VIDEO: CP AT A (23-MINUTE) GLANCE

My friend Becky, who lives in cold-ass North Dakota with her husband and two small (utterly adorable) sons, is earning a Doctorate degree in ... oh, hell ... Exercise Science (?) (Help me, Becky...) at UND. She's doing a presentation for an assignment about Cerebral Palsy, and she asked me (because I'm kind of an expert on the subject and she's smart enough to use me) to provide a video for it. She gave me a list of questions and told me to let loose. So I did. For 20-some minutes. And then I thought, "What better thing to put on a blog about being a cripple than a video about being a cripple?" and so here is said video, for your viewing pleasure. (Or rather, here's the link, since I got an error message every time I tried to embed it in this post.)

http://www.youtube.com/watch?v=PtMOia5rZAs

Tuckered Tif, Spastic Somnambulist

So guess what?
I sleepwalk.

Yes, you read that correctly.

I, a certified crutch-toting, walker-using, scooter-driving, board-certified cripple, somehow walk in my sleep.

And that's not all. Apparently I take somnambulism to a whole new level by adding words and actions. I don't just sleep walk: I sleep converse. I sleep do stuff. I've lost count of the number of times I've fallen asleep in bed and woken up somewhere else entirely. Then there's the whole, "Why is there a gallon of milk in the bathtub and a loofah in the fridge?" deal.

The crowning glory of my unconscious nighttime activities came in early summer of 2008, when I rose from bed one night, packed an overnight bag containing my toothbrush, my hairbrush, my shaving razor, and every clean pair of socks I owned, put it in the closet, shut the door, and then calmly crawled into bed again and knew nothing about what had transpired.

When I woke up the following morning to get ready for work (I worked at Weis at the time) all my stuff was gone. These days I'd suspect the NSA, but at the time I had a different theory:

Thank hordes of pantheons I worked at a supermarket: I was able to go in early and buy a toothbrush and comb to tame my tangled tresses and dispense of the dreaded Morning Breath. I had to go sockless that day and hope no one smelled my sweaty feet inside their standard-issue black sneakers. Later that night as I was preparing for bed, I opened the closet and there sat my overnight bag, stuffed to the brim with clean socks.

But how did I do it?

Sleepwalking, sleep talking, and even sleep "doing stuff" is not that uncommon; people do these things rather frequently, actually. Somnambulism involves a sort of disconnect in brain circuitry, temporarily disabling the process that keeps sleepers in a state of semi-paralysis -- and, as it follows, in bed. When my brother was 13, he picked up a wallet that had $50 in it that he'd saved by mowing  lawns, walked outside, opened the door in the face of the chimney, put the wallet inside, shut the door and went back to bed. He searched high and low for that wallet for weeks on end, only recovering it in late October when our father cleaned the chimney in preparation for winter fires in the wood stove. 

Our father, a trucker, often mumbled about mile markers and truck stop food in his sleep, and my mother's sister Teena will answer anything you ask her when she's in the right sleep stage. She once confessed to playing hooky from school by holding a thermometer up to a light bulb to feign a fever. Nocturnal ramblings of all sorts are programmed into my being.

 The talking I can understand. Talking requires no legwork or balance, just the ability to speak, which I definitely possess. (I'm kind of a motormouth, actually.) But walking? Putting one foot in front of the other and remaining upright while unconscious? I can barely do that when I'm awake! I'm averaging two falls per day right now. DAY. When I'm AWAKE.

I have a few theories: 

1. I use my crutches, at least some of the time. 

The brain, it would seem, is quick on the uptake even when it's in Sleep mode. If I can pack a bag in my sleep, I can use a crutch in my sleep. It makes sense. I know this theory doesn't always hold true, though: I woke up one night because I stepped on an Allen wrench that escaped from the toolbox like some home repair version of "Toy Story," and I definitely wasn't holding any mobility aids.

2. I fall, but it doesn't wake me.

I'm so accustomed to gravity working really, really well for me that I can often hit the ground without interrupting the flow of a conversation I'm in. I make contact, I roll over, and I keep talking. (Like I said, I'm a motormouth.)  I was once at a church service back in Evansville as a member of the choir, and I took a header during the processional and didn't stop singing. It is entirely feasible that I fall whilst midnight roaming and just stay put. After all, I can't think of a better explanation for waking up on the kitchen floor. I doubt I'd just waltz in and curl up on the tile, underneath which is the concrete, which is ungodly uncomfortable.

