Heels and Toes with C and P...
Sep. 16th, 2012 04:23 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
capri0mniA continuation of this post: My Left Foot [/Unintentional Cerebral Palsy In-joke]
Right. So, as I mentioned in that post, contracted Achilles tendons, and resulting chronic toe-walking, is pretty much universal among people with cerebral palsy, regardless of severity or type {Spastic, Ataxic, Mixed, Hemiplegic, Diplegic, or Quadriplegic, Gross Motor Function Scale 1, 2, 3, 4, or 5}* -- whatever the difference, the presence of toe-walking is there.
This struck me as strange, considering how diverse the rest of the Cerebral Palsy spectrum is (as evidenced by the list of qualifiers in the curly brackets). So -- about a week and a half ago, I mention this to Audrey, saying (something like):
"There must be something particularly tricky about putting our weight on our heels, if that's the first part of the system to break down."
And she responded: "Well, not really. It's just that folks with C.P. don't walk. It happens to able-bodied people people, too, if they're off their feet for a long time. That's why doctors put you in a big plaster boot when you break your leg, to keep your foot at 90 degrees, so your heel cords don't tighten up, and you toe-walk when they take the cast off."
It took a while for me to get past the subtext (translation: People with C.P. walk funny because they give in too easily to their condition). But a couple of days later, I started thinking about the fact of what she was saying: It's natural for all human beings to drop their toes unless they're actively using their feet to support their weight.
And that's when the light bulb flicked on:
It's like there's a standing order from the frontal lobes of the cerebrum to the muscle-control center of the cerebellum: "Keep the feet in extension until you get a message from me that it's flexing time." TAB-type folks with broken legs (who don't get a boot cast) get chronically toe-dropped feet, because the frontal lobes have no need to send the "Flexing time!" message for weeks and weeks. Folks with cerebral palsy get chronically toe-dropped feet because even when their frontal lobes are sending the message, the muscle-control centers aren't receiving it (clearly, at least).
So that got me thinking that, probably, the ability to drop our toes and raise our heels, is ... you know: important, and has probably been important since hominids started this walking-on-the-hind-legs gig two million years ago (roughly speaking). And that got me thinking about why. Well, first off, for most of the last 2 million years, whenever we weren't walking, we were sitting or sleeping on the ground, instead of on furniture that allows us to stop at the halfway point. So I came up with the hypothesis that maybe we need to drop our toes in order to get up again.
So I told my idea to Audrey, when she came to take me shopping, and she didn't believe me. She kept insisting that pulling your feet into a flexed position is even more important when getting up from the ground, because you use the muscles in the ankle like a spring to push yourself up.
I tried to remind her that there's a transition between sitting and standing, and that's when you need to drop your toes, but we were in the middle of getting my chair strapped into the van, and I couldn't draw a diagram, so we dropped it for the moment.
But I will say this about Audrey: even though we have vast disagreements about politics, she is, nonetheless, a fellow geek, and the sentence: "You're over-thinking this" is nonsensical to her. And when we got back from shopping, she was still working it through, and she got down on the floor, so she could get up again, and pay attention to each part of the movement.
She started out by explaining that in Asian cultures (where she was quite often stationed, back when she was in the navy) where they don't often use chairs, the men will just squat down on their heels, with their feet always flat to the ground, so they just have to straighten their legs to stand up.**
"Yes," I pointed out, "but that's probably because they have those tender dangly bits hanging out front, and they'd really like to keep them away from the rocks."
"Oh, right," says she, and switches to a cross-legged sitting position (what politically sensitive physical therapists these days are calling the "Tailor-Sit position" instead of "Indian style"). And then she starts the process of standing up.
1) "First, I pull this leg out from under the other one," (and so she does, but she extends her feet, and drops her toes at the same time), "and swing it around behind me."
2) "Then, I do the same with the same with my other leg," (as she does).
3) "Then, with both legs behind me, I pull my toes up, so I can roll back onto the balls of my feet, and use my ankles as a spring to propel myself upright." (she rolls back onto the balls of her feet, but does not, however, stand all the way up, instead, she drops to her knees and sits back on her heels -- with her toes pointed).
