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Living with Polyneuropathy CIDP, GBS, & CMT

Tips and Tricks for GBS

#1

Tips and Tricks I learned living with GBS:

-Crocs shoes are your friends. the light weight construction is perfect for people like us that drag feet, also super soft soles for people with hyper sensibility. I could not walk with the braces as they all cut into my skin, once I found out that there are super light weight shoes I never had to use braces again.

-Sleeping upside-down, with your feet hanging out of the bed helps to prevent drop feet, let gravity help you.

-un-heated pool exercises accelerated my recovery, i was supposed to be bed ridden for at least a year, I believe that what the pool helped me tremendously and I could actually see and feel how I was getting stronger.

-positive/humor is a life savior. we had GBS so what? there are millions of people facing terrible things in their lives. GBS gives you a second chance in life, use it! if you are depressed seek professional help, don't internalize!

-you are in control of the medicine you will be taken, read side effects, decide what you want to do, learn as much as possible, seek second and third opinions from neurologists with true GBS track record.

-this is obvious but we easily forget: exercise and keeping you weight in control could save your life. If you can't do some ties of exercise look for alternatives. I cannot run after my GBS, but I can do much more in a pool or on an elliptical bike or lifting weights and cardio.

-manage your energy, avoid the couch but also rest when winded, pushing yourself one inch at the time. I started my therapy by seating. the first couple of weeks I could only seat for 30 seconds in excruciating pain, just keep pushing yourself! you can make it.

-it took my family a month to be able to communicate with me at the hospital, then someone had a brilliant idea to bring an alphabet table, I blinked-spelled for 4 months but I was finally able to have a voice. in my experience I noticed how doctors and nurses immediately dismiss that you can actually think perfectly.

-family support, this is key: I am alive thanks to having someone with me 24/7. family needs to stay vigilant.

anyway this is it for now, please reach out if you need any other tips.

seta.

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#2

Great summary of ideas and tips…thanks for posting. I will be getting the crocs. I never even thought of that.

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#3

This is awesome!!!

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#4

Thank you I hope these tips help everyone and please feel free to add your own, a collective Tips and Tricks to have a better life is what we need. I am sad to always come to bulletin boards and find all sorts of discussions on meds to the point of competition who takes the strongest dosis.

more tips:

-if you take meds do it, but you can learn to live with pain, learn to manage it, find ways to minimize it, cold temps are good for your feet, but don't get a cold either ;-)

-for some reason GBS has a side effect on people, your temper gets a specially short fuse. I went through a divorce because of it, but I do not blame GBS. First step in seeking help is realizing and accepting that you need help. Then the rest is easy.

-prepping your home: make sure you have properly placed handles on the shower and on the outside of the shower as well, specially when you are starting your recovery but also long after. Prevent a fall, specially if you live alone or your are overweight. this is obvious even if you don't have GBS but nonetheless it is here for you to read it again.

-I live in a place where public transportation is no good at all. I forced myself to drive again, as soon as I graduated to a walker from a wheel chair I started to use my truck again, first in the parking lot for a week until I felt comfortable and then went to work and back. GBS issues on your feet are on dorsi flexions (pulling your foot towards your face) not to push against a pedal (Break or Gas). ONLY DO THIS IF YOU FEEL COMFORTABLE AND YOU DISCUSS WITH YOUR DOCTOR

-I was offered permanent disability, i refused it. Went back to work on a wheelchair, typed on my computer with my thumbs and had to grab pens with the whole fist. Work is therapy that pays you, can't beat that! the faster you comeback to your life the fastest your recovery will be.

-Don't feel bad if you can't do something, just keep at it until you do. Motivate yourself, no one is going to do it for you. Some things you might not do again, like me running... but the other day I was shocked... my son asked me to play soccer with him and at almost 10 years in recovery I was able to play with him. I actually ran for short distances and I was able to hit the ball without pain. Then I went back, took a cold shower and collapsed on my bed with the biggest smile in a decade!

-nerve damage is weird... it takes 15 days to completely devastate your peripheral nerve system but it takes a decade and longer to still get improvements and "reconnections" of nerves you thought you lost forever... don't give up!

-volunteer, I was visited by this retired firefighter every week while in the hospital, talk to people, give hope to others! GBS is a second chance at life!

seta

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#5

seta - Thanks for posting your tips. The world is so disillusioned as to what GB is all about. The medical community needs to become better informed and give better information to patients about this syndrome. It isn't something that just goes away in a few weeks/months. It appears to me that it is a lifelong battle. Thanks for posting.

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#6

Thanks for the list! I will add my tip that I posted in the alternative therapies, and I will say it is the one thing that I can say without a doubt helped (aside from rest and time): rebounding on a mini-trampoline. I know it may sound silly but it was fantastic for balance and building strength gently. I'd say my balance is actually better than pre-gbs!

