[speo]

I posted this message in another spinal forum so if you have read it before please accept my appologies.....just wanted some sort of feedback really. Sorry if it is posted in the wrong section

I suppose I am a bit different to others here in that I have an undiagnosed neuromuscular problem. Basically my left leg is completely paralysed from the hip down and my right has limited feeling but good movement. I have had this problem for the last 3 years and still no diagnosis as all tests (MRI, EMG, SPINAL TAP) were negative. I did have a motorcycle accident 6 years ago and hurt my back and this all may stem from the accident but am still not sure ????
I wear a left leg KAFO and walk quite well. The only problem I have is with distance and I use a wheelchair if going a long way or if I need to get somewhere quickly.
At work I use my KAFO as I can sit down whenever I need to. I take Baclofen for muscle spasms which tend to make me tired and generally weak but it is better than having the spasms which restrict my walking.
I am wondering if anyone here has a simillar undiagnosed problem like mine and is walking (with crutches or bracing)......I have a real problem using my wheelchair as I am embarassed about being seen by people who see me walking and think I am just maybe a lazy sod !!!!!......I was once challanged about this a few months back by a guy in a chair who had seen me walking, he was pretty rude and wanted to know what my disability was and why I was in the chair, needless to say I told him it was none of his buisiness but I felt really awkward.
I would also like to get in touch with other brace users as I am still having a fair few problems getting used to walking with the KAFO and would like some advice from users who have been "walking" for a while.
Anyway, thanks for letting me vent here and please feel free to write to me or reply to this post.
Many thanks
Stu

[In The Wind]

speo, on Nov 12 2006, 12:14 PM, said:

I was once challanged about this a few months back by a guy in a chair who had seen me walking, he was pretty rude and wanted to know what my disability was and why I was in the chair, needless to say I told him it was none of his buisiness but I felt really awkward.

We can be a touchy bunch eh? I think most of us feel that if we could step away from this chair we’d never get back in it, regardless of the reality.

Sorry, but I can give no info on your condition…Have you tried posting over at CareCure Community ? Someone there might be able to help ya…

[Joed]

Hi speo...

Our abilities sound similar, except it's my right leg that's most affected. I use a KAFO and a single point cane, also a w/c...and have used them for the past three years as well, except the cane, which I've used since '87.

What kinds of problems are you having with walking with your brace? There are a couple of other brace users here, so maybe between us we can be of some help.

Quote

I was once challanged about this a few months back by a guy in a chair who had seen me walking, he was pretty rude and wanted to know what my disability was and why I was in the chair

That's unfortunate. For some people, disability is a 'black-and-white' thing....all or nothing. They often don't take into account things like fatigue, bad pain days, increased neuro-symptoms, or stamina/endurance. I rarely take my w/c outside of the home, but I do use a scooter on occasion. I've never had something like this happen to me...but if it did, I'm sure my reply would've been similar to yours. Or I might give that person the phone number of my NS and suggest that they get all their questions answered by him.

Many walkers use the store's electric shopping carts...they walk into the store under their own steam, but still need the cart in order to endure the rest of the shopping trip in a huge store. I think (?) most people understand this, but there'll always be some who fancy themselves as the 'fraud police'.

Anyway, I'd be happy to try and answer/brainstorm any questions you have, and hopefully be of some help to you.

[cvelusc]

Hey Stu. Welcome to the forum! We're a bit in the same boat. I had a L2 burst fracture with subsequent damage to the cauda equina. Essentially left me with near 100% muscular control of my left leg (but little sensation), and near 40% sensation of my right leg (with moderate muscular control).

I use a SPL KAFO on my right leg and have been pretty happy with the results. If my wife is nearby, I use a cane to walk, otherwise forearm crutches. Now if I'm shopping, then only way to go is with the wheelchair.

As time passes on, I picked up new tricks to help with balance and gait. Progress has been slow; I often hyperextended my left knee in order to swing through my opposite leg. Now, with additional experience I no longer hyperextend. I am now tackling using my ankles appropriately.

