I slept a lot in the hospital and rehab. I think it would be perfectly normal and even encouraged to sleep/rest as much as possible considering what we endure at onset and beyond.
If you think he’s sleeping too much or too hard (for him), ask the doctors/nurses if any medications have drowsiness as side effects. After I went home it took me two weeks to realize that I was way too tired. I felt good and wanted to do stuff (within reason), but I couldn’t stay alert very long and felt fogged up. The allergy meds they prescribed were ones I’d had trouble with earlier in life. (Sleep driving on Benadryl) I was just too worn out from the GBS to remember that kind of thing. Another med made me gain a lot of weight very quickly, messing up “everything”. (a lot= 50+++ lbs)

Hi. I’m trying to imagine your travel challenge…I had my own early on, but not quite like yours!
Can your local clinic/regional medical center possibly set up Skype for any meetings that are beyond your travel comfort zone? Maybe your main doctor can sit in on this type of meeting and discuss what needs to be done/looked at/??? I wouldn’t suggest that except recently I had to Skype (1st time for me!) with a Pharmacist about a family member’s prescriptions post-operation.
I realize that won’t fix it for every appointment, but if it can cut down the travel a bit, maybe???

Did the 3 of you in rehab all have salmon from the same place? Or same type of salmon (sushi, etc) from different places? That would be interesting to know. Or that could be a coincidence.
Check with your doctors about sushi. Maybe the slightly cooked version would be safer until that has been ruled out as the trigger of your GBS.

Your son’s conditions include a lot of variables.
He was diagnosed with leukemia: Had he been feeling “ill” or was he diagnosed following a routine check-up during which something was discovered? (I apologize; these things are not talked about in my family even though we have a history of cancer.)I bring this up because he was possibly either feeling poorly to begin with or the diagnosis was a shock to his system.
GBS has knocked plenty of us barely conscious (or worse) even when we were very healthy just hours before… I was on a ventilator for a week. I don’t remember having any pain but I felt like I’d just been shoved through a colander. Twice. Then rolling-pinned.
I don’t know much about the paralysis, but I have read about people being hospitalized for 6 months, maybe more. Each person’s experience is so very different. The lingering effects are also random.
This little bit has taken me a long time to write. It is difficult to come up with the words you need to hear when I wish we all had magic wands.

Hey! That’s another thing mine did- that forward tilt. I forget why “they” said it was necessary, but it took me several months after not wearing them to stop feeling like I was starting to fall. I thought it was just weird-little-me that had that happen to.
I have an aversion to nylons, so I got cotton/poly (still not ideal material) knee-highs, which were barely high enough for the orths. And since they were so high up my leg, removal for driving was impractical. (I rarely wear skirts/dresses/culottes/gauchos…) I wasn’t given the option of other types of torture devices, either.

I’m inspired to try running again!

Before you quit…Have you investigated other ways to keep your job? Depending on where you are, there should be rules/laws about disability accommodations. Something as simple as chairs/adjustable height stools could extend your current position. I’m guessing that as we age our previously controlled symptoms might creep back, similar to during periods of exhaustion.

I was born with foot drop- right foot (unrelated disability). PT at the hospital assumed the foot drop was a result of the GBS, so I was fitted for a set of orthotics which have caused very bad issues of their own…even 5 years down the road. (Bad fit= feet sliding= toes crushing= toenail issues= pain.) [long story] Proper fit is essential. (A few months after I started wearing them, the fit was so bad that the Orthotics Dude (not his official title) came to my home for a re-evaluation. He told me I’d have to wear them for the rest of my life. As he got into his car I said, “F*** that s***” and took the things off and threw them into my cellar. Then, after I got the things out of the cellar, I threw them into the garbage.

If you love (or even just really like) your job DO NOT give up. Figure something out.

Hi. What a way to start retirements.
Does the hospital/clinic where your dad was treated have a social worker or office that can direct them to one? One or two meetings (in home or not) may be all they need to sort out options beyond how things are now, depending on their resources. Hiring a cleaner, meals-on-wheels, organized adult activities (if dad can’t drive)so mom can have some free time… These helps, even if only used a few months, can help them get into a better routine and adjust to the “new normal” and rise above it.

Hi!
If you have not yet, read the post (thread) started by Cassie under the exercise tag. There is a lot of helpful ideas there.
At this point in your recovery, please don’t worry about feeling superficial. It is early yet and this thing is quite the shock to the body, to the person, to everything. I’d say “never” feel that way, but it is bound to wiggle its way into the thoughts anyway. Just don’t dwell on it too long…or if you feel like dwelling for a while, throw rocks at a river or bread at ducks-please, not rocks at ducks! Take an art class even if you have no talent.
I’m not sure what to say about your partner. My own family isn’t supportive even though they had to take care of my pet for the 2 months I was in hospital/rehab. As if I’m faking this whole thing. Check out the publications available on this website. My family wouldn’t read them, but the info helped me understand what I’d need to be aware of doing for myself.
We’re here for you.