ROUND THREE: What CP Parents Are For (Part D.1)

I'd like to see us make our collective way to a time and place where and when CP is flat on its back receiving the ol' ten count from a million of us referees: One. Two. Three...

To get there, though, we'll no doubt have to do a voluminous amount of knowledge work. We'll have to develop innovative ideas, come up with new answers to old problems, make difficult choices from among imperfect options, engineer products or services, and more.

So let's get busy.

I mentioned in Part C that the Net makes it possible to selectively find in the masses the exact knowledge or expertise one needs. Our orgs are already doing this. I want to see 'em really ramp things up, though, and that's the subject of this post. I won't go into the challenge of accessing and attracting full-time help for full-time pay. That seems not to be much of an issue for those that can afford it. Instead, the focus here will be on low- or no-cost online solutions to acquiring expertise. 

Let's start with using social technologies for finding volunteers. 

Several of our nonprofits say somewhere on their sites that they're looking for volunteers. They typically have a "Get Involved" page that typically expresses a need for fundraising or event-specific help. Rarely, however, do they go further. Let's Cure CP posits a short list of "professional skill sets that can benefit our foundation." (including database development, legal or tax consultation, medical and counseling expertise, and copywriting) But it doesn't go into detail. It doesn't specify what any of the projects on its "to do" list are. And it does little to motivate potential volunteers ("What's in it for me?") to act. I'm not sure why. Nor am I sure why no one seems to be aggressively using social techs like Twitter and Facebook to do those same things.

Note to self: Why couldn't businesses seek volunteer help, too? Isn't it conceivable that a CP parent who wants to help out would be quite willing to share his or her skills with a CP-connected business -- let's say for example Advanced Muscle Stimulators, in Rochester, NY -- that has social as well as private aims?

PRO BONO may also be a powerful alternative for nonprofits, for completing projects of almost any kind and scope.

"Every year, for-profit business professionals donate over $15 billion in pro bono services" for nonprofit marketing, fundraising, HR, IT, board development, legal and strategic planning support. That's according to Taproot Foundation, a nonprofit that makes business talent available to organizations working to improve society. It's a resource nonprofits in the CP arena need to tap if they want to realize their full potential. I encourage ours to visit the site for tips and tricks related to getting pro bono support.

We've got to be smarter. Rather than do more with less, we've got to do more with more.

One particular (relatively small) communications project has been on my mind.

In May of this year, Cynthia at Reaching For The Stars informed me that she was working on "an article highlighting the most promising research areas and what that will mean for people with CP." We're almost in September and to the best of my knowledge it still remains to be written. 

To produce a piece like the one I suppose she has in mind can take a lot of time and thought. No doubt she wants it to be thorough, accurate, inspiring, etc. I also know she's swamped with other work. So the fact that it's still on the back burner is perfectly understandable, forgivable, excusable -- all those things. 

But what a darn shame. 

Her article-to-be goes right to the heart of what RFTS is trying to do. It's mission critical. And the would-be contents, in my opinion, are vitally important. This thing could have been in circulation for three (3) whole months by now getting: passed around...dissected...re-presented...and acted upon. Those THREE MONTHS LOST matter to my daughter.

Someone else could write the piece.

If pro bono copy writing isn't available through Taproot, well, then what about Fiverr.com? "Fiverr, stylized as fiverr, is a global online marketplace offering tasks and services, referred to as 'gigs' and micro-jobs beginning at a cost of $5.00 U.S. per job performed." (per Wikipedia) At Fiverr, there's no shortage of writers making offers like this one: "I will write an article up to 450 words about any topic for $5." It's all legit. It employs a reputation system like eBay's. It's worth a try.

An assignment like Cynthia's could even conceivably be broken down into smaller bits, i.e., into its component parts, and worked on by several people (parents). Or, as an alternative, we could use social technologies in entirely different ways to get her messages across. 

More on options along these lines in the next post.

Our CP community may very well be under-funded, under-appreciated, and under-other-things. But those of us in it don't have to be under-ambitious, under-clever, or under-hard-working. Avenues like the ones above are ours for the exploring. We owe it to our kids to check 'em out. 

ROUND TWO: Classified Info (Part A)

"In this corner --

institutions and organizations committed to fighting the Cerebral Palsy fight and improving outcomes as they relate to CP." 

Hmmm. Seems understandable enough, doesn't it? On further review, however, what /who are those institutions and organizations? How would one decide which ones to include or exclude? For clarity's sake -- my own and anybody else's who may be keeping score at home -- I want to try to spell out more generally who I see as being on our side. Who the good guys are, in other words, in the CP fight. 

I've come up with a crude classification scheme. 

