On ABR and beyond...

The truth About The Walking for Parents of Children with Cerebral Palsy PART 2:The Key Dilemmas_

Well, the summer is officially over -- so hopefully you had some nice vacations and developed some cravings for the transformational knowledge.

Today's post is probably one of the most important ones that you'll ever get from me -- I'd dare to say that it should really bring the transformation of your worldview -- of the way that you think about the most specifically human of all human movements -- the walking.

I invite you to challenge one of our most natural and the most intuitively ingrained beliefs -- "achieving better walking requires practicing ... the walking"... It seems so self-evident that even without the instruction from a physical therapist the parents of children with cerebral palsy happily expose their kids to do the "walking" celebrating the contacts that a child has with the ground with cheers. It seems so safe and rewarding...

I invite you to re-think this by first taking it to a bit of an extreme: imagine that you wanted to "teach" your child to fly by throwing him or her out of the window with the enthusiastic advice: "Flap your hands, darling, and you'll soar!" -- Sounds ridiculous, right?

Well, putting a quadriplegic child with cerebral palsy through "walking" is equally ridiculous and in the long run -- more damaging. Why? -- because there is no obvious harm that one would see right away. On opposite -- it feels "right": "Wow, we are making progress; we should do more of this.."

This video is the invitation for you to be smarter than those naive thoughts and actions. Walking is a crowning achievement of the human locomotion -- the pinnacle that requires dozens and dozens of elements to be in place in order for the contact with the ground made via the moving feet to be beneficial virtuous cycle. Otherwise -- you are enthusiastically distorting your child's body being enticed by loud cheers and "expert" advice of physical therapists.

Please, find those 40 minutes of uninterrupted attention and study this video intently. There are 11 points that are discussed --each lasting just a few minutes and they are relatively richly illustrated. So even with my monotonous voice you can surely manage to keep yourself alert.

At the same time this video is an example of the intelligent due diligence approach to whatever actions and therapies you lead your child into. THINK! Even the most intuitive therapies for cerebral palsy and brain injury are loaded with hidden dilemmas that you need to be aware of if you really want to be helping your child. Otherwise you'd be repeating the fate of thousands of other children affected by quadriplegia who ended up having their bodies profoundly distorted by dumb "functional training" and the walking in particular.

I hope that this video will raise your immunity to "intuitive claims" of people who lure and seduce you into the BS of "functional training" by talking about "teaching the brain" or "re-connecting the neural pathways"... This is the complete BS and your kids deserve better than the naive dumbness..

Be smart and be inquisitive -- don't let the 'intuitive' and 'self-evident' fool you.

Truth About Walking_Video 2_Key Dilemmas_YT HD from ABR Central on Vimeo.

I apologise for the use of the language that is stronger than usual -- but whenever I think of all those kids with quadriplegic cerebral palsy who were led into the horrific distortions and suffering by their well-wishing parents -- it is really difficult to keep the neutral tone.

Please leave your comments -- don't hold it. This is a polarizing video -- it's not one of those 'informational' ones where you can just make a little mental note and proceed further. I invite you to get engaged and argumentative. If you feel that my argument is too weak -- say it, articulate your position -- I'll be absolutely happy to push this issue as far as it takes in order to make sure that it "clicks".

Thanks a lot

Hip Subluxation in Quadriplegic Cerebral Palsy_Part 8_Finer nuances of alignment

Dear friends,

I promised further reports from Fascia Congress 3 and working on them quite closely. Since there were  restrictions on filming and picture taking -- I had to rely heavily on notes and audio -- which make the entire process of getting to through the material far from fast.

My current plan is to deliver the next substantial report video on Sunday -- meanwhile, please have a look at another installation in the "Hip Subluxation in Quadriplegic Cerebral Palsy" series. I think this would be number 8 and it covers the rather fine aspects of evaluating the femur head insertion.

Unfortunately, once again I have to draw your attention to the fact that you are really facing a major bias in the way that orthopaedic profession interprets the X-rays of Cerebral Palsy kids.

According to the statement of one of the leading orthopaedic surgeons specializing in Cerebral Plays who was the most prominent figure at the International Cerebral Palsy Congress in 2009 in Sydney -- "Maybe 30% of the mildest (GMFCS Level 1) kids with Cerebral Palsy are not going to require hip surgery..."...

