I started out as having GBS/ but it developed into CIDP. I hope this information helps.

Take care.

Don

Hi,

I initially responded well to IVIG, but it quit working for me. Next I tried infused steroids, oral steroids, and then plasmapheresis. They all worked at first, but after a couple of treatments I was worse then when I began. For 10 months I went up and down in between treatments untill I became completely paralyzed and on a ventilator. Fearing for my life they finally gave me 6 months of a chemo called Cytoxan and 2 years of an immunosuppressant called Cyclosporine.

For some reason some people stop responding to the treatments, and being a 20 year old girl they really did not want to do the other treatments untill I was lying in my death bed. However, I beleive I would not of become so ill if they had not refused the other treatments so early.

If thier is not much response to the other treatments I definitely recommend Cytoxan. I noticed immediate improvement after my first treatment. Yes my hair fell out and I did not always feel great, but it was well worth it. Now, 2 1/2 years later I am able to do almost everything again, even walk without assistance.

Take Care, Your family is in my prayers.
Emily

In the first week and first hospital I received 5 IVIG treatments and did not respond….I was then transferred to another hospital were I could receive the plasmaspherisis every other day for 5 treatments….I did respond the way they wanted to that. But like the others I did hit bottom before the GBS started to reverse.

although it is an individual’s choice, i say not to flu shots. take care. be well.

gene gbs 8-99
in numbers there is strength

Rose,

He and your family are in my thoughts and prayers. In 2000 I was also ventilated and in very bad shape. They will be able to better keep him stable on the vent while they treat the GBS. Call me anytime if you need to.

Jerimy

I am sorry to hear your Brother is having difficulty and had to be put on the ventilator. I have to tell you that having you there as this happened made him feel loved and secure. He knows that you will all make sure he is taken care of. I lost track of time during this time. I don’t remember anything once I was on the ventilator and got plenty of rest. I felt no pain also. When I did become conscience, I felt better just from not havng that labored breathing and I knew that the GBS was starting to reverse. I understood I had hit bottom like they said I would and that I was coming back from a very scarey time of seeing my legs get weaker and weaker and my arms not wanting to repond. I seen the continual buzz of the ICU units and all the monitors from other rooms going off. Except for my double vision and not being able to close my eyes, not being able to speak was terrifying. So make sure he is getting his rest…lots of rest. You are not able to get much rest in the ICU….too busy! Be there for him and have those alphabet cards so you can correspont with him and be patient. Don’t be alarmed when they are not able to give you a stable condition in ICU. If he did not need that kind of care he would be moved to another unit. Remember all of us had different feelings with being touched and lotion put on our skin and receiving baths from strangers. Not to mention all the other things they have to do to keep us clean and able to be as comfortable as possible. They will start to move his positon so he does not get bed sores every couple of hours. It is very hard to get sleep while in the ICU or any unit of the hospitals. It is always daylight in them. Noise all day and night long. People always coming in to ask questions and check vitas or take blood. I got a chest xray every morning at 5:00 A.M.. Even if I had just got to sleep at 4:45 A.M.

As the days go on you will figure out what he needs to you do for him and we can give you suggestions. Right now just be there for him and pray in any way you wish. We all will only have good thoughts for you and your family right now. You all need to take care of yourselves too! There is no set time frame he will wake up or how long he will have to remain on the ventilator. I am sure other systems have shut down also now. Digestive system like bowel movements will not occur. His mouth and eyes will become very dry. Ask if they are spraying his mouth with a mist. Or if they are putting drops or squirting a cream into his eyes to keep them from drying out.

Once I come out of being medicated I remember being so HOT I could not stand even a sheet but did keep it on certain parts of my body to stay modest. It is hard to explain but they had my hospital window open and it was 16 degrees outdoors…I was sweating due to the nerves next to the spine that control body temp were being effected. I felt like the sheets weighted a ton and my skin was giving me all kinds of sensations like itching, pinching, numbness, from hour to hour…day to day it kept changing. Later when I was feeling better it went in the other direction and I was cold all the time. In either case I was not able to move the sheets to get uncovered or covered. But ask and set up a system where you rotate visits. Don’t everyone visit at once. Mentally just a constant conversation can be very exhausting for the GBS patient.

I am sure others will add to this thread from their experiences. Remember this is a very slow process! Rely on the Nurses to answer your questions, but get a very good relationship with the Doctor in what he is expecting or watching to happen next to get your Brother to the next level. It gives everyone something to look forward to.

Rose

I wil be praying for your brother and sending good thoughts his way.
There were so many people here who were on a ventilator and are still here to tell their stories and help other people. Please try to be positive for him, don’t talk about your being afraid for him in his room, don’t cry in front of him either, it makes a big difference to the patient when you and family members are upbeat in front of the patient.

Talk to him just like you would be having a normal conversation.

🙂 🙂

Rose,

So sorry to hear of your brother’s condition. My daughter Brandy was the one stricken almost 7 years ago and like your brother received IVIG improved and then the bottom fell out! Like Jerimy, we too are in Michigan, Clinton Township although Brandy is currently in Lansing (MSU – taking summer classes). Please feel free to email me directly and if you think a visit to your brother would help, we will come and visit with him. Brandy has recovered 95% with just a few remaining residuals – and I am thankful every day!!!
Keep us posted and feel free to email me, [email]MKBrideau@aol.com[/email].

~Maggie~

Hello All,

I have been Frank’s friend for 21 years. I’m extremely thankful for this forum and the help you’ve all provided Rose in dealing with Frank’s situation. It is amazing and frightening how uninformed the medical community is. I hope you don’t mind me hanging out here, as I’ve chosen to delay visiting Frank until they are able to stabilize his heart and respiratory rates.

I was able to see him briefly Saturday before he coded. He was very anxious and feeling extremely hot. He wanted me to hold his hand, but when his palm began to sweat, I switched to the other hand, which was just as hot.

[QUOTE=LadyKITUSA]Once I come out of being medicated I remember being so HOT I could not stand even a sheet but did keep it on certain parts of my body to stay modest. It is hard to explain but they had my hospital window open and it was 16 degrees outdoors…I was sweating due to the nerves next to the spine that control body temp were being effected. [/QUOTE]

Thank you for the insight. There is a fan clipped to his bed. Can you suggest anything else that helped you stay cool?

