I'm new on this, my husband is on day 10 on GBS. Apart from the obvious, how can I help him mentally with this?
He is a very fit, marathon runner who works very hard, has 2 young children and is still feeling like running up a mountain somewhere in his nerves but there's no connection between them.
I visit everyday and feel like I am comforting him but I want/need to do more...I am the outside link, he doesn't want to see friends whilst so disabled right now. Any suggestions...he likes music and hot showers!
My father in law's partner is on a ventilator and is now approaching 1 month. Because of distance problems and other disasters we selected two close friends to visit initially. Fortunately they are good at carrying on a one sided conversation. Over time there has been greater interest in seeing more friends (as well as some success using a speech board).
The limited amount of visitors has definitely caused some problems with his friends who all want to visit. We requested no visitors and ignored that some people chose to visit anyway. Time has helped in gaining energy/desire to deal with visitors.
Tell your husband that although it may look bleak now, he will recover. I was stricken with GBS last year in May. I was paralyzed from the neck down. Couldn't move my fingers, my hands, feet, legs.....nothing. But my neurologist assured me that I will recover but how much? he didn't say. It's all up to your husband how far his recovery will be. From reading your post, sounds like he's a fighter. That's a good thing. Tell him to work at getting back to his normal self and don't accept anything less. BTW, I returned back to work in Jan where my neurologist told me it would be about a year and a half to where I can even think about returning to work, So hang in there. God Bless.
Soencer will tell my sister your story she needs a light at the end if this dark, bleak tunnel… She is in month 3 and was in a ventilator for the first 3 weeks. In rehab now but 6 weeks in still cant stand up unaided… Try to keep her positivity up but she is feeling very defeated.
Congrsts on your recovety. I can imagine was a struggle. May i ask if you have any residue?
Magaly, I was completely paralyzed from the neck down for about 5 weeks. I was intubated for 9 days. Compared to other stories I've read, the duration of my paralysis and being on the ventilator was pretty short. But being drugged out made it seem like forever.
Tell your brother to hang in there. It's going to get better. God Bless.
Anna, its been 13 months since I first came down with GBS and 10 months since I left the hospital and rehab. When I left, I had to use a walker to stand and walk. Then a week went by I changed to a cane. Another 3 weeks later I was walking unassisted. My legs from my thigh down to my feet were numb, Today, thighs feels fine and only feet are numb. But even still I can feel my feet getting better. Also both hands were numb and somewhat tingly. Today only a slight pressure on the hands. My core muscles is getting stronger but still a little weak. And lastly my left leg is slightly weaker than my right side but even that I can feel it getting stronger.
Tell your sister to continue therapy and her fight to get better. Attitude during therapy goes a long way. Don't give up because once you give up and accept defeat, your body shuts down and progress stops.
God Bless and Stay Strong.
Anna banana said:
Soencer will tell my sister your story she needs a light at the end if this dark, bleak tunnel... She is in month 3 and was in a ventilator for the first 3 weeks. In rehab now but 6 weeks in still cant stand up unaided.. Try to keep her positivity up but she is feeling very defeated. Congrsts on your recovety. I can imagine was a struggle. May i ask if you have any residue?
I was in a rehab hospital for 2 months and went through IMMENSE PAIN upon being released. Max doses of Neurontin (1200 mg 4 times a day), pain meds and support from family was my lifesaver. It WILL GET BETTER, just not as fast as you want it to. There will be good times and bad times. Don’t let the bad times discourage you. It’s ok. I was given a 1 year diagnosis of being able to walk again and I’m on 6+ months and walking. Not that steadily but without my walker and that’s AMAZING. Recovery will come it just doesn’t happen as quick as you want it to. It does happen though. I was a pretty fit single mom of 2 and highly independent so it hit me hard. Everything will be ok, it just takes time.
Also, don’t let the timing in the pain meds and Neurontin slip. BE VIGILANT. When I had lapses in medication my pain went into an uncontrollable spiral and took many days to recover.
it just doesn’t happen as quick as you want it to. It does happen though. I was a pretty fit single mom of 2 and highly independent so it hit me hard. Everything will be ok, it just takes time.