Here's some background. 

The goods-producing component of our society has traditionally been thought to consist of three (3) sectors. There's the public /government sector, the private /for-profit business sector, and the civil society /nonprofit sector. Others who think about such things also add a fourth sector -- variously called individuals, households, or "non-organizational forms." 

For purposes here, I intend to think in terms of those four (4) sectors, and, as would-be CP fighters come into my sphere of consideration I'll slot them -- like this:

Public /government ("public initiatives for public good")  Example: AHRQ, the US Department of Health and Human Services Agency for Healthcare Research and Quality  

Private /business ("private initiatives for private good") Example: TheraTogs, in Telluride, CO, makes "customizable physical rehabilitation systems that are worn under clothing to address neuromotor, orthopedic, and postural conditions", i.e., orthoses 

Individuals ("all other non-organizational forms") Example: Jilda Vargus-Adams, a pediatric physiatrist at Cincinnati Children's Hospital 

Civil society /nonprofits ("private initiatives for public good") See next.

Nonprofits represent the majority of my target audience (and Twitter "Following"s)* so far. Probably because I've paid them more attention, I've gotten a little carried away with my analytical knife and carved out these five (5) subsets:

Health. Example: American Association of People with Disabilities (AAPD), America's largest disability rights organization 

Philanthropy. Example: The Annie E. Casey Foundation "develops solutions to build a brighter future for children, families, and communities" 

Research. Example: CanChild Centre for Childhood Disability Research, a research center in Ontario, Canada that focuses on improving the lives of children and youth w/ disabilities and their families 

Education. Example: The Center for Social Innovation at the Stanford Graduate School of Business "educates leaders who can solve the world's toughest problems" 

Human Services. Example: Hattie Larlham Center for Children with Disabilities, an Intermediate Care Facility (ICF/MR) in Ohio that provides residential care to children and young adults

Classifying's always tricky. The further you try to go and the more subdivisions you try to create (to achieve clarity, presumably) the murkier things become. In this case, deciding to which of the four sectors an entity belongs can be tough enough. When you try to make even thinner cuts...well, let me give you an example. I'm pretty sure it's "proper" to classify direct-service agencies as Human Service nonprofits, but -- do independent therapy clinics belong in the same class? How about -- help! -- inclusive recreation groups?

The good news is that nothing here is set in stone; the whole thing's refinable. Also a tool like this only has to be useful. At this point, the categories above make sense to me. Already they've helped me see new patterns. (They've made me realize, for example, that I'm only following on Twitter a few durable CP-related goods providers.) And I'm starting to see other potential uses.

I'm curious to know: Do you classify other organizations for any reason(s)? Do you, or would you, do things differently? Is this useful to you? Does it trigger any interesting thoughts?

*  *  *  *  *

*Trying to process Tweets from those I'm following is too much for my brain on its own to handle. They say making lists based on key words or tags (to compartmentalize) can help. So, I'm in the process of incorporating the scheme above at /on Twitter, too. What's your strategy for keeping up with what others are posting?

Making Sense, Part F

We’re lead to believe that once your child’s been stuffed into one of these orthotic get-ups, she's just minutes away from moving like an Olympic gymnast. As for what additional help she may need to reach such heights, well -- good luck looking to the manufacturers' web sites for answers. I've found most of 'em to be "mostly cloudy" on the subject. As if that part of the equation were no big thing.

THAT PART of the equation is where the child-in-her-device meets up with the physical therapist (PT) and actually GOES TO WORK on trying to improve balance, stability and /or limb motion; where the PT and orthosis apply light-to-moderate CORRECTION as the child is encouraged to move the way she was designed to move. And CAN move. Even though she may have learned, through non-use, not to.

How are things supposed to go? How is the therapy supposed to help /work?

In theory:

Sensory information that is associated with (let's call it) a "corrected movement", and that originates in the muscles, tendons, ligaments, etc., gets routed to the central nervous system (CNS) which then takes sort of a neurological snapshot of that corrected movement. After enough of the same snapshots, the CNS starts to send corrected instructions back to those body parts. The corrected movement becomes learned. 

It's ultimately about trying to imprint patterns. Patterns a child can call upon at will to function effectively in the world.

*  *  *  *  * 

Without going into detail (for example, about how weak and tight muscles are aided and supported by proximal muscles):

I can see how these orthoses...these devices that compress and gently guide muscle groups...could very well help to facilitate correct movement. The rationale for their existence and use as neuromotor retraining devices now makes sense to me. I see no reason not to continue looking into them for my daughter.

Before I buy, though, I want to know more. More about how to increase the likelihood she'll benefit. More about how to proceed with caution. I want to keep from becoming too optimistic. These are just fabrics, after all.