[QUOTE=LadyKITUSA]
But ask and set up a system where you rotate visits. Don’t everyone visit at once. Mentally just a constant conversation can be very exhausting for the GBS patient. [/QUOTE]

This sounds like a very good suggestion. Although it seemed Frank was on the verge of panic Saturday, he did keep trying to talk to me. I asked him not to talk, just listen. I hope the rest of the family and friends will heed your advice, Rose, and limit or postpone their visits.

He asked me to speak softly as my voice was hurting his ears. Is sensitivity heightened with GBS?

Again, thank you all for the great information you’ve provided here. It really helps to hear your individual stories, and armed with the knowledge and suggestions you passed along, Rose has been brave enough to fight for Frank’s best interests and probably saved his life.

Hang in there, Rose. Let me know if there’s anything, anything at all I can do.

It is hard to remember the whole thing and post it all at once which is probably really good because when you are the caregiver it is hard to remember everything. When you discover a sweaty palm it might be nice to use a damp cloth and wipe down the palm and the fingers. Sometimes that hurts like you are operation on the hand without any pain killer. So ask the patient. Develop a series of eye signals for lets say yes and no and have them point to a picture or cards with words that might make the process of spelling out each word a little quicker. All this is very exhausting and the 20 questions should not be the way you approach it. Anything that causes frustration is both mentally and physically exhausting. Works against their body trying to heal.

Yes noise can be very very over stimulating. Too many talking at once. TV louder than necessary. Telephone ringing constantly. Down to the monitors going off all the time. Think of it this way your hearing is based on vibrations which the nerves in the ears pick up. Nerves that have been damaged by the covering that protect them is damaged so that can cause the nerves to vibrate or quiver or shake or tremble in the body. I can tell you that feeling is overwhelming! Distracting! Overbearing at times! Being touched can also cause the skin to be over stimulated in the same way!

Once out of the hospital able to go out during Lent to a fish fry at the local church. I got there at NOON The bells in the steeple rang twelve (12) TWELVE times! My body felt the vibrations from the sound and the ground was shaking. That was enough to set of my body trembling and quivering and frozen with this vibrating sensation. Bells stopped, I walked to my table indoors. Ate and come out YES an hour later exactly! I had told my friend what the bells did to me and at 1 o’clock on the dot I exited the church. YEP my feet froze and my friend put her arm around me and laughed! Asked if I was ok and we laughed all the way home. I had never expected sound to be such an obstacle in my rehabilitation. Now I can go to the local stock car track and enjoy the noise. Takes time to desensitize your body to all the stimuli.

Bet Frank can tell when someone is in the room. My toes picked up the breeze from anyone moving around my bed all day long and all night long. Everyone always appoligized for being noisey. That was not it at all! WALK SLOWER! LOL

Sorry people for being a typeaholic today! Posts were all long ones!

I appreciate you being a typeaholic, Kit, as you can imagine, I’m a infoholic, so keep typing, honey. The more the merrier. LOL @ Walk slower! It’s nice to see you have a sense of humor; I’m sure that makes the healing process much easier.

Thanks for all the good advice, Kit. 🙂

Rose,

I am a nurse from your area. I have CIDP but was orginally dx. with GBS. I agree with Jerimy, U of M dept of neurololgy is very experienced at treating this. Hopefully you have contacted Jerimy. My thoughts are with you and your brother, hope the plasma exchange is very successful today.

Pam K.

Sounds like you are doing a great job making sure he is comfortable and it is great that he id going to receive the PP. I hope that does a good job in sending him into a good recovery. It still will be slow but each day you will see that he has 4 or 5 little brags to tell or show you.

As far as managing his visit and needs that is terrific that you understand and leave a tablet and pencil for aids and nurses to leave you notes too! It will help when he needs things from home.

One thing I can tell you is that I missed my dogs during that 9 weeks that I was in the hospital and tried all day to think of a way to smuggle them in. I finally had my husband bring in a stuff animal that would keep me company. I am 56 but it did give me something to handle. I made sure I could touch its feet and pet its head and pick it up as I got strenght and movement back. It was also used to keep my head from falling side to side since the muscles were very weak. Also made a good conversation piece.

I had trouble with it sometimes jumping off my lap and landing on the call button for the nurses. That happened several times during the night. Nurse would ome in “CAN I HELP YOU?” I was sounds asleep. I would appoligize and blame it on the dog! LOL It sat on my table next to my tray when I ate! It sat on the bottom of the bed and watched me go thru rehab. If I left the room it went with me in the stretcher or in a wheel chair. It even got to ride in the pocket on my walker. All the Nurses and Aids and even the Doctors knew its name! If they did not see it they asked. Before the sheets and blankets were removed from my room they asked where SHE was located. Really helped me get thru that last month or more and thru all the holidays!

Best gift I got was my friend had the beautician come in and cut my hair and make my face look wanted! Got rid of the COOKIE DOUGH I had for hair from those dust shampoos. OK powder shampoos. No one looks good with Guillain Barre Hair! Second best gift was the FREE coloring book and crayons my husband got at our favorite resturant and brought in for me. I actually did color in it to pass the time away and get my hands to be coodinated with my eyes that were still giving me double vision. TV and reading were difficult. Filling out a menu was another challenge later on. One gift that was so much appreciated was when my friend come in to visit during the day because my husband worked. She would open my cards and read them to me and answer the phone for me and hold it to my ear! She also read a very funny Christmas story to me that she enjoyed also. We did a chapter a day and if I fell asleep it did not matter she just kept on reading.

Enjoy your visits!

My thoughts and prayers go out to you and your family! I had a severe case of GBS, and those treating me didn’t even consider IVIG. You can be very confident in what you read here. This site was my wife’s only source of good information during my illness and I don’t know what we would have done without the help of those who help in this forum.

Keep the faith!

Hi Rose,

Sorry to hear about issues he is having, that is so unacceptable. It would seem like they could rig some kind of emergency call button he could set off using whatever functions he currently has even if it is just a light tap or something. Get a hold of me if there is anything I can do. Take care and send him my best.