With such a mindset -- it is not  a surprise that there is a heavy bias for any pro-surgery finding and equally heavy neglect of any facts that do not fit the "pre-designed path".

However, in this video I am showing how most simple geometrical tools provide you with valuable insights and allow seeing the important positive transformations.

It's relatively short and straightforward  --so it won't take you much time to pick up this nugget.

As always - please leave comments and Facebook "likes" to this video (IF you like it, obviously) as well as to the previous video with the report from Fascia Congress 3. I am going to make a separate post answering all the questions in details.

Cheers..

 

9 Valuable Lessons for Cerebral Palsy out of a Single Incident of a Broken Leg

This post might seem as a departure from matters of Cerebral Palsy – but it is definitely – not.

On opposite, I hope that you can see this as the opportunity to understand the fundamentals of rehabilitation domain much better once you have the exposure to the other side of the spectrum – how the surgery and physical therapy handle ‘regular’ fractured bones.

It is really important for you to keep in mind that – all the concepts, diagnostic criteria, best practices and tools of both orthopedic surgery and physical rehabilitation were forged and tested in the field of dealing with fractures, bone and joint displacements, muscle tears etc.

For instance I mentioned a number of times before – that deeply ingrained belief of physical therapy in the benefits of stretching and in the ability of a therapist to restore the proper mobility via stretching – stems from the practices of dealing with muscle contractures that follow the immobilization.

That’s where stretching works the best and every experienced physical therapist has an entire collection of ‘victories’ over contractures behind his or her belt. They witnessed with their own eyes how a severely restricted leg mobility consistently gets improved via stretching until full recovery within weeks.

That’s the experience and the expectation they transfer into the Cerebral Palsy field including quadriplegic Cerebral Palsy. What happens then? – First, they see some 10-15-20% of range increase – they celebrate it and reinforce their believe in being on the right course. Second, when the range increase comes to a halt – they start blaming it on the spasticity and brain injury.

Therefore, when a friend of my son had his lower leg bones fractured in the go-cart accident – I waited for few weeks until he got out of pains and decided to seize this opportunity to illustrate the essential differences between the orthopedic handling, physical therapy, rehabilitation and  recovery of a healthy person after a typical injury to a musculoskeletal system – in contrast to the most important specifics of the challenges experienced by Cerebral Palsy kids especially in quadriplegic condition.

I hope that you are going to find this being a valuable perspective that will improve your understanding of the priorities for your own child and have a clearer focus of where you need to put the most of your efforts.

P.S. As always – please let me know what you think and whether this perspective is helpful. Don’t forget the ‘Like’ button as well.

Painful Lessons... Part 1

Dear Friends,

My apologies -- you haven’t heard anything from me on this blog for the last 3 weeks.

Reason?

I’ve been out of intellectual shape since Feb 4^th and it was only yesterday’s afternoon that I finally felt that my head was back to the levels of performance that I am used to and satisfied with.

What happened?

I’ve been doing the European assessments day-in day-out continuously for 2 ½ weeks over a nasty cold and it took me another week of dull existence when I was unable to generate anything written whatsoever before I finally got back to a decent intellectual form.

Short note on the side:

No, Europeans are not “privileged” to have this once a year live assessment; and Americans and Australians, i.e. mother tongue English speakers, are not “disadvantaged” to be the first ones to experience the new format of ABR, which relies on a distant support and especially on comparison reports. The simple necessity of maintaining such a once a year assessment in Europe stems from its’ multilingual nature, where we do not have the resources to have information and explanations converted into French, German, Danish, Dutch, Spanish languages etc separately. Most of the European ABR families do communicate in English but it’s obviously not their mother tongue, which makes deep understanding difficult when it comes to specific anatomical terminology and more complex ABR concepts. So until today the only solution for a number of families whose English is not so great is to have direct pointing through the live demonstration as the main tool of explanation– something along the lines: “This muscle [pointing with a finger and avoiding naming] should get released; this bone [another finger pointing] has to drift here; doing a movement in this place [more pointing] is a wrong place etc.”

I maintain what I said many times before: I do think that such a solution is a temporary crutch – the learning value of live assessment is lower than the learning value of a properly done comparison reports and consistent referral to a knowledge base.

