[Joed]

I'm looking for some medical terminology to help me complete my second application for an assistance dog. Here's my situation:

When walking, I will occasionally 'forget' how to walk. It's hard to explain, but it's like my feet are glued to the floor. I'll shift my weight from side to side, but can't seem to know how to go on from there.

If someone is walking beside me, and I touch their arm, back, whatever, it seems to provide a reference point for me and helps me to keep my gait momentum and prevents a break in stride. I think an assistance dog would help me to stay on track while walking....that way I don't have to stand in the pouring rain, or out in the middle of a street...LOL (it's happened before).

Anyway, these particular assistance dogs are not trained for balance work, which I don't need anyway...but when trying to explain this situation in my first application, they seem to have got the impression that I'm talking about balance issues, because on the second application the director placed a post-it note reminding me that they don't train for balance work.

I'm wondering...does anyone else have this problem? And if so, do you have any idea what it might be called? The closest I've come is either 'Limb-Kinetic Apraxia', 'Dysergia', or 'Agnosia', but none of these conditions really specifically relate to this type of gait disruption.

I just don't want to be disqualified for lack of being able to explain this effectively. I appreciate any thoughts on this.

Thank You!

[Apparelyzed]

Does this help: http://en.wikipedia..../Proprioception

It sounds a bit like a proprioception problem.

Regards

Simon

[Joed]

I don't think that's quite it, Simon. I can sense where my left leg is...the 'good' one...but of course, I have no sense of positioning in the leg that's paralyzed though...which I think would be different from what that article is explaining. (?) If I've understood it right, that is.

The first episode I had with this was before my paralysis in '03. My sister had to pull me out of it before I could move....it was very weird....afterwards I was perfectly fine. Now since '03, it happens frequently.

Thank you, Simon, for looking that up and taking the time to post it. Much appreciated.

[linda]

You are looking for a gait guide dog or gait assistance dog, one that can help guide you. Not support your weight.

[gsp23]

I do have issues with Proprioception but I also have the issue you are referring to as well Joed. The thing where you legs just forget how to walk can be frustrating. I dont know of a name for it either, but what I do is similar to what you do. If I am standing with my crutches and my legs just forget what they are doing I look down at them and think really hard of how they need to move while holding on to my crutches and concentrate on moving one leg and the opposite crutch. Sometimes I do have to stand there for a minute and just relax and wait for things to start cooperating with what my brain is trying to tell my legs to do. You arent alone, but unfortunatly I dont know of a name for it either.

[Joed]

Thanks for your replies, linda and gsp23.

gsp23....I hate it that you experience this too, but I'm also glad to know that I'm not confusing this with something else, and that others experience it too. I had wondered if it was more of a strength issue, but once I get 're-booted', I'm good to go, so I don't think it's to do with strength, as much as it's a neuro-pathway issue...a short circuit of sorts.

It's mostly an annoyance, but could be dangerous if it happens at the wrong time...like when there's a Mac truck heading your way.

This post has been edited by Joed: 27 October 2006 - 01:52 PM

[dfnapier]

Joed, on Oct 28 2006, 12:51 AM, said:

Thanks for your replies, linda and gsp23.

gsp23....I hate it that you experience this too, but I'm also glad to know that I'm not confusing this with something else, and that others experience it too. I had wondered if it was more of a strength issue, but once I get 're-booted', I'm good to go, so I don't think it's to do with strength, as much as it's a neuro-pathway issue...a short circuit of sorts.

It's mostly an annoyance, but could be dangerous if it happens at the wrong time...like when there's a Mac truck heading your way.

Simon / Joed thanks for your input.

Joed I to would like a name for it, I have been looking but so far no luck.

Although I am able to weight bear, no amount of coaxing from me will get my legs to move, was at a wedding 2 weeks ago used my wheel chair upon returning to my car it took my brain almost 10mins to connect me to my legs before I was able to get into my car, my dear wife just stood there holding me and keeping me calm..

The last few nights as soon as I lie down I loose the ability to move my legs for anything from 30 secs to 5 mins, last night this happened about 30 times so it took me a while to get to sleep.

Will see my Doctor this week for my fortnightly injection and check up, I think I will get him to get me an apointment with a Neurologist who specialises in Spinal Cord disorders at the Hospital.

regards

david

This post has been edited by dfnapier: 29 October 2006 - 07:45 AM

[Joed]

Apparelyzed, on Oct 26 2006, 02:41 PM, said:

It sounds a bit like a proprioception problem.

My friend who is a nurse and also has SCI agrees with you, Simon. She explained that even though I sense where my limbs are, it could still be associated with a proprioception issue. I guess I should read up on it some more.

I think I must've explained this well enough to the training facility, as I've been passed along to the third stage of application...a telephone interview, to be followed by a personal interview.

[Lucky]

The only time my legs get glued to the floor is when I've been drinking.