Jerimy

Is Frank able to make any noise like a cluck or clicking with his tongue against the roof of his mouth? That is what I did to get attention. The staff understood once I got their attention the first time I realized I could do it!

It took me awhile to even be able to move my hand or fingers to use the “Soft Touch” call button. I could move my hand just a tiny bit toward my hip so that is where we stuck the “Soft Touch” call button. All I had to do was stiffen up my arm and pull it toward my body. Also is he able to move his feet? The button could be taped to his sheet, so he could lift his heel slightly and move it onto the call button. Orhe might be able to have it taped to the side of his one foot and move the other foot to hit into it. Or he might be able to pull his feet together. Or move his head to the side and squeeze the button between the pillow and his cheek. I had very creative Nurses and Aids I guess.

Franks floor or section should have a Charge Nurse who is in control of the complaint department. That might be the better person to ask to do something about all the errors that are occuring. I had many things I was not please with too but I did not report all of them. So make sure if you see some thing you do it for Frank. No reason to get him upset…he does not need that to take away his energy. You will find many frustrations thru all this.

Take care of yourself too!

hi Rose, check with the charge nurse for a mouth activated call light. i wasn’t given a call light the last time i was paralyzed a few weeks ago, until the day after i was able to move my finger enough to push the buttons, then they brought in a mouth activator for me–a day late and a dollar short. don’t take the word of the nurses as truth, go with your gut feelings and listen to what Frank is telling you. there is no excuse for anyone to unplug the ventilator, even if they say it was a mistake. be Franks advocate, he needs you to do it until he gets better. hope the pp helps him. take care.:)

Rose I am glad you are there for your brother. Is he in a room by himself? I know the other night my Dad had a roommate and when he knew my Dad was having trouble he would ring the bell. Then the roomate left at 6pm my Dad was alone. We were worried about him. He isn’t on a respirator but his back surgery and strokes made him hard to move and he couldn’t swallow. One time he was choking abit on his saliva it scare us to hear about it later. But one night we got the nurse put him in the hallway near the nurses station so they could hear if he was in distress. I asked the Nurse if one of the family can stay with him she said yes but she thought it would be better for him by the nurses station in case we fell asleep. Now he is abit stronger I think to press the button and he has another roommate. If your brother is getting feeling in his right hand anyway he can get a bell or something he can drop his hand on to make a sound for somebody to hear him?

You are great makes me think of my brother who will do anything to make sure my Dad is getting the best of care.

Sue

That is great news that Frank is making a little bit of progress each day! The fact that they are changing him over to the trache is great news. Yes he will be more comfortable. Seeing changes each day are a big deal and his attitude should be better as he does better. This is a scarey time and very frustrating time. Once he has his strenght back they will put on the valve to let him speak. Just speaking can take energy out of your body, so they will not rush it.

Hope you are getting plenty of rest also. Take care of yourself! Frank is very lucky to have you in his corner!

This is the time that with myself I was feeling hot and I just felt like I needed my curled up fingers to be held between family members hands to straighten them out. Also they were drying out and they would apply lotion to the. Also my feet were drying out and lotion felt good. I can not guarantee this is how Frank feels, so be sure to ask him. I also needed eye drops to keep my eyes moist. One day I got pain in my leg and I knew it was muscle cramp so I asked they to send a physical therapist in to stretch out my leg a few times. That really helped with the pain. Did more for the leg than taking the pain killers. Also ask if he would like a massage. Just on the surface not a deep massage. You have to be careful not to cause a blood clot. I was able to move my feet from the ankles down, so I was constantly moving them around. Remember everyone is different! Glad you are keeping us up to date with Frank’s progress!

Rose,

My heart goes out to you, what a horrible situation. I think your right about 24/7 family and friends to watch over him, it doesn’t sound like he is being monitored carefully enough. My thoughts and prayers are with you both. Take care.

Jerimy

Hi Rose,

I have to be blunt here, but first, I’ve been right where he is, so I know what he really needs in that 24/7 watch. The main caregiver, in my case my wife, litterally became a nurse while I was hospitalized. By weeks of observing, then doing a bit here and there, to doing RT suctioning, shots, meds, once put my trach back in for me and pretty much everything, taught by the nurses. Thanks to my wife only, I never had a complete bedsore. Because she caught it, not the staff, and I was saved just in time. Bed sores are a huge no-no for hospitals. Did they take a poloriod pic of it? There is absolutly no excuse for that, and that can turn into a bigger problem then the GBS. A caregiver needs to inspect the work that’s being done, not just watch it. Red spots on skin are an indicator of bed sores, and nurses are under law to look for them. The healthcare system did more damage to me then the disease did darn near. The best thing a caregiver can do, is read up, observe, ask questions, then jump in. In your previous post where you describe the vent debacle, the first thing I thought of was he can breath without it, he just doesn’t know it yet. Sure enough, he’s off it. The next step isn’t to be rushed, but tell him when he wakes up sometime, and finds the oxygen tubes all out of sorts and not even in the nose from tossing around, that he can breath without that. I knew 3 days before the doc did that I no longer needed it. Again, thanks to the night shift.

My heart goes out to you and your family. As a patient I am sure I felt the same way as Frank did and I paniced. I am glad he is making progress to be moved to a different unit. It takes time to get to know the routine and everyone’s names and faces. I too got upset with changes but later started to enjoy them because I was moving each time to a place in my recovery to getting home. Remember that you will see little set backs. Some will be the fault of the staff, but most will be from the patient not getting enough rest and in an exhausted condition they panic. Tell Frank to continue to let the staff know what he is feeling and experiencing. Communications is not taken as complaining. Tell the Charge Nurse and if necessary go to the person higher than that. Each patient has a patient advocate that will also act in their behalf. Social workers and Case Workers are asigned to each patient also to make sure they are getting the proper care that their insurance covers. If at any time you feel that Frank needs extra care they can asign a nurse’s aide to watch over him at all times when family members are not available. DO NOT exhaust yourselves while he is in the hospital. You all will be needed when he comes out of the hospital and is at home.

When at home I had a visiting Nurse for a few weeks and also for about a month I had both Physical and Occupational Therapists coming to the house several times a week. That lasted till I could get myself to the rehab facility near my home.