I'm reminded of a line from TheraTogs’ site: “Each child or adult with CNS dysfunction presents hundreds of variables that comprise a unique constellation of sensory, motor, skeletal, joint, and muscular factors.” These have to – somehow, someway – be taken into account.

More to come on that.

Making Sense, Part E

Much of the language used to describe the material properties of the orthoses on our list revolves around “force” words: Pressure. Rebound. Compression. Stretch. Resistance. An orthosis mechanically compensates by changing the outside forces acting on a body, or body part. I suppose that's its primary function.*

In our case, we have...

Six (6) different orthotic devices, six (6) different force-related profiles. For some reason my mind wants to lump 'em into two (2) categories:

1. Those that are primarily compression devices. A Benik vest, elastic therapeutic tape**, compression sportswear, and SPIOs all work based on (the application of) uniform pressure.
   
2. Those that biomechanically guide in addition to compress. With these you get more push and pull, and you get the ability to vary and pinpoint forces -- all thanks to the use of specialized connectors. (TheraTogs employ elastic straps that "Velcro back" onto the garment itself. The TheraSuit incorporates elastic bands. When the latter is used in conjunction with a Universal Exercise Unit, the wearer may be exposed to higher-load forces.)

Another distinction comes to mind, something to do with duration. Each of the primarily-compression-devices, along with TheraTogs, provides a prolonged force. They can be worn all day. A TheraSuit, on the other hand, is designed for shorter bursts of work.

So we have these devices that represent different strategies for influencing, altering and manipulating forces. To what ends? What purposes do their functionalities serve? What good can compression and biomechanical guidance do for kids with CP? 

See next post.

*To allow the skin to "breathe" could be considered a secondary function, and one that speaks broadly to comfort. (which, obviously, has to be taken into account)

**doesn't fit very neatly into this category, I realize 

Making Sense, Part D

By “give more shape to…a disordered product landscape” I mean look for ways to group and classify the on-body devices I've been referencing since Making Sense, Part A. 

Here’s a listing of said devices: 

1. Benik vest 
2. elastic therapeutic tape 
3. TheraSuit (a.k.a., PediaSuit and NeuroSuit)
4. compression sportswear 
5. SPIO (Stabilizing Pressure Input Orthosis)
6. TheraTogs
7. wearable robot 

What are these things? Can we make broad generalizations about their forms and functions?

One of the first things to jump out at me is the fact that these are orthoses, devices designed to “support or correct the function of a limb or the torso.” All but one of 'em, that is. The wearable robot, as conceived by Miguel Nicolelis, has orthotic properties but it's more of a neuroprosthetic device. I’m going to de-list it now for that reason.

Let’s focus, then, on the first six devices -- starting with their forms, i.e., their physical characteristics, and looking for common threads.

Threads.
Hmm...
Fabrics.

These are technical textiles. Maybe homing in on their MATERIAL makeup could help us make sense? Here are some key words and phrases associated with each: 

1. Benik vest: vented neoprene; Terry lined; thermoplastic or aluminum panels 
2. elastic therapeutic tape: cotton strip with adhesive back 
3. Therasuit: breathable; soft; dynamic; hooks and elastic connectors 
4. compression sportswear: form-fitting; made from spandex 
5. SPIO (Stabilizing Pressure Input Orthosis): Lycra; dynamic and multidirectional stretch 
6. TheraTogs: inner foam layer; Velcro sensitive outer layer for affixing elastic strapping

Generalizing: We’re talking about things that are breathable, that have elastic--stretchy--rebound--compression--characteristics, and that, in a couple of cases, have the capacity to have other stretchy things attached to them. 

What about SIZES and SHAPES? Over which areas are they applied?  

1. Benik vest: whole trunk/ torso 
2. elastic therapeutic tape : supplied in rolls and can be applied practically anywhere
3. Therasuit: can cover whole body if all components (e.g., optional arm attachments) are used 
4. compression sportswear: shorts, tights, t-shirts, socks, sleeves and /or underwear 
5. SPIO (Stabilizing Pressure Input Orthosis): up to full-body coverage
6. TheraTogs: also up to full-body coverage

I made an earlier connection between these devices and a pair of hands. Hands have their own material and size-and-shape properties. The fact, for example, that I used to be able to safely align my daughter’s trunk using both hands -- but now that she's twice as tall, I can't -- is a SIZE thing. The fact that my hands can make subtle, real-time adjustments relative to her place in space is a more of a MATERIAL thing.

What am I getting at? Orthotic devices are like hands, but they're different. They’re different than things we call "clothes". They’re different than body casts. They're different than tattoos and other stuff with which we adorn ourselves.