As already asked, what problems are you having?

[speo]

Wow, thanks for the great response, much appreciated.
My main problem when walking is I cannot tell where my left leg (KAFO leg) will land, I also have trouble hitching my hip high enough to clear the ground. My leg also seems to rotate outwards all the time which makes my walking look really odd.!!!!!! My pysio is really good but she mainly deals with people who have had strokes and had not even seen a full leg brace until I was refered to her. She really is a top person and has helped me a lot in exercising but I really do not think she knows how to handle someone with my disability.
I asked if there were any training videos available for people using KAFOs or other type of braces so I could have a look myself to see how I was progressing, there is'nt any available which is a shame. If there was someone in my re-hab group with the same disability it would be easy for me to gauge how I was doing.
I am without my KAFO this week as it is going to get some adjustments made so I am back on crutches full time which is a pain. Maybe when it comes back it will be easier to use!!!!!!

Thanks again to everyone, it is nice to know I am not alone, I felt like a fraud surrounded by people who were full time chair users due to paralysis of both legs, I did not realise there were other walkers out there who were so similar to me.
Thanks again
Stu

[speo]

By the way, that SPL brace thingy looks well cool, mine just has like a drop lock thingy, seems to work ok though.....

[Joed]

I have to hike my hip to clear the ground too, speo. And it's a crap shoot as to where my foot will plant itself on any given stride. I'm getting more controlled at it though....I don't set my braced foot on my other shoe as often anyway!

My PT seemed perplexed as to why I was having to hike my hip. I finally asked her to lock her knee in and try to take a stride, clearing the floor without hiking her hip. She gets it now.

I like the SPL idea too...not sure if I have enough thigh control to use it correctly or safely though. Once unlocked in a stride, I'd be afraid my leg would spasm into a right angle and wouldn't extend enough on its own to lock again.

Another PT was getting frustrated with me because I couldn't walk in the pool. My paralyzed leg kept floating to the top, and she kept telling me to put my foot on the bottom of the pool....she seemed to believe that water would be the Holy Grail of recovery. It was good therapy, but it certainly isn't going to miraculously re-connect my damaged nerves.

I have to keep reminding myself that not all medical people have had experience with SCI issues. In general, when it comes to our conditions....we are the experts....as scary as that is.

[Tarkus]

I can't help with info on your condition, you should try the CureCare forum.

As far as being a "walkie", that I know about ! I don't even hear the comments any more.

I first saw this "I'm more disabled than you" crap when I started going to support groups.
I now go to speak to these groups on this very subject.

Regards,
Alan

[speo]

Hi Joed, and thanks for all the info...I was wondering if your paralysed leg is flaccid or do you have much movement ?....
I do not have any feeling from the hip down on my left side accept the sole of my foot for some reason ???....I cannot feel light touch or pressure on the left at all. I have no movement in my left leg also but I do get spasms and this has kept the muscle tone in this leg much the same as the right. In fact looking at both legs it is hard to tell the difference and even my consultant needs to ask which leg is the worst.......
My right leg is weak from the knee down and also numb but I have full control of the muscles in theis leg. The spasms are annoying but I take Baclofen and this helps, I my physio also said I have Clonus which when walsking can cause my leg to shake from the foot.....very odd.
Thanks again
Stu

[Joed]

Quote

I was wondering if your paralysed leg is flaccid or do you have much movement ?....

For any practical purposes, it's useless. I can get some minimal movement from my foot (raising and lowering) but it's quite weak and I can only move it an inch or so with great effort, but it doesn't respond each time. My hip flexors are a little better, but most of my stride on that side is made possible through kinetic energy while walking...or momentum...the leg simply swings forward only because it's following the rest of my body.

I can feel some pressure from the knee up, but not very distinct sensations. From the knee down...nothing at all. If someone were standing on that foot, I'd not know it right away, but eventually I'll get a noxious sense that something is happening to it. I wouldn't be able to discern pain from simple pressure, however.