As far as the bed sores since you are not able to lay in every position, for example on your stomach due to the trache, they will move you often. I had them move me every two hours and I still got bed sores due to the skin breaking down. I agree have the people from the Wound Care Department come take pictures and the Nurses should be changing the bandages each day.

Personally I see good in him having that bowel movement. That shows improvement and his systems are starting to return to normal functioning. There is no blockage in the bowel. Tell Frank about the possitive things that are happening. They are all signs in his GBS starting to reverse. You should start to see little things each day happening. As tiny as they may seem they lead to those daily things in our lives that we take for granted.

Rose,

I’m sorry, I wrote a pretty long reply, but it ended up not posting. I just wanted to let you know that I feel for you. Ben had some close calls too while in the hospital. Don’t worry about the “accident.” Just be glad he’s going and isn’t constipated.

When Ben was paralyzed, one of his nurses was very proactive with him and would move his arms and legs for him to keep him active. I think this helped in his rehab because, despite having a severe case, he was walking on his own after two weeks. It probably also prevented him from getting bedsores. (That, and turning him frequently.)

If you haven’t already, please contact Jerimy if you need a shoulder to cry on. He was one of several people who helped me stay strong and positive last year, and you’re fortunate to have him as your region’s liaison.

Thanks,

Shannon

My thoughts and prayers are with you and Frank. If I can do anything to help feel free to contact me anytime.

Jerimy

rose i’m sorry to hear frank is having such a rough time lately. please make sure he is receiving heperin injects in his stomach twice a day. and he has epc cuffs on at all times until he can move on his own. i hope he doesn’t have a pe, they are painful and wierd feeling at the same time. give frank my best. take care. he is really lucky to have you and all the others there for support, that helps in countless ways. keep a positive attitude.:)

I wish I was there to give you a big hug! Here is a cyber one ((((ROSE)))).

Please take care of yourself. I have to remind you that there is no rushing GBS and you have seen that with Frank. BE VERY PATIENT! I think we all can recall having small set backs and we learn that life is very fragile. I had a trache fail. I wanted things taken out and taken off all the time. I had a staff of Doctors and Nurses and Aids that I could not persuade to budge with things before it was time. Then I was frustrated…as time went on I was very grateful they did not give into my whims. It sounds like Frank is doing ok with his slow progress. We all wish it could be quicker. I had many set backs, some of them being my fault. I did not pace myself and mentally was exhausted or physically let myself get run down trying to show the staff how strong I was so I could get home before a certain holiday. That did not happen I spent them all in the hospital. I listened to what the staff had to say and thought….if I only could get home….well let me tell you when I got home it was very hard even with the help friends and family provided. GBS zapped me of all my strenght. Everything was an effort and I mean Every Thing even Thinking! Even with me being 7 month since my onset of GBS I have not got much strenght back. Everything is an effort even now. But I can do many things that 7 months ago I was not able to do! I have come a long way baby! Frank just needs his rest and let his body heal and get stronger. Depression, Frustration and Fatigue are constantly part of my life now and I fight them with Patience, Humor and REST!

Give Frank a hug from us!

Hi Rose,

The swallowing thing is a pretty common problem in GBS patients. It happens because that area is still paralyzed. You should tell the doctors to stop giving Frank those tests if they’re making him worse. It sounds like he’s aspirating. They can put him on a thickened food diet for the time being until he gets healthy again. They could also probably put him back on the feeding tube since he seems to not be on it anymore. When Ben was in rehab, his rehab doctor threatened to put him back on the feeding tube because Ben hated the food thickener and refused to eat anything.

I’m really sorry about all the problems Frank has been having. It sounds like he’s got a lot of complications, and sometimes the complications can be scarier than the GBS. I wonder if they could put him in a medically-induced coma like Ben’s doctors did to keep him from fighting this? It seems to be the only way to get him to relax.

I hope tomorrow is a much better day for you all and that things start looking up for you real soon.

Take care,

Shannon

Hi Rose, I too had a severe case of GBS. I’m also a nurse. I can’t beleive what your brother and your family has had to endure. I read all of your postings and one I would be in touch with Hospital Administration over the accidents, Two you need to be in touch with Jerimy. You need an advocate who can help you and understands. I realize your brother has other health issues, but for that reason alone he also needs optimal care. He needs to be given Range of Motion Excercise by staff, he needs to be turned, he needs to be kept on swallowing precautions, etc… I could go on and on about his care at this point I’m so outraged !!!!! What you have described is unforgiveable and neglagent. I am so sorry that you have had to go through all of this. GBS is a very slow going disease but that doesn’t mean the treatment of it is. Hang in there….. I wish I could see his Tx. and care plan. Better yet I wish I could write one for him. I wish I were closer I would most definitely be there. You’ll both be in my prayers. If you need anything let me know.

Wow, thanks so much for helping Rose through this everybody. 😎 I’m amazed at all the trials and tribulations it appears one must go through during recovery. I hate the hospital Frank’s in and can’t wait for the insurance to clear his way to transfer into the LTAC facility where they’re so much more familiar with GBS and the treatment options available. My friend is an OT and extremely concerned Frank’s not in hand splints. She seems to think his hand function will never return to normal without the resting hand splints. Anyone know anything about this?

Thank you all again. 🙂

Rose,

I am so glad to hear that, I have been following your story and been at a loss for words. I am so glad things seem to be looking up, hopefully they keep improving. Thinking of you and Frank.

Rose,

I am so happy to hear that it sounds like Frank is going to get the care he needs now. Call me anytime if I can be of help, I will be moving over the next 2 weeks so if you need me to get ahold of me and don’t reach me just leave me a voice mail(number will remain the same let me know if you need it) or you can always email me too. Take care and tell Frank hello for me.

Jerimy

It seems that everyone’s case is different.

My uncle is a new victim of GBS. First night (Monday), he had diarrhea. Next morning, he went to the hospital because half of his body was numb, and he felt pain in the neck. The next day, he could not stand and fell. Soon that same day, he could not lift anything with his hand. The day after, he could not move at all and could not breath on his own and went to ICU and got very weak. Last night (Saturday), they put all kinds of tubes in his body. Today, he was out of conscious most of the time. We don’t know what to do…

Rose,

I am so very glad to hear the good news! Hmmmm, mucus blockage, I do remember that, and all I can say is suction, suction, suction, painful but so very necessary. Even between the suctions the mucus is a BIG problem, so I know what you guys are going through.

