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AnonymousDecember 15, 2009 at 11:33 am
Hello all, this will be long but try to shorten it.
I got GBS-MFS in April this year while I was living in the woods for a month.My upper body was all that was affected It started with diarrhea for 1 1/2 weeks then I noticed I couldn’t focus, I was really tired but thought I was dehydrating so tried to drink lots of liquids. My balance deteriorated quickly and my tea dribbled from my mouth, banged my elbow and realized I couldn’t talk well. I thought I had a stroke.
I crawled to my car and drove veerrrry slowly off the mountain to the valley-9 miles. Had to hold my hand over one eye to see and open door to make sure I was on road. I called my friend and she decided to call an ambulance,we were on 3 way calling as they couldn’t understand where I was.
I think I remember being loaded into the ambulance, that was April 26. Around the 26th of May I “woke up”. All I know is what I was told, but I had hole in my neck and belly. They took the trach out around May 28, belly tube was like end of June, maybe July. Started eating reg. foods at the end of June. My breathing collapsed April 27 and I was in ICU for 3? weeks.I was told they didn’t find what I had for 2 weeks. I was transferred to another hospital in town for their better Therapy. Done all the therapies and some more on my own, they let me out on June 3rd. They told me I had made a remarkable recovery in such a short time.
I still couldn’t see, but I could walk on my own. My sight came back July sometime and I could drive some. Still not much balance. Things are going fairly well except for the term I saw here “earthquakes”, couldn’t describe it better. Do these go away eventually? How do you deal with them? I had one in front of my friend and she freaked out. All of these are on my left arm mainly, the shaking is really quite uncontrollable til I can calm myself down.
Most days are good, so I joined the gym next door with my friend and the earthquakes started getting worse/more frequent. I had a really bad one in there and haven’t been back.(embarassed the crap outa me) Took me about 2 days of lying down to get back to “normal”.
My hands tingle all the time and it’s really annoying. My neck muscle on the left side decides to get tight and I have to calm it down to, but it doesn’t just go away. I overdone myself and now my lower back is killing me and walking is difficult. Laying down doesn’t help much as the back of my head and upper back go numb. If it ain’t one thing it’s 2. haha
Anyways, just wanted to know about the earthquakes.
Thanks for letting me rant!
AnonymousDecember 16, 2009 at 4:25 pm
🙂 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
AnonymousDecember 18, 2009 at 1:52 pm
Yes, I have the Miller-Fisher part.My eyes were the first to go that I really noticed and went to balance from there. My legs weren’t affected except for laying in bed for the hospital stay. I apparently overdone it sunday 12/13 and couldn’t hardly walk monday, by tuesday I was crawling and my friend made me go to the emergency room tuesday night, just got out thursday and they could find nothing wrong.
Talking to people that don’t know the disease is banging your head against a wall.. I did receive excellent care and I thank all the Dr’s and Nurses that worked around the clock to figure out what I had back in april/may I asked my mom and she said it took them 12 days to find out what I have. But no one here has ever seen the disease ( they called the Mayo clinic and were gonna fly me there), so trying to get questions answered has been futile to say the least.
That is why I came here, hopefully to understand what happened to me and how to get over the month that I lost, and the dreams I had are very haunting.
I don’t know what was real and what wasn’t, but from what I’ve been told, none of the dreams were true, at least the ones I could talk about.
Does anyone know of any natural remedies for nerve repair? Herbs, maybe accupuncture. I have no idea. This is all new to me as I don’t even go to the Dr for anything but an emergency, so I don’t know the language. I don’t have any pain to speak of and I’m not into taking pills of any sort, I have to be really sick to take an aspirin.
So…..just lots of questions fromme.
Thank you for the replies
AnonymousDecember 19, 2009 at 12:43 pm
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.
AnonymousDecember 21, 2009 at 10:31 pm
Never got the “not enough research” routine. No Dr. here has ever seen it, ran into 1 therapists that had and another had heard of it. Extremely frustrating.
The Dr. that diagnosed it had worked at the Mayo clinic and was in constant contact with them to find what I had, they were frustrated as well and was gonna fly me there. From what I understand he is writing a paper on it, a neurologist, Dr Swanson, I believe, in Missoula, MT.