3. I crawl.

I do crawl sometimes when I'm awake, more often these days because I can't keep my balance as a malformed biped whose muscles and joints age at the speed of Jeff Gordon driving the Indy 500. You can't body slam the floor if you're already on it, right? I could do some sleep-crawling, sure.(I wonder how you'd express that in Latin.)

But my fourth and final theory is by far my favorite:

4. I am a superhero. 

Think it over: Charles Xavier's X Men have all kinds of wonky powers. So do the Fantastic Four and Miss Peregrine's peculiar kids-that-aren't-kids. And the chicks from "Charmed". And Sam and Dean Winchester. And Sandra Bullock in "Practical Magic". And ...

So why not me? By day a cripple, doomed to a life of clumsiness and repeated violent liaisons with floors and furniture; at night a force of strength and stealth who uses my power for the greater good, as served by putting the milk jug in the bathtub and the loofah on the top shelf of the refrigerator. Tuckered Tif, sleepwalking to the rescue.

Someone might have needed the socks in that bag.

Always be prepared.

Stuff Cripples Want: The Store Bought Edition

When I was a little kid, the Sears Christmas catalog was still huge: pages upon pages upon pages of glorious toys that I would flip through oh-so-slowly, imagining what great heights of joy I could achieve if only the 5-story dollhouse and the Barbie that swam were mine, all mine.

Now I have grown up, and the Sears Big Book isn't big anymore. My catalog love has been transferred to the fascinating world of online lists of accessibility products, which are my new toys. Oooh, I want the Quickie All-Sport Pro with the half-deep seat pan and the high platform foot plate! And oh. my god. Have you seen this wheelchair that can climb stairs??!

I have an entire Pinterest board dedicated to this stuff, and sometimes I click through it and practically drool on the keyboard. I've bought a few of the smaller things I pinned: the extra large heating pad, the knockdown stationary handcycle,  the acupressure mat. When a box comes in with something I have saved up for that will make my life easier or more comfortable or more active, the heavens open and a host of angels starts singing Handel's Messiah. (Okay, so I'm exaggerating. That hasn't happened yet. But I'm convinced it would, if one day the box contained an unassembled  recumbent bike that I could put together with my Dad and then ride and ride and ride until I passed out.)

Perhaps this infatuation with things isn't so great, even if they would make my life easier. After all, I can get by without most of them: all I really need is a pair of crutches and a scooter, though I'd give up some fingers for a decent manual, and my right foot for the Quickie All-Sport Pro with the half-deep seat pan and the high platform foot plate. I was raised to be tough. My mother beat toughness into me with anything she could lay her hands on. My father was better, but he didn't coddle: I was expected to at least try to find a way to do something on my own before I asked for help. If I encountered a physical obstacle, he made me use my brain to figure a way around it. Most of the accessibility aids I had when I was young were things I'd find just laying around: milk crates as step stools, long sticks for reaching, even things like low grapevines if I needed to rest while we were hunting mushrooms in the woods, which had the added benefit of being incredibly like all-natural playground swings.

Thanks to Dale, I'm fairly adaptable. My body might not bend and flex, but my mind does. Put to it, I can figure out a way to do almost anything, comme ci: 

And yet, I like to look at, and occasionally buy, the things someone else's brain has already devised. Cases in point:

1. The electronic dustpan that sucks stuff up so you don't have to bend down. I know I could buy a plastic dustpan with a long handle at Dollar General for like, 5 bucks, but the Eye Vac is just cool. Part of me wants it just so I can push stuff at it and watch it get sucked up. And it would ostensibly eliminate that annoying dustpan dirt line.

2. WeatherChaps Waterproof Lap Cover. There are cheap ponchos in the world. There are garbage bags. And then there's this beautiful creation: a bag I can zip my legs into so my lap doesn't get wet. Since I live in a state that gets an average rainfall of over 40 inches per year (and since I'm convinced most of it falls directly on Lock Haven, does not pass Go, and does not collect $200), this could be a real asset. Something tells me it would beat tearing the bottom out of 20 gallon trash bag and stepping into it like it's a plastic maxi skirt. 

