What is the best birthday present a person can get? – Well, there are many facets to that, right?
First of all – I want to thank all of you – my Facebook page and e-mail were full of birthday wishes and cards. I really appreciate that and it means a lot to me…
But today I wanted to talk about a different and very special present. Finally I know the answer to what really is an incredible birthday present :-)
Obviously I can only speak from my own weirdo perspective – but this year I have really got treated to an amazing birthday present… a 2-day long 1-on-1 meeting with a person I consider a bona fide genius – Dr. Jaap Van der Wal.
His insights lifted me out of one of my deepest and longest standing frustrations (obviously without knowing it – I was just one of 100s of people in the audience when he talked from the stage).
What frustration am I talking about? – well, the one that is central to the entire medical and biological discourse of today.
You see, there are two camps out there and the rift between them is of a Grand Canyon size.
Happy New Year. I wish you all the best in 2012,and looking forwards for your kids achievements. The 2011 brought significant improvements to the ABR techniques boosting effectiveness to the new level thanks to improved Super-Soft Ball Rolling Technique and the 'eggs' ... officially labeled as Trans-Fascial Viscoelastic Stimulation Technique (TFVES) ... so I am really eagerly anticipating a major boost in the developmental progress of your kids ...
Most importantly in the New Year I wish you inner strength -- spiritual, mental, emotional, physical -- you name it ... Being a Pro Parent to a child with Cerebral Palsy is not an easy place to be -- but on the other hand it has the potential to be truly rewarding in many instances. After all -- the tougher the challenge the more appreciated is every single achievement.
However, on your journey to super-achievement for your kids -- there are plenty of dangerous rocks, many of which unfortunately come from those who by right should be helping you -- the orthopedic profession.
Today's video is about this -- How to keep your cool and vigilance and not to fall for the dangerous mistakes that the limitations of the surgical mindset creates when looking at the X-Rays of the hips and pelvis. We talked about those limitations before -- keyhole vision and the knife-centered evaluation of options.
The following video is going to walk you through two incredibly dangerous interpretation mistakes that orthopedic surgeons are extremeley likely to fall for everywhere -- from America to Australia.
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.
Today I am going to touch a very sensitive subject – the issue of Stem Cell treatments for Cerebral Palsy.
Obviously, I am being asked about it frequently nonetheless, for a long period of time I preferred to keep very neutral – sticking to the explanations about ABR itself leaving it up to the parent to make a decision.
However, recently couple of parents came up with a different perspective – pointing out that this “diplomatic” stance is being of a disservice to the parents because whenever there is an expectation of miracle – it is very difficult to keep a cool head and most of the parents of special needs children vote with their heart only.
Unfortunately, voting with the heart is the sure path to extremely poor decision-making when it comes to Cerebral Palsy.
The most difficult thing for you is to step back far enough and to get a full bird’s eye perspective of what are the fundamentals behind a certain advertised “therapy for Cerebral Palsy”, how exactly does it fit into a larger picture of your child’s long-term developmental progress as well as the context of your resources.
If you limit yourself to the question “Is it a good therapy for Cerebral Palsy?” – if you start your reasoning from such a point – you are guaranteed to be steered away from solid decision-making.
You really need to start much earlier and truly understand the fundamentals in order to judge a Cerebral Palsy “therapy” correctly.
That’s why this video stretched into 3 parts – first 2 cover the starting points of your decision-making and due diligence, which are applicable not only to the “stem cell” issue but to pretty much any therapy for Cerebral Palsy that you might come across.
Only the 3rd part addresses the “Stem cells for Cerebral Palsy” issue specifically.
I realize that often enough parents tend to be impatient and have this background voice that is saying: “C’mon Mr. Blyum, let’s not stretch the philosophical part too far – give me the specific answer…” – at the expense of sounding boring, paternalistic and even offensive – I’d put it bluntly:
There are 2 strategies that you can take as a parent:
1. Being smart and trying to educate yourself getting a better vantage point and seeing the big picture
2. Being a smartass – fast forwarding through the big strategic matters and skipping them in order to get to the tactical ‘substance’ faster.
I leave the choice to you – that’s why even though I initially wanted to merge the 3 parts into a single video – I am leaving them separate and letting you decide whichever route you’d want to take.