I am not complaining about the care I received! or really complaining at all. I have never been sick at all. This hit me like a ton of bricks and I’m left with a body that doesn’t do what I want when I’m ready, and if I can do it it takes days to recuperate form it, not to mention the time. A 10 minute job can take hours.
I just need to know how to get on.
“Earthquakes” are the shaking uncontrollably, mainly left side, left hand and arm, Can’t do the fine tuning. I’m “handy” and most times need the steady hand.
In my eyes, this is just a major setback. I’ll get thru it, was just looking for some suggestions to the problems. I’ve never been so helpless as to ask for help. Survivalist here.
AnonymousDecember 22, 2009 at 7:38 am
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.
AnonymousJanuary 4, 2010 at 7:16 pm
Has anyone ever heard of/tried [url]http://www.naturalnews.com/023200_schizandra_Wu_Wei_Zi_herbs.html[/url]
Not sure if it’s ok to post websites.
I’ve been looking for natural things to take. Think I’m gonna try some of these, just wondering if anyone has done any traditional chines herbs.
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New to this…..
AnonymousMay 18, 2006 at 4:25 pm
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. His pain was managed with Vicodin and he began 3 hours of Therapy a day. We started to see some improvement – he was gaining strength and started to move his arms (could feed himself, etc.) However, about 1 week ago he started to decline. He now is extremely weak, can’t move any muscles at all…having trouble swallowing, etc. The Dr. ordered another round of IVIG (what he called a boost) and we found out today that it has been unsuccessful. So, I’m on the internet frantically looking for any information that can help us understand…….tomorrow they will be doing another spinal tap to find out where he is at…….after all the reading I have done – it seems that the Plasma transfusion is the next step. His Dr. doesn’t seem to want to to that just yet, but he seems to be going downhill so fast and we’re all frightened for his life.
If anyone of you can share with me what is happening….we are so confused…I want him out of the Rehab facility and back to in a hospital – I am really concerned……
AnonymousMay 18, 2006 at 4:45 pm
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.
AnonymousMay 18, 2006 at 5:30 pm
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.
AnonymousMay 18, 2006 at 5:49 pm
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,
AnonymousMay 18, 2006 at 5:53 pm
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.:)
AnonymousMay 18, 2006 at 6:39 pm
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.
AnonymousMay 19, 2006 at 12:17 pm
Thanks to all of you that have given me some wonderful advice. It really has been so helpful. My brother is now in ICU and has pneumonia. I’ve spent all morning trying to get him transferred out of Rehab ICU and into either U of M (Ann Arbor) or Oakwood Main (Dearborn, MI) Unfortunately, U of M has no beds available and there’s a long waiting list – Oakwood is where most of his doctors work out of, but they also have a waiting list, however it seems like we can get him transferred there quicker. My brother is also HIV and the hospital believes that since his Immune System is/was already comprimised that’s why he’s having complications and not responding to the GBS therapy? However, is sounds from reading on this forum that it’s common to have respiratory problems due to the GBS……either way, our goal is to get him transferred to a “main” hospital. Thanks again for your continued support and advice – I will continue to read posts and gain more info. Also, I will register for the physician’s info. packet.
AnonymousMay 19, 2006 at 12:52 pm
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,
AnonymousMay 19, 2006 at 12:58 pm
We have been pushing for my brother to have the plasmapherisis, however we keep being told that it will “wipe out” all of the IVIG he has been given, so that’s why they won’t take that step…….He was given 4 rounds of IVIG about a month ago, then another 2 this past week…..
How long do they usually wait before beginning plasmapherisis??
AnonymousMay 19, 2006 at 2:42 pm
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.
AnonymousMay 19, 2006 at 5:08 pm
Please be careful on prednisone – my brother was taking it because of his crones disease and it deteriorated both of his hips – at 41 years of age he had to have both hips replaced – he had just recovered from that about 6 months ago – and now he’s been diagnosed with GBS. Back to the plasmaspherisis – so if he just had a round of IVIP this week – they won’t be doing the plasma exchange anytime soon……I’ll begin hounding doctors in a few weeks about the plasmaspherisis.
AnonymousMay 19, 2006 at 9:16 pm
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.
AnonymousMay 19, 2006 at 10:39 pm
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.
