Cerebral Palsy and Stem Cell “Therapy”. ABR position.
Danger: Hip X-Rays Interpretation Mistakes in Quadriplegic Cerebral Palsy

Cerebral Palsy – reverse or re-arrange?

Writing for this blog always puts me in a real dilemma – on the one hand, there are lots of things I really want to share with you because I believe that you are missing so much of important knowledge about Cerebral Palsy and on rights and wrongs in dealing with it; but on the other hand –I have to switch on the internal censor and ask a simple question: “With what I am eager to share –am I going to help and improve clarity for the families or is it going to add to the information overload?”

In other words – by pouring down all that information on you – am I doing you a service by giving clarity and making your life easier or am I doing you a disservice by adding to overwhelm and exposing you to more concerns and worries?

These internal dilemmas really bugged me  for the things that I have been busy with for the last couple of months. In the preparations to BioTensegrity meeting that took place in Munich few weeks ago – I made a dive into the engineering books on Tensegrity and the original works of Buckminster Fuller (the famous engineer-architect who coined the term “Tensegrity”) and found myself at awe with the depth of his insight… It is really amazing for the person who never really came close to the human body in any tangible sense to have so many remarkable foresights that really  lay a perfect framework for the correct interpretation of the Fascia Man…

The Bio-Tensegrity perspective alone is enough to come up with hours and hours of exciting stuff – of how it all ties in and gives a much deeper understanding of Cerebral Palsy and stages of progress and transformation… but then again? – Do you really have time and sufficient interest for all that? …  

I must admit that this weighing of the pros and contras turned out into the period of the relatively prolonged silence – it’s 2 months since I made the last post in this blog… So after a lot of such internal discussions – I decided to curb my enthusiasm for all things new and to try to focus on the ideas with greatest “de-clogging” value.

So I am going to try to stick to the more earthly matters and self-censor along the lines of what I think matters the most to you and how I can help you in reducing the information overload rather than adding to it...

I can’t promise that the text is going to be simple – but it is definitely going to be de-clogging: if you work your way through this – then you are really going to know what is your starting point in the quest of maximizing your child’s developmental potential.

So here it is –the question that has absolutely the greatest value and that defines the choice of a path: Cerebral Palsy – reverse or re-arrange?  

This question is so essential that it deserves some extra clarification.

1. How can one possibly dare to even use the very word “Reverse” in respect to Cerebral Palsy – doesn’t it sound like a dishonest and misleading “miracle cure” quest?

Well, that’s the key – we have to meaningfully distinguish between ‘brain-injury’ and ‘Cerebral Palsy’.

 Injury to the brain is indeed irreversible and there is unlikely anything to be done about that for foreseeable future.

However,Cerebral Palsydiagnosis refers to the disorder of posture and movement – not to the brain injury as such.

In practical reality of physical rehabilitation and therapies for kids with Cerebral Palsy the ‘arena’ where all the impacts are aimed at is the body (the musculoskeletal system) not the brain itself.

Therefore when talking about the reversibility vs. re-arrangement strategy for Cerebral Palsy – we discuss how we deal with the musculoskeletal system– do we search for the reversal of elementary fundamental negatives (spasticity, rigidity, muscular imbalance, fascial weakness etc) or do we accept those negatives as inherently irreversible and limit the therapies and exercises to the attempt of minimizing the troubles?

In other words, are we playing to win or are we playing to lose with the score that is ‘not too bad’?

Well, medical approaches are entirely limited to the paradigm of losing by respectable score http://blyum.typepad.com/on_abr_and_beyond/is-cerebral-palsy-in-need-for-the-new-approaches.html

Why? – There is a fundamental limiting belief – the sole reliance on neurology in the explanation of the elementary phenomena that form the movement challenges of a child with Cerebral Palsy – spasticity, ‘primitive reflexes’, rigidity etc.

All these phenomena (spasticity etc.) that are collectively labeled as Cerebral Palsy take place within the musculoskeletal system – but they are being explained exclusively via the damage to the brain.

As a result they are rigidly coupled with the brain injury, hence there is a perceived deadlock: it is impossible to reverse , for instance, the spasticity without the reversal of a brain injury… and since the reversal of brain injury is a pipe dream for now – so does any conversation about the reversal of spasticity, hence any self-respected professional should stay away from such statements...   

 I hope that you start seeing the gap that is missed by this medical logic: actual troubles of Cerebral Palsy  are local but the explanations are central.

Once we realize that – all we need to do is to ask a question: “Can we possibly de-couple the local ‘musculoskeletal’ troubles – such as spasticity, rigidity or abnormal movement reactions – from the issue of a brain injury, i.e. from the Central nervous system? How much can we do at the local level regardless of whether the Central ‘command’ headquarters are damaged or not? ”

This is the key breakthrough that is at the heart of ABR – everything else followed from it.

