How important is Rehab?

    • Anonymous
      May 14, 2008 at 6:32 pm

      I am relieved to finally find a place to ask questions. My 70 old, active, truly amazing mother was diagnosed with GBS mid Feb. 08. She was diagnosed within 2 – 3 days but her experience was quite severe and has included complete paralysis for about a week, about 2 weeks in ICU, a ventilator, plasmapheresis, immunogloben, etc. Once she started to recover she was returned to a small town hospital. At this point she is getting physio 2 to 3 times per week for about 45 minutes. She is on a wait list for a rehab centre. My 73 year old father is expected to deliver physio sessions. Recently my mother has refused to participate in the physio sessions offered by the therapist. I am very concerned that she is not receiving the appropriate level of care. Her health care providers are not familar with GBS. They are not taking a holistic approach to her health care. I live several provinces away from my parents so I’m not there to witness the daily happenings. I have spoken to the physiotherapist over the phone in the past which resulted in improved communication. My mother is now able to sit in a wheel chair for 3 to 4 hours per day. She’s starting to use the walker but prefers the parallel bars. She is refusing to put normal clothes on.

      Question: Should I be advocating hard to move my mother to a rehab centre or should I back off and let the system do it’s thing. I look forward to receiving any advise you might have.:confused:

    • Anonymous
      May 14, 2008 at 6:59 pm


      I am sending you a private message. Contact me if I can help.

    • Anonymous
      October 22, 2008 at 4:09 pm

      I dont no about any one else but it made me relapse. and made things real bad so i guess every ones diff.i tried work but this wasnt in cards. i was danger to self and others. plus pre condition wouldnt pay if i got hurt which i did and wouldnt pay if some one else got here i sit 3 1/2 yrs later waiting for disability. man ind sucks even senitors wont help. if poss im leaving ind when house sells. do you no they gave disability to the friend of ours she said she was scared to go out side and of folks. but she was soft ball coach and she would tell us about her rock concerts she went to so we just dont talk to her. she big story teller opps sorry for rambeling just angery at system for stupidity.see this is what we who are truly disabiled go thur every day some times i wonder:confused: :confused:

    • Anonymous
      October 22, 2008 at 7:38 pm

      Alison You might want to talk to your Mother and tell her that you know she is feeling extreme fatigue from the GBS and that all her muscles in her body are weak and need to be woke up by using everyone of them. Without that work on her part she is slowing down her progress to return home. Usually what they do is offer out of that 45 minutes movement to get all those muscles and tendons and ligaments moving. The tendons and ligaments have more memory than the muscles do and the nerves to the muscles is where the short circuits are. So you have a double edge sword here. They are trying to get her to move to get range of motion, breathing and strenght which will help with her balance as she gets stronger. Just sitting in that chair is strenghtening the core muscles and going to help her stand and be able to get up easier. I can tell you that just sitting in a chair for that long is very painful and when you are more than exhausted you have the kind of fatigue we have with GBS you want to lay down. Also, your mother might be having such terrible pain from the damage to the nerves that she might need to be on a pain medication. When I was tested to be moved to the upper level of rehab I had to walk ten steps by myself. Until I could do that they would not accept me. There was other things too. I HAD to wear my street clothes, I was not allowed to stay in my PJs all day. I had three people coming in and working with me. One did Physical Therapy as soon as I woke up and had breakfast. I had to do my exercises in bed. Then the second person would come in and do Occupational Therapy. Tasks to get me doing things for myself like brushing my teeth and combing my hair and getting dressed and sitting in the chair. Also some days I worked in the shower getting my own hair washed. I also had to fill out my own menu for the day and sign my name several times to show them I was gaining control of my hands despite them being needles and pins and numb. The third person would come in and do Physical Therapy taking me out of the room in a wheel chair and later having me walk to the gym. There I would do all kinds of things. My own laundry, cooking and getting in and out of the tube and car. I had to show them I could do tasks that required household gadgets and games to gain more control of my muscle movement. By the time I got to the rehab floor I was doing 1.5 in the morning and an 1.5 in the afternoon and eating and sleeping inbetween my visits to rehab. To come home I had to do all those things and more and be able to come up steps to make sure I could get into the house when I got home, even if I did come in the garage. There was many steps to get me into the house. Then I still had OT and PT come to the house along with a nurse that visited every other day. That was about all I could handle. At that point I still had extreme fatigure and needed 20 our of 24 hours of sleep. So until your Mother follows their suggestions she will not be allowed to advance to the next level. It is also important that you check to see if she is having depression issues because you know what your Mom’s attitude was before she come down with this ugly disease. See if you can have Friends, People from the church or her bowling league or card club to send her cards. Visit if they can for only a short time and in small groups. Talk to her about what you plan on doing for the holidays when she is at home and feeling better. Give her possitive feed back she needs to look at this with a possitive attitude. She like movies or music or to read books? Have someone make sure those things are being taken to her. Tell her about us on the internet and tell her she has a big group here that has been where she is now and we got better but it is a slow process and you have to help yourself get well too! Also, send to the foundation for their pamphlets for the patient and care givers there is alot of good advice there. Also, make sure she is able to see and does not have double vision like some of us have had with the GBS. I actually had so much pressure on my eyes that they hurt to touch and I did not have the ability to make tears. I also had bleeding inside the eyeball that would wipe out my vision when I started to move my head. Ask her to explain how she is feeling and when she can not explain it come here and have her Doctors also check it out. Some Doctors will give you an email address that you can use when you live farther away. It is important to open and keep open the communication with all her Doctors. Also you might want to see if there is a local liason in your are that could come in and talk to her to show them there is hope! Also there is many famous people that has Guillain Barre Syndrome and that might be something you could tell her about and she can use them as a role model. One that comes to mind that I was told about was Andy Griffith from Mayberry RFD, Matlock and other roles. Good luck and give us reports!

