OT and PT for GBS in ICU??

    • Anonymous
      August 14, 2006 at 6:51 pm

      Hello,
      I recently became a member. I was diagnosed with GBS in 2000 and after receiving occupational therapy to speed my recovery I decided to get my degree in OT. With my case, I was never in the ICU. I was extremely fortunate that the GBS did not affect my respiratory system. My therapy took place in an outpatient clinic.

      Currently I am in the middle of an intership for occupational therapy in the acute care setting of a hospital. I have been working with a gentleman who was diagnosed with GBS in February 2006. He is on a ventilator, feeding tube, and can move his head and shrug his shoulders. Otherwise most of his body is paralyzed.

      I am curious, what type of treatments did the occupational and phsyical therapists provide for those of you who spent time in the ICU and experienced full body paralysis and respiratory issues??
      Did you receive splints for your hands?? If so, did you find these painful to wear?? In my experience, GBS can cause severe hypersensitivity. I remember I did not want to be touched due to the pain. Did any of you have this experience? If you had splints did you find them helpful?

      Also, did the nurses provide passive range of motion on a regular basis as well as help you to sit up occasionally?
      What caused the most discomfort and pain for you in the ICU? What do you think helped your progression the most? (emotional support, therapy, etc…)

      I would love to hear from any one who is willing to share. I feel very lucky to have such a great resource at my fingertips (personal experience).

      I wish you all the best.
      Thank you!!
      -Juli

    • Anonymous
      August 14, 2006 at 7:41 pm

      Juli,

      I never received OT in the ICU, only once I went to the neurology ward, and was able to move a little, and breath on my own, did they start with it.

      PT however was different …. I’m trying to think back now. The PT did come and see me, and was usually active in a lot of the suctioning that was done. The patting of the sides to loosen the mucus in the lungs was mostly done by my PT. They also did make boots for me to stop foot drop, however they hurt me incredibly. I dont get the feeling that this was something they did often, because I remember some discussion on how they were going to do it, so I dont believe I had the same quality as they do have today. I vaguely remember the PT doing something with my limbs, it was, as far as I could remember VERY passive (thats sounds strange), but she did come in everyday.

      Some of the things that were very stressful were ….. suctioning, turning – because often the trach tube would pull at my throat which hurt and felt like it was coming out, not being told exactly what they were doing to me and why, nights, (I cant remember what it is called) what I called hose pipe enema’s / nurses having to remove stool themselves 😡 , having the feeding tube re-inserted every now and again and getting it into my lungs instead of my stomach, and the Plasmapharesis. I think I would probably go on and on, but I should stop now.

      If I had known that there were many people out there who had been through exactly what I had, and that things would improve, I probably would’nt have been through the whole thing of knowing I was dying and waiting for that moment. Strangely enough, I was at peace with that.

      Well, so much for my waffle – sorry about that 😮 , im not sure I helped much.

    • Anonymous
      August 14, 2006 at 11:11 pm

      juli,

      you will have to communicate w him to find out if he is in pain. neurontin for neurological pain. as you know, passive range of motion is important. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 14, 2006 at 11:18 pm

      the nurses/pt’s helped me with passive range of motion. i had extreme hypersensitiviy especially in feet and face. i did not wear any splints, but never would have been able to tolerate it.
      in ot, i worked on picking up change off the table, my handwriting (which really affected me emotionally for some reason b/c it had changed so much), activities of daily living you know….eating, picking up pens, throwing bean bags, making a sandwich, just touching my index finger to my thumb…basic, basic stuff. my nurses were fantastic! helped me sit up, shower, feed me, brush my hair….they sent in therapy staff to do most of my passive range of motion. and they did not let a day go by where there wasn’t someone helping me with some range of motion or activity. emotional support was big…..my nursing staff and doctors were wonderful! and i am not close with my family so it was hard. i was extremely scarey but what was reassuring was that it would get better with time. it takes time, patience and hard work.
      back to therapy…putting hands in sand and moving the fingers around, or a web board. for icu and if he is paralyzed in his arms/hands any and all passive range of motions are beneficial…..yes he obviously is experiencing hypotrophy in his muscles, but if someone else doing them for him is all he can do, then that is what you do until he can…it will come back. good luck.

      forst

      [QUOTE=JHegeman]Hello,
      I recently became a member. I was diagnosed with GBS in 2000 and after receiving occupational therapy to speed my recovery I decided to get my degree in OT. With my case, I was never in the ICU. I was extremely fortunate that the GBS did not affect my respiratory system. My therapy took place in an outpatient clinic.

      Currently I am in the middle of an intership for occupational therapy in the acute care setting of a hospital. I have been working with a gentleman who was diagnosed with GBS in February 2006. He is on a ventilator, feeding tube, and can move his head and shrug his shoulders. Otherwise most of his body is paralyzed.