AnonymousMay 21, 2006 at 8:38 am
I wanted to give you an update on my brother Frank. He gave us quite a scare last night…..we did get him transferred to Oakwood Main – however his breathing was extremely labored and last night he stopped breathing – he coded right in front on me, which was devastating…..they ended up putting him on a ventilator and he’s heavily sedated. He’s critical at this point and went I left the hospital they couldn’t assure me he was “stable”. I know many of you have written that this is not uncommon to have breathing problems and end up on a ventilator – but I’m really concerned for Frank’s life right now. I will continue to read your posts – you all have become my “support system” – thank you for your thoughts and prayers…….
AnonymousMay 21, 2006 at 11:57 am
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.
AnonymousMay 21, 2006 at 1:36 pm
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.
AnonymousMay 21, 2006 at 1:52 pm
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].
AnonymousMay 21, 2006 at 2:46 pm
I just got back from visiting Frank – although he’s heavily sedated – he keeps fighting the ventilator and when he sees a family member begins to twitch and attempt to communicate with us – the Dr. has warned us not to play “20 questions” with him – however it’s frustrating for him and us to be able to communicate – he’s trying eye signals – but we can’t seem to communicate. We just keep encouraging him and tell him to rest. I will check into the alphabet cards.
They are doing the plasma exchange at 5:00 today – so I’m really hoping this will work for him.
AnonymousMay 22, 2006 at 5:46 am
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?
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.
AnonymousMay 22, 2006 at 2:40 pm
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!
AnonymousMay 22, 2006 at 4:31 pm
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. 🙂
AnonymousMay 22, 2006 at 4:54 pm
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.
AnonymousMay 24, 2006 at 6:05 pm
Frank will have a total of 5 plasma exchanges over the next 10 days – his progress is slow – but thankfully he is not getting any worse. I think he’s actually been moving his fingers and hand a bit – so that’s good news. We are being very cautious during visits – and yes, even if we creep into the room – his eyes open up. He has the visiting hours taped to his bed and he does watch the clock – so we make sure someone is always there to see him – however, we limit the visit and when he seems satisfied communicating what he needs to (which is usually about 15 minutes) he’s exhausted and goes back to sleep. I’m amazed that even sedated – he still is worried about his home, dogs, etc. – we just continue to reassure him that everything is taken care of at home! That seems to get him back to resting. I even had him laughing a bit today – it was good to see him smile!!
He’s still on a ventillator and the Dr. said if he continues needing it – she will modify it to a “trach.” style Vent. so he can be a little more comfortable and “mouth” some of his requests. The hot/cold situation is brutal for him – we’re trying to keep him as comfortable as possible – frustrating because we can only do that during “visiting hours” – the nurses reassure us they are tending to his needs throughout the day – I think he gets frustrated trying to get their attention.
We ultimately want to get Frank moved to U of M – however right now we want him stabilized – and get thru these 5 Plasma Exchanges. I’m hoping in the near future we’ll get him over to U of M for treatment.
Thanks for all your support, prayers and information – it’s been a tremendous help!
AnonymousMay 24, 2006 at 6:36 pm
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!
AnonymousMay 27, 2006 at 6:03 am
Kit – thank you for the great ideas……I’m going shoot some video of Frank’s dogs today and bring into the hospital for him to see them – I know that will lift his spirits!!! We’re not seeing any huge results yet – trying to be patient. He has 2 more plasma exchanges to go. They are going to change his Ventilator and also move his feeding tube (from nose to stomach) so his mouth/nose will be free and clear – more comfortable – should be easier to communicate with us. His hair stylist came out yesterday and he got a haircut/shave – he was so happy. We convinced the nurse to wash his hair – so he “got the works” yesterday!!!!
I know everyone is different – but how long did it take for you to see results with the Plasmapherisis???? The Dr’s aren’t telling us – so that worries me…I wonder if we should be seeing results right away or is it going to take weeks, we just don’t know. The sit and wait game is draining on my family and I know it’s getting to Frank too.
Thanks to all who are posting replies – it helps tremendously!!!! Rose Smith
AnonymousMay 27, 2006 at 8:29 am
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!
