Where do we go from here?

    • Anonymous
      October 8, 2007 at 4:38 pm

      Hi everyone-
      My dad (67 yrs. old) was diagnosed with GBS in April 2007 & is still struggling immensly. He is on a ventilator and has movement in his feet, hands, little in his legs & arms, and can hold his head up & turn it. He is going on 7 months & we (family members) are looking for information/personal stories of others who experienced similiar long-term situations. I’ve read about many who were home within weeks, but my dad still does not have the “option” of homecare, to our knowledge, and has become very depressed in the hospital. We have been struggling to find experienced physicians with GBS patients (as well as their staff members), which has been very frustrating as well. If anyone can give me their story, or a family members, who may have experienced being on a ventilator & a long hospital stay while suffereing from GBS, it would be greatly appreciated!!! Or if any of you can enlighten us on quality long-term care facilities located in Southern California, it would be wonderful since we were just informed our father must be moved to a sub-acute facility in a matter of days due to insurance matters.

      I am so glad I found this website! Thank you for being out there!!!

    • Anonymous
      October 8, 2007 at 9:02 pm

      At 59, I’m just a little younger than your Dad. I was diagnoised 5/05 and spent 5 months in the hospital – on a vent; then 5 more months in an acute care rehab center. Being on the vent will probably dedictate which facilities will accept your Dad. At least in AZ, not all rehab center accept vent patients.

      You will have to start reseaching and interviewing facilities. Get on the phone and call neurologist in your area and ask about their expertise with GBS. You have your work cut out for you. Tell your Dad he CAN NOT give up, not for a minute. I am now living by myself, driving (hand controls), and walk with walker and AFO’s (braces). Rehab is a must!

      If all else fails call David Saperstein, MD at 602/258-3354 and see he could poissibly give you a referral to a CA doc. Dr Saperstein is one of the MOST GBS knowledgeable physicans ( and he writes for the GBS Foundatioin newsletter).

      Best of luck to you and Dad.


    • Anonymous
      October 9, 2007 at 1:10 am

      Thanks so much Vicki! I wish you the best of luck as well!

    • Anonymous
      October 10, 2007 at 10:44 pm

      My mom (79) was diagnosed in May 07, spent the summer in the hospital and at the end if August, was transferred to a rehab center. It was only somewhere towards the end of August did they start weening her off the trach. Things seemed to change overnight almost. One day she was immobile and lathargic and depressed, the next she could breathe and talk a little. She’s still doing okay, doing a little better with PT and OT, but not much. They left her trach hole open just in case she has a set back.
      It’s different for everyone. I’m sorry your dad is getting depressed, unfortunately, that’s normal too. I can’t imagine being totally healthy one day and then totally helpless the next with an explanation about some bizarre virus no one has ever heard of! This illness does seem to teach us all a new definition of “normal.”
      Hang in there. Keep encouraging your dad. Assure him he will get better.


    • Anonymous
      October 11, 2007 at 5:15 pm

      Hi Hollyb,

      My wife was diagnosed December of 05 with GBS (for the second time at age 70). The first time was over 30 years ago. Then she was totally paralyzed, including her eyelids, but here respiratory system was not affected. This time progression was much more rapid. Hospitalized on the 22nd and code blue on the 24th. They eventually decided it would be a long term recovery and performed a tracheotomy and inserted a feeding tube 2 weeks later. The following day she was transferred to a Long Term Acute Care facility where she received unbelievablye care. She was on the vent for 3 months followed by another month of rehab in the same facility. Even before she was off the vent they were doing physical therapy with her.

      After she returned home she received 2-1/2 months of in-home PT which ended on July 4th of 06.

      Her recovery has been phenomenal. We visited the LTAC last December to thank them and the head of their respiratory department was literally speechless at her progress.

      She still has numbness and pain in her feet and fingertips, but she refuses to give up. She just finished stripping and refinishing our kitchen table and is in the garage now stripping a chair. We try to walk at least a mile several times a week.

      This is pretty long for my first post, but hopefully these replies will give your dad something to shoot for. I’m a firm believer that a patient’s outlook is extremely important to their recovery. Do the research that was recommended and actually talk to the facilities and the people involved in person. If they don’t have time for you, keep looking.

      And don’t forget to take care of yourself.

    • Anonymous
      October 17, 2007 at 12:57 pm

      You’ve gotten alot of good advice from others already. I spent 5 mos. in hospitals, never transferring to the Rehab Ctr. because they would not take me with my trach. But the hospital I was in then had an arrangement with the rehab so that they sent PT, OT, and ST to me for daily workouts. When I could handle it, the hospital transported me to rehab twice a week for aqua therapy, which is extremely critical for recovery of limb function.
      Larry’s observation was dead-on: In many cases, it’s the patient’s willingness to hang it there and do whatever it takes that will mean the difference between a good recovery and a poor one. I know that there will be others who will disagree with that assessment because they tried just as hard as anyone else and still haven’t recovered as much. And I have to admit that the variableness of the illness itself and our own bodies’ ability to deal with it also have a large part to play in the final outcome.
      Be positive. Do your research. Get him into someplace with a good program and then encourage him to do the rest.
      Best wishes, Byron

    • Anonymous
      October 17, 2007 at 5:01 pm

      Hi Holly,
      What hospital is your dad at? Is he in the LA or OC area?
      I’m in Long Beach and would be happy to offer him some words of encouragement although I was never on a respirator I was in the hospital for 5 weeks and still have residuals 4 years later. Mine has moved on to CIDP I hear there is a great doctor over at UCLA incase you need a second opinion.

      Be well,;)
      just Joyce

    • Anonymous
      October 17, 2007 at 7:40 pm

      joyce, will you pls let me know who this great doc @ ucla is & how to contact him? i keep a list for gbsers. thx. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 23, 2007 at 8:32 pm

      Hello Joyce-
      My dad is actually in a sub-acute facility in Hemet now. He is still struggling with many of the same symptoms as before. It has been over 8 months now, can I have the contact info for that doctor at UCLA? If you could give us some words of encouragement to pass onto my dad that would be wonderful, unfortunately I have not found a chapter that meets near Hemet. Thanks so much for your reply!