      I am curious, what type of treatments did the occupational and phsyical therapists provide for those of you who spent time in the ICU and experienced full body paralysis and respiratory issues??
      Did you receive splints for your hands?? If so, did you find these painful to wear?? In my experience, GBS can cause severe hypersensitivity. I remember I did not want to be touched due to the pain. Did any of you have this experience? If you had splints did you find them helpful?

      Also, did the nurses provide passive range of motion on a regular basis as well as help you to sit up occasionally?
      What caused the most discomfort and pain for you in the ICU? What do you think helped your progression the most? (emotional support, therapy, etc…)

      I would love to hear from any one who is willing to share. I feel very lucky to have such a great resource at my fingertips (personal experience).

      I wish you all the best.
      Thank you!!
      -Juli[/QUOTE]

    • Anonymous
      August 15, 2006 at 12:18 am

      Hi,

      I don’t remember much of anything for the first month, but my mother was telling me about the PT that I was receiving. She couldn’t understand why I should get therapy when I didn’t know what was going on and I was still paralized. According to her they carefully and slowly did small amounts of stretching legs and arms. Also moving my legs a little back and forth. Kind of a moving of the muscles but very slow.

      I think it is a good idea. Just like a person in a coma, our muscles need to be kept viable.

    • Anonymous
      August 15, 2006 at 7:12 am

      Thank you judypaluch, forst, gene and ali for your responses. You have been extremely helpful!
      I would love to keep hearing more from anyone else too.

      Take care,
      Juli

    • Anonymous
      August 15, 2006 at 8:43 am

      Hi,

      In my opinion, ICU is for getting stabilized, and set up to live through this for the rest of the way. Therapy, during this time, is minimul. Range of motion only, if that. Also, therapy is based on getting results, and the ICU time, is not a place to look for them. Therapy should be looked at on a condition base, as to when it should start, and to me, the most importent thing a patient needs to know from the therapists is, the clock has started running on how much therapy will be given and available to a patient, and that it’s based on getting a result to report to insurance at least once a month. To often, like happened to me, therapy is started and stopped due to no improvements. When that happens, so goes the rangeing, which did me in for the long term. I needed it in the beginning consistently, but didn’t get it. Nurses are not therapists, and they don’t have to do therapy tasks. Which most won’t do. I had doctor orders taped on the wall above my bed head board saying keep the footdrop boots on this patient. That is a nurse’s responsability, not rangeing my feet agin before putting them on. I couldn’t even get them to do that. Because of hypersensitivity, I had to get them off for so many hours to cut pain down, but they wouldn’t put them back on, and my wife had to do it 14 hours later when she visited each day. All hospitals aren’t peaches and cream. I had hand splints too, which were painful to wear, and found them to be ineffective, or no real benifit. In my opinion, every technique and device a therapist has at their disposal, is benificial. However, it’s the timing of when they are used an applied, that can make all the difference to a GBSer. Often times, I see things being done and tried way too soon, causing failure and interuptions in insurance coverage. For the first month at least, in my case more, I needed my body ranged from every knuckle on down consistently, so when I could do harder stuff, or healed more, I wouldn’t have range limitations. That didn’t happen, because everyone was expecting to see improvements too soon. Didn’t get them, therapy stopped. This is why I’ve advocated getting range of motion put on the doctor’s side, and not the therapy side of things. Like a continual med given a patient forever by a doctor, so should range of motion be included in what they can despence from their side of the ledger. Everything else can stay on the therapy side, to be determined when more activity is needed, and when that phase should start.
      While in the hospital as a patient, the best advice I can give a therapist is when hearing GBS, to not pigeon-hole, or incorporate in the box thinking. Let the walls drop and everyday routine we get into, and use the creative side. You have an advantage because you had the experiance. Just knowing some simple basics, like where it starts will be the last place to heal, should influence your approach. Mine started in my hands, and that’s where my first OT started. We changed that in a hurry, and started working therapy from the trunk or middle body, and worked more and more outward towards the hands and feet as time went by. Range of motion in the hands and arms only for 10 minutes before we went on to the big stuff. This is obviously for more extream cases like the example you provided. Why an open mind is needed and creativity applied, because GBS runs the gambit and it’s a case by case evaluation of present condition. Phisical and occupational therapists can work on a patient at the same time. I needed this for awhile to move me around, and some days the OT did more, and the PT was just there to help with the heavy lifting and visa versa. Rangeing can be done sitting up, or being held up, on the side of the bed, on a slant table, or in a wheelchair beside the bed or down at the gym. Just getting in and out, off an on, needs more help. You can go solo and pull a nurse or aid standing around in the hallways too for help. Did all this stuff on a vent. Keep asking and it’s nice to know of another who will be helping future GBSers that really knows.