How ever, I quit smoking whilst in hospital 3 1/2 yrs ago but as I'm in Thailand, I thought I'd try one again..... bad move, it made me dizzy as... and when I got up, my legs were pinned to the ground.

Know this doesn't help..... sorry Joed.

Good luck anyway.

[Joed]

Interesting....back in my drinkin' days, I had the most problem keeping my feet on the ground. (Nothing worse than a drunk cripple on a rocking ship)

I hope your little fall off of the smoke wagon hasn't put you back again? I quit smoking for seven years, and made the mistake of thinking that 'just one' wouldn't hurt after all that time.....wrong! Ironically, I'm planning to quit today....after I finish this pack.

Glad to see you back, Lucky. You've been missed.

[dfnapier]

Lucky, on Nov 13 2006, 09:05 PM, said:

The only time my legs get glued to the floor is when I've been drinking.

How ever, I quit smoking whilst in hospital 3 1/2 yrs ago but as I'm in Thailand, I thought I'd try one again..... bad move, it made me dizzy as... and when I got up, my legs were pinned to the ground.

Know this doesn't help..... sorry Joed.

Good luck anyway.

The condition I now know is called paraparesis or hemiparesis, for want of a better word paralysis.

My Rehab Doctor and my Neurologist have both said there is nothing more that can be done.

You know what really annoys me about this condition is that is not taken seriously by some people, it has all the effects and symptoms of MS but none of the back up.

And when you have to face something that is not normal about the condition ie paralysis, you face it on your own and with the ones you love.

My GP,s have never seen this condition as bad as this.

Sorry if my words show a bit of anger as that is not my intention, I suppose it is just my frustration at being the only one.

[gsp23]

dfnapier, on Nov 18 2006, 02:59 AM, said:

The condition I now know is called paraparesis or hemiparesis, for want of a better word paralysis.

My Rehab Doctor and my Neurologist have both said there is nothing more that can be done.

You know what really annoys me about this condition is that is not taken seriously by some people, it has all the effects and symptoms of MS but none of the back up.

And when you have to face something that is not normal about the condition ie paralysis, you face it on your own and with the ones you love.

My GP,s have never seen this condition as bad as this.

Sorry if my words show a bit of anger as that is not my intention, I suppose it is just my frustration at being the only one.

I had never heard the terms paraparesis or hemiparesis before so I googled them and found the meaning. Paraparesis definatly sounds like my current condition. I see that there are many things that can cause paraparesis but the bottomline definition from several medical sources online is

Slight paralysis or weakness of the lower extremities (or in the case of hemiparesis it applies to only one leg).

My PTs are great but whenever I talk about things like the partial paralysis that I have they keep focusing on trying to walk better and just getting more strength, etc. When I talk about difficulty doing things in my wheelchair they say that I should try to find a way to do things outside of my whelechair just not seeming to get the fact that the wheelchair is a part of my everyday life.

You may feel alone in your immediate circle of friends/family but you arent alone here! There are some of us here who have this condition as well and it is hard to explain sometimes to other people who just dont understand.

This post has been edited by gsp23: 19 November 2006 - 12:11 AM

[dfnapier]

gsp23, on Nov 19 2006, 10:11 AM, said:

dfnapier, on Nov 18 2006, 02:59 AM, said:

The condition I now know is called paraparesis or hemiparesis, for want of a better word paralysis.

My Rehab Doctor and my Neurologist have both said there is nothing more that can be done.

You know what really annoys me about this condition is that is not taken seriously by some people, it has all the effects and symptoms of MS but none of the back up.

And when you have to face something that is not normal about the condition ie paralysis, you face it on your own and with the ones you love.

My GP,s have never seen this condition as bad as this.

Sorry if my words show a bit of anger as that is not my intention, I suppose it is just my frustration at being the only one.

I had never heard the terms paraparesis or hemiparesis before so I googled them and found the meaning. Paraparesis definatly sounds like my current condition. I see that there are many things that can cause paraparesis but the bottomline definition from several medical sources online is

Slight paralysis or weakness of the lower extremities (or in the case of hemiparesis it applies to only one leg).

My PTs are great but whenever I talk about things like the partial paralysis that I have they keep focusing on trying to walk better and just getting more strength, etc. When I talk about difficulty doing things in my wheelchair they say that I should try to find a way to do things outside of my whelechair just not seeming to get the fact that the wheelchair is a part of my everyday life.

You may feel alone in your immediate circle of friends/family but you arent alone here! There are some of us here who have this condition as well and it is hard to explain sometimes to other people who just dont understand.

It is good to know that I now know 3 people who suffer with this condition, have any of you found since your disability your friends seem to dissappear.
Had a good day today went to a Railway Museum for my grandsons birthday, I used my wheel chair to get around some of it, and then along comes this electric airport type buggy and he took me to see other parts of the exibits with my other 3 grand kids it was great.