Obviously, comments and feedback an heated discussions are more than welcome. There is nothing worse than silence. This blog’s intent is to discuss important, complicated and controversial matters, which have far more than a single perspective at them.
I do not fool myself on being so explicitly clear and convincing that there are no questions left afterwards – on opposite, if anything – this blog is an invitation to the conversation, to the opening of the ‘brackets’ and to the exposure of dangerous myths.
Part 1
Part 2
Part 3
P.S. On behalf of all of you I want to thank the family who asked me the ‘stem cell’ question this time and was happy to share some of the personal matters to the benefit of the fellow special parents.
“Analytical review. Cerebral Palsy and forceful devices- orthoses, splints, braces”
Introduction of the tactical information into our communication.
After some intro of a larger scale concepts – such as the key division of all therapies of Cerebral Palsy into the clusters it is time to get more tactical and tackle the smaller issues.
Paradoxically enough, I reckon that these smaller “day-to-day” things are what you are looking for – a lot more eagerly than for a larger scale concepts.
I say paradoxical because obviously everything “day-to-day” tactical – like the subject of today’s post – “Analytical review. Cerebral Palsy and forceful devices- orthoses, splints, braces” – are entirely defined by what the root concepts are. So if the concepts – seemingly abstract and removed far from everyday practice – are flawed then the flaw passes down all the way to the tactical everyday decisions, getting worse with every step. And the opposite is true – the new methods can only be considered truly new when they bring different claims at the level of concepts. Otherwise – the new method are just a different remix of the same old song.
The knowledge descent hierarchy is well-known and goes like this:
Concepts (defines the field, the fundamental criteria for defining directions)– descend into
Principles (Why thing Work one way or another – introducing the idea of “wrong” and “right”) – descend into
Processes (how to make it work the “right”) – descend into
Procedures (exact implementation – what model of a splint to use and how to put it on and how long to wear).
Fact is – in your experience you are used to the fact that the PTs and OTs always talk to you at the level of ‘Procedures’. Rarely they bother to present a mini explanation dumbed-down from the “Process” level – and when it comes to Principles – their reply is one and only “Brain injury is at fault”.
This is the typical style of interaction of the Pros (Professionals) to the Amateurs – crumbs of information: “Just do as you are told”…
Well, another fact is that most of the local level therapists that you face in your school and treatments encounters where you live– are the ones that have very vague idea of Principles – they covered a couple of textbooks on those Principles during their studies – but all that is a long gone history. They are the Process people.
The key feature of the process people is expediting obedience – they are the Sergeants and you are the grunts. Why do you have to do certain things with your kids? – Because he/she, the Sergeant told you so. Why? – Don’t ask – just do what you are told. The Officer (who are supposed to be in touch with the “Principles”) knows and that is enough.
I think that you have noticed that very often when you try to move out of this mold – and start questioning what the therapists – especially the ones who practice in schools – do to your child… they become really irritated and often quite nasty and vicious.
Don’t be surprised – medical system is modeled after the army (in fact the current roles were carved into it during the war times ) – imagine what happens in the army if the ‘grunt’ (rookie soldier of the lowest rank) starts asking questions that go to the Officer level?! Chaos and disorder! – That can’t be tolerated by Sergeants – that’s their job description to handle the grunts and to let the Officers be free of menial tasks.
You equally shouldn’t be surprised when you find out that a Doctor is often no different – that’s the Officer who has been so used to copy-paste quotes from textbooks that he grew into those quotes as dogmas without ever asking deeper “Why” question that belongs to level of Concepts.
Ask any doctor – does he see any flaws with the way the Cobb angle represents scoliosis and whether the concept of “scoliosis” accurately represents the 3D deformity of the child’s spine? Ask a doctor – does he see any problems with the way that so-called “hip subluxation” represents the 3D deformity of the pelvis? – He’ll be puzzled and outraged at the same time.
Puzzled – because he never thinks that way – his reasoning ends with the labels “scoliosis” & “hip subluxation” – he never ever questioned the way these labels came to being.
But even more likely he wouldn’t even get to the point of being puzzled – because he is going to be outranged – how could a person with no official qualifications, a grunt – you – dare to question the engraved “Principles”…
What I am trying to do when communicating with you – is to talk to you at the level of ‘Concepts’ – the really big questions that precede the definition of the “wrong” and “right” by setting the reference system.