There is a considerable difference between the size of my legs. My right leg has been slightly atrophied all my life, but since my paralysis it's much worse. Now my left leg looks deceivingly strong, even though it has some neuro-deficit too. I guess that's because of a life-long demand on it to compensate for the other leg...it's been my true-blue.

Quote

I do not have any feeling from the hip down on my left side accept the sole of my foot for some reason ???....

Interesting...because I have a small, nickle-sized spot on my sole/heel where I can feel too. No one has ever been able to explain why that is, but I guess it's all part of the wacky world of neurology.

[speo]

Thanks again Joed for your insight.
I am due to get another MRI sometime this month and also to see a urologist. I am really hoping that after nearly 3 years someone can tell me what is happening to my body !!!!!!.
I am sick of trying to explain to people what is wrong with me, I am on crutches one day, KAFO and stiff legged the next day and a wheelchair just to confuse everyone even more !!!!!....I now tend to say I sprained my ankle just to please everyone !!!

I was also supplied a wheelchair around 6 months ago by my pysio, it is a pretty ugly clunky NHS type chair that is really to heavy for me to get in the car by myself. ....I actually bought a second hand light weight chair as an ex demo from a local company. It was quite expensive and I am not a rich man.....could I ask my pysio for a better chair or will she just tell me to make do, or are all chairs supplied on the NHS really poo !!!! ?????
As you can tell by my daft questions, I am still new to this being disabled lark...
Thanks
Stu

[gsp23]

Hi there speo, welcome to the forums. I am able to walk short distances with crutches and use my wheelchair when I leave the home. I have an ultralight folding and rigid chair. As I am unable to drive, my boyfriend always drives and of course uses the folding chair because its easier for him to take off the seat cushion, fold the chair and throw it in the bed of my truck, vs "disassembling" my rigid chair. Anyways, I have been working on getting my chairs into my truck by myself so that when I am able to drive I can do this. The Rigid chair is more comfortable to me, being winter time the handrims dont freeze if using the rigid (since the folding is in the bed of my truck) and it is easier for me to get in and out. My boyfriend seems to think that if I can get myself onto the tailgate of my truck then I should be able to lift my folding chair into the truck easier than getting my rigid into the backseat. Anyways, where I am going with this story is that I havent told him but I am also afraid that if someone else sees me walk to the back of my truck with my crutches and gets the wheelchair out it looks like I am not disabled because I was able to walk to the back of my truck. There are other reasons for using my rigid but thats just another, I dont really want to deal with other uneducated people.

Joed had mentioned that many walkers will use their canes/crutches/etc. to get into the store then use the motorized carts. I am not one of those people. I prefer my chair, find it more comfortable and easier to get around. I can go the speed that I want and make sharp turns. My rigid chair feels like its part of me and the scooters in the stores I would think would get more stares as many people seem to comment on how the people using them are just lazy anyways. I dont always agree with that statement, but I know some do so using them will not eliminate stares. Its a comfort thing and a personal preference I guess.

[Joed]

gsp23, on Nov 15 2006, 04:03 PM, said:

Its a comfort thing and a personal preference I guess.

I agree. And I guess in my case, it's a health issue too, as I don't think I'd be able to do all the lifting and pulling required with bringing along a w/c. Oh, I could do it (I'm certainly onery enough ), but it places added stress on my tethered cord....and it hurts.

My physical disability is immediately visible to others, whether I'm in a w/c, scooter, walking or standing still, so I don't worry about the 'fraud police' too much...but I do understand what you're saying.

But only you know what your needs/limitations are at any given moment or situation, and you can stand strong in knowing that....to hell with another's speculation or judgment. They don't live your life, nor do they have a clue as to what you might've had to physically drudge up from the center of your very being just to get there in the first place.

From an early age, I've learned to appreciate every step, as I've spent months and months in hospital with children who had never/will never walked, and watched the incredible effort and motivation of those who tried so hard to do it. I can't walk much anymore, but I can still do it....and as long as I can, I'll be dragging my slow, crippled a&& around (until I can get to that cart anyway! ). And I really don't give a crap if someone else (the fraud police) has a better idea for my life and how it should be.