ABR Techniques evolved over the years into providing better tools of addressing the musculoskeletal system at the level of automatic response – but the key breakthrough originates from this approach – putting apart the issues of brain injury as the damage to central command within nervous system from the issues of the local response within the musculoskeletal system itself.

2. Re-arrangement strategies come in 2 distinct formats:

a) “favorable exchange rate of damages” – doing the limited local damage (surgery, Botox etc.)  under the pre-text and the intent of doing a lesser damage in order to prevent a larger one…

Once again I invite you to look beyond the soothing words like “relaxing the muscle with Botox” or “releasing the muscle by tendon lengthening” – these words are misleading since they hide the physical essence of such actions: inflicting damage.

Yes, it is believed by the advocates of these methods (doctors and surgeons) that these damages are done at favorable exchange rates – small damage for the sake of preventing larger one. However, these self-assuring words should not draw the attention away from the hard cold physical reality – damage, no matter how ‘small’ or how ‘beneficial’ is still a damage. It can’t ever be a source of the reversal.

b) “compensation” – attempt to engage the  undamaged musculoskeletal structures to do 2 stability/ movement jobs: their own plus part of the job of the affected ones.

This is a re-arrangement strategy that is behind the training protocols – whatever they are (Bobath, conductive education, patterning etc.)…

I am not going to discuss the details here in order to keep your focus clear – any training strategy is set within the limitations of the fundamental negatives that make Cerebral Palsy. Sometimes a child has more reserves for the compensation and then the functional outcome is better, sometimes – less and the achievements are minimal if any…

Both re-arrangement strategies of “favorable exchange rate of damages” and “compensation” – although very different have essential similarity – being locked within the elementary negatives, trying to mitigate the troubles caused by spasticity, rigidity, primitive and abnormal so-called “reflexes” but never really rising to a really big goal: reversibility.

In essence these are just different avenues of ‘losing with respectable score’

3. Does the ‘reverse the negatives’ strategy mean that it is going to bring the results that are instantly (in short-term perspective) better than the  ‘re-arrange’ strategy?

Well, fact is: early cars were crap in comparison to horse-drawn carriages. They had few advantages but tons of troubles as well. Early planes flew a couple of hundred meters only and were far from being reliable means of transportation.

That happens every time when something radically new emerges and has to compete with established mature technology that has been polished over the long years in use. For a while – and that “while” can span a couple of  decades, – the glitches of the radically new technology provide the skeptics with a lot of ammunition for criticism pointing out the flaws and shortcomings of what they call “new fads”… However, at the end the new technology that sets more ambitious goals always prevails…

 And I am the first to admit that ABR has not been free of those challenges. Every year as I look back – I feel somewhat sad and disappointed with myself for not figuring certain things out much earlier. That’s an unfortunate price to pay – and I fully realize that a lot of families who started ABR over the last 10 years found enough obstacles and negatives to stop and to turn their search elsewhere.

ABR today is a lot more user-friendly and probably 5-10 times more efficient than it was 1o years back – but still there are tons of things to improve.

However, what I really want to pass on to you is the understanding of the biggest question: Are you aiming for reversal and prepared  to stick for the long-term transformation or are you looking for a lucky shot in the re-arrangement?

The following video – is an illustration of these ideas in a practical way.

I am intentionally using the case of a relatively milder child after just 6 months of ABR work done at 5-7 hours a week – the very minimum.

Together that makes 200-300h in total. My goal is very simple – to illustrate that even as little as 200-300 h of ABR work is enough to show that the structural transformation of reversibility type is indeed taking place as a result of ABR work.

There are lots of “yes, but… “ sub-clauses – “When is it going to reach the legs?” “How long do we need to work overall?” Etc.

Frankly, I can’t answer these questions – nor do I want to give you any false sense of “ease”.

Even when you get a tool of elementary reversibility of the Cerebral Palsy ‘building blocks’ – still one should remember that there literally 100s of muscles and joints that are affected by profound deficit of strength and severe imbalance and to put all of those in order is a humongous task.

On the other hand, I personally believe that it is better to do some of the things right then do everything wrong. I’ll take a slow and challenging journey in the right direction over the easy journey in the wrong direction any time…

That’s a philosophy behind ABR and I hope that I’ve managed to make this clear.

My goal is not to sway you towards “yes” – ABR is great!” – but to distill things into clarity , to help you to sort through the confusion and information overwhelm by bringing out the really essential and high value questions.

Decision and specific choice is yours – whatever suits your idea of the ‘right way’ – but I hope that I can help you by making clear that fundamental priority questions that you need to answer for yourself and  for your child.