AnonymousMay 29, 2006 at 5:19 pm
Frank has been having a rough couple of days – just having strange things happen in the hospital – yesterday the balloon portion of his Ventilator collapsed and punctured – nobody noticed and Frank was labored – finally a family friend stopped in and saw his struggle – “code blue” was once again called and they had to re-intabate him. He was really scared for his life. Today was his last day of plasma-pheresis, the technician was not the regular one (due to the holiday today) so this person accidentally UNPLUGGED THE VENTILATOR – so she could plug in the plasma pherisis machinery. Again – a family member happened to stop by and Frank got their attention…….
He’s feeling very “defeated” right now and scared for his life. I was able to discuss concerns today with the Doctors and they are alerting the staff of Frank’s very vulnerable situation……
I wasn’t too comforted by the Doctor using the analogy today that ehat happened with Frank’s ventilator yesterday was “like a car accident” – things happen in the hospital – staff members make mistakes……(apparently the ventilator became dislodged/comprimised when a nurse was turning Frank). Aside from being there as much as possible – we feel pretty useless and are so concerned for Frank’s safety in the hospital – he is starting to get some feeling in his right hand and so we’re hopeful the plasma pherisis is beginning to work – however we’re concerned that he’s being neglected and has no way of communicating to the nurses – today the Doctors tried a few different types of call buttons – but nothing seems to be working for him right now – he doesn’t have enough strength to press the buttons.
Any information anyone can provide with the ventilator issue – communicating with the staff in this state he’s in would be most appreciated.
AnonymousMay 29, 2006 at 5:34 pm
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.
AnonymousMay 29, 2006 at 6:42 pm
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!
AnonymousMay 29, 2006 at 7:31 pm
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.:)
AnonymousMay 29, 2006 at 9:00 pm
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.
AnonymousMay 30, 2006 at 5:41 am
Thanks everyone for your great/creative ideas! I’m heading up to the hospital this morning and plan on speaking to the Charge Nurse and hopefully come up with a solution to help Frank communicate with the nursing staff. He’s having his tracheotomy/moving his feeding tube to his stomach procedure this morning so hopefully he will be a bit more comfortable and able to communicate a bit easier…….
AnonymousMay 30, 2006 at 6:25 am
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!
AnonymousJune 2, 2006 at 6:02 am
Frank did get the treach. and feeding tube moved to his stomach – he seems more comfortable and can at least mouth some words to us now. After my meeting with the Nurse Manager – things have gotten better with Frank’s nursing care, he now has the nurse call button at his head – they are being more attentive to his needs and care. He feels safer and so do we!!!
The P.P. was finished on Monday – still no major changes with the paralysis – I know it’s different for everyone – but the doctor made the comment “the p.p. didin’t seem to work” – so I’m confused once again about where we go from this point – he still has penumonia, still on the vent and still paralyzed. The hospital said there isn’t much more they can do for him – so I guess he’ll move soon to another facility and we wait for him to get stronger……..
AnonymousJune 10, 2006 at 7:40 pm
Today was a rough day…..they moved Frank out of ICU yesterday and into a general floor because they had a patient more critical and needed the bed. We are still waiting for his transfer to the Acute Long Term Facility. So, we all had to get used to a new floor, new circumstances, etc. He’s not hooked up to any machines and he’s no longer on the Ventilator – that is the good news. He still has the Treach. and is receiving oxygen. The bad news is today when I got there I found him crying, upset because he had a bowel movement and he couldn’t press the nurse button near his head. I felt just awful. Once they cleaned him up he kept complaining that he felt dizzy – I called for the nurse, nobody came – then 5 minutes later he said he thought he was going to pass out – then he mouthed to me “NEED SUCTION – I’M DYING” – I ran down the hall, found the first nurse I could – by the time I got back he was turning blue and coding…….he had a mucous plug in his treach. They were able to suction it and get him back breathing. It took that situation to put him on a monitor to track his heart/breathing – they reassure me that an alarm will go off if it happens again. We are not taking any chances and back to 24/7 family care, watching over him. He’s getting better, however we’ve had so many close calls and scary situations it’s just awful. He keeps failing the “swallow test” so he can’t have any liquids/foods not even ice chips – he has lost so much weight he’s emaciated. Now he has a level 2 bed sore, that’s our current concern……..Any advice you can offer is truly appreciated. Frank is looking forward to the day he can communicate with you all and help others.
AnonymousJune 10, 2006 at 9:51 pm
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.