This is the meaning of jealousy.

3. Sonaris Reclining Bath Lift. Okay, so I have a shower chair. Okay, so it's perfectly serviceable. Yeah, yeah, yeah. Sometimes a girl just wants to bathe in vast amounts of bubbles, dammit. And every time I want to bathe in vast amounts of bubbles, I have to risk falling and breaking my neck trying to get in and out of the tub. A shower chair is not equal to a bath lift. A shower chair won't lower me into the bubbly goodness and then lift me out when I'm done. A bath lift will. And a good one like the one you see here will also cost me literally thousands of dollars, which of course I don't have. I wouldn't even have shoes on my feet if it weren't for the generosity of others; forget the cost of a bath lift. But that doesn't stop me from wanting one. If I had a bath lift, I would probably never get out of the tub. I'd just relocate my whole life to the bathroom and live in the tub like some forgotten daughter of Poseidon. It would be so glorious.

So now that I've made my opening bid and listed some superb exemplars, where is this post going? How do I wrap it up? I feel like it should have some kind of moral, i.e. Don't covet stuff; be proud of your adaptability, etc. etc. and so on and so forth.  But alas, I am not Aesop. I'm not my friend Sarah over at The Clerical Error, either. She could make a parable out of this, I'm sure. I do have an idea, though:

Let's have some participation, class!! 

Name one thing you want that you could live without. It could be anything: a new car, a cootie-catcher, what have you. Just name one thing and leave it as a comment to this post. It's been said that you are what you eat; I have a theory that you are what you want. I've shown you guys some things I want. Now it's your turn. What do you want? Why? It doesn't have to be serious. I used to want Polly Pocket play sets, but I never got them. I'm interested in what you guys have to say. Let's have some fun! Spark a discussion, maybe. Have a chuckle or two. (Possibly salvage this post's lack of a moral of the story ....?)

Ready?

GO!

Palsy Problems: #1: I Saw it on Pinterest: Palsy Edition

"Easiest craft ever! Took me 5 minutes!"

*15 minutes later*


"I hate you. Just sit there in your ease and let me hate you."

"Can anyone else tell what this is?"

"The fingers, Igor! If only I had the fingers!"

E-Crip-Ment Review: Mueller Adjustable Lumbar Back Brace

Ever had a backache you can't seem to get rid of? I know the feeling.

Along with my CP came a crooked spine -- I have scoliosis, an S-curve, that ends right below my shoulder blades. But the funny thing is, I never hurt *between my shoulder blades*, which would make the most sense. Because of the constant pull on my spine from rigid muscles (and therefore weak, tired muscles) the pain travels down the rest of my spine and on into my tailbone. My muscles hurt. My vertebrae hurt. And a backache seems to have the malevolent ability to make the rest of me hurt, too. (Fellow back pain sufferers will know exactly what I mean.) I hope it isn't surprising, then, to note that I've dedicated a major portion of my energy to easing that ache.

There are several things you can do if you have a backache that don't involve medication. (I tend to use the Baclofen I have been prescribed as little as possible, because it makes me nauseous and induces a state of torpor a hibernating bear would have to struggle to compete with.) Here are a few of those non-medicine things:

1. Stretching. Get down on all fours and arch your back up. Hold. Dip down. Hold. (This is commonly called the "cat stretch," and it pulls the kinks out of your spine and stetches your back muscles.)

2. Heat. I have a heating pad (review to follow soon) that is my inanimate best friend. I loooooooove to lie with it under my back. Maybe I love it a little too much, because I've been warned that excess heat can actually make an ache worse. Good thing there's a timer on My Friend Heating Pad, huh? 

3. Acupressure. Really. It works. I have an acupressure mat, and the thousands of tiny little spikes actually help. Don't ask me how; I just got really desperate one day and decided to try it because I couldn't possibly hurt any worse. Here's a link to my review of the mat: Acupressure Mat Review 

4. Bracing. This is where today's review comes in. Now, I've had some bracing adventures in my lifetime (AFOs, SMOs, knee braces; rigid, soft, somewhere in between; corrective, supportive. I know about orthoses, baby.) So when I say I've found a good one, I've found a good one. And the Mueller Adjustable Lumbar Back Brace (Click the link to see it on Amazon.com) is a good one.