I nod and say: "Yes, but you pointed your toes, and they're pointed right now."
She glances back: "Oh, yeah, they are... Okay, let me try that again, but this time, I'll deliberately keep my feet flexed the whole time."
She does try. ... And gets as far as getting her first leg out from other the other one. But after that, she is well and thoroughly stuck -- in exactly the same way I get stuck when I end up on the floor instead of in the seat of my wheelchair.... Which was interesting to see, because, while not an athlete, she is still in pretty good shape, with a strong set of core muscles and good balance, etc. She can neither roll onto her knees so she and rotate her lower legs back behind her, nor can she get enough momentum to roll her weight forward using her torso-- and the only thing she did differently was keep herself from pointing her toes.
And until then, I've always wondered if it's just me... it's not.
*For those who are curious, my C.P. is Spastic, Diplegic, G.M.F.C.S. 4 (Well, 3, sorta, but I mostly live at level 4). The first word is the type of movement my body has, the second word is for which part(s) of my body are effected, and the number score refers how close to "normal" is my means of getting from point A to Point B (on a scale from one to five)
**I find it really interesting that she considers herself a proud and opinionated feminist, but she still reverted to "how the adult men do it," when discussing a wide swath of human culture. I was really tickled, frankly, that I could turn that around and speak of the men as the more fragile biological gender which is the exception rather than the default.
Right. So, as I mentioned in that post, contracted Achilles tendons, and resulting chronic toe-walking, is pretty much universal among people with cerebral palsy, regardless of severity or type {Spastic, Ataxic, Mixed, Hemiplegic, Diplegic, or Quadriplegic, Gross Motor Function Scale 1, 2, 3, 4, or 5}* -- whatever the difference, the presence of toe-walking is there.
This struck me as strange, considering how diverse the rest of the Cerebral Palsy spectrum is (as evidenced by the list of qualifiers in the curly brackets). So -- about a week and a half ago, I mention this to Audrey, saying (something like):
"There must be something particularly tricky about putting our weight on our heels, if that's the first part of the system to break down."
And she responded: "Well, not really. It's just that folks with C.P. don't walk. It happens to able-bodied people people, too, if they're off their feet for a long time. That's why doctors put you in a big plaster boot when you break your leg, to keep your foot at 90 degrees, so your heel cords don't tighten up, and you toe-walk when they take the cast off."
It took a while for me to get past the subtext (translation: People with C.P. walk funny because they give in too easily to their condition). But a couple of days later, I started thinking about the fact of what she was saying: It's natural for all human beings to drop their toes unless they're actively using their feet to support their weight.
And that's when the light bulb flicked on:
It's like there's a standing order from the frontal lobes of the cerebrum to the muscle-control center of the cerebellum: "Keep the feet in extension until you get a message from me that it's flexing time." TAB-type folks with broken legs (who don't get a boot cast) get chronically toe-dropped feet, because the frontal lobes have no need to send the "Flexing time!" message for weeks and weeks. Folks with cerebral palsy get chronically toe-dropped feet because even when their frontal lobes are sending the message, the muscle-control centers aren't receiving it (clearly, at least).
So that got me thinking that, probably, the ability to drop our toes and raise our heels, is ... you know: important, and has probably been important since hominids started this walking-on-the-hind-legs gig two million years ago (roughly speaking). And that got me thinking about why. Well, first off, for most of the last 2 million years, whenever we weren't walking, we were sitting or sleeping on the ground, instead of on furniture that allows us to stop at the halfway point. So I came up with the hypothesis that maybe we need to drop our toes in order to get up again.
So I told my idea to Audrey, when she came to take me shopping, and she didn't believe me. She kept insisting that pulling your feet into a flexed position is even more important when getting up from the ground, because you use the muscles in the ankle like a spring to push yourself up.
I tried to remind her that there's a transition between sitting and standing, and that's when you need to drop your toes, but we were in the middle of getting my chair strapped into the van, and I couldn't draw a diagram, so we dropped it for the moment.
But I will say this about Audrey: even though we have vast disagreements about politics, she is, nonetheless, a fellow geek, and the sentence: "You're over-thinking this" is nonsensical to her. And when we got back from shopping, she was still working it through, and she got down on the floor, so she could get up again, and pay attention to each part of the movement.