So effectively I am elevating our conversation to the level of a “General”. Well – often you might feel somewhat lost – because for your entire “service” of being the parent of a child with special needs – you’ve been dealing with Sergeants in a status of a lowly grunt.
Why do I feel that is really important to talk directly to you at the ‘Concepts’ level? – 2 main reasons:
a) I see you as a primary guardian of your child and a primary therapist – so for me you are colleague of an equal statute – a key person. I assume the role of your mentor – but I am definitely not a Sergeant or an Officer.
b) The existent system is logical. It is flawed at the level of the Concepts – if you try to change it at the level of Procedure or Processes or even Principles – things are consistent from one level to another. Wrong principles define the horrid and inefficient Procedures.
But the change has to start all the way from the very origin – the Concepts
But at the same time I understand that often times you might find difficult to see how new Concepts (what I share with you) relate to the outdated Procedures (realities of your everyday interactions with Sergeants) and what do you actually need to do in the situations when you are under pressure.
So, I think that the best course of action for me is to do the mix – I will continue share the new Concepts related to Cerebral Palsy with you – but I will also start doing more of the “Response to Outdated Procedure” level explanations.
Probably it is going to take a certain time for me to find the right format – but I am looking forwards for your replies:
a) Am I reading the social dynamics of your everyday situation correctly;
b) How accessible are my Tactical level explanations – what you’d want to get explained – Clearer? Simpler? Broader?
Well, dear friends, the summer is almost over – and it is time to get back to the ABR matters.
I didn’t bug you during the last few weeks with ABR-related food for thought – as parents you deserve some vacation as much as your kids… without me bugging you with large chunks of information to process.
Historically ABR calendar follows the division into the academic/ shool years rather than the calendar ones – so I guess I need to congratulate you with the beginning of the new school year.
More studies are coming your way!... I hope that makes you excited rather than grumpy… :-)
Usually I am quite reserved in progress descriptions that kids achieve with ABR – trying to avoid the hype and over-expectations. Typically I am more keen on outlining the specifics of the challenges that lie ahead rather than celebrating the achievements already made. And often enough parents find this style not the most motivating … but that’s the way I see the world: whatever has been achieved as of today is already part of the past – so, let’s try to focus on the next step forwards…
By telling you this I just want to draw a bit of extra attention to what I am about to share with you today… because this time it is different… and even I cannot contain emotions … because it is indeed – a mind-blowing freaking unbelievable miracle!
Well, I hope that I have your attention now :-)
… and probably you think that I am going to demonstrate a quadriplegic child who miraculously went from horizontal incapacitation to running around and jumping on a single leg? – Sorry, not this time…
This type of stuff – “a developmental airlift “, or a “developmental helicopter ride”, that allows to skip phases of development – is cut of heavenly cloth. I am much more earth-bound.
Nonetheless the transformation that I am about to share with you counts on a scale of miracle as long as we stay earth-bound and realistic.
What I am going to demonstrate is an exceptionally rapid structural transformation of a classic distorted and merged quadriplegic pelvis following the “egg” work…
Let’s proceed to the video to have the entire case well illustrated…
I hope that I have managed to get you excited enough to sit through a 35 minute video…
First I wanted to charge straight through to the comparison of before and after – but afterwards decided that it is going to be of greater educational value for you to have it done in 3 parts:
Normal pelvis structure and X-ray
Typical pelvis of a child with quadriplegic Cerebral Palsy that ends up under the knife of an orthopedic surgeon with a massive intervention (bone cutting, metal screws insertion etc.)
The “mind blowing freaking miracle” – amazing transformation of the pelvic structure in a severe spastic quadriplegic child following the “egg” rolling work delivered by the ABR superstar man – Alexander “The Great “from Greece :-)
And all that leads to a not so subtle hint – your child’s future is in YOUR HANDS – but these hands have to be skillful to extract the full potential that ABR work has for your child… – so you need to study and practice and pay attention to detail without rushing to “I got it –can I go home earlier?”
