Saturday, October 13, 2012

Cerebral Palsy Guidebook: Symptomatic or Problematic?

The two previous "Guidebook" post on the blog have received quite a few reads...just over 1000 reads in about 3 weeks.  I have decided to add an "insert" here on the Facebook page as a complement to the first "Developmental VS Choronological" entry.  The essential framework of this note is identical...presenting a given perspective on the daily challenges associated with CP and how they impact the fundamental decision making process within the family unit.

 Although they may seem mutually exclusive, the reality is that symptomatic and problematic are intimately related.  Within the CP landscape, they are essentially "blurred" together and it seems that everything is defined as problematic.  It is important to make very clear distinctions between them, however...because this distinction will ultimately have a direct impact on how these challenges are received (anxiety, panic, worry) and, more importantly, how they are addressed.  In order to make this distinction, I have chosen an analogy that is likely to be the most "universal"...the famous "Check Engine" light.

As simple as it sounds, the check engine light is an indicator of more profound problems within the engine itself.  Even if the engine seems to be running smoothly, the "check engine" light may blink on to signal that some intervention is needed in the immediate future and that some form of assessment is required.  As many of you have already experienced, as soon as this light comes on, you immediately get a typical "what now?"  reaction (which may have a few expletives added to the front).  In alot of cases, myself included, the light itself becomes a nuisance...and therefore the immediate problem.  The reality is that it can be realistically considered as a "symptom" of the internal engine problem...therefore, the immediate (and instinctive) reaction is often directed at the symptomatic manifestation as opposed to the more fundamental under-lying issue.

This analogy translates quite effectively into the CP landscape.  There are multiple "check engine" lights going on and off (muscular tension, seizure activity, digestive dysfunction, joint dysfunction, immune system deficit, etc..) that instinctively grab almost 100% of the attention.  All of these challenges are indeed difficult in their own right...this is not to say that they are any less important or challenging.  The main message of this note is to understand the relationship between symptomatic and problematic.  To be precise, the alarming majority of strategies are centered purely on symptomatic resolution.  Using our analogy, this is the equivalent of "turning the check engine lights off".  Having had this discussion many times in the past, I am acutely aware that this distinction may still be somewhat elusive...therefore I will be more explicit:

1.  Symptoms are typically the most visible...Problems are essentially "hidden".  This is an important fundamental understanding to integrate.  The most immediate, obvious, and intuitive challenges are typically those that are easy to spot and identify (chaotic movement, convulsions, fever, feeding dysfunction, spastic muscles, etc.).  Although often quite difficult and challenging to manage, they stem from a general subset of systemic problems that "lie underneath the surface".

2. Symptoms have the potential for some immediate short-term relief, while Problems require a more comprehensive and long-term strategy Another important reality is that the symptomatic challenges have a relatively well-established list of tools for their immediate resolve.  Whether it is in the form of pharmaceuticals, manual techniques, or nutrition...the current "menu" is quite extensive.  In addition, the itemson this "symptomatic menu" have the most appeal: "immediate relief of...."   The resolution "menu" is relatively non-existent and falls short of any true appeal simply due to the idea that it is long-term and the progress is evaluated over months and years as opposed to days and weeks.

3.  Problematic issues are the most detrimental to overall health, systemic homeostasis, and general quality of life.  Although this statement could realistically be debated, when you accurately identify the problematic issues it becomes somewhat less obscure as to the true root of most challenges.  They can be outlined in this general format:

a. Profound deficiency in the connective tissue quality and integrity----- leading to joint dysfunction and irregular muscular activation
b. Reduction in the quality of interstitial fluid flow----leading to immune system dysfunction, poor tissue (skin) quality, and spastic conditions
c. Insufficient lymphatic function ---- leading to higher systemic sensitivity and susceptibility to viral / bacterial infection
d. Profound insufficiency in CSF flow --- leading to reduction in brain metabolism, poor processing potential of the brain, poor nutritional maintenance of the spinal cord, electrolyte dysfunction within the brain, convulsions

This of a basic description, of course...the list is actually alot more comprehensive and complex.  However the main message should be quite obvious.  The underlying, hidden, and fundamental problems are the true source of the more obvious and external symptomatic manifestations. 

In summary, the most successful rehabilitative strategies take both  into consideration and designate selective interventions to address the entire organism.  Refering back to the original analogy, there is a fundamental understanding that should be well integrated into youe mental "hard-drive":  There is no need to WAIT until the check engine light comes on before you act"The unfortunate reality is that most are not given this option...nor is it generally even considered.  This is a result of the Pathogenetic paradigm that currently overwhelms the thought process and therefore manifests in most treatment strategies.  The pathogenetic paradigm is also considered as the "disease fighting"  paradigm and can be equated with the idea of waiting until the engine light comes on.  This is quite common and has become almost expected as standard operating procedure:  "the x-ray shows the hip is at 20 degrees, but when/if it gets to 30 we will have to consider surgery...the spine is curved now at 33 degrees, but when it gets to 43 degress, you will need a corset...the EEG shows some irregular activity, but it isnt too bad at the moment."  Although the pathogenetic approach is an essential component of any successful strategy, it shouldnt be the singular focus.  There is also a Salutogenetic Paradigm that exists as well...which essentially is the promotion of health and maintenance of systemic homeostasis.  In other words, during periods of relative health and stability there should be some active intervention in place to address the underlying systemic deficits...or "implementing a regular maintenance program so that the engine light doesnt come on at all".  As with the car analogy, the human organism is dependant an adequate fluid flow, efficient thermoregulation, and regular structural assessment and evaluation.

Although the human organism is exponentially more complex, the general philosophy and mindset applies for both.  The symptomatic challenges are addressed within the pathogenetic paradigm for immediate resolve, while the consistent implementation of salutogenetic strategies address the underlying problematic roots.  The most recent research and investigation demonstrates undeniable and significant positive results in progress when salutogenetic interventions are adopted...and therefore should become an integrated part of the rehabilitative protocol.


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