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Living with Polyneuropathy CIDP, GBS, & CMT

Walking without losing balance


#1

I am currently using one elbow crutch to walk and I am always focused on my feet when I am walking. If I look up in the street while walking I feel that I am going to lose balance and fall. How can I overcome this?


#2

Hi Alya,

When I was walking I used to look down and worry about people near me too.

But after a while you will regain your confidence back as you recover and will walk normally.

Try to go for walk twice everyday and increase walking distance every week. I used to go for walk in the morning and in the evening.

You will get better but may take some time.

With GBS you have to be patience.

Feel free to ask any questions.

Ketan


#3

I'm dealing with the same thing due to loss of sensation on my feet and my muscles lying to me about where they are in space.

Things we are trying that seem helpful:

Standing at the walker without holding it and looking straight ahead. I turn my head slowly as I'm up for it and eventually look straight and close my eyes. I can grab the walker as I lose balance.

Looking at a full length mirror while standing. It shows me where things are really and helps correct my mental image of my body position and correct the posture.


#4

Thank you for your reply.

Any idea how and when I will stand on my toes?

The PT is trying really hard with me and it worked during the hydro session, but in i cant do it in the gym.



Kets said:
Hi Alya,

When I was walking I used to look down and worry about people near me too.

But after a while you will regain your confidence back as you recover and will walk normally.

Try to go for walk twice everyday and increase walking distance every week. I used to go for walk in the morning and in the evening.

You will get better but may take some time.

With GBS you have to be patience.

Feel free to ask any questions.

Ketan

#5

Thank you batman. I will try with the mirror tomorrow.

All the best to all of us.



TheBatman said:

I'm dealing with the same thing due to loss of sensation on my feet and my muscles lying to me about where they are in space.

Things we are trying that seem helpful:

Standing at the walker without holding it and looking straight ahead. I turn my head slowly as I'm up for it and eventually look straight and close my eyes. I can grab the walker as I lose balance.

Looking at a full length mirror while standing. It shows me where things are really and helps correct my mental image of my body position and correct the posture.


#6

My PT had me stand in the corner where my cupboard made a right angle turn so that if I put out my hands I would be supported by the counter. Then practiced putting one foot in front of the other and just standing upright, if I started to lean it was just a quick motion to catch myself. I helps to get confidence on the balance, time is necessary in GBS, but we are lucky as we are the recovering ones.


#7

I have a tread mill -- I use it to train myself to walk without looking down - I use the rails of the tread mill for support and then try to walk as long and as fast as I can with each session. I walk with a cane and noticed that over about 3 months my body/brain seemed to become more able to walk without my constant worry of lack of balance.

The cane is now used as a safety device - I don't really apply any weight to the walking stick, but it is there to insure that I do not fall when there is a problem with my gait or the terrain over which I am traveling.

When I walk down the hall at work, many people comment that I walk faster with a cane than they walk without one. That is because I use those trips down the hall as therapy walks.


#8

I cannot answer this for you, as I am wheelchair bound.


#9

Practice, practice, practice! The good thing is, if you have any balance at all (which you do), then it can be improved. Stand holding onto the kitchen counter and practice standing on one foot, let go of the counter briefly, then do the other foot. You will only be able to do this for a small amount of time, but eventually the time will increase. I practice my balance every day, it takes a LONG time to build up, but it will over time. Same with leg strength. Be patient and don't give up.

Good luck!


#10

Thank-you I want give up. I was in hospital for 15months. I'm getting divorced and I'm living on my own in a new flat. We have just sold the family home. My husband didn't want me in a wheelchair x


#11

Hi guys im mike


#12

I am so sorry to hear that. Dont let that get in the way of you getting better. I have been seeing a neauroschicologist who let me overcome my worries especially that i felt i was dying and i havent seen my kids for over 5 months. See a physiotherapist if you can. The muscle might be weak but they will recover if they work hard. I read that you would like to try swimming. Give it a go in a specialized rehad centre. You have good places here in the UK.

Stay strong,

Alya



Moo said:

Thank-you I want give up. I was in hospital for 15months. I'm getting divorced and I'm living on my own in a new flat. We have just sold the family home. My husband didn't want me in a wheelchair x


#13

Hi Mike. Welcome.


#14

Thank you LanceB. I will give it a try tomorrow.


#15

Thank you mdolich. I have splints they look similar. I only used them once and now they tape the back of my legs to give me feeling if i am locking the knees.


#16

Thank you yes I really want to go swimming. And I would like to go skiing. It is really nice there is other gbs people out there I nearly died twice was in intensive care for five and a half months. I'm left with a bad chest now.. Me and a friend are going on a cruise in November. But the cruise ship doesn't have a house to get me in and out the pool. Thank you.


#17

Hi is any one wanting to talk.


#18


Hi is any one free to talk.
Kets said:

Hi Alya,

When I was walking I used to look down and worry about people near me too.

But after a while you will regain your confidence back as you recover and will walk normally.

Try to go for walk twice everyday and increase walking distance every week. I used to go for walk in the morning and in the evening.

You will get better but may take some time.

With GBS you have to be patience.

Feel free to ask any questions.

Ketan

#19

Hi does any one feel really dwn, I do any help would be appreciated x


#20

Do something physically strenuous. That usually works for me. Gets your mind off the regular problems, plus you end up feeling like you've made progress at something. Good luck!