Now let's say we've got the patient back through. We've made it through this.
Hopefully they didn't have to go on a ventilator.
We've used the plasmapheresis, the immunoglobulin therapy, we've got them back on the road to recovery.
Now, what is rehab like?
Well, as they improve, we usually move them from acute care
which they probably went from a critical-care down to a -- to telemetry step down.
And then from its telemetry unit to possibly a rehab setting.
Some people may have been able to be discharged home.
But if they have to go to a rehab setting, this is where we as nurses collaborate
with therapists and special rehab physicians to set up a plan of recovery.
So we'll work with physical therapist and occupational therapists,
and we'll help the patient regain their normal strength and their ability to do their activities of daily life;
feed themselves, dress themselves, walk, move, use the restroom.
It takes some patients having to kind of relearn those skills all over again
because muscle strength may not return uniformly, so remember that.
Some muscles may get stronger faster than other muscles.
So we have to teach those strong muscles how to compensate for the weak ones
and help those weaker ones get stronger.
So, what is the long-term outlook for Guillain-Barre?
Well, we've talked about how Guillain-Barre can be devastating, life altering.
But about 70% of the people with Guillain-Barre, they experienced a full recovery.
Even patients with a respiratory impairment survive with treatment.
Now to the other 30%, the residual can also have a wide range.
They might need to use assistance like a cane or a walker or some other type of tool,
but they still are at a far better place than when they were at their weakest with Guillain-Barre.
So let's kinda look at this if we look at on another timeline.
So, point of greatest weakness, majority 2 to 3 weeks.
But for everybody, its four weeks after the first symptoms occur that's usually the weakest the patient will be.
The next phase, days to months.
Symptoms stabilize at this level for period of days, weeks or sometimes even months.
Now, recovery -- you see that? Up to two years.
Recovery for some patients can be slow or even incomplete.
So it may be as little as a few weeks that's the best case scenario up to a couple of years.
So, you'll have to -- when your patient asks you, "How long is this gonna take?"
The answer is, "We don't know. We're just gonna work with you.
We'll stick with you till we can help you reach your highest level of functioning."
So some individuals really do still report ongoing improvement after two years even,
so help your patient remain positive.
Such a difficult diagnosis, so life altering, they're gonna need a lot of encouragement
and recognizing areas where they actually are improving.
It may not be obvious to your patient, so always point out things that are getting better for them that they may have missed.
So, 30% of those with Guillain-Barre Syndrome have residual weakness after three years so that 30%.
About 3% may suffer a relapse of muscle weakness.
Now that would be horrible, wouldn't it? But it's a very small percentage unless you're one of those 3%.
So they have a relapse, they have some muscle weakness, tingling sensation, even many years after their initial attack.
We talked about some needs -- I have some ongoing problems about 15% of them experience long term weakness
with their muscle strength or it doesn't come back uniformly.
So they might need things like we discussed, a walker, a wheelchair, or maybe even ankle support.
Now, it's not just a physical problem, ongoing fatigue and pain
and the other annoying sensations that comes along with Guillain-Barre syndrome
can really bring on the symptoms of depression, so be alert for these.
Open the conversations about this with your patients. Ask them how they're feeling.
Do we have any signs or symptoms of depression?
The patient may feel weak and they don't wanna tell you about it
that's why it's important for you to develop a therapeutic relationship with them that's open
and they feel safe to talk to you about.
Now the fatigue, you're gonna have to help the patient understand that,
"Hey, let's identify what's most important for you."
And just like we would do with the COPD patient, we help them save their energy for the most important things,
you wanna help a Guillain-Barre patient in recovery do the same thing.
So you want them to learn how to pace their activities, make sure they have plenty of rest periods when they get tired.
And not to get discouraged because they're able to be more and more active
and they're just gonna need to have to those rest periods.
But that means they're getting better and they're getting stronger
because they're able to do more things.
Okay. Now we talked about the depression, but I wanted to come back and just have you think for a minute.
What would it feel like to be someone who's going through Guillain-Barre?
All of a sudden, the things that you used to be able to do for yourself, now you can't.
Even the very personal things like using the restroom, dressing yourself, grooming yourself, feeding yourself.
So the loss of independence is a very difficult challenge.
So, I ask that you be on the lookout for signs of depression.
But I will always recommend to a patient that counseling and support groups, I think they're both important.
So counseling with someone who has experience
with somebody having a significant medical diagnosis like this and support groups.
Talking to other patients and families of patients that have walked through this experience could be really beneficial.
That will help both your patient and their family members
and loved ones adapt and cope to this life-altering experience.
Now there is good news.
There's a lot of research in Guillain-Barre and scientists are concentrating
on finding new treatments and refining the existing ones we have.
They're looking at how our immune system works.
They're trying to figure out which cells are responsible for beginning
and tearing out the attack on our peripheral nervous system.
Now the fact that many cases of Guillain-Barre Syndrome begin after a viral or an affection,
it suggests that certain characteristics of some viruses or even some bacteria
may activate the immune system to attack our own peripheral nervous system.
So they're trying to figure out what are those characteristics of these bacteria or virus.
Maybe there are certain proteins or peptides and viruses and bacteria that are the same as those found in the myelin.
And the production of antibodies to neutralize and invade these viruses or bacteria could trigger the attack on the myelin sheath.
We don't know. But there is hope for a much better future for patients with Guillain-Barre.