Rose,

I just read the 6 pages that this forum has taken up. I’m so sorry for everything the friends, family but most of all, your brother has been going through.

Our son is 2 and was dx. with CIDP in December. We had some scary moments but nothing like yours. We say prayers with our other children every night and ya’ll will be in our prayers.

Love, Lori

This post is really helpful. Thank you, LadyK, for typing out so much information. I would never know that little noise can affect the patients. When I visited my uncle, we were trying to talk to him and be next to him, but… after reading your post, I will tell everyone to be careful.

(Good thing that we know better and never turned a phone on.) X(

And Rose, I’m glad that Frank is doing better. 🙂

Hi Rose,

I had pneumonia/collasped partially lung, twice during this same period, on the second time, nothing was working. The only choice was to up the dosage of antibiotics, and hope for the best. I was strapped to a special bed and rotated around until I came into a standing on your head position, then did a half hour stint like that. For several days. That was to get the mucus under control. Unfortanutly, doctors have choices on how they attack such problems, and can be bound by what resourses a facility has, to influence those choices. As an example, my place had a rotating bed just for that kind of problem, and maybe his place didn’t, so he got the operation instead. Then again, his degree of musus blockage might have been greater then mine, and that was the only choice. As you are hearing from the doctors saying they don’t know what, or why, medically this is reoccurring, you still have to understand that something is indeed setting this junk in motion. What does that leave then? In my opinion, the healthcare part of all this. It is a known medical fact, that any tube, or foriegn object inserted into a human body, will generate a reaction from said body. Can be positive or negetive and everything in between, but it will occur. It is also medical fact that any insertion site is a wound, and is highly succeptable to infection and virus and bugs or whatever, until any tube is removed, and the wound site is sealed. Early on in my adventure, I was put in a respitory care hospital. Everybody there was on a vent, or in the process of weaning off one. I was the only one who had GBS in the place. Almost everybody though, had experianced pneumonia or were in the process of recovering from it. This is when I started with the doctor to tighten up the ship from here on out, as far as the healthcare was concerned. Had him write orders to wash hands each time a person enters the room, and get them to watch the wound sites closer, instead of my wife having to tell them. I went so far as to say, because I had a sink in my room, that I will witness them washing hands before being allowed to touch me. Then it was a contant staff reminding job from then on out. I did recover from pneumonia, and I can’t say that did one bit of good, but it was an action I could take and have some control over, when everyone else was out of ideas. This is where over the years I’ve tried to point out why GBS recovery goes so slow. If that was all there was to recover from, it would be a lot faster then it is. All this outside healthcare interference puts GBS on hold to get over those things first. Keeps taking a back seat for the most part. The body is trying to survive first, then when that gets under control, it will move on to the GBS, so to speak. There are some pretty aggressive therapies to get threw this stuff, but I don’t know what’s been tried or not. The enviroment is the leading cause of all these outside interferances, not the disease. I had pneumonia twice, MRSA infections 3 times, a start of a bedsore once, numerous wound sites infected, and the disease had absolutly nothing to do with any of that, other then the catalist to be put in that enviroment, but the healthcare did. Your doctor knows this stuff, so run this by him/her and show that if they don’t have a plan,or something to try, then you do. Also run by the docs, are the meds he is on, contributing to weakness, along with the disease, along with the pneumonia, and everything else? The answer should be yes. Then ask, then how can his lungs get stronger to get cough going and stuff, when he’s being weakend by all that other stuff? Any patient in a hospital electric or manual crank bed, can sit up. By cranking a handle, or pushing a button. Been there, done that. He should be in that position most of his awake times during this. There should be no, I can’t, from anyone. Maybe shed more light, as that’s confusing to me. A lot of the times, it’s not what a person does, but how, that can make a big difference. Finding the right balance is difficult, and open thinking is a must. Maybe he’s on too much pain meds as an example, and by decreasing the intake, he will now have more strength to devote to the breathing area. To effectively get through this, he has to accept some discomfort and major pains along the way, in order to find that balance. Hence my questions above, which are designed to first point out that what the doctor is doing isn’t working, and second, to open his approach up, and just maybe go, hmmm, she might be on to something. If only GBS had a rule book to play by. If only doctors would admit they are winging it as much as we are. There is a mental component to this too. Which he’ll have to bridge down the road. One of the things he knows forsure, and can trust 100% to keep him going, is that machine. What he doesn’t know yet, because it’s unknown till you get there, is what’s going to happen without it? Those kinds of thoughts do play into our recovery, and why I instill in people to trust their body and themselves, that it all will improve and don’t let time ever say otherwise. I flunked enough blue dye tests to know uncertainty can put up a huge wall up in front of that bridge. No pat answers, and it is tough to navigate, but all you can do is take one thing at a time and eliminate it, then onto the next, then after awhile, everything will come back to just dealing with recovery from GBS.

I am glad you are coming here to keep us updated on the situation. I am sure as others that follow can read your posts and be able to understand this illness even more. Racer said it all…depends on the facility and what they have available and what your insurance will approve. Some things that have not been approved by your insurance could be what will help others to recover. It is a terrible situation to be in. The frustration for the caregivers is exhausting and very stressful to watch a family member go thru this. As the patient it is hard for them not to get depressed, frustrated and scared out of their minds. I took it for granted that the resourses a facility had were all the same. Until I was transferred to a different hospital that had the PP treatments. I thought that was something standard they all would have at their disposial. Keep up a good possitive front and get him to think possitive. It is his attitude that has to get him thru this. Getting stressed, exhausted will only slow down a very slow process in the first place.

When I was in the hospital I had the staff come in at times and tap me on the back as part of a rub down. They took the time to do that and at times would smack my back pretty hard to move the mucus around. I agree about the drainage being caused from some of the tubes. But take it as a good sign that the body is trying to clean its self out. I was also told that they have a vest that you can wear that shakes you to loosen up the mucus. I never had to wear it but was told that the hospital had one available if I needed it. I also had many types of beds that turned me and stood me on my head and floated me with air and others that were constantly moving. It was like being on the ocean on a raft. Bouncing over waves. With the double vision I can tell you that the buildings out my window were tossing and turning and it made me ill. But all that stuff has good points so I did not look out the window when the ocean was in motion! LOL Had them stop it whenit was time to eat too! I GOT THRU IT! Hang in there and God Bless you and your family. We will be thinking about you.

