brother with GBS, need advice

    • Anonymous
      January 6, 2011 at 12:00 pm

      My brother was dx in June/July 2010 and he had symptoms for over month before they dx him. He could hardly walk by the time he received treatment and his face was completely numb, but he never lost the ability to breath. He had been laid off in mid-May, started having symptoms about 2 weeks later, started a new job on the 1st of June and two days later started going to the emergency room. He only worked 2 days at the new job. He never was able to get unemployment and now was unable to work and has been denied disability benefits because it has not been a year yet. So, he has been living with us since June and we are paying his COBRA.

      We were not able to afford PT, so he has had none. The doctors released him in October. He is walking just fine now, still has some tingling sometimes in his fingers and toes. We want him to start looking for work and I really want to start pushing him to exercise (he does none!), but after reading some stories of relapses, I am concerned with how much I should push him and how fast.

      If he has had this much recovery with almost no exercise or PT, how hard should I be pushing him. He does not complain about fatigue and never takes naps, but does complain about back pain. It is becoming frustrating, and we can no longer afford to pay for his COBRA. I have a son with CF that is now living home and also has no income until they get SSI going (who knows how long that will take!).

      I really could use some advice. Sorry this is so long.

    • Anonymous
      January 6, 2011 at 3:43 pm

      I understand your poistion with your brother and your desire for his improvement, but time is a major factor with healing and getting better. PT, for me was just getting me comfortable with moving around and dealing with my surrounding. Some people are able to return to a work schedule in 3 months but most people with GBS require more time. I was 8 months before I returned to work fulltime and had a difficult time with it and at 12 months I had to stop work because I could not handle excessive hours and activities. At 3 monhs I was happy to be able to walk around the block and help with a little housework. Rest is really very important part of healing. Good luck to you and your brother and I hope for a full recovery for him.

    • Anonymous
      January 6, 2011 at 11:29 pm

      My personal feeling about PT in regards to GBS is that function tends to return as the nerves heal. PT is most important when one is lying motionless in bed (range of motion), or teaching one how to do transfers from the bed to the wheelchair, doing stand-up transfers, & first learning how to walk. Once a person is to the point where your brother is, then PT will probably not benefit him anyways. If he seems to get by on a normal amount of rest, then he could at least try working, he appears to have made a very good recovery already. If it turns out to be too much for him, then he quits with nothing to lose. Relapses are very rare, a flare-up of some minor symptoms would be more realistic if he were to overdo it.

    • Anonymous
      January 6, 2011 at 11:51 pm

      For what it’s worth, my back feels better with exercise…

      That being said, everyone is different. Each person knows his/her own limits. Maybe your brother is afraid? Doesn’t know what else to do? GBS can be mentally taxing.

      Good luck! Come back to ask more questions – send your brother over, too! The people here are very nice! 😉

    • Anonymous
      January 9, 2011 at 7:55 am

      Hi sweetie, sorry to hear about your brother! This is my 1st post since having GBS in 2002-2003. It sounds as tho his is very similar to what I experienced. I am now 35. Exercise is VERY important! When I don’t, I seem to go down and stay down! The trick is to not “push it” with anything! Some days more, some less, as long as he stays somewhat active will be to his benefit. Also stretching and working on flexibilty will help. I rarely ever have a good night of sleep, so I make sure I get “some” downtime. I could work after 1 year. Have worked since, but have had many “episodes” where it took everything I had to work. Several doctors/neurologists in my area have little info. (Maybe don’t believe us!) I’m always back to where I started! In the past year, especially the past month, I know I’m going thru the worst “flare-up ever!” Cant hardly walk, arms/legs numb, tingling pain and alot more! I’ve had tons of tests again that don’t show a thing! Finally found a nurse practitioner that believes me. Stand up for your brother to doctors, etc…we are liable to push to get things accomplished most of the time! (They don’t understand) I’m also allergic to all pain meds except Ibuprofen, which I only take ever so often. The right anti-depressant can help greatly! I don’t know if it’s just neurological or if it makes us sad from pain or not being able to do what we used to. I was EXTREMELY active! (Ballet, dance, Tae Kwon Do, waterskiing, and much more.) I can’t do any now, but I have breath, family and friends that remind me of what life is about! Love to you and your family!!!!