Prior to suffering Guillain Barre (July 1995) I was a very fit male in my late 30's.
I competed regularly in triathlons and we all know the type of training required for the three disciplines of that sport.
I was also an avid trekker through various terrains.
I was (still am) a Dad to two young boys and a husband to one wife (still am).
I only give that brief physical and family background because Guillain Barre stopped me dead in my tracks.
After discovering what Guillain Barre was I quickly re-focused my life to do all that I could to fully recover.
Even though I now work full-time and have done so for a quite a while the residual effects of Guillain Barre remain with me.
The medical fraternity call them 'residual neurological abnormalities'.
What are my residual effects and how do they impact on my life? These may be the same for you or a love one.
Pain.
Not disabling pain but persistent discomfort in my feet.
Sometimes it is like a tingling but most times it is an ache and even those descriptions are not altogether apt.
I massage deeply and even smash my feet down on the floor or on the edges of coffee tables so as to 'distribute' or rid myself of the sensation, usually to no effect.
The pain tends to be worse at night and is definitely worse if I have been on my feet all day or my feet have been wrapped tightly in working boots.
As a teacher and as a husband-father this is usually the case.
I do not take any medication.
My feet are 'floppy'.
The ankles are weak.
The toes flop or don't obey what I ask them to do.
I have heaps of muscle twitching.
I enjoy watching those.
Very funny.
I do fall occasionally particularly if I happen to walk backwards.
I have to be aware of my walking, my 'feet planting' with each step, even though it's not done consciously.
Since GBS I haven't been able to run at all.
My calf muscles are very loose as some of the nerves, so I am told, have died or not regenerated.
The term from doctors is axonal degeneration.
My doctor has mentioned to me that axons send out small branches called collateral sprouts that restore the nerve supply to those muscle fibers whose nerves have been damaged.
What I have found is that my muscles must work extremely hard to maintain efficiency over a long period of time.
For example I still trek but with two walking poles to aid with balance and support.
The legs fatigue to a much faster extent compared to prior Guillain Barre times.
For me, it is a long term disability, I hate that word, but not one that I let stop me doing my outdoor pursuits.
There is always a way.
I have always loved the mental challenges that invariably go with the physical ones.
I have found that from a few months ago (August 2012) I have developed a limp which has originated in the left hip.
It is not painful but as I had been affected by GBS from the neck down for a long period of time I have now been told by my doctor that even though the muscles in the hip area had recovered that now they have weakened due to Guillain Barre from those many years ago.
I competed regularly in triathlons and we all know the type of training required for the three disciplines of that sport.
I was also an avid trekker through various terrains.
I was (still am) a Dad to two young boys and a husband to one wife (still am).
I only give that brief physical and family background because Guillain Barre stopped me dead in my tracks.
After discovering what Guillain Barre was I quickly re-focused my life to do all that I could to fully recover.
Even though I now work full-time and have done so for a quite a while the residual effects of Guillain Barre remain with me.
The medical fraternity call them 'residual neurological abnormalities'.
What are my residual effects and how do they impact on my life? These may be the same for you or a love one.
Pain.
Not disabling pain but persistent discomfort in my feet.
Sometimes it is like a tingling but most times it is an ache and even those descriptions are not altogether apt.
I massage deeply and even smash my feet down on the floor or on the edges of coffee tables so as to 'distribute' or rid myself of the sensation, usually to no effect.
The pain tends to be worse at night and is definitely worse if I have been on my feet all day or my feet have been wrapped tightly in working boots.
As a teacher and as a husband-father this is usually the case.
I do not take any medication.
My feet are 'floppy'.
The ankles are weak.
The toes flop or don't obey what I ask them to do.
I have heaps of muscle twitching.
I enjoy watching those.
Very funny.
I do fall occasionally particularly if I happen to walk backwards.
I have to be aware of my walking, my 'feet planting' with each step, even though it's not done consciously.
Since GBS I haven't been able to run at all.
My calf muscles are very loose as some of the nerves, so I am told, have died or not regenerated.
The term from doctors is axonal degeneration.
My doctor has mentioned to me that axons send out small branches called collateral sprouts that restore the nerve supply to those muscle fibers whose nerves have been damaged.
What I have found is that my muscles must work extremely hard to maintain efficiency over a long period of time.
For example I still trek but with two walking poles to aid with balance and support.
The legs fatigue to a much faster extent compared to prior Guillain Barre times.
For me, it is a long term disability, I hate that word, but not one that I let stop me doing my outdoor pursuits.
There is always a way.
I have always loved the mental challenges that invariably go with the physical ones.
I have found that from a few months ago (August 2012) I have developed a limp which has originated in the left hip.
It is not painful but as I had been affected by GBS from the neck down for a long period of time I have now been told by my doctor that even though the muscles in the hip area had recovered that now they have weakened due to Guillain Barre from those many years ago.
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