Rose-Would-Be-Twenty Rant

Okay. Here’s a little o’ what I mean when I assert that the Net is a downright mess:

The low glycemic index treatment (LGIT) is a dietary approach to treating seizures. I’ve come to think of it as an interesting-to-promising option. 

It'd been awhile since I’d last looked into it online (What's the latest? Is there cause to be more or less interested in exploring it for my daughter?) so I headed, virtually, to the MassGeneral Hospital for Children's Pediatric Epilepsy Program, home to Dr. Elizabeth Thiele and Heidi Pfeifer, co-developers of LGIT. 

To my dissatisfaction, there was no new news to be had. Not only was there no new news, on closer inspection I noticed that the content there "was last reviewed on November 20, 2006.” (This is a gorgeous and informative site, by the way, a production of WGBH [Boston public broadcasting].)  


2006! 

The site contains a section on seizure treatments that features a video about a fourteen year-old named Rose and her successful experience with LGIT. Sure feels outdated when it dawns on you that that little girl (it’s hoped) would be twenty now. Anyone think about following up on her story? Is there nothing the-hospital-as-presumptive-authority-on-the-subject could do to let me know whether or not it’s still in the LGIT business? Throw a guy a link, maybe? 

I know for a fact the aforementioned dynamic duo is still actively researching LGIT. That same other day, I came across an abstract entitled, “Low glycemic index treatment for seizures in Angelman syndrome,” which appears in the July 10, 2012 issue of the journal, Epilepsia. 

The results of their latest work? Encouraging. They suggest that LGIT is a promising treatment option…

But: not without qualification. The kids who were studied have Angelman syndrome. My daughter does not. So, what does this mean for her? Are there broader implications or applications? Where's the research heading? Did Harvard's recent (BAD) protein molecule breakthrough figure in in any way? 

Getting my questions answered is never half as easy as I think it should be. 

IS IT UNREASONABLE of me to expect to be able to find a decent answer to the question “What’s the latest on LGIT?” Or, similarly, to “What’s the current thinking surrounding intensive therapy?” (On my efforts to answer that -- and on my underwhelming findings -- see My Kind of IT: Continued.) Where do things stand with regard to aquatic therapy? The only thing I’ve ever found of substance is a benumbing Best Evidence Statement (BES[t]) put out by Cincinnati Children's Hospital over two-and-a-half years ago.

Is this the BES[t] we can do? 

What it'll likely take in order for me to connect with know-how -- pick any of the three approaches I just referenced -- I'll be able to apply directly to my daughter’s situation? Who knows. I’ll make some calls. I’ll spend hours trying to track down the people who used to be involved, hoping they’re still where they were and still in the same line o' work. I’ll try to figure out if this or that program is still being funded, or if research is ongoing…

What is this?

Well, aside from disheartening, it's: "always something." And patients and caregivers are always the last to know. 

What is this? 

Maybe it's time to realize the Net’s still a far cry from being as patient friendly as one would hope; time to spend less time online. Maybe it's time to rethink the mix of social tools we're choosing and using. Maybe it's time to try and do something to help make the Net a better place for knowledge.

I'm not sure.

A Patient-Pull Model

“I’m going to paint the picture of how we can go from a doctor-push model to a patient-pull model. It will work with any health-care system in the world, empowering patients to take much more control over their health outcomes.”

*  *  *  *  *

In Pull: The Power of the Semantic Web to Transform Your Business, David Siegel makes the case that doctors are at the front and center of our current health-care system, but that the balance of power could and should be shifted to the patient. While I don't ever think of her as the latter, that's my child he's referring to. Or maybe yours. 

Patients are already gaining traction. They're (we're) self-diagnosing and self-prescribing. They're (we're) shifting from being mere consumers to being providers of health-care information. Blogs, Wikipedia contributions, online articles, comments, online communities, anecdotes, and more are all playing a part. But the development of a truly smart network, one in which a patient is able to draw whatever knowledge resources she needs directly to her, will require a new Web infrastructure based on new principles and mechanisms --

Enter stage right Mr. Siegel's (and others') semantic web. 

Here’s a link to Wikipedia’s semantic web page. It’s a little futuristic, a little sci-fi, but worth bringing up, I think. Why? Because there may well be things we can do now to help inch our way closer to a smarter, more productive Net. Smarter and more productive are better for the kids we're trying to help.

