I had a relapse

September 21, 2009 at 8:25 pm

Hi Marcia,
I am so sorry I was not on line to answer you sooner. I really feel for what you are going through, I saw it from your husbands point of view. I was diagnosed with GBS/MFV in January of this year. I was hospitalized, had IVIG treatments for 5 days then moved to rehab. I went to therapy and tried my best to do the exercises, etc. but on 2/20, 4 weeks from my admission, I woke up and saw my left hand was acting funny. When I came down with GBS my right hand curled up and my legs and arms wouldn’t move. I was terrified when I couldn’t stand up with the help of the nurses and the side rails in the rehab center. My neuro confirmed I had a relapse and re-admitted me to the hospital. I had IVIG for 5 more days. I was so frustrated. I was sent back to rehab where I stayed until mid-March. I had therapy everyday and eventually could use the walker.
Your husband’s muscles are going through atrophy now and he is going to have to work so hard to get his strength back. I know how hard being the caregiver is on you, I saw all the stress on my husband and he didn’t have to do nearly as much as you. One thing I can tell you as the patient is that I never wanted to ask for anything. I already felt I was a burden. I needed to hear when I made the slightest bit of progress, I needed a hug. I know that may sound funny but I was so lonely from the whole ordeal, that I welcomed a hug to make me feel normal.
You should make sure your husband takes deep breaths everyday, the GBS can affect his lungs. I couldn’t swollow so I needed pureed fod for awhile. You need to keep your eye on your husband’s ability to swollow his food so he doesn’t choke.

Please take care of yourself. You will get through this, it is good you are communicating with each other and sharing your feelings. I pray your husband will get the treatment he needs and get better.