[gsp23]

dfnapier, on Nov 19 2006, 01:00 AM, said:

It is good to know that I now know 3 people who suffer with this condition, have any of you found since your disability your friends seem to dissappear.

I am the kind of person who only has a few very close friends and only had about 4 before my disability so there werent many to disappear However, those were very close loyal friends that have continued to stick with me even now, although I hear it is very common to lose friends that just dont want to deal with people and their new disabilities. I figure that if they only wanted to be around me before hand and now dont want to be "inconvenienced" good riddance... even if it is the few that I still have now.

[rkzenrage]

I get that sensation sometimes. I don't walk much though & never without help. I am unfamiliar with the term.

This post has been edited by rkzenrage: 12 December 2006 - 10:39 AM

[susiejt]

dfnapier, on Nov 19 2006, 06:00 PM, said:

It is good to know that I now know 3 people who suffer with this condition, have any of you found since your disability your friends seem to dissappear.

Ah yes many get lost along the way & their inability & superficiality is very hurtful for quite a while. But then we at least know who is real & who isn't. My partner of 10 yrs also left this year (VERY PAINFUL) - which weeded out even more friends, some i chose to bequeath & others slowly disappeared but then others have become fabulous friends who i would never have expected it of. Some days are diamonds & some days are stones as John Denver said. Only great friends remain, for this we can be thankful when it's not hurting.

[susiejt]

Joed, on Oct 26 2006, 11:59 PM, said:

When walking, I will occasionally 'forget' how to walk. It's hard to explain, but it's like my feet are glued to the floor. I'll shift my weight from side to side, but can't seem to know how to go on from there.

If someone is walking beside me, and I touch their arm, back, whatever, it seems to provide a reference point for me and helps me to keep my gait momentum and prevents a break in stride.

I appreciate any thoughts on this.

Thank You!

Hi, it happens to me only if going up or down stairs & only ocasionally now, much more for the first couple of years, & has led to some disastrous episodes. I can see the steps, know what should happen but sometimes in mid step everything stops working except for the body weight sadly, then a moment of disbelief & then crash. I find that if i have a finger lightly trailing on the hand rail that it now saves me mostly (but it has to be light, if too firm then i can still get disoriented) and also i have learnt to stop the moment i feel it rather than try to push through it (as is my nature normally). My Dr had no idea & tried to suggest that it is cause i can't feel my feet but i knew it was different. My new Rehab Physician (works at a Rehab Hospital) has not given it a name but she says that it is like a stroke patient, that your brain is trying to deal with a huge amount of information, much more than most people, just to keep you upright & for the propriceptors to get you placed in space correctly & know where you are; and to damp down all the weird signal & nerve stuff that if it was always registered would be terrible, then to move at all can be just too much info at times for the brain & it gets overloaded - she called it "instruction interruption", no technical label that i can help you with, sorry. For me it actually feels like the information gets to the brain but i can feel the pause moment, or short circuit, on the way back down. I don't know how to explain that but i can actually feel the pause physically. I too, like someone suggested, have to then think very hard to make the connection; sometimes though time is just needed for it to all work again. For ages i could only approach steps safely going down with someone, a willing participant, in front of me, with a hand on their shoulder as a reference point. Hope you find the answer; a dog i am sure would be perfect to keep that pace / momentum happening-i do know exactly what you mean. It has not happened to me on flat surfaces like a road so i feel for you. Good luck with your woofer. I am sure you can make a sound case to them; maybe phone them & talk through with them & get them onside & helping the explantion. Wishing you good success with it. Susie

[Joed]

Susie....

You've explained what I experience very well. "Instruction Interruption" is exactly what it feels like, and like you, I can feel the message getting to my brain, and even getting partially to where it completes the circuit, but something stops it. The first time it happened to me was when I was preparing to climb some steps, so maybe for some reason, that particular movement tends to trigger this more often. (?)

I've completed my telephone interview with the Canines for Independence group, and I'm now getting out their forms for my NS and PT to fill out. The next step is an in-person interview, and then scheduling the training.

Thank you for the well-wishes. As I get closer, I'm getting more excited about what an assistance animal can provide in my daily life.

Now, if I can just find one that does the dishes.

[susiejt]

Joed...
"dishes" - that really made me laugh, good after hard emotional day of an OT assessment for home help. What a relief to find someone with same "instruction interruption" experience. Phew!! And now to know that you can actually feel it too - that makes me feel so much better about it. It's nice to have company in strange mysterious things. Most people do not understand such a weird description, you can see them trying but it has no meaning unless you have felt it, it must sound puzzling & odd; but yes it is very tangible isn't it! It's like the message has a subtle tracking device on it or a traffic camera which starts off an alert in the traffic monitoring centre when there is a pause / delay in the flow - isn't the body a wonderful thing. Please keep us updated on how you go with the interview and training. Good on you!