AnonymousJune 11, 2006 at 9:08 am
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.
AnonymousJune 11, 2006 at 10:09 am
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.
AnonymousJune 11, 2006 at 7:20 pm
Frank had another rough day – he stopped breathing again during the night, but were able to bag him and get him stablized in a few minutes – luckily a friend was on “night watch” and was able to get assistance ASAP from a Nurse. Today Frank is so weak, just turning him makes him have labored breathing and heart racing. He said he feels that something else is wrong and he just doesn’t know if he’s going to make it t hru the night. It was hard leaving him today…….they did a CT of his lung, they are concerned about an embalism (blood clot) – we were unable to get the results today – hopefully tomorrow. Things seem pretty bleak right now……we need some answers and aren’t getting any – very frustrating. Frank keeps getting dizzy, then says he feels like he’s going to pass out, also his legs are getting very tingly. I would think that is a good sign, that maybe he’s getting feeling back, but he says the tingling in his legs is accompanied by the dizziness and feeling of blacking out. Both times he had this, he stopped breathing shortly after. Now today, he was dizzy all day, tingly legs, but never coded. Hopefully we’ll get some answers tomorrow. For tonight I need to get some rest and know he’s got friends with him tonight watching over him.
AnonymousJune 12, 2006 at 12:26 am
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.:)
AnonymousJune 15, 2006 at 7:30 am
Have a question – trying to understand things…….Frank is doing much better, but been having setbacks – he’s been wanting to eat/drink so the hospital has been giving him “swallow tests” he keeps failing them miserably and the food/liquid he’s tested with is going straight to his lungs……so I guess that’s causing problems…….has anyone been in this situation where you were off the ventilator, so breathing improved, but now the swallowing…
Also, yesterday, Frank requested the type of Treach. where he can talk? Anyway, during the procedure, he stopped breathing and they had to remove it and change back to the old treach, he still had trouble breathing, he coded, but they were able to stablize him – however, now he’s back in ICU. Anyone have that situation with the new treach. that gives you the ability to speak, have trouble with having it put in? Any advice you could offer would be greatly appreciated – all of you help me so much when I’m at my wits end!!!! Frank is becoming very inpatient, he wants to move forward and progress quicker than the GBS is allowing – we want him to slow down, rest, kick this pneumonia – but he’s really getting frustrated…….he is getting the heperin injections and hs the epc cuffs.
AnonymousJune 15, 2006 at 12:16 pm
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!
AnonymousJune 15, 2006 at 6:55 pm
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.
AnonymousJune 15, 2006 at 11:20 pm
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.
AnonymousJune 16, 2006 at 10:56 am
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. 🙂
AnonymousJune 17, 2006 at 6:18 pm
We finally got Frank moved to a Long Term Acute Care Facility – where they have the expertise to tend to him a little better than the hospital he was in before – he just arrived friday night. It took a lot of badgering the insurance company – they finally approved him to be moved. They are still getting used to Frank and he to the facility – but they are already ordering proper equipment for him, tending to his bed sore and preparing for O.T./P.T. So, I think he has a fighting chance to recover being in this facility. His Chest CT showed the pneumonia is just about gone – he’s still receiving oxygen thru the Trache. He’s still extremely weak but can move his hands a bit, so he’s still showing improvement.
AnonymousJune 17, 2006 at 9:17 pm
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.
AnonymousJune 19, 2006 at 3:07 am
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…
AnonymousJune 19, 2006 at 7:19 am
Hello everyone – thanks again for your words of encouragement and support! Frank has already gained 5 lbs. being in this new facility (just since Friday) and looks better – they gave him this new air mattress that actually moves and turns – after 2 hours, he was in a deep deep sleep – best sleep he had gotten in weeks!! So, this new air mattress is definitely a plus!! The pneumonia seems to be gone – still having problems with Trache. mucous blockage – and also swallowing – however the Respiratory therapsits at this place seem to be right on top of it!! We’re really hoping he’s on his way to recovering and pray there won’t be any major setbacks. I’ll keep you all posted.
AnonymousJune 19, 2006 at 7:54 am
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.
AnonymousJune 19, 2006 at 8:13 pm
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.