Hi again,

The tubes don’t cause drainage, or pneumonia. The open wound with a direct road to the lungs do. The tube just acts as more of an express way delivering stuff from outside the body to the insides. Ladykit knows just what I realized, that all places aren’t created equal. What people need to know is this. Each facility, no matter what, from hospital to resthomes, has at least 3 suppliers they can draw from for anything. What most experiance is hearing that a place doesn’t have something, or isn’t available, and that’s the end of that. The next question should be ‘can you get it?’ What I found was that the person only wanted to get what was down the hall, on site, and call it a day. To get what you really need, I have to fill out order forms, justify it to my boss, then him to the hospital, and so on. Much easier to say not available. Sad, but very true. Anything available to a hospital, is available to you, and insurance should cover anything and everything. The doc writes a script for whatever, the hospital fills it if they don’t have it, and insurance pays. The most complient time for insurance, when it’s real hard to argue anything, is when you are hospitalized. That’s the time to take full advantage. One thing I do know about the healthcare system is, that nobody will ever volenteer up things or equipment, or ways to make things easier or better, and will always take the path of least resistence to get through a work day. Keep asking questions. Hope he gets threw this soon.

Hi Rose,

Having been there, gone through exactly what is described above, GBS, and recovery from GBS, has nothing to do with any of those problems. First, he is recovering from GBS, and he’s not in a plateu. Otherwise, he wouldn’t have passed that blue dye test. Ok? Second, I definatly had GBS, and it wasn’t until month 5 that I got off the vent, and year 3 before I started to climb out of complete quadripligia. You think you’re seeing setbacks now? The doctors too? Keep giving him steroids, and more PE treatments. You ain’t seen nothing yet. Those two alone, will zap enough strength from his body, to not even have a fighting chance, to give GBS some time to heal. The doctors are creating the plateu, not the disease. Throw in the bed sore, and what is really failing him is, the healthcare(nursing) and the enviroment. I don’t want Frank’s direct number, I want his primary doctor’s direct number, then I’ll call. The problem doctors are having, is Frank, just like happened to me, has fallen outside the box doctors know about and have seen and read about. We should be seeing improvements by now! Well, who says? The book? What do you know about that 20% to 5% figure, that the phisicians reference guide doesn’t address on GBS? I sure know what goes on in that precentage range, because I’ve lived it since day one, for 7 years now. I worded this, in hopes that you will print this off, hand it to his doctors, and just say “please read”. It just may make them think a bit outside the box, and get Frank going forward. In a nutshell, Frank has multipul issues going on at the same time, and Frank and the doctors are working on them all at the same time, expecting results on all the issues at the same time, and everybody is down to guessing and looking for other diagnoses. Everybody needs to step back, slow the train down, and start addressing issues one at a time. Outside of rangeing his limbs and joints and tendons, there should be no therapies until all the other issues are cleared up. I never understood why they put a person in a phisical therapy, with outside the disease injuries, then wonder why the patient’s mood and want isn’t there. Keep blaming the disease is so convient. It just may be all those issues are grinding on the person so much, creating more pain, which causes shut down in the want department. Approaching any PT, a patient must be as comfortable as possable for theripies to be fully effective and benificial, or the mind won’t let those benifits in. I was doing full PT workouts, in the gym, with vent machine and tubes connected to my throat, IV lines capped off and hanging off my arm, in only that loose hospital gown. I had so many pillows around me, under me, beside me, from bed to wheelchair, to gym, to matt, and in reverse order back into my room bed. I looked like I was sucked into the midscection of the Michlin Man. I got comfortable as possable. This was at month 5 this started, very slowly and cautiously. Frank needs to only know and hang onto two thoughts. It will get better if he only wants it the most, and that he’s in this until he gets to where he needs to be back in life. In other words. Coming to grips with time, has to be settled now. I afforded myself all the time I have left until dirt is thrown on me, to get better. Get that time mental pressure, that something has to, or must happen within weeks, off his shoulders.

Rose, i’m so sorry for the problems Frank and your family are having. I hope you all can rest assured that Frank is getting all the help he needs really soon. Frank and your whole family are in my thoughts and prayers. please keep us updated, and don’t give up on the positive attitude. give Frank a hug for me. take care!