    • Anonymous
      August 16, 2006 at 7:01 am

      my sister got GBS in April 2006 she had the axonal type. thank god she gotthe IV plasma gammaglobuline in due time, she too had total paralysis, she could not sit she did not bear being touched she had problem with all daily stuff, eating writing, she almost did nothing for two months laying in bed we had to help her with shower, eating, turning in bed up to ten times per night, it was painful for everybody, now she s rather better she still can’t walk, we still help her to sit but she improved , her hands are better, but she s still very weak, we are four months now and i do worry about wether she ll walk or not but i am optimisitic.

    • Anonymous
      August 16, 2006 at 8:47 am

      Juli, My husband who was 60 and in excellent health when his GB set in all in one day on June 4, 2006 has been totally paralyzed and on a vent and stomach tube since then. He spent one month in a large hospital ICU, was transfered to a rehab hospital’s medical floor where he pretty much got ICU treatment but more daily rehab for a month. Then he was declared stable and transfered to a nursing home like vent assist unit at the same rehab hospital the first of August. The transfer was disastrous because he wasn’t stable and really needed ICU care and he had cardiac arrest. A friend was visiting and essentially saved John’s life. He is now in ICU in a different large city hospital. He started to have slight movement of his head at six weeks and now after two and a half months he can slightly move his mouth, and head, and has regained control of his eye lids. After reading about your patient being in the shape John is in for so long, I am terrified that this is going to go on and on.

      The ICU’s did stretch and do range of motion on JOhn daily, but I think only twice a day and not for very long at each session. Only the rehab hospital actually put him in a sling and had him sitting in a special wheelchair twice a day for several hours each time. One of the ICU’s cranked his bed up into almost a sitting position.

      He is in pain a lot – mostly burning pain in his legs and arms which seems to be relieved most by motion (limbs being moved by someone else) and gentle massage. He is also being given neurotin, morphine, and percoset. Other GB patients who have been in JOhn’s position and came out of it have described the pain where you can’t stand to be touched. He hasn’t had that kind of pain yet. From what they tell me, this comes just before more movement sets in.

      From our experience with this the main thing that a patient needs is for a therapist who will take the time to communicate with the patient and truly respond to what the patient says. John can communicate very clearly by blinking his eyes as someone spells or to answer yes or no to questions. He can say whether he needs or wants pain medication and can ask for massage or movement. The hospital workers he thinks are “bad” are the ones who won’t look at his eyes and won’t take the time and effort (yes it is laborious, energy sapping and time consuming to communicate with a totally paralyzed person) to give him a chance to tell them what he feels and needs.

      A friend who was in John’s position in 2002 and is now recovered and who spent months in the ICU told me that there did come a time where she couldn’t stand anything touching her. At first massage helped, but later it was painful. She said that they wanted to put splints on her hands and she refused them because it hurt too much. Now, she has recovered nearly everything except the use of two fingers on each hand. She believes her lack of or slow recovery of the fingers and hand troubles is because she refused the splints. She advised John to cooperate with and trust his physical therapists because they really do know what they are doing.

      The pain medicine is necessary but it is like walking a tightrope. Too much pain med and their heart and blood pressure fluctuates dangerously. Also, and we don’t know this, we think it slows down and inhibits your ability to move. It also causes hallucinations in some people. John hasn’t had them. His friend did. He often refuses morphine because he doesn’t like the way it makes him feel.

      Listen to your patients. Even when rushed, try very hard to give them the time they need to communicate. This not only insures that they have a better chance of being made safe and comfortable, but it can save their life. It also is an outlet for their trapped spirit and has to help prevent depression.

      I think you will be a good therapist because you are taking the time to ask patients and their families how they feel and what they know.

      Carolyn Baker

    • Anonymous
      August 16, 2006 at 8:59 am

      Juli, I’m posting another reply because I thought of some more things. Besides the communication, I think that visits from friends and family and religion seem to help those who are down with this in ICU. My husband has a stong religious faith. I don’t. He says prayer is what is getting him through this. He says that he hasn’t been depressed because Jesus is with him. I don’t believe him because tears rolled out of his eyes for a few days after the cardiac arrest and pace maker. He didn’t want the radio, television, reading aloud, or even music or to be talked to the first few weeks in ICU. Gradually he has begun to ask for music and to be read to. He hasn’t wanted the television. He now seems to live for people who come in and tell him stories and jokes and talk to him. I asked him how he kept from going crazy without having something like a book on tape to engage his mind and he said two things. “I pray” and I don’t want to be distracted because I feel like I need to be alert to everything that is going on around me. I think he felt that he had to know how the machinery worked and that it was working properly and was afraid to be distracted by anything else.

