All rehabs are not the same. There are hospital rehabs, which the patient will receive hospital care along with therapy. There are specialty rehab centers that deal with cases like GBS. There are also nursing home rehab centers. Before therapy can begin the person with GBS will need to be evaluated by physical therapy and occupational therapy because every person with GBS is different. Things to expect during an evaluation are: sensory assessment, inspection of the skin for sores or breakdown, range of motion, muscle strength, daily tasks, and mobility.

During the acute stage, active movement may not be tolerated by the body, and passive range-of-motion therapy techniques should be used. During recovery therapy can go from passive to active-assisted range-of-motion, but usually require breaks. As the recovery continues the therapy exercises change to fit the person's needs. Daily care and activities are also added as certain parts of the body regain movement.

Do not exercise to fatigue, but move and exercise as soon as you can to avoid atrophy and other problems that can occur.

"No pain, no gain" does not work for GBS, and will do the opposite of helping the patient get better faster, and will hold them back from recovery.

Every person is different, and what works for one person may not work for the next person, so new or different ways may need to be thought of. Do not push yourself to exhaustion, or let the therapist push you too far. Only you know your limits. If you need someone to help you speak up find someone who will do it for you, or contact us and we can find an advocate for you.

We encountered a problem with Annette dealing with rehab centers. She was first admitted to the hospital rehab center, but she suffered a small stroke and had to go back to the hospital. When she was ready to be discharged again from the hospital she was no longer eligible for the hospital rehab center, and we were told to find somewhere else, because “she wasn’t strong enough and it would be more than a few months to recover”. We were given a list of rehab centers most of them being nursing homes (Annette was only 51 at the time) and one other that wasn’t a nursing home. The biggest problem we faced was who would take her insurance since she had Medicaid. The highest rated rehab centers didn’t take her insurance or didn’t think she was strong enough. So, Annette ended up at a nursing home rehab center that had never dealt with GBS. The hard part is the training that was lacking in both rehabs was frustrating and heartbreaking not only for Annette, but her family. Do not hesitate to speak up whether you are the patient, family, friend, or advocate. Doing your research on rehab centers in your area early on can also help in the deciding process when the time comes.

Training is one of the reasons we have started this foundation, and hope to raise enough money to help train medical staff for GBS.