I bought it when I was planning on road-tripping with some friends and was in the car for several straight hours, which tends to leave me lying stretched out across the back seat moaning in agony. Only there wasn't room for stretching/moaning on this trip, because I was sandwiched with all the luggage. So I tucked a few Bac in my pocket just in case, and trusted the brace to help me get through the 16 hour trip with my sanity intact. And it did. My back ached some at the end of the day, but I could still move, stand, walk -- all those important locomotion things. This was a vast improvement on the usual, and on previous braces.

I tried a full, corset style brace first. It went on like a vest and closed down across belly with Velcro; padded metal stays were sewn into the sides like ... well, like boning on a corset. I guess that's why it's called corset-style. The shoulder straps were adjustable a la bra straps ... except the fastening was sewn onto the wrong side of one of the straps, so it always had a twist in it. Annoying thing number one.

Annoying thing number two: it was white. That's my fault; I have no idea what I was thinking. Never, ever, ever buy a soft or semi-soft brace to be worn over your entire torso under your clothing that is anything approximating white. You will sweat. It will turn yellow. THAT WILL BE DISGUSTING. So what if no one else will see it?! You'll see it, and if you're like me, wearing something sweat-yellow that was once white will make you feel like you haven't bathed in decades. And trust me, bleach will NOT help.

Annoying thing number 3: the fastening sucked. The Velcro pieces weren't large enough, or strong enough, to fit comfortably. Maybe this is because I'm a plus-sized lady, but this was a plus-sized brace ... it should have stayed on. The fact that it did not stay on after the second week tells me it wasn't my size that was the problem -- it was the brace. It would roll up at the bottom and stab me in the belly. I'd unfasten it and straighten it out. It would stab me again. One morning in the wee sma's I ripped it off, marched to the kitchen, and chucked it into the garbage can. The cons had begun to outweigh the pros; the brace had to go.

And then there was Mueller. Aaaaahhhh.

I don't think anyone will ever make a brace of any kind that is the epitome of comfort, but this one is certainly better than the first one. It's belt style, not corset-style, so at first I was a little concerned it wouldn't provide enough support. (I always think it'll be nice having a brace up there coddling that spinal curve, but it wasn't particularly.) It passed the road trip test with flying colors though, so I need not have worried about that. The fastenings are very generous, with good, strong Velcro and double-wide elastic bands. It's actually a little too generous, which is its only drawback -- I bought it in my size, and I have to fold the closure nearly double around myself. That takes some muscle, with elastic that strong. Good thing I have it. (I guess what I'm saying is that Mueller braces run big. Size down.)

I always recommend wearing an undershirt with any kind of torso brace. Thin, because you don't want to feel too squeezed, but wear one. It'll stop chafing and ease pressure points. It's like socks and shoes. (Wait ... what am I saying? I hate socks.)

Anyhow, if  you need a good brace at a reasonable cost, I'd say go with Mueller. It's only the second kind I've tried, and I'm sure with age it'll start to weaken in spots and maybe roll a bit at the bottom, but until then, hey -- why mess with a good thing? We all wear out eventually.

(Some of us sooner than others ...)

So What IS Cerebral Palsy, Anyway? Part I: Types

So what is Cerebral Palsy, anyway?

Short Answer: It's a condition caused by damage to the brain in utero or during birth, or by an organic inability of the brain to develop and/or grow properly. It is not a pediatric stroke, though the symptoms are similar.

Are there different types of Cerebral Palsy?

Short Answer: Yes. CP is generally accepted as having 4 major types: Spastic, Ataxic, Dyskenetic, and Mixed. Below is a brief description of each type.