Hi Rose,

Please understand this part of the system, which you have just stated above, that is the most ‘stereotypical’ thing that happens to loved ones, caregivers and so on, in times of high trauma. Doctor’s blame insurance companies. This is how emotional trauma, that’s going to be heeped on them by their patients and multipul loved ones, is deflected and handled. Think about it. A doctor has 15 to 20 of you a day. Now take that emotional trauma heeped on you, and repete it every day for the next year. You’d do the same thing. Human nature. Not one patient can be moved, without a doctor’s signature. You said the majic word, that for 6 years now, I’ve been saying is one of the two words that are the deathnell of insurance. The first, ‘platue’, and the second, ‘maintenence’. In your posts above, you repeted the first word many times, and I know, without one shread of doubt in my mind, that you heard it first from a doctor. More specifically, from an utterance from a PT or OT maybe, then they wrote it down in their report that they do every two weeks, then they say it to the doctor as he gets a verbal update 5 minutes before seeing the patient, handed a copy of the PT report for his file, then the doc rolls in the room and says Frank’s platued. Now, at this point, knowone’s, I repete, knowone’s, insurance company has been informed of anything. It only took once, shutting down my therpies, to catch onto this. The doctor either has already signed, or is about to sign a paper, that in short order, will be faxed to your insurance company, saying you have platued. The doctor just started the clock on the patient’s remaining time in that facility. I would also be so boldly to say, that the therapists and doctor new this was going to happen, about this same time frame, one to two weeks before you did. On a particular day, the trigger was pulled, which by law, has to be at least 72 hours advance notice, and in weaning off vent cases, 24 hours advanced noticed that you are being moved. Again, a trick in deflecting all that emotional trauma on them. They get the insurance company to take that. When this hits the insurer, from that point on, they follow that policy, and payouts and coverages, to a tee. This is what you or the patient have been paying for all these years. It’s only fair to the insurer and the insuree to abide by a black and white agreement. Why I tell people to really read your coverages carefully, and get an understanding of how they use words, think a grand a day in hospital costs as a minumum, and you will see a time table come right out of those big dollar figures we all skim over, feel good about, then toss the booklet. In other words, I can read over your policy, or anyone’s, and tell you within 5 days, when the doc is going to start saying platue, or maintenence, when a patient will be moved if there is a place to be moved, where they will be moved to, how many therapy sessions in PT, OT, RT, and every other T, I will get in each facilty and so on. As another example, you mentioned above, is talk of a resthome. His policy says, in dollar amounts or otherwise, just how long he can be in a resthome before it becomes his bill to deal with or get out. Might be good to know when planning out therpies, treatments, possable in-home care needs and therapies. Most just take the words out of a social service person to generalize your insurance policy and coverages to you, and that’s the gospel. Been there, done that. Only once though. When I hit the resthome, I knew I had 6 months to get a whole lot done, before I paid, or left. Let’s see….bankruptcie or go home? Hmmmm. Knowing an insurance policy, can improve care and quality. But you have to know it and ask for it, because not one doc, social worker or anyone who can generate a check, as easiest as possable to get threw a work day, won’t say or tell you a thing. Frank’s insurance case worker didn’t do one thing that wasn’t doable within his policy. That person moved money around to deflect the heat put on them. Should the doctor have been reminded of these things, that person could have ordered a different path or approch or method, keep him there a few more weeks or whatever, completely at their descression. Hospital rules tell the doctors to move patients at first possable oppertunity. Again, platue and maintenence are two oppertunities used quit often. Not one insurance rep has been over his bed, signed an order, dispenced a drug or therapy, right? They get a signed by his doctor order, saying this person no longer needs this level of care. You are now free to exercise your policy in effect, and cover costs with the amounts in said policy. Tell us what place his amounts will cover, and we will sign orders to choose between those places. Clearly, the doctor is at the tip of the spear. I found a way to head all this off at the therapist level, before the doc ever heard those two words again. That’s another long story for another day. I only had GBS to deal with. What I just covered is more for everyone to get their minds around, and understand, to get a better position on the healthcare curve and system, then they have now. I was fortunate to have resourses and understanding somewhat, and by observing and speeding up my learning curve while in the system, I was able to get 3 continuos years of theapy of all kinds, when I saw people getting a year and a half with the very same coverage. I knew before the doc said one word, that my clock at each pioint, was coming to a close. Because 4 weeks before, I pinned the doc down and asked if there has been, or will be, a closed door meeting discussing my future, and where I might be moved. You should have seen the looks I got. Ahhhh, well yea, we’re putting together a meeting next week as a matter of fact. Just won’t tell you the decisions made until the last minute, but we’re having one. Ok, didn’t say the last line. So, I stayed ahead of the curve, and that helped planning on what I will really needed in those time frames, how it’s going to get and be done, and who was going to do it.
Frank’s got a lot going on. At this point, choices are limited. Doctors are stuck on policy, and not true needs. You can’t, and won’t, change policy, but what I did was change methods and thinking. My only choice really. I put it squarely back on them. You mean ‘your’ methods and approches and therapies aren’t working, that you have chosen to try on me? Is that all you got??? Of coarse it isn’t. Then lets try everything you haven’t tried yet, and see when platue comes in again. Let’s try things my way, with my definitions of improvements, and see where it takes us. I also take full responsability and consequences of outcomes, and tell myself right up front, there will be no blame for anyone. What was being done up to this point wasn’t clearly working. Shut down by therapists and doctors, with no offer of anykind, about an alternative method, approch or offer of other types of therapies or machines. So I offered it. To me, not them.
I’d just remind the docs that steroids do produce muscle weakness as a side effect, he has a neuromuscular disease called GBS, where steroids are counterproductive and not used in that protocal, the PE treatments are very hard on a body regardless of disease, and all that alone, can produce just what you are seeing laying in the bed. Maybe the GBS part should just take a back seat for awhile, concentrate on staying even with the HIV, clear up all the outside junk, with the bedsore and weaning from all breathing stuff, the top 2 priorities, keep an eye on the other stuff, but until the first 2 priorities are complete, let’s start there. My first goals were to start getting everything attached to my body, off my body, starting with the vent. Three years later, I took the last pieces off, my AFO’s, and never looked back after each piece was removed. Just like the diets, they’d all work if people quit getting off coffee, cigs, alchohol, M&M’s or whatever vice a person has, all at the same time. I do know his body needs rest, and it sounds like he’s not getting much. Rest now, is for the body to sort things out and find out where it stands, and what it needs to do first. Keep throwing stuff at the body, it’s just at war all the time. That can be exhausting. I know this is much more complicated, and there are facts and figures too numorus to put here concerning Frank, but I do know the pressure and frustrations an angst the system can put on loved ones and patients. About week 2 of my 10 months in hospitals and resthomes, I had one of my first very sobering thoughts. My god! Whatever hit me didn’t kill me. Now the healthcare system is trying to finish the job this wierd disease didn’t do. Game on.

[FONT=Georgia][SIZE=3][COLOR=darkorchid]Hi, Rose. Like Marc said, plateau-ing is the ‘kicker’. That word is the halt to PT.[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]Maybe……[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]There is always, ALWAYS, a way to do everything. Including beating the plateau they say Frank is in. IF, indeed, Frank is at a plateau, there are other forms of PT that can be done to build his strength in other areas while waiting for the plateau-ing area to regroup & get ready to progress again. It takes a creative PT to think of the exercises necessary AND, just as importantly, NOT WRITE OFF THE PATIENT BECAUSE THEY ARE NOT PROGRESSING FAST ENOUGH, thus ‘plateau’. [/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]The medical field gives up much too easy.[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]Best of luck to Frank & you, caregivers. Caregivers suffer as much as the patient through this.[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]Also, please use Jeremy as your ‘soft place to fall’. He is an awesome liason & chuckful of knowledge & good ideas![/COLOR][/SIZE][/FONT]

Hi Rose,

Just wanted to let you know that I’m praying for Frank and for your family. In the reading I’ve done on GBS, it’s my understanding that HIV and AIDS could cause any sorts of neurological illnesses, but then again, so could the flu. I think you’re right to go ahead and pursue the GBS at this point. Like I said in a previous post, my fiance had pneumonia from GBS, and it, unfortunately, doesn’t seem to be all that uncommon.