A COUPLE OF KEY (SEMANTIC WEB) INGREDIENTS

1. The Personal Data Locker 

“Let’s suppose,” I say, “that every patient now has an online personal data locker. All the patient’s health history and records are there. The patient has plenty of privacy…(and) he’s actively involved in the process of learning about his health, record keeping, and understanding his options.”

*  *  *  *  *

The personal data locker will store all of your information in the cloud. It’ll replace your desktop computer. It’ll act as the brains behind your phone and the rest of the smart objects in your life. As it relates to things medical, our sex, weight, BMI, blood type, ethnicity, family history, blood tests, and other data (that doctors already use) will be stored therein. Fairly soon, many people will add their entire genetic code and the codes of any known disease agents in their bodies. 

All this information, labeled using standardized formats, i.e., specified semantically, becomes the basis for pulling knowledge resources to you. Our software agents will be able to look for products and services online or the search engines will make matches and bring us the results. Writes Siegel, “I only set my wants up once and turn them off when I find what I’m looking for (or when it finds me). The more you use your data locker, the more it extends your eyes and ears to places you never would have noticed, it’s always under your control, acting as your personal helper, not your alter ego.”

2. Power Tagging

“We will use a variety of automated tools, sensors, other people, and special-purpose devices that let us power-tag our way through our days…”

*  *  *  *  *

Power tagging is recording real-time, real-world facts and events using common rules and vocabularies in a format that means the same thing to all systems. It helps you keep your semantic web of information up to date and working for all the people around you. If and when everyone is tagging, systems will "know" what’s happening in the real world and people will be able to pull the information through.

Applied to health care, the more data we collect in standard formats, the better we can help researchers find the next treatment. Once patients are power tagging, they will form their own research communities, reach out to drug and device companies, and pull new products through according to their needs. Patients will create online ecosystems of patient data that researchers can filter for trends, patterns, and new insights…

QUESTIONS, QUESTIONS

General: 

Even though the web as we know it has not (yet?) evolved into the semantic web others envision, could personal data lockers and power tagging be implemented today? If not, could we put the underlying principles to use? How might doing so begin to pay off for my daughter? 

Particular: 

I'm thinking ahead to the kinds of medical data that might reside in the personal data locker of a little girl with CP. What specific instruments and information sources would be pertinent? Her IHP? (Individual Habilitation Plan) Her psychological and physical exam records? (including chart reviews; observations; parent interviews; Bayley Scales of Infant and Toddler Development; Cognitive, Language & Motor Scales; caregiver rating forms)  

I was just all over the web investigating various orthotic devices. (See my Making Sense series of posts.) How might an exercise like that be improved once we start pulling information?

Throw Yourself A Curve

It’s OKAY that you spent the last two months of your life hooked on The Bachelorette. What’s done is done. Now, though, for some reality TV really worth watching, I want to recommend something completely different:

PBS’s Charlie Rose: The Brain Series. Wherein Charlie Rose, Nobel laureate Eric R. Kandel, and a revolving cast of (typically) three or four other panelists explore different aspects of the brain. Amongst the panelists are some of the finest scientists going. Luckily for viewers, these men and women are also ENTHUSIASTIC -- pretty much across the board -- and CAREFUL AS CAN BE to make what's esoteric c-o-m-p-r-e-h-e-n-s-i-b-l-e to regular people. 

I’ve found the episodes to this point to be riveting. And never quite long enough. Cerebral palsy has hardly been mentioned, but learning about the brain-boggling advances we’re making in our efforts to understand "what’s going on inside our heads" has still left me feeling inspired. Every time.

All twenty-three (23) of the approximately one-hour-long previous episodes are available online at: http://www.charlierose.com/view/collection/10702. Episodes are also available as DVDs.

It's Knowledge Work You're Doing

In the opinion of David Weinberger, author of Too Big To Know and “one of the most important thinkers of the digital age*,” we ain’t there yet. The networking of knowledge is not yet the blessing it might someday be, and we'll need to do more, he says, to help the Net live up to its potential. (as the place for people to go to get smarter faster and to [in turn] get more productive) As it relates to what I'm most concerned about: There's no reason the Net couldn't be a much better place for empowering and enabling the disabled.

Here are some actions people of all stripes can take...while online, starting now...to become better knowledge workers and help bring about a smarter Net. These represent three of Mr. Weinberger's five parting suggestions.

LINK

“More links, more links.” Links encourage and help others to chase their interests. Links enable us to be transparent about how we reached a conclusion. Links increase the authority of a work. Links promote independent thinking.

