arlingtonal

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  • April 23, 2010 at 10:13 pm

    Len, When I was in Critical Care the docs told me almost everyone recovers fully. When I was in rehab hospital a volunteer who had gbs told me she still had tingling and numbness after 6 years. That did not sound like full recovery to me. I am now almost 5 years down the road and I still have numbness and tingling in feet and hands and some facial numbness.
    Feet feel like I am walking on bunched up socks.
    But, it doesn’t affect what I do….walking, working, golfing, gardening, scouting, canoeing, driving……..living. She can do it.
    My case was similar to your wife- 2 weeks critical care, 2 weeks specialty hospital to wean off vent, 5 weeks rehab hospital and 6 weeks out patient therapy.

    December 18, 2008 at 9:27 pm

    You know Shannon, since I am better and working, I do not get on the forum as often, but I share your thought about how blessed we are to just be able to walk and breath. In the hospital CCU when my goals were to speak and control my bowels, I wasn’t so sure I’d be doing what I’m doing. AND I thank GOD every day for finding a doctor who was familar with GBS. When you read the stories of folks who are not diagnosed for weeks and consequently their long recovery it is very sad indeed. Merry Christmas.

    December 18, 2008 at 9:17 pm

    We’ll send it your way when we are done with it.
    Merry Christmas.

    December 18, 2008 at 9:12 pm

    Mine was teated by a speech therapist using mild electric stimulation, and excercises on my own. I was in rehab hospital and had speech every day, so it was pretty intense. It must have worked becuase no one sees a half smile anymore. Keep at it.
    Al
    GBS Aug’05

    November 17, 2008 at 11:15 pm

    Dan, If you had physical therapy continue doing the exercises as much as possible.You will get stronger and be able to do most everything. My feet and hands still tingle – feet feel like bunched up socks – and there is some facial weakness. But I can walk and play golf and work. I am not taking any medication for GBS residuals. Good Luck.

    October 4, 2007 at 9:08 pm

    How can a hospital send anyone home on a respirator?
    Is this St. Mungos?
    After CCU, I went to a specialty hospital to wean off the vent. The care I got there would be extremely difficult to provide at home. Blue Cross paid for it.
    How would you suction mucus out of his lungs? You might as well have the paramedics park in front of the house.
    I think dad needs to get breathing on his own before coming home.
    Try to find a hospital that specializes in getting patients off the vent.
    The Lord bless you and keep you!
    Al
    GBS Aug’05

    October 4, 2007 at 9:00 pm

    This week marks the two year anniversary of release after 9 weeks of hospitalization. GBS started about the same for me and as quickly. I was 64 at the time and my daughters found this forum as well. What they found out helped them a lot and provided encouragment for me. The good news is diagnosis! The sooner treatment gets started to slow progression the better and faster will be recovery. I got into a really good acute rehab (5 weeks) hospital and was able to walk out – with a walker. AND after a few more weeks of out patient, I could walk on my own; using a cane on bad weather days. Encourage your dad, most every one recovers. Do not lie to him though – it will not happen over night and will take time and work. As Gene says, rest will be important. Don’t let him do too much at a time and rest between sessions.
    God Bless Dad!
    Al
    GBS Aug ’05

    September 20, 2007 at 10:24 pm

    Your dad cannot be taken off the respirator untill he can breath on his own. For me they would cut off the oxygn for periods of time and if I did ok, the period would be longer and more frequent. With the breathing help he cannot eat solid food, so he will probably have to work up to liquids, soft food and solid. After getting off the vent and being able to talk again, I moved to an acute rehab hospital and spent 5 weeks of 3 times a day therapy, not on Sunday, learning to walk, dress, climb stairs and get stronger; and 6 more weeks of out patient therapy 3 days a week with home work.
    I am lucky – 9 weeks of hospital; but I was able to go back to work full time at the end of 5 months.
    I took a driver evaluation course offered by the rehab hospital, mostly for the pease of mind that I had a paper saying I was Ok to drive.
    My doctor would not release a patient for home if they could not take care of themselves or if there would be no care giver.
    GBS – Aug, ’05
    AL