Conclusions?

Far reaching (at least for myself)…

First of all, I have to acknowledge and face a simple fact – my own shape is deteriorating.

I feel like I am half or maybe a ¾ of ‘a man I used to be’ even 3-4 years back.

For a while I tried to fool myself, looking at the episodes like this as aberrations and finding excuses but if I put together this dismal February shape with my complete deflation in November that followed the 5 week- long tour in the Fall 2009– previous leg of European assessments; teaching visit to Montreal for ABR Canada trainers; and 2 long conferences in Netherlands – I have to acknowledge facts, however unflattering they are. One might say that being out of form for 2 weeks after 5 weeks of non-stop intense action through changing climates, places and time zones is not too bad ... True, I guess by ‘normal’ standards – however, everything is relative, – I used to be able to do even more than that with much greater ease and with only minor dips in form afterwards.

Everything that I have done in the past has been a product of a personal overdrive based on a firm conviction that ABR is my mission and duty and I can’t allow myself any downtime or slack. I’ve always rested just enough to be able to work – any further rest or detour from working commitments brought an immense remorse about the wasted time.

That overdrive has been my operating mode ever since I joined my father back in 1993. But I realize that this mode is unlikely to work in the future.

Now I have to face a new reality – I am punctured a lot easier; my intellectual form dips lower when I am punctured physically; and it takes more time to recover back to intellectual shape that I am internally comfortable with.

continue reading by clicking

Cerebral Palsy Peacenick practicalities: taming the Standing Frame

Jackie Chan dream did not help …

I tried to write some quick and short comments to the Part 2 of “Cerebral Palsy Peacenick Toolbox: How to use the Standing Frame correctly” – and it did not work…

I tried for a few days but whatever I began writing turned out into a long manuscript with tons of facets and angles – nothing short and punchy Jackie Chan style…

So I have no other option left but to be descriptive.

Part 2 “Cerebral Palsy Peacenick Toolbox: How to use the Standing Frame correctly” discusses:

·       What negatives effects occur when the placement of spastic individual into the standing frame is done in too ‘hawkish’ way;

·       How the negatives accentuate when the angle of the standing frame is adjusted following simplistic ‘the more vertical the better’ mindset;

·       How to get the 1^st Win and  adjust the preliminary position of fixing a child with cerebral palsy in the frame – so that a child enjoys the social, emotional and sensory benefits with minimal or none of ‘biomechanical tax’.

·       How to get the 2^nd Win and to find the optimal angle that minimizes the pivotal overload factor and maximizes the positive axial impact of ground reaction force.

·       How to get a Bonus – 3^rd Win – shall I keep some suspense? …

I hope you’ll find the video informative and I also hope that you will re-watch the 1^st video after watching the Part 2 – a lot of theoretical concepts will be a lot clearer after seeing the example.

At the same time I want to highlight that despite the successful adaptation of a standard standing frame for the case in the video – the exact ways of positional adjustment of this quadriplegic boy in the standing frame  are not universally applicable for the other CP kids.

I do hope that you interpret this video as the illustration of a PRINCIPLE not a collection of moves that should be ‘copy-pasted’.

Depending on the size of a child; angle of the pelvic tilt; muscular imbalance in the upper leg and relative position of the feet – the specific adjustments might vary.

However, the principles of minimizing the muscular loads remain. .

P.S. I asked for questions in the previous posts and did not receive much yet. Scratching my head while trying to figure out why (that’s how I got bald in first place – too much thinking and head scratching…)

P.P.S. Here are the links for downloading:

CP Peacenick Practicalities– Standing Frame: Part 1

http://www.screencast.com/t/M2QzZWI3ZTg

CP Peacenick Practicalities– Standing Frame: Part 2

http://www.screencast.com/t/ZDM3ZWNkNT

 

Getting serious... GMFCS -- the acronym all of you should know and understand

GMFCS curves – the fundamental benchmark: No more ‘wiggle room’ and ‘muddy waters’ for the prognosis of ‘hawkish’ interventions.

Words of caution/ discretion advised:

LONG POST WITH A COUPLE OF EXTRA LINKS TO MORE READING…

I couldn’t manage to make this post light-hearted. If you feel that harsh exposure to reality is going to make you feel uncomfortable – probably you should skip this post.

