Guillani-barre syndrome

[Deuxcents]

My good friend’s neighbor was a night owl..she loved reading late in bed to fall asleep. One night in September 2020, she had fallen asleep n went to get up for the bathroom n shut off the lights n could not move. She has been paralyzed from her chest down ever since. Asking for a support system for her or..where can she get good care to maybe survive this. She’s 61 n lives in sw Florida but no one here seems to know where she can get the care she needs. I think the system has failed her. Any suggestions n I will pass them on to my friend. Thank you.

[SWBTATTReg]

1. Nothing that I can suggest that would be better than what her current docs recommend, etc.

I am so sorry to hear this, I hope that perhaps she can come out of this horrible condition. My best to you all, please keep us FYI'ed on your friend's condition.

Being immune-suppressed by your own nervous system means a rigorous treatment routine, for several years or even a lifetime. You didn't really mention the problem(s) etc. that she's facing in her treatment routines, perhaps this disease is so infrequent that doctors are at a loss to prescribe the adequate treatment(s) needed? I'm surprised that in FL, that some type of long term care or home care isn't available, perhaps there is. Sending vibes of strength and energies to you all down there.

[tanyev]

2. My advice is to repost this in the Health group (link below) or even the Lounge.

https://www.democraticunderground.com/?com=forum&id=1142

I think the Community Help forum is more for tech questions.

I had a boss that had GBS. She got some treatment in the hospital and then did rehab for quite awhile. She did finally recover. She said she was lucky she had a doctor that was familiar with it, so that might be a big barrier to successful treatment.

I know there are some DUers that have had it: https://www.democraticunderground.com/100215268038 Hopefully posting in Health or The Lounge will get you more replies.

[Deuxcents]

3. TY

I’ll try another venue