Best wishes,

Shannon

Hi Rose.

Just wanted you to know that you both are in my prayers. Contact me anytime if you need to. Take care.

Jerimy

Hi Rose: I have to tell you that you have to hit rock bottom before you get up. I did, the last PV treatment almost killed me, I had a severe reaction to it and just barely made it before they coded me. From all the news I read it is your own body that fights back. Your brother has gone through a lot, but with your help, medical, and all our prayers he will return to good health. It is going to take time, a lot of it. JOan

[QUOTE=Rose]Hi,
My brother was recently diagnosed with GBS, it all happened so fast. He had a throat infection, was given amoxicillian – and supposedly had some bad reaction to it and contracted GBS. In 1 week he went from tiingly numbness to falling down – having no feeling in his legs. He was diagnosed quickly (with spinal tap) and was immediately given the IVIG 5 day treatment. He seemed to be doing better – so after 2 weeks they tranferred him to a Rehab. Facility. …[/QUOTE]

The EXACT same thing happened with me when I came down with GBS! I had really bad tonsilitis, and later found out I had mononucleosis, but the GBS didn’t begin (tingling in my feet) until about 3 or 4 hours after I had taken the first dosage of Amoxicillin that the doctor prescribed for the sore throat. I wonder if I had a reaction to it that brought on the GBS? That was a Thursday around noon, and by Sat. morning, I could not stand on my own. I hope and pray your brother is doing well. It can be a frightening experience in so many ways.

Dear Rose,

We have been keeping Frank and your family in our prayers. I am so happy to see that he is able to speak and to eat! Wonderful improvements and an answer to prayer! 🙂

Hi Rose,

A KFC near by? Those mashed potatoes are smooth as silk, and was one of my first outside treats. Beat ice chips for 2 months.

PLEASE READ MY STORY @ [url]WWW.ABOUTGBS.COM[/url] STORY # 2 ALONG WITH OTHERS

BEST OF LUCK TO YOU BOTH ! AFTER READING POSTINGS IT ALL CAME FLOODING BACK TO ME AND I WISH I COULD DO MORE ,,,BUT THATS WHY I WROTE MY STORY FROM MY BROTHER’S NOTES AND E-MAILS!

Hello Rose,

Wanted to see it is going now? I have just joined the forum and really became interested in Frank’s story. Can we have an update? I,too, had many issues with medical caregivers when I was in hospital, but also great experiences. I’m praying and would love the opportunity to talk with him!!!!
Nat:)

Dear Rose,

Okay, I am new to this discussion board too. My experience seems to match your brothers to some degree. I came down with GBS in Singapore while traveling on business. Was diagnosed very quickly by a neurologist using nerve conduction tests. I entered the hospital and was given 7 days of IVIG. We believed I had reached a plateau and decided I could travel home. At that time I was mobile with a walker and very limited upper body involvement.
The travel home took a significant toll and I went further down upon my return. I met with a neurologist locally and he felt the treatment in Singapore was appropirate and we decided to just watch my progress for a couple of days. Unfortunately, I continued downhill and ended up with no control over my legs. We then initiated plasmapheresis and had a series of 5 treatments. I saw improvement after the third treatment and continued to improve over the next several days and could again move with a walker. Thought things were on the right path. However, I went backwards again, not as far this time, and plasmapheresis was started again. I did four treatments in-patient and then started outpatient plasmapheresis. Am now on a cycle of every other week. Am also taking Imuran.
Based on my experience I would try to initiate plasmapheresis as soon as possible. It was a significant step forward in my recover and each time I saw major improvement after the in-patient stays.

Good Luck and God Bless

Rose, what wonderful news about your brother’s progress! That’s what we love to hear. You both remain in my thoughts and prayer’s. Tell Frank to keep up the great work. Take care, Vicki

rose,

pt & ot for gbsers must be done non-vigorously or he will have a relapse. no pain, no gain does not apply to gbsers. better get some knowledge folks in there or he is going to be in big trouble. the muscles may need some exercise but the nerves need REST. take care. be well.

gene gbs 8-99
in numbers there is strength

Rest is SO important.

It is taking several more times the energy for damaged nerves to make the muscles work than prior to illness. The recovery time is also much longer.

Make sure the PT don’t overwork him or he’ll have a setback.

Best wishes for his recovery.

Hi Rose,

What’s up with the bed sore? Outside of just getting the body ranged, PT should start from the trunk, middle body, and work outward. That means getting him to sit up on the side of the bed, or sit in a wheelchair for a period of time, and believe me, just doing those two for an hour, will exhaust the heck out of him. Should a bed sore be interferring with things and they got him sitting on it, or trying not to touch the site, then there’s the problem. It’s grinding on him, along with the plain old strain of PT. It’s not the facility that’s getting to him, it’s the new people he has to get used to, pawing all over his body. You now have a male perspective. Another thing to watch in the big picture, that will impact him down the road, is the weight gain. Hospitals pour very high doses of calories in those cans down that tube, and transitioning to eating food will be more and more with hospital food, and when he hits the good stuff, watch out. This is where I lost control. That has to go slow too, to keep pace with his condition. If I had less pounds around my waist, walking would be easier, and strain much less. Please say this isn’t ‘acute’ rehab he is getting. Insurance should have his therapy classified as ‘sub-acute’ right now. Acute rehab is the finishing school in hospitals, before being released home for that type of therapy. Sounds like he’s coming along great and tell him he’s ahead of the game at this point, and just take one thing at a time.

Rose,

I am so happy to hear that Frank is home, please send him my best. Here is a great program for use on the computer: [COLOR=Blue]

nuance.com/naturallyspeaking/
[COLOR=Black] (cut and paste the link)
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[COLOR=Black]Take care, get ahold of me if I can do anything.

Jerimy[/COLOR]
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