From a Wife of a GBS Patient

This topic contains 6 replies, has 7 voices, and was last updated by  egoodson 9 months, 3 weeks ago.

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  • #113665

    HsiaoChen Pan
    Participant

    My husband has been hospitalized for 4 weeks and went from walking on his own to breathing on a ventilator. Our official diagnosis is Miller Fisher Syndrome. I am extremely concerned about my husband because all his symptoms have caused him to be anxious and depressed all the time. How can I provide support or comfort for him? Any ideas?

    #113666

    GH
    Participant

    It is normal to be anxious and depressed. You can help offset this by assuring him that it is treatable and that people do recover from this illness. Although I was never ventilated, I spent four months in hospital and was quadriplegic for a few weeks. Today, although I have some residuals, I walk without assistive devices.

    You should get a cippy of Parry and Steinberg, if you can. It is a good overview of the various forms of acquired peripheral neuropathy. It is comforting to know as much about the disorder as you can. There is much advice in that book which you might find helpful.

    You also might try to arrange a visit from someone who has recovered from a severe case of GBS. This foundation may be able to help by contacting a representative in your area.

    #113709

    Bar2
    Participant

    When I was in the hospital for two months with a severe case of GBS. My wife’s support and presence was so important to me. Also due to pain and or anxiety it can be hard for him to understand what’s going on and whether to treat and how. Time for treatment is limited so as GH touched on Please contact this foundation directly for accurate and up to date information. There are many variations of GBS and while medical personnel & even specialists have limited experience. Also the GBs cidp foundation can provide contact info of doctors who see dozens of people with GBS every year! Your being able to talk to recovered patients and family thru the liaison arrangement can help him BUT JUST as important provide the support you need right now as well. Take Care Bar2

    #113711

    Dudes
    Participant

    It’s hard to watch our husbands struggle with GBS. Stay positive and definitely read everything you can.knowledge is very important.
    Everyday is a different day. Some better than others. My husband was 48 when he contracted GBS. We had just moved on to 5 acres of land. For 20 years he has been working around here, not accomplishing alot at times but our husbands needs projects to keep them out of depression. Life is good, even though GBS is always close by we feel lucky. It’s a life long adjustment. It sounds crazy but enjoy the journey and it’s challenges.

    #113754

    fightingfordaniel
    Participant

    this syndrome seems to cause anxiety and other psychological problems. My stepson has been on ventilator over a month. He cannot speak of course but he can mouth words and often it is something strange or confusing. Just be beside your husband as much as you can and that will help him

    #113803

    Marcel
    Participant

    Keep your hopes up! Search on youtube and facebook for Holly Gerlach, a woman who had GBS after having just given birth to her daughter, and who is doing extremely well now.
    My mom (72 at the time) got GBS and was on a ventilator for 17 months… she was in ICU for 5 months, and couldn’t speak for 3 of those. While that was a very, very long time, younger people recover faster, and they often have far fewer residuals effects. Although my mom is now in a nursing home in a wheelchair, she did get off the ventilator (even though they said she wouldnt), learnt how to eat again and can move herself around. As contrast: Holly Gerlach, in her 20s, now goes to the gym on a daily basis.

    #113957

    egoodson
    Participant

    Read all you can. Being informed on the disease is comforting and gives you some feeling of control and comfort. Let your husband know that you know he is getting better every single day, and that every improvement he makes is a step in the healing process. Give him a sense of normalcy by talking to him, having friends and family visit. Play him music. Let him know you are there and remind him to keep fighting. Best of luck.

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