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#7

Hi Gwen, yes it is a lifetime battle, but what isn't? we must look at the bright side and be thankful that we have a second chance at life. At least that is what I believe.

seta

Gwen said:

seta - Thanks for posting your tips. The world is so disillusioned as to what GB is all about. The medical community needs to become better informed and give better information to patients about this syndrome. It isn't something that just goes away in a few weeks/months. It appears to me that it is a lifelong battle. Thanks for posting.

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#8

good one Nostromo, definitely working on your balance will bring huge benefits thanks for the tip!

seta/

Nostromo said:

Thanks for the list! I will add my tip that I posted in the alternative therapies, and I will say it is the one thing that I can say without a doubt helped (aside from rest and time): rebounding on a mini-trampoline. I know it may sound silly but it was fantastic for balance and building strength gently. I'd say my balance is actually better than pre-gbs!

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#9

i had only one choice, now you have hundreds, crocs and other brands now make shoes that look like converse, i was stuck with the ugly shoes but still was happy to be walking without braces cutting into my skin.

seta/

T6texan said:

Great summary of ideas and tips...thanks for posting. I will be getting the crocs. I never even thought of that.
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#10

I have had gbs for 1 1/2 years. I can now stand and pivot to get in and out of wheelchair. I remember when I could barely sit up in a wheelchair and could only be moved by hoyer lift. I am older, 60. I want to share that each one of us is unique in our experience. Recovery time for one person is not the same for another. One woman in my church took 4 years to walk. That doesn’t mean it will take me that long. Hang in there. Do your exercises. Stay positive, laugh, take care of yourself. I do not know where I would be with out my church family and my close dear friends.

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#11

Ohhh, I'm full of optimism. I don't think life should be lived on a battlefield in any way, shape, or form. I most assuredly almost died: blood pressure over 300 and would drop to 70. Ventilator. Total paralysis. Pneumonia. Lots of good stuff. I most assuredly believe God wasn't through with me yet or I would have died. That was 8 months ago - March 2015. I'm 63 and almost fully recovered: walk, talk, no paralysis, exercise at the gym, etc. I'm extremely happy and blessed. I'm pretty darn healthy for the shape I'm in :o). But, today I'm a friendly soldier fighting against Guillian-Barre. The stuff is caused by "something" and should be healed by "something." Just because it is so rare and treatment doesn't generate millions of dollars for the medical community then we just turn our heads and say, "Oh well, I'm happy the doctors didn't just let me die." ER didn't know what was wrong with me and turned me down for treatment twice. I don't want my children, grand children, or the guy begging on the street corner to go through the hell I went through. Nobody should have to. I guess that is where I'm at. I might be in the wrong chat room?

seta said:

Hi Gwen, yes it is a lifetime battle, but what isn't? we must look at the bright side and be thankful that we have a second chance at life. At least that is what I believe.

seta

Gwen said:

seta - Thanks for posting your tips. The world is so disillusioned as to what GB is all about. The medical community needs to become better informed and give better information to patients about this syndrome. It isn't something that just goes away in a few weeks/months. It appears to me that it is a lifelong battle. Thanks for posting.

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#12

Absolutely! It is a life long battle. I had it in the late 90’s , still have the pins and needles feelings in my legs, still have to check my feet like a diabetic, still have to have night lights throughout the house for balance at night. Have recently had surgery for spinal stenosis, which is a side effect of the GBS which can turn up years after contracting GBS. Just take life as it comes.

And keep pushin’ on

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#13

When I can, I go barefoot, this really helps me when I’m struggling.

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#14

Thanks for your input Charles. Taking life as it comes and doing the best I can seems like sound advice. Live fully. Never know when it is our turn anyway. Namaste.

Charles said:

Absolutely! It is a life long battle. I had it in the late 90's , still have the pins and needles feelings in my legs, still have to check my feet like a diabetic, still have to have night lights throughout the house for balance at night. Have recently had surgery for spinal stenosis, which is a side effect of the GBS which can turn up years after contracting GBS. Just take life as it comes.

And keep pushin' on
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#15

Update on super light weight shoes:

HOKA ONE ONE (yes twice) super light weight and a lot better looking than crocs.

Draw back: expensive. But to me worth every penny!

Also an update on a positive side of GBS.
I had it at 36 years old, now almost 50 and I can say that I have yet to develop a wrinkle on my face. So, GBS is like having Botox :confused:
:slight_smile: we should always try humor as a therapy…

I have more updates coming soon…

Stay positive and safe everyone!

Seta

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#16

Barefoot helps me also. It will be 4 years in April. I’m still taking it one day at a time

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#17

Hoka ONe One’s are great. I wore them for the comfort, but because of bad balance had to stop. They are a very high shoe for a running shoe. 1" high i kept falling off them. O well!! Fun while they lasted

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