LABEL

(I get a kick out of this:) In Weinberger’s words, “Most of what’s posted will be crap. So, we need ways to evaluate and filter, which can be especially difficult since what is crap for one effort may be gold for another.”

Ironically enough, the antidote to the crappy-information overload problem is to provide information about the information we contribute. Metadata (think "labels", like the ones that appear at the bottom of this post) enables your information to be found more easily, i.e., it makes your information reusable. If and when we can get to the point where we’re labeling all of our information using standardized formats, we’ll be on our way to realizing the vision of the semantic web. Computers would then be able to do more of our filtering for us and the Net would spit out a lot more knowledge than was put into it. We'd have ourselves a truly smart network.

LEARN

For the Net to be all it can be, we'll all need to learn how to: 

Operate the dang thing. (the Net and its component parts, that is) Really just a matter of clicking buttons. Simple as ABC. 

Evaluate knowledge claims. The ones others make, and the ones we make ourselves. Critical thinking skills to shore up? Being able to "distinguish lying crap from well-documented conclusions." Becoming more open to new ideas. Learning how to participate in multi-way, multi-cultural conversations. 

Learn to love difference. We need to "push past our urge to stick with people like us." Easier said than done, but the author sees in the Net both an opportunity ("to encounter and interact with that which is different") and a model ("we can understand ourselves as a Web page interpenetrated with links, connected to a world that takes us up and makes us interesting.”).

All o' this is applicable when we blog, leave comments, contribute to Wikipedia, rate  products…

*per Daniel Pink

My Kind of IT: Continued

Back to drilling down into this 2004 passage: “These studies show that a period of intensive therapy (IT) in ambulatory children with cerebral palsy can lead to improvement in a number of disabilities. However, they did not demonstrate that use of the Adeli Suit was helpful. Any effect is likely to be minor.”...

*  *  *  *  *

It’s my impression that "intensive therapy" (IT) has become almost synonymous with the suit method, which is characterizable by its use of an Adeli-type suit and Universal Exercise Unit (UEU; also known as a "spider cage"). My views, therefore, about whether or not IT might benefit my daughter are informed largely by evidence put forth by the various suit therapy clinics* out there. 

In their efforts to get me to buy in, these places seem to be employing more-or-less the same “tools of persuasion”:

A big lead-in: “The use of intensive suit therapy is spreading like wildfire as all interested parties are seeing out-standing, if not a-stounding, results!”  

Anecdotes /testimonials: success stories about kids who’ve gone through the therapy

Videos: showing one or more suit-equipped kids in action, in the UEU

Theories: statements explaining how intensive therapy is supposed to work 

Lists of purported benefits: exhaustive lists (exhausting to read) of what IT will: fix, improve, normalize, correct, increase, decrease, or promote 

Studies of various sorts: see next

I've been on the lookout for more studies**. Of the relatively few I've come across, the reviews have been mixed. Some conclude that suit therapy works and helps (e.g., Effect of Modified Suit Therapy in Spastic Diplegic Cerebral Palsy, India, 2010). One other concludes that “further investigation is needed of the suit itself, and intensive therapy programs in children with CP” (Bailes; 2011 ). Others contend that there’s not enough evidence to support routine use of the suit method. (e.g., Taylor; 2006) 

Nothing about the whole lot of 'em really stands out to me; nothing touches my memory. The thought that “that’s powerful evidence” one way or the other has never crossed my mind. If anything, there's the nagging concern that the rosiest reports seem always to stem from therapists with vested interests in the method's success.

I could see how designing a suit therapy study would be challenging. Maybe it'll turn out anecdotes are the best we can hope for? Maybe studies aren't what we need? Where is all this heading? I don’t have a clue.

So, for now, I keep falling back on two things:

• I find the theories (regarding how the method should work) to be plausible. 

• Suit-method centers, or clinics, are now commonplace, if not ubiquitous.  You find them within UCP facilities, private therapy clinics, and ICF /IIDs (Intermediate Care Facilities for Individuals with Intellectual Disabilities). I know of five (5) within a few hours of me in Ohio. See details below.

The method is now finding a place in hospital settings, too. We have Cincinnati Children’s Hospital Medical Center offering it here. I just read about All Children’s Hospital in St. Petersburg, FL... 

Wouldn't a hospital clinic have to have good, research-based reasons for giving suit therapy a go?

*  *  *  *  *

THINGS ASTERISK-ED

*What I know about most of these clinics comes primarily from their web sites. I haven’t spent as much time on their Facebook pages. It could easily be that they’re putting more of their communications resources there.