AnonymousJune 20, 2006 at 7:45 pm
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. 🙂
AnonymousJune 29, 2006 at 8:09 am
I haven’t had a chance to post, been very busy. Frank had another setback – pneumonia/collapsed lung again. They did a bronchiotomy? yesterday and was able to remove the large mucus plug in his lung, so he’s breathing a bit easier now. However, the doctors are concerned because he’s on 2 med’s to thin the mucus and they don’t understand why it has re-occurred. They tell us that if he can’t cough soon, sit up, etc. all this will happen again because all the secretions are collecting in his lungs. He’s extremely weak due to the pneumonia. They are taking great care of him at the Acute L.T.C. facility – the P.T. said she sees great progress with his right arm – he just needs to recover froml the breathing trouble, pneumonia. Still cannot swallow. Does anyone have any advice or experience they can share being in this situation. It seems like it’s a vicious circle he can’t break out of.
Thanks for your ongoing support and encouragement.
AnonymousJune 29, 2006 at 12:07 pm
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.
AnonymousJune 29, 2006 at 12:43 pm
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.
AnonymousJune 29, 2006 at 1:26 pm
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.
AnonymousJune 29, 2006 at 2:24 pm
Thank you Racer 13 & Lady Kit for your responses…..
This facility has been very good about ordering what is needed for Frank’s recovery. They brought in the machine that “shakes him up” to get the mucus moving – which does seem to help – they have a special air mattress that turns Frank from side to side – which is also helping. They are trying to sit him up, but he seems to get very dizzy. He’s only been in this new facility for 1 1/2 weeks – I think he got there with the mucus plug already forming in his lungs (AGAIN). They do have a sign on his door that anyone that enters needs to put on a gown/mask, but we don’t see any of the workers following those rules? I may need to find out why they are not adhering to that policy. They have mentioned to us that his Trache is an “open airway” and all types of infection could easily enter…….
We are quickly understanding that the complications due to GBS can be more serious than GBS itself.
I believe this facility will try to get whatever type of equipment we think Frank needs – they have been good about ordering (having ins. approve) equipment – it’s hard for us because we don’t know what he needs – so that’s why I’m curious what has worked for other GBS patients in similiar situations.
Frank is also HIV positive and the neurologist thinks he’s having complications due to HIV, but I had an Infectious Disease Dr. in to see Frank and he felt that his HIV status is not what is affecting his condition. We keep hearing the staff say that they are afraid his HIV is what’s causing all of this, but from what I’m reading on the Forum, it’s somewhat common to have t he pneumonia, collapsed lungs, breathing difficulty with GBS – whether you’re HIV or not…..I’m don’t want to be naive, HIV is a huge concern, however I don’t think it’s what is causing Frank’s current problems.
It’s really difficult for my family to not only be there for Frank as much as possible, but also play the role of “advocate” for him. We’re always researching, looking for answers – but we know now that we have to stay on top of the medical staff and be sure they are doing everything they can for him. The times they allow Frank to have a speaking valve, he quickly “wins over” the nurses, resp. therapists and staff – he does have them swooning over him – he has that type of charisma and charm – it will work in his favor – definitely – because I see that they want to help him recover and some of the staff are really working hard for him. However, there are still mistakes made and uncaring staff that handles him to rough – don’t pay attention to the messages in his room – so we still go there as much as possible.
Thanks again for your responses – I truly appreciate your advice.
AnonymousJuly 15, 2006 at 10:21 am
Wanted to give you an update on Frank – it’s been a rough few weeks…..the doctors are having a difference of opinion on diagnosis…..they are beginning to think it’s not GBS – primarily because Frank has reached a plateau – not really getting stronger and still paralyzed with minimal movement. His right lung continues to collapse. They keep changing his antibiotics in hopes that they’ll find something that will strengthen his lungs, also giving him steroids. Last week they attempted to cap his trache and that didn’t go well – he wound up back on the Ventilator and they had to sedate him for 2 days to keep him calm. Since then, however he has been showing more signs of improvement – he passed his first swallow test and has been weaned off the Vent – back on oxygen. His lungs seem to be clearing up a bit. His neurologist from a different hospital has been brought in for his opinion and he was successful in negotiating 6 more rounds of P.P. (monthly) – Frank had his first round yesterday. We are hoping that will help him. He is still extremely weak, has trouble sitting in the chair (due to the bed sore).