Sorry about that rant...it's in no way directed at anyone here...I'm just sorry that this is just one more crappy thing some of us has to worry about.

[cvelusc]

Quote

My main problem when walking is I cannot tell where my left leg (KAFO leg) will land, I also have trouble hitching my hip high enough to clear the ground.

I have practically no sensation in either foot (only some sensation higher up on the right leg) and determining where my feet are has been more of a lesson in trial and error. I often glance down right before I step to determine where my foot has been placed. Although, with frequent practice I've noticed that I occasionally don't look down, as if I have developed some muscle memory in my foot placement.

Quote

My pysio is really good but she mainly deals with people who have had strokes and had not even seen a full leg brace until I was refered to her.

While she may be nice, your best bet is to find someone that has practical experience with people like you. I'm not sure where you live, but traveling a little farther for better assistance is the better route. Might want to check out the Project Walk website.

Quote

...I felt like a fraud...

You're definitely not a fraud, but someone with just a differing injury. We all need help regardless.

[cvelusc]

speo, on Nov 13 2006, 08:28 AM, said:

By the way, that SPL brace thingy looks well cool, mine just has like a drop lock thingy, seems to work ok though.....

I don't understand. Does your brace become unlocked when you bring your leg through?

[cvelusc]

Joed, on Nov 13 2006, 04:21 PM, said:

I have to hike my hip to clear the ground too, speo.

My technique relies on balancing on one foot and leaning slightly outward (same foot) and then bringing the opposite leg through. Really very individualistic. Speo, you will find something that works right for you.

[cvelusc]

Joed, on Nov 13 2006, 04:21 PM, said:

I like the SPL idea too...not sure if I have enough thigh control to use it correctly or safely though.

I have very limited quad muscle control in my right leg (that uses the KAFO). Imagine standing with a walker. I can lift my leg roughly 6" off the floor, and then using the remaining quad can extend the lower part of my leg.

Quote

Once unlocked in a stride, I'd be afraid my leg would spasm into a right angle and wouldn't extend enough on its own to lock again.

I have more of a neuropathic pain issue than extending/contracting spasms. I wish there was some way for you to try out the SPL as I surely have been pleased with the brace.

[cvelusc]

speo, on Nov 14 2006, 10:20 PM, said:

It was quite expensive and I am not a rich man.....could I ask my pysio for a better chair or will she just tell me to make do, or are all chairs supplied on the NHS really poo !!!! ?????

Speo, you shouldn't have to settle for a wheelchair that is sub-par. If you need a decent wheelchair, ask your Doctor to write a prescription and take it from there.

[cvelusc]

Quote

My boyfriend seems to think that if I can get myself onto the tailgate of my truck then I should be able to lift my folding chair into the truck easier than getting my rigid into the backseat.

I was actually doing this for awhile before I got the SPL brace I'm using now. Can be done, but depending on the weight of your wheelchair, will require a lot of upper-body strength.

Quote

I am not one of those people. I prefer my chair, find it more comfortable and easier to get around.

Ditto. Have a really nice ROHO cushion that is fabbity-fab.

Quote

My rigid chair feels like its part of me and the scooters in the stores I would think would get more stares as many people seem to comment on how the people using them are just lazy anyways.

I can only imagine what people think when I fold down my wheelchair and lift it up into the bed of my S10 pickup truck. I wish I were just a faker and then someone could kick my ass and set me right.

P.S., apologize for all the posts but felt as if I had a lot to offer on this subject. Missed the initial posts, otherwise I would have posted earlier.