P.S. I am going to add a couple of final episodes to the previous video – “Cerebral Palsy and fascia science in a tea cup” – and I hope are going to appreciate the connection that my tea cup simple example of the relationship between a dense film-like membrane and porous underlying gel has with the specifics of skeletal transformations in Cerebral Palsy pelvis…
This is a mini-post that illustrates that sometimes valuable insights into the fundamentals of what’s happening to fascia and musculoskeletal structures as a result of challenges associated with cerebral palsy could be gained from most mundane everyday experience – from observations of what’s happening in a tea cup –literally…
Anyone who had a training by me knows that: 1) I am a tea fan; 2) that I have a tendency to leave cups with unfinished tea everywhere opting for the new cup of a fresh tea instead..
Well, I’ve been criticized for this untidy habit more time that I can remember – to no avail I must admit… However, sometimes there are some unforeseen bonuses that come out of it…
For the recent weeks I’ve been thinking a lot of how to visualize for parents the effects of fascia layers adhesion in case where the flow of the interstitial fluid is affected and how we can restore their proper division by means of Thermoplastic elastomers (TPE) as the Force Transfer Medium [well that’s the official title of “egg rolling” :-)]
So couple of days ago I looked at one of my cups with the tea leftovers from a previous day … and found and excellent illustration ..
I hope you are going to find that metaphor/ spatial homology useful and insightful
Thanks …
As usual Facebook likes and comments are most appreciated
I came back home a week ago after nearly 3 months on the road ... fortunately my family still recognized me... I guess it's the haircut ... :-)
Tons of materials accumulated during these months -- the teachings, the presentations and the comparisons of before/afters to do...
This year's round of assessment was very rewarding -- the ball rolling indeed works as expected -- probably even better! The improvements of the connections within the vertebral columns and the ability to connect the 'velcro attachments' of the shoulder blades -- are really quite amazing breakthroughs..
So my call to all of you esteemed ABR Parents-Therapists -- please do not skip learning courses... Ball rolling techniques are continually upgraded empowering you to become a lot more effective and efficient... There is one thing that one cannot buy in this life -- it's time... and in the development of the growing child with cerebral palsy -- 1 hour of work done this year is probably worth at least 2-3 hours done next year --from the perspective of developmental yield...
I am going to provide you with a lot more of the technical teachings in a format of videos and practical tips in the forthcoming months -- we already accumulated tons of such teaching material -- and working through sorting it out...
So -- there is going to be a lot more opportunities for you to progress via doing your homework better.
However, direct hands-on teaching by an expert ABR trainer -- is always a major shortcut for you. That's how you can develop your skills faster and get those skills in action -- boosting your kids' development...
I started sorting out the presentations we did with Mark during the visit to Hawaii -- in this post I am offering you the one that we did in the Rehabilitation Hospital of Hawaii.
It is far shorter than the main workshop that we delivered as part of the Pacific Rim Conference on Disabilities -- but maybe there is some advantage to this more compact format.
Couple of preliminary cover notes...
Unlike the main ABR workshop at the Pacific Rim Conference on Disabilities that was filmed with a professional camera by a videographer -- this on is filmed using a good old Flip placed stationary on a mini-tripod with a superwide view of the entire room.
I guess you'd realize that the quality is not supergood. However, it's not too bad either.
First, most of the presentation is based on the powerpoint slides -- so I have inserted them into the video -- making it a lot easier to follow the narrative.
Second, I must say that the Flip is surprizingly good in recording the sound considering the tough circumstances of filming.
So I hope that your viewing experience is going to be reasonable enough to allow you to concentrate on a content...
The really interesting part is the fact that only through the circumstances of this particular presentation I understood how much of routine challenges an immersion of the new paradigm and methods face -- even when there is a genuine interest and goodwill.
Let me paint a broader picture to help you to see the context...
First of all -- the MD who is in charge of a Rehab Hospital team attended the workshop that we did few days earlier and was very positive and receptive. He was the one who actually "send" a group of PTs and OT -- 12-15 people -- to learn from us.
So, there was no resistance -- only goodwill. But... then the reality kicks in..
Every therapsit has a significant workload scheduled days in advance...
Only now I realized how significant are those logistical and administrative constraints within the existent healthcare model..
Frankly, a physical therapist in many instances has no more freedom than a worker at the assembly line -- it's a conveyor belt! Patient after patient, who have to receive a type of therapy that has been pre-aproved by the insurance companies and by referring physicians who are absolutely removed from any hands-on work with the patients..
How on Earth even the most enthusiastic and thoughtful individuals inside this profession are going to progress beyond the routines that they've been doing for decades!?