    September 20, 2007 at 10:20 pm

    Your dad cannot be taken off the respirator untill he can breath on his own. For me they would cut off the oxygn for periods of time and if I did ok, the period would be longer and more frequent. With the breathing help he cannot eat solid food, so he will probably have to work up to liquids, soft food and solid. After getting off the vent and being able to talk again, I moved to an acute rehab hospital and spent 5 weeks of 3 times a day therapy, not on Sunday, learning to walk, dress, climb stairs and get stronger; and 6 more weeks of out patient therapy 3 days a week with home work.
    I am lucky – 9 weeks of hospital; but I was able to go back to work full time at the end of 5 months.
    I took a driver evaluation course offered by the rehab hospital, mostly for the pease of mind that I had a paper saying I was Ok to drive.
    GBS – Aug, ’05
    AL

    July 27, 2007 at 11:04 pm

    I feel much stronger this summer as the second anniversary approaches.
    I have about the same residuals as you have. I have continued physical therapy at home by doing streteches, walking outside, riding excercise bike, walking, walking and walking. I walk nine holes, park at the end of the lot and do some excercises on lunch break. The stamina and flexibility are getting much better.
    Keep on keepin on.
    Al

    July 27, 2007 at 10:42 pm

    I just walked home from a concert in the park in downtown Arlington Heights.
    The moon is almost full and it’s a beautiful evening.
    As I walked I thought about the canoe trip I took with friends and family, 2 years ago tommorow. By the following Saturday, I was in CCU and on life support. As I walked I could only thank God for recovery and a bit more time to spend with wife, friends, children and grand children. I was 64 then and now as I approach 67(January), I am able to walk and do most everything.
    So I doubt it is an age thing. It could be easy to why me…..my feet feel like I’m walking on bunched up socks, my left eye waters a bit, my upper lip feels “numb” and my hands tingle….but hey I can enjoy the neighborhhod, an almost full moon, a walk home and concert with Cathie.
    Granted my recovery is better than many, but maybe some of the folks need professional help.
    I will pray for them.

    April 12, 2007 at 9:18 pm

    Hey Gene, I know exactly how your feet feel.
    I am about 18 months post GBS and every time I put shoes on, I have to tell myself the socks are on correctly. As you say – it doesn’t stop you from walking; but it can be annoying. Certainly better than flat on your back and a machine breathing for you.
    Keep on keepin on.
    AL

    February 21, 2007 at 10:31 pm

    Gramps…It’s hell. I was 64 in Aug ’05 when gbs came along. Not retired but I hear what you say about enjoying and not having to worry so much about supporting a family. I spent 2 weeks in CCU, 2 weeks in specialty hospital to wean off the vent, 5 weeks in acute rehab hospital, and 6 weeks out patient therapy.
    I can tell you that progress is slow and somtimes it seems like you will never get back. When I came home and had to get up a few steps with the walker, I was scared to death; but for me recovery has been good. I was able to get back playing golf last spring….walking on grass the first few times was perilous. I sure appreciate the effort that goes into physical rehab, and the feeling that I can’t do it. BUT you can, because we believe in you!
    Keep the faith.
    Papa AL

    February 21, 2007 at 10:19 pm

    Sharon,
    I think my wife was more worried than me when I got the first cold. It is definetly scary, and every tingle you ask yourself…is it worse today than yesterday…or now than an hour ago.
    As has been said recurrance is pretty rare. The symptoms and worry are worse when you are tired so try to get as much rest as you can. I had pretty good luck with Tylenol PM, to diminish pain and get sound sleep.
    I’ll keep you in the lenten prayers.
    AL

    February 21, 2007 at 9:54 pm

    Hey Geezer,
    I’m 66 now and was 64 when gbs hit. Keep at that walking, soon you will be able to go further. Good idea to use a cane if it’s dark or bad weather. We don’t need you falling and back in the hospital with broken bones.
    I spent 2 weeks in CCU; 2 weeks in specialty hospital to wean off vent, 5 weeks in acute rehab hospital and 6 more weeks in out patient therapy….but I was able to play golf last spring and summer. Now I walk at least a half hour daily and ride exercise bike.
    Keep on keepin on.
    Al