[speo]

Hi Cvelusc, thanks for taking time to write...your input is great, thanks also to Joed once again. I am really glad I joined these forums as the help I have received already has been smashing.
I forgot to mention I live in the North East of England and I am 38 years old, I guess a lot of people here are from the U.S.A and our N.H.S works different to yours. I actually waited nearly a year just to get an appointment to see about the brace I use.
The brace is just a standard KAFO and the knee locks on standing but can be released for sitting down, I cannot put any weight on my left leg as my ankle and knee just buckle. I am really apprehensive about getting the brace back as I really am struggling with it. Was supposed to get it back this week but today was told it would be next Tuesday. Thing is I seem to be able get around faster on these bloody crutches !!!!...only problem with using them is your hands are full all the time and you cannot carry stuff.....oh well...
Will keep anybody who is interested updated when I get the KAFO back.
Thanks to everyone..
Stu

[cvelusc]

speo, on Nov 15 2006, 08:04 PM, said:

I forgot to mention I live in the North East of England and I am 38 years old, I guess a lot of people here are from the U.S.A and our N.H.S works different to yours. I actually waited nearly a year just to get an appointment to see about the brace I use.

A little clearer now. I wish I had information regarding non-US procedures, but I don't. There are quite a few European members here, so maybe they'll be able to help you. You may want to go to your Profile and enter your location so that others know where you're from.

Quote

The brace is just a standard KAFO and the knee locks on standing but can be released for sitting down, I cannot put any weight on my left leg as my ankle and knee just buckle.

Ditto! Without the SPL brace I would not be able to stand. Before I got the new brace, I did have a regular locking mechanism like what you're talking about. For awhile there, I just kept the brace unlocked and practiced my gait. Worked so-so.

I'm not sure if your brace is fixed at the ankle or if it's free-moving, but the SPL I have now is free-moving and has made a world of difference in my gait.

Please come back and post. If not just for us, then for people that I may join later and have the same questions that you've had.

[speo]

Well folks I got my new KAFO on Wednesday, looks cool in a sporty black finish, waited 3 months for it, used it for half an hour a day until yesterday when it promptly broke !!!!!!!!!.
Both hinges on the knee are not locking when standing, got to take it back today so it looks like I am back on bloody crutches for another 3 months while they fix it......dont you just love the British NHS ?????. Hopefully they will sort it out there and then while I wait but dont hold your breath.
Also posted my query as to what was wrong with me on the Carecure forum and got a great response so thanks to everyone who suggested that. My symptoms all poit towards Brown Sequard syndrome so I am going to try and print off all I can on this subject and hopefully show it to my consultant when I pluck up the courage !!!!!!.
I was also refered to my local wheelchair services yesterday by my physio to get a new lighter chair. I was wondering if anyone here has any idea what I can expect to get using the voucher scheme. I live in Teessside in the North East of England so anyone from this area please get in touch and let me know what you ended up with. As far as I can tell it is a bit of a postcode lottery as to what the voucher is worth and how much you have to pay yourself to get something that is half decent.
Thanks
Stu

[Joed]

Well, shoot! Ain't that the way it goes?

Surely they'll put a rush on things and repair it as you wait....I wouldn't think it'd take that long. (?) I had a pin in the knee hinge/lock mechanism fall out shortly after I got home from rehab...they were able to repair that while I waited.

I need repairs on mine as well (new straps and rivets), and have been putting it off because I don't want to be without it, even for a short while.

I'd like to see pictures of your new brace, if you can get one up....I like the idea of the black finish. Black goes with everything!!

Is your brace enclosed on the back, or open?

[speo]

Hi,.....well I managed to get the brace fixed myself, a little bit WD40 lubricant and shaving a little off the hinge clip and it now works perfectly !!!!. I refused to let the ortho send the brace away and she understood so has put an order in for a spare for me which is great, the hinges will be different without the drop locks but with some sort of lever mechanism instead.
I will post a picture but not sure how to ?
It has a plastic foot section (AFO) and then the metal uprights go up to a leather and metal enclosed thigh section. All held to the leg with velcro.
Let me know how to post pictures ???