So to cut the story short -- the only time available was ... the lunch hour..
Well, it's a bit weird -- to introduce the ground-breaking concepts to the chewing crowd... :-)
However, on the one hand, even opera singers sometimes perform in front of the audience that eats and drinks, right? :-)
On the other hand, one can entertain the thought that the digestion of the "food for one's stomach" might facilitate the digestion of the "food for one's mind"....
I do not have much science to bakc this up -- but why not? :-)
On top of that, somewhere half way through the presentation ... the fire alarm went off! ...But as you all know -- I am loud and passionate enough not to be bothered by such minor inconveniences ...
So here we go ... this is a compact version of the presentation that introduces 2 key ideas:
Connective tissue focus instead of the mainstream brain and muscles focus in interpretation of Cerebral Palsy
Transition to the "Thrifty" Rehabilitation and Therapy based on connective tissue emphasis vs. the "Lavish" one that defines the therapies for Cerebral Palsy and brain-injury rehabilitation modalities today.
Part 1.
Part 2
Besides of going through these videos yourself I do encourage you to invite your PT, OT etc. to watch it as well... Hopefully, that will help your future communication with them...
Your comments are most appreciated. The more you say -- the more we'd be able to adjust and adapt the style and emphasis of presenation to help your 'inner game' development the most...
Long time – no see… Once again – contrary to my best intentions there was a gap in getting stuff published on this blog. The theorists of blogging say that nothing is more detrimental to the readership than irregularity and unpredictability…
Not that I have run out of the things to share – pretty much the opposite – but casual writing seems to be going for me only when I am out of the field work…
Anyway – I hope that blogging sporadically is still better than silence..
Well, first of all the last 7 weeks have been very packed.
In March I went to Singapore to re-film the last bits of the long overdue extended course on Super-Soft Ball Rolling Massage – the problem is always the same: by the time I finish one version there are so many upgrades to the technique itself and teachings that the entire course starts feeling awkward and outdated. Even though I realize that it could always be labeled as a ‘beta’ release 1.0 with subsequent updates –it doesn’t work for me – to the frustration of my production team I end up with another major overhaul.
However, finally it looks that the Super-Soft Ball Rolling Massage technique enters into the maturity phase with clear distinction between the skill levels – so I am feeling a lot better about the release of the intro course. Hopefully by the end of the summer we’ll get everything finished – as you all know too well – I am not known for lack of thoroughness :-)
Then there was a training session in Montreal. Very encouraging.
On the one hand, excellent progresses related to the evolution of the dorsal compartments (the back; vertebral column etc. ) – and respectively tons of material worthy of quite impressive “before/afters”.
On the other hand – I am very happy to have achieved a next milestone in the development of Super-Soft Ball Rolling Technique – the increased volumetric response, which integrates the benefits of the 3Q and the ball rolling at the same time.
As I am saying that – I realize that I have uploaded the video “ABR Technique Essence” to the Vimeo library but completely overlooked embedding into the blog:
Here it is.
On a practical side – I strongly encourage all of you to learn the recent upgrades of the Ball Rolling – the “Intense Technique” and the “Submerged Technique”.
I recommend it wholeheartedly – go ahead and sign up for the summer trainings if you haven’t done so yet– because these technique upgrades are going to be a major boost in the efficacy of your homework – at least doubling it…
Next big thing – me and Mark Driscoll (our principal research guy) – have conducted a 4-hour workshop at the Pacific Rim International Conference on Disabilities – http://www.pacrim.hawaii.edu/ – titled: “Thrifty” Rehabilitation – Home- Based and Family-Centered Treatment of Cerebral Palsy.
There were about 30 professional attendees – MDs, PTs, OTs – who specialize in Cerebral Palsy.
Frankly, over the years of life at the fringes being labeled as “alternative” I am used to the resistance and certain arrogance of the medical community towards “unofficial” newcomers.
Well, this time was a refreshing difference.
It appears that our duo with Mark finally managed to strike the right chord and engage the medical audience really deeply. Four hours is a long period of time – but the attention never waned.
I think that finally we have found a winning formula
I guess it is more than a time to proceed from general reviews of hip subluxation in Cerebral palsy videos to the specifics.
Video 5 turned out to be quite long -- so I divided it in 2 parts -- but eventually decided to add a summary as well -- that's Part 3.
