Elderly Dad with GBS

    • Anonymous
      June 20, 2007 at 3:04 pm

      Hey, I have a father who is 82 and was diagnosed with GBS about one month ago….He had the IVIG and that didn’t work; but the plasma exchange did.
      He is still not walking but his arms have come back ( left one better than right)…He is in Rehab and will go onto skilled nursing.

      As of yesterday, he began to lose movement in his good arm and hand….Has anyone experienced this? I thought he would continue to improve; yet, so I hear that there are ups and downs? Is that true? Very discouraging for him and disheartning for him….

      I am hoping someone with an elderly person with GBS can shed some light on this for me; what your experiences have been?

    • Anonymous
      June 20, 2007 at 6:57 pm

      hi denise & welcome,

      2 possibilities; 1st is that he is getting too much pt/ot which means he needs less exercise & lots more rest [he must recover from any exercise in 12 to 18 hours or it is too much & will hamper recovery], 2nd he is having another gbs attack. a ncv compared to a previous one will show which it is. if the later, he needs more pp. do NOT let him be xferred to skilled nursing in this condition. i mean it. he must start resting big time immediately & let’s hope that is the prob. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 20, 2007 at 9:54 pm

      I am so sorry about your dad. My mom is 78 and was diagnosed 3 weeks ago today. I know it’s so hard to see your parent at this stage in life having to fight and struggle so hard, but it is treatable. Was he experiencing pain prior to the setbacks? That might be a dumb question, since it sounds like pain is synonomous with this illness. How are his spirits? Is he holding up alright?

      My thoughts are with you.


    • Anonymous
      June 20, 2007 at 10:42 pm

      I”m an 81 GBS patient , dx May 2005. Gene is right, rest is crucial , it was almost 3 months before I came home. Had wonderful care, PT and OT. Now swim, do aquaaroebis and am at home. I have the axonal sensory and neurological variationa which makes my recovery slower. I use a rolator to assist me in walking and am thankful. Your Dad will improve, maybe slowly. Keep him possitive. My best to him and you.


    • Anonymous
      June 21, 2007 at 9:44 am

      Good morning Denise.
      I am into my 5 th month of recovery. When I was going to PT my instructor said every other day was when he would do my PT. I was to rest in between. I had one hour sessions but they were very intense. I still need a day a week for me and to rest. One thing he told me was to exersise and then rest a day. I pray your dad will continue to inprove and keep him in my prayers. (Steve)

    • Anonymous
      June 21, 2007 at 7:43 pm

      Everyone is right! REST is so very important. Power naps don’t work and neither does cat naps. We are talking a few hours for a nap. When I was in the first part of my rehab I was doing great but they watched how much they did and on other days they worked on other areas not to over work me. Little was done for Occupational Therapy and some was done to envolved the Physical Therapy. Just chewing my food tired me out and I wanted to fall asleep while eating a soft breakfast and drinking. They worked me early in the morning and maybe got me out of bed in the afternoon. If I was going for a test that morning or afternoon they skipped that visit. They were always doing exercises in the bed that helped me to learn to roll over and get some strenght back so I was able to push the call button for the nurse. It takes a long time for those things to all come back. I got visitors just at night that way I got plenty of rest between the PT/OT and meals. The Bath and changing the sheets took alot out of me. I tried to eat first and I could fall asleep during my bath if I got tired. After I was transferred to the rehab floor it was all I could do to get enough rest. I got read for my day and did rehab in the bed before breakfast. then after breakfast they would get me dressed and take me to rehab and bring me back and tell me to nap till lunch and then rest after lunch till they come to take me back to rehab. Before dinner I took another long nap before my meal come and then tried to stay awake for my visitors. Twice a week I had my best friend come in for the full day and she read a chapter out of a book to me that was a comedy. Either arranged for someone to come in and do my hair or she would wash my hair. It was not washed for over a month in a half and they just used the powder shampoo before that combined with the oil turned that into cookie dough. My friends visits were always great she would let me sleep and would read or watch tv or go to the cafeteria while I rested. Those visits gave me something to look forward to and also to make my weeks go fast. She even made sure she visited over each Holiday I was in there to make them special. Those days I felt really relaxed and rested….it was like a day out with the girls. She was also good at asking just the right questions when the Doctor and nurses come in. She was a great assest to my caregivers! Hubby and Son had too much to handle while I was in the hospital for 9 weeks. She kept them all informed so that the same questions were not asked each day. Those wore me out! I could start a sentence and she would finish it! She was the one that caught them giving me Morphine instead of a pain pill as I had requested. I had night terrors from the Morphine like her husband had and she was able to talk it over with me and alert them to what was happening.