Reply To: Scared at 82

April 4, 2016 at 1:29 am

My husband is 76 and 9 months ago was diagnosed with GBS. So your mother has a better idea of the road we have traveled, I am sharing our story. He actually had symptoms for several weeks prior to diagnosis, we just did not recognize them as anything serious until his feet (went to dr. but everything checked out fine), then feet and hands began to tingle. From the onset of the tingling, within 5 days he was almost unable to stand unassisted at which time we were directed to the top neurological hospital in our city. Diagnosis was made within 6 hours. Lumbar puncture was then done to confirm. He was given plasmapherisis for 5 days, then 5 days if IVIG. Even though he responded well to those treatments initially, he needed to be intubated/on a ventilator for 5 days then it was successfully removed. He never lost his upper body mobility, but lost the use of his legs and the nerves in his face/neck were completely involved so he lost the ability to speak/swallow. He was in ICU for 6 weeks, in the hospital for another month before going to acute rehab for 4-5 hours of intense therapies a day. There he received a motorized wheelchair to enable him to be independent in getting to therapies and able to get out of the room! By the time he went to acute rehab, he was able to speak and they continued speech therapy for him to reach a point of swallowing and being able to eat. After 6 weeks there, he went to a step-down rehab to continue speech therapy and OT/ PT for 2 months, then home where PT continued in home for 2 months before starting out-patient PT at a therapy facility. By the time he came home he was walking with a walker, very slowly and not very far, but able to walk. He used the motorized wheelchair for about a month at home to go room to room to conserve energy for his PT and increasing his stamina to stand and walk. At the end of the 2 months at home, he was able to walk with a cane and the wheelchair was out of the house permanently. He has two more PT sessions, then he will begin going to the gym and working out at home on his own. He is much stronger and able to do everything on his own except tie his shoes!! I still assist him when putting on slacks/shorts simply because it is easier for him. His feet and finger tips still tingle…sometimes his feet are painful to stand on, but it comes and goes. His hands are not weak but they have begun to itch!!! That topic I will ask about on this forum. The only meds he is on is Gabapentin and Vitamin B. I think a good neurologist is crucial to diagnosis and treatments. The neurologists in our city told us GBS is not rare, but uncommon….it has been amazing how many people in our area have either had GBS, had a family member/or friend with it, or knew of someone else with a family member recovering. There were actually 2 other GBS patients in the same neurological hospital when my husband was there. We were told nerves heal slowly and the older we are, the longer it takes. So depending on how severe a case the patient has (my husband was quite serious) plays a part in how long it takes for the nerves to come back. Your mother is not alone, but it is a very difficult….especially when the staff does not know what they are dealing with. Neurological things are not like other ailments that you just “get better”. It takes time and patient and I would think that at her age, she needs to be where she gets the proper care and therapy to strengthen her legs so she can eventually be mobile again….safely. You do know that you can appeal the decision to send her home if you see that it is not the right thing to do. You are her advocate, so speak up and question anything you need an answer to. I agree with Jim-LA that if you can share where you are located, perhaps we can help direct you to a place with the knowledge that will help her.