She started out by explaining that in Asian cultures (where she was quite often stationed, back when she was in the navy) where they don't often use chairs, the men will just squat down on their heels, with their feet always flat to the ground, so they just have to straighten their legs to stand up.**
"Yes," I pointed out, "but that's probably because they have those tender dangly bits hanging out front, and they'd really like to keep them away from the rocks."
"Oh, right," says she, and switches to a cross-legged sitting position (what politically sensitive physical therapists these days are calling the "Tailor-Sit position" instead of "Indian style"). And then she starts the process of standing up.
1) "First, I pull this leg out from under the other one," (and so she does, but she extends her feet, and drops her toes at the same time), "and swing it around behind me."
2) "Then, I do the same with the same with my other leg," (as she does).
3) "Then, with both legs behind me, I pull my toes up, so I can roll back onto the balls of my feet, and use my ankles as a spring to propel myself upright." (she rolls back onto the balls of her feet, but does not, however, stand all the way up, instead, she drops to her knees and sits back on her heels -- with her toes pointed).
I nod and say: "Yes, but you pointed your toes, and they're pointed right now."
She glances back: "Oh, yeah, they are... Okay, let me try that again, but this time, I'll deliberately keep my feet flexed the whole time."
She does try. ... And gets as far as getting her first leg out from other the other one. But after that, she is well and thoroughly stuck -- in exactly the same way I get stuck when I end up on the floor instead of in the seat of my wheelchair.... Which was interesting to see, because, while not an athlete, she is still in pretty good shape, with a strong set of core muscles and good balance, etc. She can neither roll onto her knees so she and rotate her lower legs back behind her, nor can she get enough momentum to roll her weight forward using her torso-- and the only thing she did differently was keep herself from pointing her toes.
And until then, I've always wondered if it's just me... it's not.
*For those who are curious, my C.P. is Spastic, Diplegic, G.M.F.C.S. 4 (Well, 3, sorta, but I mostly live at level 4). The first word is the type of movement my body has, the second word is for which part(s) of my body are effected, and the number score refers how close to "normal" is my means of getting from point A to Point B (on a scale from one to five)
**I find it really interesting that she considers herself a proud and opinionated feminist, but she still reverted to "how the adult men do it," when discussing a wide swath of human culture. I was really tickled, frankly, that I could turn that around and speak of the men as the more fragile biological gender which is the exception rather than the default.
no subject
Date: 2012-09-17 01:53 pm (UTC)Also, heh. Tender dangly bits indeed.
no subject
Date: 2012-09-17 06:54 pm (UTC)In the last year or so, I've run into (counts) 4 different anecdotal instances of folks not getting diagnosed with it until well into adulthood (including my aide's cousin, who was diagnosed earlier this year at age 40-something; the "You mean there's a reason I was always a klutz as a kid, tripping over my own feet at random times?" diagnoses).
GMFCS 1 (the mildest class on the scale) is: "Slow to develop walking, child is walking normally without assistance at age 2 years" (instead of -- what's normal, a year?)
GMFCS 2 is: "Can walk independently without mobility aides, but the gait may be visibly different, and the person tires over long distances, and has trouble with balance, especially when walking on an incline. Has more trouble than level 1 folks with running and jumping."
3: "Cannot walk without handheld mobility devices (crutches, canes, walkers). May need to use a wheelchair to navigate outdoors or over long distances."
4: "Can sit upright with minimal support, and transport self using either a manual or motorized chair."
5: "Needs more support to sit upright, cannot transport self using a wheelchair, but needs to be pushed or carried."
---
And I note that really, whether you're classified as at level 4 or 5 depends more on your social and economic privilege than what your body is actually capable of doing. If you don't have the muscle control/ stamina for a manual chair, but your family can't afford (or you live someplace where you cannot buy) a motorized chair, your C.P. is suddenly a lot more severe than someone with money -- even if your bodies' states are exactly the same.