[wheeliebear75]

Well you aren't the only one to have a problem with being in and out of the chair. I have just enough use of my legs to do some walking with the aid of a walker or forearm crutches. I have had strangers very rudely inform me that they "knew I was faking it". I can move my legs and suddenly I ought not be in a chair. Don't worry about them. If you need the wheelchair use it. It isn't a crime to use one and be able to leave it at other instances. So long as "I'm only in it for the parking" is truly just a joke and not a truth...tell anyone else to buzz off.
PS tchnically I have a "gross bilaterall neurological deffecit" or "posterior spinal cord abrasion". It means I can move my legs but not all the time and not always when I need them too...oh yeah and just enough use to have insurance tell me where to hobble (they wont buy me wheelchairs).

speo, on Nov 12 2006, 12:14 PM, said:

I posted this message in another spinal forum so if you have read it before please accept my appologies.....just wanted some sort of feedback really. Sorry if it is posted in the wrong section
I suppose I am a bit different to others here in that I have an undiagnosed neuromuscular problem. Basically my left leg is completely paralysed from the hip down and my right has limited feeling but good movement. I have had this problem for the last 3 years and still no diagnosis as all tests (MRI, EMG, SPINAL TAP) were negative. I did have a motorcycle accident 6 years ago and hurt my back and this all may stem from the accident but am still not sure ????
I wear a left leg KAFO and walk quite well. The only problem I have is with distance and I use a wheelchair if going a long way or if I need to get somewhere quickly.
At work I use my KAFO as I can sit down whenever I need to. I take Baclofen for muscle spasms which tend to make me tired and generally weak but it is better than having the spasms which restrict my walking.
I am wondering if anyone here has a simillar undiagnosed problem like mine and is walking (with crutches or bracing)......I have a real problem using my wheelchair as I am embarassed about being seen by people who see me walking and think I am just maybe a lazy sod !!!!!......I was once challanged about this a few months back by a guy in a chair who had seen me walking, he was pretty rude and wanted to know what my disability was and why I was in the chair, needless to say I told him it was none of his buisiness but I felt really awkward.
I would also like to get in touch with other brace users as I am still having a fair few problems getting used to walking with the KAFO and would like some advice from users who have been "walking" for a while.
Anyway, thanks for letting me vent here and please feel free to write to me or reply to this post.
Many thanks
Stu

[AZ_PTA]

speo, on Nov 29 2006, 12:39 PM, said:

Hi,.....well I managed to get the brace fixed myself, a little bit WD40 lubricant and shaving a little off the hinge clip and it now works perfectly !!!!. I refused to let the ortho send the brace away and she understood so has put an order in for a spare for me which is great, the hinges will be different without the drop locks but with some sort of lever mechanism instead.
I will post a picture but not sure how to ?
It has a plastic foot section (AFO) and then the metal uprights go up to a leather and metal
enclosed thigh section. All held to the leg with velcro.
Let me know how to post pictures ???

With out seeing it, the lever lock sounds like a bale lock. Should be easier than the drop locks, a little smoother to un-lock. I agree with cvelusc about finding a physio who is more informed with nuero patients, even if you have to go further. It will totally be worth it!! I wish I could help you but with out seeing you walk, I can't really do anything. What are some of the specific questions you have about your walking? I will try to answer what I can, like I said, I don't know how much I can do to help with out seeing you walk but I will do my best. BTW, I am a physical therapist assistant, in the states. I work at a Skilled nursing facility, and have worked with several patients who have had KAFO's and other braces.
Hope I can help!!

[Batman47]

All I can do is keep you in my prays and hope the hoildays finds you and your family warm and safe.

They say a picture equals a 1,000 words

[speo]

Hi thanks for your response. I have had to stop using the KAFO for a few days as I have developed a sore where the plastic foot plate is on my calf. I think it is to tight so it looks like I will have to send it back after all.
I have been discharged from my pyhsio now as she says there is nothing she can show me and just to "try what works"....mmmmm not sure if this is the best idea.
I have problems hiking my hip far enought to clear the ground and also knowing where my leg will land. I want to do away with crutches all together but I feel this will never happen at the moment.
I am taking the KAFO back today and just hope they hurry up with it.
Cheers
Stu