We were told that if he doesn’t breathe on his own soon, the chances are very slim he’ll ever be able to, I hate hearing that……it’s so discouraging. He was really “down” one day last week and he told the nurse he wanted to go home. She told him they could arrange for Hospice to go home with him and help him live out his final days if that were his wishes. I was so angry – but it will be his decision to make – we want him to keep fighting. He continues to have setbacks, which I know is discouraging. If there is anyone that is willing to call and talk to Frank – I just think if he could speak to someone that has been thru this, that may help him find the strength to continue to fight. He’s in Select Specialty Acute Care Facility in Wyandotte, Mich. The direct number to his hospital room is 734-324-3634. None of us can relate to what he’s going thru and that is frustrating for him. He needs to speak to others that have been exactly where he is…….thanks to anyone that can take a few moments out of there day to give him a call!!!
AnonymousJuly 15, 2006 at 12:21 pm
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.
AnonymousJuly 15, 2006 at 1:36 pm
Hi Racer 13,
Thank you for your response. We all feel pressured by the insurance company – we were told Frank could only stay in this facility for 1 month – so I think that’s been the panick to push him – but his body is not ready. We are so frustrated by that but unfortunately medical care is driven by the insurance companies. Yesterday was 1 month in t his facility and I know they want to send him to a Nursing Home – which he’s totally not ready for.
He has a Nurse Practioner in his corner at this facility. She lives each day calling doctors, pushing for steroids, P.P. and anything that’s going to help Frank. She has been so dedicated to him, we are thankful for her.
As I have stated in my previous posts, Frank is HIV positive. I have read studies that indicate that you can recover from GBS even if you are HIV, however there is something called HIV neuropathy and the easiest way to explain it is that it’s basically GBS symptoms with HIV. Most people cannot recover from HIV neuropathy. So, when they see Frank not recovering quick enough, they are trying to say it’s HIV neuropathy. The infectious disease doctor has stated that his HIV is in check and he’s doing fine – it’s the Neurologist that has been quick to say it’s HIV N. That’s why we brought in the other Neurologist from Oakwood – who agreed to do the P.P. We know Frank has a major strike against him because of the HIV – he’s been so healthy thus far with the HIV. He hasn’t passed the blue dye swallow test yet, only the 2 bedside tests. I think they will do dye test on Monday.
They are pushing with the P.T. and not giving him time to rest and get better. We keep hearing about how expensive everything is, tests, care etc. – his insurance company not wanting to pay – they didn’t want him to go to this facility to begin with – they were trying to stick him in a nursing home. It wasn’t until my older brother called his insurance company case worker and practically threatened them with a lawsuit, then he was admitted to this Long Term Acute Care Facility – THAT SAME DAY.
Frank is so worried about insurance denying procedures, his length of stay approval, having to go to a nursing home, losing his job……..then when he has setbacks it’s just so overwhelming.
Everything I’ve read on this Forum his textbook for what Frank is going thru – he hasn’t gone thru anything different – so to me it definitely seems like GBS. It’s only been 3 months since first diagnosed.
Please tell me – were you able to stay in a hospital / Long Term Care Facility during your recovery? Because it seems like the insurance company can’t wait to ship Frank off either home or nursing home. The case worker at this LTCF is also very dedicated to making sure Frank gets what he needs and stays at the facility as long as he needs to – but in the end it will be the insurance company driving the final decisions.
The main frustration for us is that whenever we try to talk to doctors about his case, they all say that because of his HIV the recovery will be difficult and his immune system was already comprimised to begin with. It’s hard for us to all be positive when we get news like that. As I said above, HIV neuropathy doesn’t seem to have a great recovery rate, but it’s only been 3 months and seems so early to say “well it’s not GBS because he’s reached a plateau”. With the decision to do more P.P. /steroids, I have hope that they see a possible recovery for Frank.
We keep telling Frank not to worry about insurance, money, etc. – just concentrate on getting better, resting, but he’s so worried….
Thank you for taking the time to read my posts and replying to me – it really means so much to me to have this forum – otherwise I’d be completely lost!!!
AnonymousJuly 15, 2006 at 2:24 pm
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!
AnonymousJuly 15, 2006 at 3:54 pm
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.
