5 weeks and progessing….

    • Anonymous
      July 7, 2007 at 12:56 am

      My 78 year old mom (in Buffalo NY) is 5.5 weeks into her diagnosis and progressing what I think is steadily. They’re working really hard to remove the trach- hopefully next week (although I swear I’ve been saying that for 2 weeks now!). They finally started her PT and OT yesterday. It breaks my heart to know she’s in the hospital and fighting so hard to be okay (especially at this point in her life!). She still isn’t moving her legs- I guess she can just wiggle her toes a little. A little is better than nothing, I know, but I also know she’s really afriad of being in a wheelchair. I’m afraid to tell her it’s probably an inevitability (hopefully, short term).
      Since I’m 3000 miles away, you all have helped tremendously. Thank you for all the info and insight and support!
      I’m going to see her next month for her birthday- hoping we can celebrate no trach!!!
      (Hope seems to be the constant theme, doesn’t it?)

      Thank you!!

    • Anonymous
      July 7, 2007 at 11:45 pm

      Hello Jenn,
      I am guessing that your mom has GBS (Guillain-Barre). I have another syndrome called CIDP. You said five weeks, so I’m guessing again that was when your mom was diagnosed. GBS is a syndrome that you recover from very very slowly, so five weeks isn’t a long time. Give your mom about three months of Getting Better Slowly. Is she getting treatments like IVIG or Plasma Exchange? She may need a wheelchair for awhile, but look at that as a BLESSING, I do. I am 66 years old and I have been in a wheelchair for almost ten years and it makes me more mobile then what I can do with a walker.

      We do have HOPE, so don’t give up. This person can help your mom and the family that’s in Buffalo with her. She’s the GBS Foundation Liaison for Buffalo
      Sr Eleanor O’Brien. I don’t know if I’m allowed to post it, so if you want a phone number or email, click on my name, PM or email me and I will send it to you.

    • Anonymous
      July 8, 2007 at 10:10 pm

      Hey Jenn, your mom has been in my prayers for awhile now, she is an inspiration. Please send my best and take care of yourself.


    • Anonymous
      July 9, 2007 at 8:54 am

      Your mother sound like a extraordinary individual. You and your mother have been in my prayers and will continue to be. Don’t worry about the wheelchair. That’s tomorrow’s problem. Just think about the birthday celebration.