**If you know of other noteworthy intensive therapy research, I'd love to hear about it.

*** Therasuit LLC claims that "since 2002, we have trained thousands of therapists and helped create hundreds of intensive therapy centers in the United States.” Disappointingly, but not surprisingly, when I clicked on a link for a listing of those clinics, I was met with the all-too-familiar: “File or directory not found.”

SOME IT CLINICS IN OHIO

Leap Beyond Therapy / Milford, OH / www.leapbeyondtherapy.com

AbiliKids / Brunswick, OH / www.abilikids.com 

Achievement Centers for Children / Highland Hills, OH / www.achievementcenters.org 

UCP of Greater Cleveland / Cleveland, OH / www.ucpcleveland.org

Hattie Larlham Center for Children with Disabilities / Mantua, OH / www.hattielarlham.org

Getting Smarter Faster

We thus do not yet have any good idea 

of what cannot be done by connected humans 

when working at the scale of the Net.*

Sure would be nice to be able to broadcast to the world “Here’s a description of my precious little girl. She wants to live a life without limits.** We’re looking for knowledge and related resources we can use.” -- and to have what she needs come streamin’ in: automatically, continuously, and right on target.

What kinds of knowledge and resources? Well, answers to all the questions I have in mind to ask; ideas and information that hadn't previously occurred to me to look for; opportunities to collaborate with others to create new knowledge...

I want my daughter to be an epicenter for these heady things. 

I’ve read enough books filled with enough accounts of effective, real-world "pulling" to believe she could be. Here's a wee bit about three (3) such books worth noting as they relate to our discussion:

• Pull: The Power of the Semantic Web to Transform Your Business [2009] by David Siegel. The so-called semantic web is “a new way of packaging information to make it much more useful and reusable.” It represents a vision (at this point) of what the Net could become, i.e., an extremely powerful tool for getting what we need when we need it.

• Too Big To Know [2011] by David Weinberger. Everything you ever wanted to know about knowledge in our new networked world. Among many other things pull-related, Mr. Weinberger writes thoughtfully about strategies for filtering knowledge (forward) in order to successfully keep on keepin’ on. 

• The Power of Pull [2010] by John Hagel, John Seely Brown and Lang Davison. About ways individuals, teams and other groups are using pull techniques to their advantage. I’m most interested in what they have to say about "shaping strategies," which have to do with motivating big groups of people and institutions to work together to solve problems.

The notion that we can use the Net to perform better -- i.e., be more efficient, learn faster, and have greater impact -- runs through each book. Hagel, Brown and Davison, in particular, talk in terms of “increasing the rate at which we can improve performance.”

How might "performance" enter in when we're talking about CP? In countless ways, I'm sure, but what matters most is how well our kids are performing.

I wonder: 

• Can we use the Net to help more kids with CP achieve more than anyone's ever dreamed possible?

• How quickly can we get to the point where we’re laughing at the very things that are limiting our kids today? 

• Could it be that what holds our kids back the most are our limited capacities as adults to learn and imagine better ways of doing things?

*from Too Big To Know
** "For people with a spectrum of disabilities, life should be without limits" comes from United Cerebral Palsy (UCP).

 

Push Me Pull You

This is: 

• The BEST OF TIMES to be a parent of a child with CP because there’s more KNOW-HOW & KNOW-WHAT out there than ever before, and because we have access, potentially, electronically, to just about all of it. “There are many voices available to us,” I read somewhere. May be a bit of an understatement.

This is also:

• The WORST OF TIMES to be a parent who wants to get SMARTER because the WORLD WIDE NET is a downright mess. Anyone with anything to say about CP is on it. Every one of those anyones -- me included -- just keeps adding to the search results stew. MAKING ONE'S WAY THROUGH TO THE GOOD STUFF CAN BE FRUSTRATING.

*  *  *  *  *

I'm exaggerating about the mess. And, I also know that I’d need to be much more specific (about what I see as being messy) to be taken seriously. I won’t try to remedy that now.

I will put it out there, though, that I THINK IT COULD AND SHOULD BE EASIER to get to the good stuff, and that the online experience -- instead of being about “pulling teeth” -- could and should be about: 

( J U S T )  P U L L I N G. 

Pulling, or just "pull", has broadly to do with getting the information we need when we need it. It has to do with causing the good stuff to come to you rather than you having to go to it.

I have a strong sense that pull approaches to harnessing knowledge flows can help us, individually and collectively, to get smarter faster. We within the CP sphere owe it to our kids to explore how. 

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