    • Anonymous
      December 26, 2008 at 12:30 am

      Hi, I am a physical therapist with a son with possible GBS. The PT is important but they need to be very careful not do over do it with rehab because people with GBS can have set backs from fatigue. That being said, rehab is not just about working on strength gains at your mom’s level. It is about preventing pressure ulcers through positioning and increasing blood flow, it is about maintaining the motion in your mom’s arms, legs, shoulders and feet so that she has normal motion when she gets stronger. It is also about teaching your father how to help her in ways that are safe for him and for her. She should be receiving it 2 x day given what you have said but it does not have to be for a very long period of time.

      Essentially, they can help prevent a lot of the possible side effects of bed rest and weakness from prolonging her recovery and from ultimately limiting her full return to normal function.

      I am not sure about Canada (I am assuming you live there since you mentioned Provinces) but in the US, a patient needs to tolerate 90 minutes of Physical Therapy and Occupational Therapy to be sent to rehab. If not, there are short term and long term care facilities that offer rehab at a reduced level. Perhaps there is some sort of “in-between” for your mom. I would speak with the doctor following her case and try to advocate for PT more often but for less time.

      Best of luck to you. She is lucky to have a daughter like you!

    • Anonymous
      April 20, 2009 at 11:55 am

      iam recovering slowly but well from GbS-12/08-i was down and out in icu for a week then went to a hospital that had in patient pt.i was ther for 5 weeks and the imrove from day to day was amazing.twice aday for pt and twice a day for ot-it was very hard and exhausting at times but i needed to retrain my entire body how to perform-yes i i walked out of the hospital with a use a cane when tired.your mom is just tire and confused,this gbs is a strange good to yourself and your mom is lucky to have you.i was lucky and had a very careing sister to get me thru this-also watch meds,some are hard on mind and emotions.fight the good fight.PAX

    • Anonymous
      June 8, 2010 at 6:39 am

      get well soon vickie46. you hav taken good effort


    • Anonymous
      June 8, 2010 at 9:48 am

      Alison Hope you get this message! It has been a long time since we have heard how your Mother is doing and would like to hear from you! After PT and OT I still had work on my own to do. There are just those tiny muscles that get skipped over when in PT and OT. Some I asked how to get them moving to the best of their ability to get full movement back. Others I could figure out by myself how to get them moving for full use and range of movement. I can understand the not wanting to wear clothes. Some have experienced the nerves are so over sensetive that even the sheets on the bed touching the skin is very painful. This may be the case with your Mom. Also, in PT they can do certain things to descenitize the nerves. I still have areas that if touched can not feel the touch. Some areas that are way too scensitive and the over active nerves can get the best of my energy level at times. Sound can even set them off to vibrating wildly. I am sure there are medications that have been tired for this but all my problems are constantly changing thru the day that I don’t take any meds. If i was in extreme pain then I would have tried. I still get cramping and spasams, they hurt at the time but don’t occur everyday, so again I don’t take the meds that have helped others. Please get us up to date if you get this message! Remember depression is a big part of GBS and this great quick change in our lifestyles. Our caregivers are our best companions thru this journey.

    • Anonymous
      June 17, 2010 at 2:42 am

      Thanx for sharing

    • August 9, 2014 at 6:03 am

      Rehabilitation is a medicine that will treat the disorders which give disability. It involves solving problems connected to the functioning of neurological, cardiovascular and pulmonary method in the body. Rehabilitation can be served to people of all age groups, all socioeconomic groups, all type of races and all racial groups. While the companies are providing correct security methods, the cost of musculoskeletal injuries occurring at the on-the-job site was found to be increasing.