There's no escape from Intersectionality!
no subject
Date: 2012-09-18 04:16 am (UTC)More seriously, it’s a strange thought. I’ve considered the likelihood of my various issues with space/time and memory (sometimes combined, sometimes not) being linked with neurological damage, but the toe-walking I pinned on autism*. I’ll have to ask my parents about my development – I can’t recall if the story of a kid waddle-running is of myself or my sister. In a manner probably tangential, this also brings to mind the fact that I learned to read quite late.
Re: classes four and five, I can feel Intersectionality breathing down the back of my shirt over the line between the two.
Also, I find it fascinating that a casual google of cerebral palsy pulls up information directed primarily towards caregivers – how to tell if your kid has it, how to deal with your kid having it, what to expect their life will be like as an adult… Nothing is directed at ‘you, the adult person with this disorder’. I also learned that depression is commonly comorbid with C.P., and that people with a “glass half full” attitude are less likely to have it.
From which I gather that those able-bodied people have a monopoly on water. What assholes.
* I carry an amazing amount of paranoia about my claim on this being ‘false’. I would write a post about how problematic the desire to receive a label from the medical establishment is, particularly when one has made an educated self-identification, but I don’t have much more to say than ‘it sucks, because their opinion costs thousands of dollars’.
no subject
Date: 2012-09-18 05:46 am (UTC)Just so. Which is why, when I was hunting down info in the writing of this post (this was one of start-now-finish-later babies), I was so excited to find the booklet Living With C.P. at least acknowledged that people with C.P. exist at all ages, not just children and babies.
I also learned that depression is commonly comorbid with C.P., and that people with a “glass half full” attitude are less likely to have it.
...And when that wonderful pamphlet I linked to above then proceeded to tell me that the way to deal with clueless, careless, doctors was to "put on a happy face, and be nice" (NB: my translation), that sparked this post: By "Positive Attitude" do you mean "Snarky?
I'll tell you what's depressing: it's not my cerebral palsy. It's being told by every sector of the society I live in that I ceased to exist the moment I turned 18. ... And not only am I a "glass half full" kind of person, I'll even squee at you about the wonderful air in the top half of the glass... But there are days when even I'm reduced to banging my head against the wall in frustration and despair (especially in the current political climate, when I and "my people" are blamed for needing too much, and ruining the world economy).
From which I gather that those able-bodied people have a monopoly on water.
No, they don't have a monopoly on water, but they do have total control over who gets to have a glass (and what size of glass), and who is only allowed to try and drink water from their cupped palms.
What assholes.
To quote my father some more: "But that's not to disparage a perfectly decent body part..."
no subject
Date: 2012-09-18 01:09 pm (UTC)Ah. Yes. Also, that is a beautiful way to draw out that metaphor.
(especially in the current political climate, when I and "my people" are blamed for needing too much, and ruining the world economy)
It is incredible to me how many SF utopias include in their list of wonderful futuristic accomplishments a complete nullification of physical and mental chronic illness – as if the disabled body can't be a part of a perfect world. It seems we aren't even a part of a financially secure one.
[ETA] The next chapter of Acorn's story has been open in a tab on my browser since you posted it, mocking me with the fact that I haven't been able to read it. I'm hoping today is the day.
no subject
Date: 2012-09-18 08:39 pm (UTC)Precisely. Which is why, when it seemed like the whole world was getting goosebumps of inspiration from Christopher Reeve's keynote speech to the Democrat National Convention (1996), I was getting goosebumps of the "utterly terrified" variety, and it spawned a plot bunny of the damned nigh dystopian world that would spring up after cures were found (for the privileged).
And in the week after his death, I was moved to post this to my journal: Christopher Reeve -- my thoughts, such as they are
Also: about toe-walking: my mind sprang immediately to C.P. because that's the experience that polarizes my filters. I have no idea about whether it is also connected to autism. It's totally reasonable for you to want that aspect of yourself to be accepted as part of your "innermost wiring," and to have your own knowledge of your mind and body to be accepted as true.
But, as I said, putting our weight on our heels, and using them to balance is such an evolutionary oddity that it's no wonder the mechanics of that are among the first things to get lost in the shuffle.
no subject
Date: 2012-09-19 08:51 pm (UTC)Hm, I hope I didn't come across as defensive re: autism vs. CP as a cause of toe-walking; what I went on, there, was a tangent based on my recent struggles with the issue of claiming identities. The possibility of the cause being different from what I've figured in the past? Is interesting rather than unpleasant.