If we are any serious in approaching the Cerebral  Palsy 'peacenick' vs. ’hawk’ dilemma, the first thing we should be talking is how to evaluate and compare the performances and outcomes – otherwise we’d end up with a divide that is just purely ideological.

As the very first step we need the benchmark… Without the benchmark to compare to – any meaningful evaluation is difficult – the winner will always be defined by the loudest mouth and the strongest authority backing.

For many generations of families affected by Cerebral Palsy that was the unfortunate reality. The entire Cerebral Palsy field was defined in super-blurred categories of ‘mild’, ‘moderate’, ‘severe’ – where it was impossible to pin down any true efficiency.

These muddy waters created a very peculiar situation that most of you are familiar with.

On the one hand, the literature and conference proceedings always had the same gloomy prefaces and intros: ‘the problems are still unsolved and poorly understood’; ‘general prognosis remains grim’ etc. – describing very pessimistic overall picture.

On the other hand, if you were to meet any particular, local medical specialist – you were most likely to experience a lot of pressure for ‘hawkish’ methods: each and every of them would beat oneself on the chest with examples of incredible progress children achieve following his interventions and at the same time drawing some really horrific pictures of the future for those ‘infidels’ who dared to doubt the ‘hawkish’ path.

Globally it was acknowledged that there was not much known and much to be done for children with Cerebral Palsy, motor function outcomes are unpredictable and not necessarily being better than the natural evolution without any forceful intervention; however, locally you were most likely to meet an ‘alpha-hawk’ – a ‘star’, a doubtless guru preaching the absolute necessity of ‘hawkish’ interventions who’d be looking for adoration and consider himself a real difference-maker…

SITTING Progress & Evolution Overview in a Spastic Quadriplegic Boy

If the previous video "Motor Development  Progress  ... Cerebral Palsy Quadriplegic Child"  -- http://www.vimeo.com/6671771 -- was more inspirational than educational  this video "Sitting progress in a Quadriplegic Cerebral Palsy" has already much more of an educational value .

The case of this quadriplegic spastic boy is so classic that each and every parent of a child with cerebral palsy will find important illustrations and clarifications:

• Levels of support in sitting - evolution from high to low
• Specifics of tailor sitting
• Suspended support by the arms -- 1 handed support and 2 handed
• Sitting platform configuration
• Segmentation and selective mobility between the head, shoulder girdle, pelvis

I am very much aware-- you have already heard it from me and probably  telling yourself : "I know, I know , I know..." but nonetheless I do recommend you to watch it and visualize these stages because the better you visualize them on the examples of the other brain injured kids the more meaningful specifics you will be able to notice in yours.

And that's the key for your own motivation, piece of mind and confidence-- your ability to notice the increments of improvements in your own child.

I want to emphasize once more -- We are posting these Progress Overview videos with an educational and not a promotional purpose. The goal is not say: "Look what a wonderful progress with ABR in just 2 years of work..." That would be a wrong message because some children respond slower and some faster, some parents have more opportunities for the ABR homework and some have less. These are realities and I do not want you to be stressed and ask yourself 'Have we achieved as much or less or more in 2 years?' I would much prefer you to focus on the stages of transformations that, for example, this quadriplegic boy had through ABR because these stages are very much typical. Therefore, even if different children respond at different rate -- the fundamentals and stages are very much the same.

And another really important aspect -- these changes are not accidental, the progress of this Qudariplegic boy, GMFCS Level 5, is not a fluke -- it's a result of systematic transitions that were methodically addressed through  Advanced Biomechanical Rehabilitation.

That's why – I am really trying my best to pre-warm you about the oncoming videos which analyze in details each of the stages of progress during 2 years of Advanced Biomechanical Rehabilitation --sitting, hand functions, crawling.

Please look at it as an illustrated textbook intended to enhance your knowledge not as see-and-forget promotional videos. That's why I will encourage you to return back to these videos several times and ideally even show them to some of your friends and family, -- watch their reaction, look at their level of understanding and try to clarify things for them. Become an educator yourself -- for one selfish reason: there is no better way to learn yourself than by teaching the others.