AnonymousJuly 16, 2006 at 10:08 am
[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]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]
AnonymousJuly 16, 2006 at 7:13 pm
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.
July 17, 2006 at 2:00 pm
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
AnonymousJuly 17, 2006 at 3:40 pm
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.
AnonymousJuly 19, 2006 at 8:39 am
Frank has had a great couple of days!! He passed the swallow test and is now able to eat puree food – a small victory and huge morale boost for him! The P.P. he received last week I believe is helping – he was flipping his hand over and back last night – which is a first…..good to see some movement!
They removed the balloon in his throat and are talking about capping his trache in the next few days if he continues to improve. We are all excited about these improvements and hope he continues down this path. I still think it would help him to speak to someone afflicted with GBS – he feels alone with this syndrome and none of us can relate to him. He does have a speaking valve, but someone has to hold the phone – so calls have to be brief. His direct # is 734-324-3634 if anyone has a few minutes to call and chat, provide support – that would be greatly appreciated!!! Thank You for all your continued support. Rose Smith
AnonymousAugust 2, 2006 at 11:22 am
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!!!!
AnonymousAugust 2, 2006 at 2:58 pm
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
AnonymousAugust 3, 2006 at 7:00 pm
Thank you for your support! Frank will be getting P.P. on a monthly basis for 6 months – the docs feel he’s improving from them. He still has very little movement – although he’s gaining strength – has his trache capped (about 5 days now) and is back to eating solid foods. I’m touring P.T. facilities next week in hopes that insurance will cover a decent place for him. The doctors feel he’s ready for an aggressive P.T. Program – I hope that’s the case! Natalie – if you’re interested in calling Frank – he’ll be at this number/facility until August 11th – 734-324-3659 – he’s always interested in hearing about other GBS related cases.
Thank you for your continued interest in Frank’s case. If anyone has any input regarding electric wheelchairs – I’m interested in feedback. P.T. is recommending we have one custom fit for him – a few reps have come to see Frank – but none of us are “wheel chair experts” – not sure how to know what’s best……..
AnonymousAugust 18, 2006 at 2:12 pm
Wanted to update you on Frank’s progress – he had another round of P.P. on Wednesday and the very next day during P.T. he was able to sit at the bedside for 1 hour (just 2 days before only 5 minutes) it was so good to see him sitting up on his own! His trache. has been capped for a few weeks now and he’s breathing fine on his own – his appetite is coming back and hopefully will start gaining some weight back! He’s got a lot of movement in his trunk area and can flop his arms around – so all good news!!!! We’re trying to get him into a Rehab. Facility – still waiting to hear if insurance will approve – also he’s having a surgical consult today to look into doing a skin graft on the bed sore – I’m anxious to hear if he’ll be a candidate for that – the pain of the bed sore is really holding him back from being able to sit comfortably.
AnonymousSeptember 4, 2006 at 7:42 am
Frank has been moved to Rehab. Institute of Michigan and it’s a great place for him to be……..however I do have some concerns – they are very aggressive with his P.T. and he still seems so weak….I know he really needs the P.T. but he’s having trouble adjusting to a new facility, the vigorous P.T. – he’s exhausted, having trouble getting used to being in a wheelchair, not eating well, etc. – it’s a tough transition right now……the good news is he is starting to have more and more movement! It’s really hard to keep him motivated….
AnonymousSeptember 4, 2006 at 10:51 am
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
AnonymousSeptember 4, 2006 at 12:26 pm
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.
AnonymousSeptember 4, 2006 at 1:52 pm
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.
AnonymousNovember 27, 2006 at 8:15 am
I haven’t updated you in awhile – Frank has finally come home! We’re so happy he’s finally progressing in a positive direction! He spent 6 1/2 months in hospital and finally…..he’s come home. He is 100% dependent – legs aren’t moving (yet) does have hand/arm movement – starting to feed himself. Right now he can’t do much – just kinda sits and watches TV – he starts outpt. P.T. this week – so at least he’ll get out a few days a week. He’s in good spirits (happy to be home). He wants to start using his computer – can anybody recommend software we can install so he can utilize the PC “hands free”.
AnonymousNovember 27, 2006 at 8:40 am
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]
[COLOR=Black] (cut and paste the link)
[COLOR=Black]Take care, get ahold of me if I can do anything.
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