Local woman dies from GBS

    • Anonymous
      October 23, 2010 at 1:56 pm

      A woman who lives about a mile from me, died last week from GBS and complications of Sjogrens, an autoimmune disorder that attacks the moisture producing glands of the body. In September, she went to Johns Hopkins for treatment because of pain and stiffness in the legs. Her family was told that she developed GBS and unfortunately, she died from heart failure. She was 46 and the mother of 4 boys, aged 8 to 14.

      Sometimes, in the midst of our discussions, we forget that GBS does still take lives. We must try to educate everyone we can about GBS and push the medical community to do more research.

    • Anonymous
      October 24, 2010 at 11:53 am

      There is a friend of mine from my hometown who was hit with GBS just recently. She had symtoms for a few days & did go to the hospital where she was dx with GBS right away, via EMGs & her symptoms. She deteriorated very rapidly & had to go on the vent on Oct 14th. I read yesterday (her family posts daily on Caring Bridge), that she was unable to close her eyes, a further deterioration in my mind. She is 56 years old & was in great health before GBS, but she had had a sinus infection for 3 weeks before she became so ill, & had recently been dx with Sjogren’s as well. I am trying to help the family, as GBS is rather rare around here, but I had a severe case of CIDP, which is different in many ways. What should I do to help out this wonderful family? Also, I would love to hear from others who have been where she is right now, as I was never on a vent & feeding tube. Please, any suggestions would be most welcome. I have to admit that this post scared me, as I never considered the idea that Sally could actually die…

    • Anonymous
      October 24, 2010 at 12:03 pm

      I don’t know anything about Sjogren’s, at all. I had the Miller Fisher varient of GBS – I call it “GBS-upside down”. Instead of getting numb from the toes going up, it was the face going down.
      Anyway my eyes “frozen” – could not close them completely or open all the way, or move eyeballs. I was on vent & feeding tube, also. Pnemonia, 2 times.
      It is a rough and scary ride, but barring further complications, recovery is in her future. Tell the family that others have endured what she is going through – and survived. It takes time – lots of time. Good luck to her.

    • Anonymous
      October 24, 2010 at 9:17 pm

      Pam H.

      I was totally paralyzed, on a respirator and could not swallow or talk, but I could close my eyes. Everyone is affected differently. The fact that she can’t close her eyes just means that those nerves are affected; not that she is deteriorating. It has only been a few weeks and your friend has probably hit bottom. Hopefully, she will soon start to slowly regain some of her lost functions.

      Tell her family to understand that she is terrified right now. When you are that sick, it is hard to imagine that you will ever recover. But, have them tell her that there are thousands of us who have been where she is now and we did recover. Recovery is often long, slow and frustrating, but in most cases it will happen. The most important thing is to be there with her and when she does begin to recover, make her notice every improvement, no matter how small.

      Dying from GBS does happen, but it is very rare. The woman I knew had been in ill health, for some time, before she developed GBS. I did not want to frighten anyone, but rather get people to educate others so that GBS can be diagnosed as early as possible.

      It sounds like your friend is getting good care. Please tell her family that we are here if they need us.

    • Anonymous
      October 25, 2010 at 11:40 am

      Having had a severe case of GBS and in intensive care on a ventilator, I sure understood how people could die as a result of GBS. Just like Alma, I had various infections and pneumonia 3 times and quite a disturbing percentage of people who contract pneumonia in the hospital do not recover. So it is sure important to keep a close watch on GBS patients in the early stages.

      As for the eyes closing, it was the same for me as it was for Alma. I just couldn’t close them all the way. The thing to watch out for is that they do not dry out. Excessive drying can permanently dry the eyes out. So they either need to be held shut or drops need to be put in them. Putting on patches or coverings is not as good for the patient as the drops if the only way to communicate is by the eyes. I was in South Africa and a doctor had ordered that I have patches put on my eyes during the night. When the night nurse came in and saw the order, she pleaded with the head nurse to do something else as that was the only way I could communicate. They had quite the argument with the head nurse saying that she could be fired for disobeying the order but the nurse had stood her ground out of sensible compassion. I so admired the nurse for her compassion for me that I spelled out to her that I would try the patches because I didn’t want her to lose her job. Anyway, after that, we got on the regular drops.

    • Anonymous
      October 26, 2010 at 4:14 am

      As far as closing of eyes is concerned, I was also not able to close my eyes during the period of recovery. But gradually it becomes almost normal. Of course, thanks to physiotherapist who had given me electric stimulation for about 15 days (for 20 minutes or so on daily basis) to the face and its nerves.