      Carolyn

    • Anonymous
      August 16, 2006 at 10:01 am

      if hand splints are too painful, use sponges. i had great pts and ots, during my 4 stays. i needed something to do while just laying around waiting to get feeling back, so 1 pt gave me sponges to hold onto. they were just the right size for my hands and as i lay there my visitors would help my fingers squeeze the sponges. it got to the point where i could move my fingers on my own, and i would continually squeeze until my paralysis slowly regressed. i take those sponges with me everytime i have a paralysis event and request the nurses, pts, ots, and visitors to move one finger for me, i think that is why i have more movement in my fingers then anywhere else, like my trunk. now if i can only devise something like a huge sponge for my stomach, i would be perfect! take care and good luck in your schooling!:)

    • Anonymous
      August 16, 2006 at 8:57 pm

      Thank you all for sharing your stories with me!
      Angel, you made me laugh about the sponge for your stomach. What a great idea! 🙂 Are you still receiving therapy to regain the strength in your trunk and legs? Neurodevelopment Therapy worked great for me. With NDT the therapist facilitates normal movement through various techniques and it is sapposed to retrain the brain to create these movements. With NDT the focus starts with the trunk to create stability in your core muscles then works out from there. I’m not sure it is for everyone, but anything is worth a try.
      Carolyn, thank you for sharing your story about your husband. He is very lucky to have you! And I am sure you are very lucky to have him too. As I am sure you have read on the discussion board, recovery takes more time than one would wish sometimes. It is different for everyone. What seem like very small progressions are huge. You husband sounds like a very strong person. Thank you for all of your information about therapy and the hospital staff.
      Sam, thank you for sharing your information about your sister. I am glad you have that optimism. It sure is worth it to never give up the hope that your sister will walk. I feel the positive energy you give her is so important for her recovery. It must be very difficult for you. Please don’t forget to take care of yourself too!
      Racer, you gave me some great ideas. The ROM seems so important so that is maintained when progress and future movement occurs. Also, starting at the trunk makes great sense to me. Thank you for sharing your story with me.
      Take care all-
      Juli

    • Anonymous
      August 17, 2006 at 7:43 am

      Hi,

      I was in ICU two weeks. I was totally paralyzed but not vented. I could talk but the right side of my face was paralyzed. Rest is important, especially in ICU. I was not receiving therapy but just taken care of in ICU. I started receiving therapy once I was in long term care at another hospital. I did get a little range of motion from a PT when I was moved out of ICU. The key is not rushing therapy. I remember one of my doctors telling me that doing too much too soon before you are ready can cause GBS to flare up. I saw an OT once I was was in long-term care which was about 3 weeks after my onset. I found wearing hand grips and feet boots were very helpful. My hands curled terribly so I had my grips on all day and night. The hand grips were on several hours and off about one hour. I wore my feet boots at night mostly and on and off during the day. You are very tired when you have GBS. OT did basic things first. I also had a speech therapist. It takes time just to move and progress. I remember thinking it was hard work and would I ever be able to dress myself again. I loved my OT’s and PT’s. I hated the therapy because it was a lot of work. I never thought I would be able to dress myself. It was work. The goal they told me was to make me self-sufficient. Do not do anything for the patient but have patience as you wait and work with him. Encourage but don’t discourage. Positive words. Invoke confidence in the patient that they can do it and you won’t be far away if they need you, especially when you begin to leave them alone to do things you know they can do but they think they can’t like dressing and eating.
      Glad you want to help GBS patients!

      Caroline

    • Anonymous
      August 17, 2006 at 1:46 pm

      Juli, i was doing that neuro pt after the 1st and 2nd paralysis, but then had to stop all pt, ot after 3rd and 4th events because ins ran out covering therapies-they wouldn’t cover anymore without a confirmed dx. that thinking outside of the box syndrome hasn’t hit the ins co yet! i do all sorts of therapies at home on my own-i can’t stand to lay around and do nothing. i swim-when i can climb the ladder, walk-which can/does lead to more problems, all sorts of things inside and outside the house. my dog, kids and family members all help me when i ask them to. i even came up with an idea for a simple ladder for me for our pool-haven’t got the things to put it together yet but will work on it before we take down the pool next month. the water is kinda cold now so won’t be doing too much more swimming this season. i have one of those balls that i can workout on after the pool goes down.
      the most important tool you could use in therapy is having a positive attitude. the therapist needs to be encouraging, positive and listens to the gbs/cidp patient. also learn how to read expressions, some of us don’t complain of pain while doing the exercise, so its important to learn the physical expressions that go along with the pain. my therapists were great at reading me, i really was able to learn alot from them also!!!:)

    • Anonymous
      August 17, 2006 at 3:55 pm

      Hi,

      Just to add a bit to Angle’s thoughts, it’s real importent, as a patient, to not only try stuff, but to learn tecniques and how they are done properly an effeciantly. Every task I do at home, has a base from the 3 years of therapy I had. All can be applied doing everyday things in the home from getting out of a chair and so on. You never know how long you’ll need therapy, and insurance paying for it.