Form follows function. 

Trying to make sense of the functions these forms serve will be the subject of the next post.

Making Sense, Part C

SO:

We’ve got these nouns-with-modifiers: a Benik vest, elastic therapeutic tape, the so-called suit method, and so on. What, if anything, do these have significantly in common? 

For one, they’re proffered and promoted as helpful for kids with CP -- which is quite a claim. I should say right off the bat that the couple of PTs I know aren't as "gung ho" as the marketers of these products are about the promises they hold. Nor am I completely sold either, especially after reading some pretty un-scientific explanations as to how they work.

NEVERTHELESS:

I’m willing to suspend disbelief and be open to the possibility that one or more of the above products could make a difference. Why? Primarily due to something I've experienced firsthand while trying to help my own daughter. 

SPECIFICALLY: 

Some time ago I recognized that when I immobilize my daughter's shoulder girdle she’s able to consistently pick her head up. Fairly easily. I don’t know all the mechanisms involved* but I'd bet there's a basic biomechanical explanation along the lines that I must be supplying some (compensative) force that she hasn’t figured out yet how to supply on her own.

Shouldn't it follow, then, that these devices -- also external to and in contact with the body -- could do the same work as a pair of hands in helping a child move and/ or support herself? It seems worth looking into. And worth trying to give more shape to what strikes me as a disordered product landscape.

That to follow.

* I’m sure there are lots and lots of people who could explain. Any wise physiatrist, for example. Or the folks behind the Rifton Elbow Anchor…

Making Sense, Part B

Before I venture into things like if and how the previously mentioned (see Making Sense, Part A) devices and methods work, the promises they may or may not hold, etc., let's start with some definitions.

Note: What follows is based on stuff I was able to readily grab from the Web. I haven't critically reviewed it or made much effort to make it my own. Ergo you ought to look at these as provisional, i.e., tentative. At best. 

*  *  *  *  *

• Benik vest: a neoprene orthosis that's meant to provide upper trunk support (to help a child remain in a sitting position, for example, for an extended period of time) and proprioceptive input. Available with malleable aluminum stays or moldable thermoplastic panels for additional support and protection. [ www.benik.com ]

• Kinesiology tape (more generally known as elastic therapeutic tape): a cotton strip with an acrylic adhesive used for treating athletic injuries and a variety of physical disorders. For our purposes, the product is used therapeutically to facilitate underused muscles or to limit or encourage a specific motion at a joint.

• TheraSuit. NeuroSuit. PediaSuit: a breathable, soft, dynamic orthosis based on the Adeli Suit. Consists of a vest, shorts, knee pads and specially adapted shoes with hooks and elastic connectors that topographically mirror flexor and extensor muscles, trunk rotators and the lower limbs. The suit works as an elastic frame surrounding the body to hold it in proper physical alignment. It also serves to facilitate or inhibit certain movements, assist with the development of optimal posture, help with or supplement the restoration of proprioception, and provide resistance (to increase the strength of the patient).

• Compression sportswear: form-fitting garments usually worn by athletes. They may be shorts, tights, t-shirts, socks, sleeves or underwear and are often made from a spandex-type material. Among other things, these purportedly reduce muscle movement and vibration, and focus the direction of the muscle.

• SPIO (Stabilizing Pressure Input Orthosis): a dynamic bracing system made of a special Lycra blend material that provides a multi-directional stretch with a strong rebound factor. Uses patented compression ratios and design. SPIO is designed to assist stability and provide feedback through deep pressure and tactile stimulation. Advertised to improve functional movement possibilities, limb and body position sense, and general stability and balance.[ www.spioworks.com ]

• TheraTogs: "a live-in exo-muscular system". Made from a patented, proprietary material with an inner foam layer that grips the skin and underlying soft tissues, and a Velcro-sensitive outer layer to which clinicians can affix elastic strapping, a.k.a., the external muscle of the system. Typically worn under normal clothing, TheraTogs replicates successful manual sensorimotor training techniques and enables the wearer to engage in routine activities with improved joint alignment, all day long. [ www.theratogs.com ]

• Wearable robot: a neuroprosthetic device that will allow paralyzed patients to use a BMI (brain-machine interface) to control movements of a full-body exoskeleton. Motor signals will control actuators distributed across the joints of said exoskeleton. Force and stretch sensors distributed throughout the exoskeleton will generate a continuous stream of artificial touch and proprioceptive feedback signals to inform the patient's brain of the device's performance. As for the details of the silk-thin suit itself, I'm having a hard time finding any. I'll keep my eyes open.

*  *  *  *  *

There. We're makin' progress. Some pictures are probably in order soon.