GaryG

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  • October 20, 2018 at 12:21 pm

    Iam sorry to hear about your mom’s diagnosis, but there is light at the end of the tunnel.
    My first question is do you live where you have a good neurological group? We felt fortunate that we had Barrows Neurological right here.

    My husband was diagnosed at age 76 with GBS…3 years ago. (You will see my post from April 4. 2016) He was an active, healthy Marine who had no health issues other than slight high blood pressure. For right now I will spare the details of the onset of the GBS, but he had a very severe case and not only was paralyzed, but was on a ventilator for a more than a week. Today he is walking, talking, taking care of himself once again with the only residual being his feet tingle ALL the time. And by the way, his blood pressure is completely normal with no meds!

    Plasmapherisis is the treatment that was used initially. It is sort of like dialysis for kidney failure except this removes the tainted plasma and clean plasma is put back in. There were no side effects from this—-though it did make him very cold for a little bit. Warm blankets took care of that! He had the plasmapherisis for 5 days, then the IVIG for 5 days. There was discussion to do two more days of the plasmapherisis…hind sight tells me that it could have been the right thing to do. I say this because he was getting better and then suddenly could not breath (the GBS hit his diaphragm/lungs) and at that point he was intubated and then was put on the ventilator.

    Again, the good news: going from being totally paralyzed, unable to breathe, eat, speak, close his eyes, etc. to be 95% normal…..well life is more than good.

    I do know that studies/research (Stage 2 trials) are being done using Eculizumab, but I do not believe it is approved at this point. I would check it out if we were on the front end of this diagnosis. Again, plasmapherisis……I would find a doctor who would get this started immediately.

    The second part of GBS recovery once the person is out of the danger zone and able to move at any level…is to do the physical therapies. Whatever is asked of the patient, regardless of how difficult or painful must be done. That mentality, doing whatever it takes, is what got my husband where he is today. It was grueling for him and for me to watch, but it certainly paid off.
    He still says that he never once thought about not pushing through to get where he wanted to be.

    Please stay in touch with us regarding your mother’s condition. We will pray for both of you and her doctors. Tell her that she will recover…..but as all our doctors told us over and over, Time and Patience were going to be our friends.
    Regards,
    Bev

    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.