Do you have any experience with Guillain-Barre Syndrome?

A friend of mine recently was diagnosed with it. While I can Google information about it easily enough, I wondered if anyone on the board had ever had it or knew someone who had it.

Very sorry to hear about your friend. I have no personal experience, but I would like to recommend the book “No Laughing Matter” by Joseph Heller (author of "Catch-22). It’s his personal take on having the disease.

My brother-inlaw had it last year. What a scary, weird disease - basically, the myelin sheath disappears from your peripheral nervous system and nerve impulses can’t travel. Things start shutting down and (for some), they may eventually require breathing help. But fortunately most people recover even though it can take a long time.

mr kiffa was in Kinshasa when he got ill and was flown to Pretoria. He has been recovering quickly, most likely due to his excellent health. I’ll email this link to kiffa and see if she has anything to add. Good luck to your friend, Snooooopy.

I have had a number of patients with it (I am a psychologist in a rehabilitation hospital). Recovery is slow, but most people get most of their function back. Some continue to have problems with being easily fatigued, but are otherwise fine. A minority continue to have weakness, but at this point, there is reason to be hopeful for your friend.

I’ve cared for 5 G-B patients. Well, actually 4 people, 5 times. It has a high incidence of recurrence. All of them were young. I believe the oldest was around 30 the youngest 14. All recovered, after a great deal of rehab.
The symptoms start with flu-like symptoms a few days to a week before the neurological symptoms commence. It starts from the feet and travels upward. It can take as little as a day to go from tingling in the feet to respiratory failure.
When paralysis reaches the chest muscles, without medical intervention, breathing becomes difficult, then impossible.
At its peak, the paralysis is complete, down to blinking. Artificial tears are used to avoid permanent damage to the eyes.
Initial support included endotracheal intubation (a large tube is passed through the mouth or nose into the trachea.) which is attached to a ventilator ( a machine that simulates normal breathing) Because recovery is slow, often a special be is used to prevent complications related to being bedridden. There are a number of “air” beds. They are mush different than the ones advertized on TV. The cheapest style costs about $10,000.
The patient needs to be moved frequently to keep fluid from pooling in the lungs. There are special beds to do that as well. One type turns side to side 20-60 times an hour.
The patient will have a tube passed through his nose to the stomach for feeding. He will also have a urinary cathater to drain the bladder.
This all takes place in a Critical Care Unit or ICU.
I hope your friend recovers quickly.

mr Kiffa came down with Guillian Barre Syndrome last May. It was frightening, scary, un-nerving, perplexing, weird, horrendous and, as Brynda says: Most people get most of their function bank.
Heller’s book is good, but can be discouraging because it took him such a long time to come back.

Several things:

a. It starts slow and can be very rapid; the biggest problem is loosing the ability to breathe. That is the major reason why folks are admitted to the Intensive Care unit at the hospital.
b. Each person’s descent, stabilization and recovery periods are different; that’s why doctors will say “let’s play this one day by day”
c. The worst thing is to see your lover walking/stumbling around as if s/he were suffering from mad cow disease… until they are restricted to bed because they have lost feeling, all balance and ability to walk.
d. Both my husband and I are in public health; but mr Kiffa promptly forgot everything he had learned/heard about GBS.
e. he promptly forgot about the fact that in most cases the paralysis is not permanent and, on average, recovery is 8 to 12 months.
f. It was until it was obvious that he had reached the plateau [after six treatments of plasmaphoresis], that mr Kiffa started asking questions about recovery.
g. Relapse are extremely rare.
h. mr Kiffa was back in Kinshasa within 5 weeks: one week in intensive and high care, one week on the regular ward, three weeks in rehabilitation center.
i. Gross motor skills are the first to come back [generally]. Fine motor skills take more time because of more nerves and muscles involved. mr Kiffa was walking unassisted in 3 weeks, jogging in4 and playing jumpless basketball in 5 weeks.


Here is what you can do for your friend:

  1. Be supportive; I don’t know what stage your friend is in, but you can help by just being there. Buy an electric/battery operated toothbrush. the more mr Kiffa could do for himself the better he felt about himself.
  2. Keep a positive attitude; “this too will pass” was our mantra.
  3. Be helpful; I did most of mr Kiffa’s nursing in the hospital [where I was able to have a separate room for myself]. I fed him, bathed him, walked with him, cried with him, added artifical tears when he couldn’t close his eyes… do what you feel comfortable with, but always with your friends approval.
  4. Be pushy; but don’t be aggressive. you will need to be diplomatic. mr Kiffa wanted to race down hospital hallways. Help your friend pace their energy exertion.
  5. it takes time to come back; many people won’t recognize your friend. This was one of the more painful experiences; mr Kiffa’s face was paralyzed so he slurred his words, had little facial expression [that’s the reason why you need to ask questions and demand honest answsers back], he was not easy to recognize. my acquaintances did not recognize him; several cried when they realized what had happened. I run into people who would ask about mr Kiffa when he was standing next to me. I got to hand it to him… he faced this realistically… I probably would have belted someone.
  6. Make sure that your friends employer understands whats going on. mr Kiffa’s office set up a special lounge chair, assured him of office transport back and forth from home, said that he was the one to determine when he would work and when he would rest.

Sorry that this is such a long long response to your question. I hope that I have provided you with some helpful information. Please feel free to ask me anything.

Final word: don’t forget about yourself. I eat everything in sight when I’m emotional. i gained ten pounds, but I probably had the nicest looking pedicured toes in all of Africa! That was my way of pampering myself

A friend of mine has it. He’s 37, a programmer, father of three, and was diagnosed with it maybe 4 years ago. The most noticable thing about the disease for me is how he often lets stuff fall out his hands. He just loses the grip and the strength to hold onto it.

PICUNURSE: I understand that recurrent GBS is very rare; less than 3%, yet you said that it happens frequently. How about a site for that?

Secondly, not everyone starts with numbness in the feet with progression upwards. mr Kiffa’s started in his stomach and radiated out to his limbs. He was diagnosed with “typical atypical” GBS which illustrates the fact that GBS manifests itself very differently with different folks.

Thirdly, not all GBS cases require ventilator support. mr Kiffa didn’t. a tube was inserted when he started having problems swallowing, but he insisted that it be pulled out because it was painful [about the only thing that continued to semi-work].

Fourth, he maintained bladder control.

Every case is different… play it day by day…

Is this a burning issue?

kiffa Sorry, I was speaking from memory. I worked in adult critical care 20 years ago. All but one of the G-B patients were during that time. The one child was maybe 8 years ago. Not as much information was available then. The recurrence issue was from a neurology book from the hospital library. I can’t begin to remember the name. I do remember I looked it up because one patient relapsed within 18 months. His family needed answers. I got them from the only source I had available.
I should have updated my information. Lessons learned.

Sex in the ICU? Well, we do pride ourselves on caring for the entire family, but… I guess its not been an issue on my shift.