Therapy giving up

    • Anonymous
      February 11, 2014 at 3:53 pm

      My husband has GBS and has been inpatient therapy for almost two months. He is unable to stand yet and they are sending him home, saying he isnt making enough progress to remain. Has anyone come across this?

    • February 11, 2014 at 7:54 pm

      That is exactly what happened to me! I went into the ER in October, the ER transferred me to the ICU the next day, and then I was transferred to rehab at another facility in November. After 3 weeks in rehab they told me I was not progressing and couldn’t stay in rehab. I was still unable to walk, stand, or feed myself. My vision was blurred (couldn’t read anything) and I could not chew or swallow food well. They ordered a power wheelchair for me through my insurance because they said I would need it. Then they transferred me to a skilled nursing facility (SNF) in January, where I stayed until my insurance ran out in April.

      I regained the ability to feed myself while in the SNF where I was given physical and occupational therapy daily. My treatments with Plasmapheresis helped me regain the strength needed to go home. I had to have my house retrofitted (wheelchair ramp, wider doorways, hospital bed, Hoyer lift, etc.) before my wheelchair and I went home together.

      Many GBS sufferers have this situation and you should not be alarmed by it. Each of us recovers at different rates and to different degrees. A good deal of recovery usually comes during month 3 to 6 after being stricken. So, hang in there and things will get better. I hope your husband has a quick and full recovery.

    • GH
      February 11, 2014 at 9:55 pm

      That does happen. In-patient therapy units do expect a certain amount of progress, or it is not a cost-effective treatment. Of course a lot depends on what the insurance company wants to do. I had to argue with my insurance company to get into a SNF with a good therapy department, because it was more expensive than other facilities. They did not know if I would make sufficient progress and insisted that I would have to advance. Fortunately, I was beginning to make a good recovery so advanced to the next level in three weeks. Then in acute rehap, I continued to make progress and was discharged home in another five weeks.

      For others, it is not so easy. I know someone who was in the same acute rehab facility for a time, but had to leave because he was not making sufficient progress. Since then, he has been in a nursing facility with a therapy department. His progress is extremely slow and he has had setbacks.

      Wherever your husband is, he should be receiving whatever therapy he is able to manage. The main criterion for going home is whether he can be cared for there, not whether he can stand. I went home in a wheelchair, able to stand only with a walker. I had physical therapy at home. My criterion for going home was that I could do transfers unassisted, as I was alone for much of the day. I also had a nurse come by to take blood samples. Eventually, I could walk with a cane. Then I started outpatient physical therapy.

      Recovery can sometimes be quite slow — up to three years or so — and may never be 100%. It is best to be patient and persistent at working at physical therapy, whether at home or in a care facility, to make the best recovery one can.

    • Anonymous
      February 19, 2014 at 10:02 pm

      I had the same thing, but I went to a nursing home. It was the best thing for me at the time. after my bout with GB it took months an months in order to stand.

    • February 22, 2014 at 6:25 am

      My husband was in a snf for about 4 1/2 months. Luckily there was never any talk about sending him home before it was safe for him to come home. That required him to be able to safely transfer from the wheelchair. He still needed a hospital bed and was far from being able to stand. But, with IVIG we were seeing slow progress.

      It was all based on safety. If you do not feel it would be safe for him, fight. Fight like mad and get the social worker involved. They had to do a home visit before they would approve it.

      He first started going down hill January 2011. First walked in July 2011, walked a half marathon Dec 2012. Keep hope up!