Speaking of tangents, I am going to take the fact that I am conversing with you to complain over the fact that I have brainfog intense enough, today, to drive for fifteen minutes before figuring out I had forgotten my glasses back home. Scary!
no subject
Date: 2012-09-19 10:01 pm (UTC)Not to put too fine a point on it: Yes. That is precisely what many people sincerely believe. In the past, when I was in college/university, and thus in daily contact with a wide range of strangers, people would say to me (something to the effect of): "But how do you know there's no cure for C.P.? If you work really hard at therapy, you might be cured."
And when I'd answer: "Well, I doubt it. But even so, I'd rather spend my energy and time doing work I can do without being cured, then spend my entire life in a physical therapy gym," they'd frown and mutter and give me the stink eye as if I'd just told them I like to shoplift because it's easier than waiting in line at the checkout counter.
As if being (mostly) happy with who I am in my own skin was a mortal sin...
---
And no, you didn't come across as defensive -- I just thought, after I'd posted -- that maybe I was falling into the trap of Able'splaining, and coming up with a glib explanation for your experiences. Which -- ick.
no subject
Date: 2012-09-20 12:40 am (UTC)Ahhh, now I see your motivation. Your acknowledgment of your fallibility even within the realm of what concerns you most is... hm, "neat" doesn't seem right, but that's what I've come up with.
no subject
Date: 2012-09-20 01:22 am (UTC)no subject
Date: 2012-09-20 02:08 am (UTC)Bleh. You know, it's been a frustrating week for me on the disability front. I should make a post about it – maybe invective will wash the bitter taste out of my mouth.
no subject
Date: 2012-09-20 02:39 am (UTC)And that was the starting point for my Reeve-inspired plot bunny... I noticed that all the disabilities he listed in that speech, from S.C.I. to Alzheimer's, fell within the realm of neurological disorders. And it's conceivable that someday, a single great scientific flash of understanding would give us one key to unlock the puzzle of all of them. ... Leading our society to believe they really had "Cured all disabilities." Until a few generations down the road (because our lives are no longer shortened by neurological disorders), disorders in other body systems start appearing -- I picked "bones". And because by then, the entire political regime is based on the notion that "We are a people without weakness" all the malformed children are hidden away in hospital-prisons for
experimentationtreatment... (They'll return to their families when they've been cured, honest!)Boo to the frustrating week! Also, I'm sending virtual sunshine in the hopes of burning off some of that brainfog.
no subject
Date: 2012-09-20 03:07 am (UTC)Thank you for the sunshine! Here's hoping I will have the time to pick up a large cup of coffee tomorrow before class.
no subject
Date: 2012-09-20 03:40 am (UTC)It was a nigh dystopia, though, rather than a full-blown one, because a) I am like you in regards to the genre (I read fiction to cheer myself up, damnit!) and b) I don't believe any age or culture can be 100% miserable... Most of the adult professionals in the (I forget what I named it) home actually did care for / were fond of the children, but were constrained by what they'd been taught to believe (you can think outside the box, but thinking outside the universe is harder) and by the government bureaucracies...
Coffee is good! So are glasses -- remember them, too!
no subject
Date: 2012-09-20 12:24 pm (UTC)I am drinking a preliminary cup of tea – enough caffeine to get me out the door with all the necessary clothing items, I think.
[ETA] My glasses are on my face and I'm headed out for the day. Here's to accomplishment #1.
no subject
Date: 2012-09-20 09:11 pm (UTC)I was required, at some point in my educational career to read 1984 for class. I could not get past the halfway point. Each fear the protagonist had about his future fate got more and more gruesome, and then, when the future became the present, every single one of the things that were done to him turned out to be exactly as he imagined. Even in an age before cut-and-paste, it seemed he was just copying himself word for word.
I later learned that he was dying of TB at the time he wrote it, and thought: "Well, that explains it..."
What it doesn't explain is how this book got accepted into the canon of Great Literature.
Oh, well...