Spastic Cerebral Palsy is the most common type of CP. Approximately 80% of people with Cerebral Palsy have a spastic type. Types of spastic CP are categorized by which parts of the body are most affected, and 3 general types have been defined: Spastic quadriplegia (all four limbs affected); Spastic diplegia (two limbs on opposite sides of the body affected, most commonly the legs); and Spastic hemiplegia (affecting one side of the body.) Occasionally you'll see a 4^th type of spastic CP mentioned in medical literature -- Spastic tertraplegia, denoting marked  involvement of both legs and one arm or hand -- but it doesn't seem to be widely accepted as part of the categorization process, and is generally lumped in with diplegia. (Remember, we're categorizing by what is most affected; Cerebral Palsy of any type is a whole body condition.)

Spastic CP is characterized by a noticeable and chronic increase in muscle tone. People with types of Spastic CP often exhibit stiff, labored movements, limb rigidity, and joint problems. They also have trouble with balance and both fine and gross motor skills -- symptoms that are present across the CP spectrum, no matter the type. Problems with sight, hearing, and/or speech are common among all types as well.

The next type of Cerebral Palsy is called Ataxic CP (or Ataxia.) The most marked symptoms of Ataxia are those found in any other type of Cerebral Palsy: problems with walking, balancing, and coordination. Those with Ataxic CP may exhibit an unsteady gait and have an especially difficult time with quick movements or with tasks that require a great deal of fine motor control, such as writing.

Next comes Dyskenetic CP. At one time called "Athetoid" this category has been renamed and expanded to include any type of Cerebral Palsy of which the primary symptom is uncontrollable muscle movement. (Athetoid now falls under this umbrella, as do Choreoathetoid and Dystonia.) Those with a type of Dyskenetic CP exhibit uncontrollable movements of the arms, hands, legs, facial muscles, and tongue. They may have a difficult time swallowing, drinking from a straw, and talking. Muscle movements produced by Dyskenetic CP may be fast and jerky or slow and writhing, and muscle tone can vary from too tight to too loose from day to day, or even within the same day.

Mixed CP occurs when a person exhibits symptoms of more than one type of Cerebral Palsy. The most common type of Mixed CP is Spastic-Dyskinetic. I myself was re-categorized as having a Mixed type of CP when I developed dyskinesia in high school: trouble controlling my arms (they like to bend on their own), and an occasional, sustained, repetitive tic of the neck and face, and I am now classified as Spastic-Diplegic-Dyskinetic. (Mixed.)

Note: Cerebral Palsy is notoriously difficult to classify. Due to the nature of brain abnormalities, symptoms such as dyskinesia, intention tremor, and dysphagia (trouble swallowing) can appear suddenly throughout a person's lifetime. Categorization is mainly for purposes of statistical analysis and broad treatment goals.

What parts of the brain does Cerebral Palsy affect?

Short Answer: All types of CP primarily involve the cerebellum, the area of the brain responsible for balance, coordination, and voluntary movement. Also affected is the cerebrum, which is the main "body" of the brain that houses the areas responsible for all other brain functions. (See diagram below.) Depending on the type of CP, different parts of the cerebrum may or may not be affected. (Some people have trouble with the part of the brain responsible for speech, others with the part of the brain responsible for sight, etc. CP is multi-symptomatic, meaning an individual can have trouble with many of these things simultaneously.)

Diagram of the human brain showing the cerebellum
(against the brain stem)
and the cerebrum, labelled with some of the things
for which different areas are responsible.

This post is one in a series dealing with the technical aspects of Cerebral Palsy. Tune in next week for more information on the side effects of Cerebral Palsy, and its treatment.

Un-Tumblr State of Mind

Miss Crip tried tumblr for a while, which has its advantages and disadvantages. I was thinking of moving this blog over there lock, stock, and barrel, but it's not the best place for lengthy-ish blogging. I had more followers though, which was really nice.

If you are reading this blog, follow it! Takes 2 seconds to subscribe to an RSS feed. And then chat with me in the comments and let me know you're tuning in. It makes me happy. 

I found something over the past months that may have saved my little crippled sanity. It's a Facebook group called, "You Know You  Have CP When ..." I've tried support groups before, but they never seemed to fit. You Know does. It's fun. It's informative. It's all CP, all the time. I'm still the only "ceep" for about 100 miles around, but I don't feel as lonely anymore. I can chat with other people who are walking the gimp walk, which is so awesome I can't even describe it. Palsied loneliness, meet the Internet. . . EUREKA!