Hi Elvira. My case is/was right in the middle; not severe, not “minor”, average. ICU 2+ weeks, rehab hospital 6 weeks.
I couldn’t stand at all for 4 months and wobbled badly for at least 2 more. It might’ve gone faster but I had horrible pain from my knees down (where I was paralyzed). The pain faded as I forced myself through it.
My hands were a different story. I was born with a limb difference, so occupational therapy was a challenge beyond usual. I couldn’t do anything with my hands for 2 months. I slid my food toward my face more than pick it up, my fork usually ended up backwards or upside down. It was so hard! Which was a shame because my hospital’s food was fantastic.
One day one of the nurses took lunch break just as I was feeling antsy, so she went with me to the gift shop (just to get away) and as we went we had an inspiration… and picked out a large-print crossword puzzle book. That helped with my handwriting so much! Then, when I went home, I had to improve quickly because my critter needed to be petted, but he nipped because I couldn’t do it right (prima donna crazy bird).
I hope any of that helps.

Kathy- (Qualifier: I’m a dork.) Best of luck on Monday! Glad your team is on top of things.

Hi! I was diagnosed almost 7 yrs ago. I’ve heard of others with the band of pain or tightness around the torso. The first time I experienced something similar I thought I was having a heart attack, but I’ve broken ribs in the past so it was probably rebound pain from that.

You are still very early in the GBS experience… improvements come in fits and spurts. Some people have a lot of pain consistently. In my case, I have lower back pain (from the spinal tap? from a previous soft-tissue injury’s rebound pain?) and my feet and lower legs were in insane pain when I was first learning to walk again. Everyone is a little different… Fatigue is a new normal. Hands were numb- had to learn how to do everything again.

I’m sorry to hear about the cancer, too. I hope you’ll be able to get the rest you need.

I’m sorry that you and your wife have had such a difficult time. I’m curious about why you had to go through so many doctors… not blaming you, just wondering, but others have had similar experiences.

I know nothing about IVIG so I hope someone more familiar can help.

Recovery is quirky. “They” say it should take from 6 months to 2 years, but that is such a generalization (not taking into equation of how severe a case there was, how long it took from onset of symptoms to get diagnosed/treated, general health, etc). And that just refers to getting “functional”; there are residuals (numbness, tingling, others)that can linger.

Is there a center of excellence near you?
Are you on Facebook? Look into GBS/CIDP there. I avoided FB for years… wish I hadn’t.

Best wishes

Hi. How did things go at the appointment? [I’ve had computer issues (aarrgh!)]

Hi there! You sound like a wonderful person! Smart, hard-working, positive, and I detect a sense of humor.
If you haven’t already, check out the support tab (above) for groups in your area. It is a good place to start. Actually, this whole website and organization are great. Even before I was able to go to a local support group, I read deep into the “archives”. Just reading other people’s experiences, progress, and questions (even years old) helped me “get” things. I met someone at a meeting whose experience was almost identical to mine (even month of onset of GBS) except that my lifelong insomnia got better (because I was always exhausted) and they could no longer sleep well due to pain.

Back in the day, I would clean like a maniac when frustrated. After diagnosis (and 2 months in the hospital) I got tired just brushing my teeth. My energy level is better, but I still wish I had super-organized and simplified when I could run around like a maniac. I can go for long hikes, but standing in one area (like a cashier) is excruciating.

Hi.
Do you have enough energy for more PT? Check with your doctor. S/he can order more PT or daily but shorter sessions. Is there a regimen you can follow at home (if you have not already)? Is there a more optimistic therapist available?

I’m bowing to you over the internet.
My uncle spent his whole life institutionalized or in group homes… well over 65 years.
Appointment fatigue is hard enough when a patient can fully understand what’s happening.
I was sitting here reading your story over and over thinking I have nothing to offer, but then I had an idea. (Okay, I’m on the GBS end of things, so if I had IVIG I don’t remember because I was asleep a lot while I was in the hospital and things are still a blur.)
Has he ever had a weighted blanket? You didn’t say what his mental challenges are, but these blankets are supposed to be quite calming. Even a lap-sized one could help. ??? And maybe some dexterity play-do stuff to squeeze when frustrated?