In these videos I actually go point by point over the original questions, observations and concerns that were voiced in the original 6 min video by Emma's mom.
So even though the videos are quite long I think they are not too difficult to watch since any single topic is covered within a few minutes max. I hope that in these videos I've managed to illustrate how the concepts introduced in the earlier videos blend together and provide a relatively straightforward framework for analysis of an individual case.
Of course, in an individual case of your child there could be some variations of the angles or of the dominant directions of legs mobility response -- however, the essence always remains the same: One needs to use a transanatomical framework to understand the full scope of transition.
I think that the main practical takeaway from these videos is the idea of evaluating your child's evolution through the chart that takes into account multiple aspects of the evolution in the pelvic region and within lower extremities-- including the percentage measurement of femur head alignment in respect to the acetabulum but seeing it only as a single entry in a much larger matrix of changes.
I hope this helps.
I feel that these video series on hip subluxation in cerebral palsy give a comprehensive coverage of the subject -- to the point that "there shouldn't be any questions left"... However, being realistic I am sure there are further questions and I am looking forwards for receiving them -- because from my perspective of a broad "umbrella" I might be overlooking some of the very specific concerns that you might have.
As the final word for these series I want to express my gratitude to Team Emma for their willingness to go beyond "privacy" and to embrace a collective good for all the parents in a similar situation by making these video series possible. I think that some expression of your appreciation in the comments to this post will be much appreciated by Emma's parents.
P.S. Please do not forget to press Facebook 'Like' button --so more people can benefit from getting a little bit of rational outlook influx towards this emotionally charged issue of hip subluxation.
Cheers...
P.P.S. Do not forget that the best way is to actually to click on the 'ABR on Vimeo' link above -- and then you can actually download this and other videos from Vimeo website. Then you do not need to deal with streaming delays and play interruptions 'that some of you mentioned before
As I mentioned in the overview I tried to cover some of the most wide-spread worries and concerns addressing them with as much of a bird's eye view as possible.
Unfortunately, too often there is so much hysteria being pumped up about the hip subluxation issue by orthopedic profession -- that at some point one might get absolutely swirled by all the pressure and scare-mongering.
I hope the video 4. "Hip Subluxation- Why So Much attention? -- The truths and the myths" is going to help you to get out of being scared mode and panicked cries for help -- and towards being able to approach this complex issue rationally and consciously.
I assure you that you have all the necessary intellectual capacity and background to be able to figure out the truths from the myths -- all you need is a bit of help.
I hope these videos will bring you closer to this state of having a clear and rational understanding of what's going on with your child and become confident of your own capacity to deal with challenges should they come your way.
In the previous post I already mentioned that it was difficult to keep this video short -- I couldn't keep myself on the rails all the time and took several tangential educational detours as well.
Hope you do not mind.
So frankly -- I do not know which video is better -- so I put both on. Your feedback is most appreciated and is going to help me to do better videos for you in the future.
Well, that's pretty much it...
P.S. Please do not forget to press Facebook 'Like' button --so more people can benefit from getting a little bit of rational outlook influx towards this emotionally charged issue of hip subluxation.
Cheers...
P.P.S. Do not forget that the best way is to actually to click on the 'ABR on Vimeo' link above -- and then you can actually download this and other videos from Vimeo website. Then you do not need to deal with streaming delays and play interruptions 'that some of you mentioned before
What is the best way to defuse fear and confusion that you are constantly being exposed to by medical establishment? – Knowledge. To be precise – not any knowledge but parent-centered advanced knowledge. I feel it is important to distinguish parent-centered advanced knowledge from a diluted and dumbed down versions of medical textbooks that you find on ‘official’ websites on Cerebral Palsy.
Hip Subluxation Video Series intend to do exactly that –give you a comprehensive perspective on the subject that is exploited most often by fear-mongers.
I have prepared 8 videos – each of them at least 30 minutes long covering a subject of hip subluxation extensively, digging deep and going broad in order to build it into the entire context of your CP child’s development – especially for quadriplegic kids.
Yes, it’s a lot of information and yes, you need to do your homework encouraging yourself on making an effort to absorb and digest it. However, considering all the emotional and financial costs that fear and confusion around hip subluxation and other ‘scary’ issues related to legs alignment and mobility impose on you – I think this homework is going to be a worthy investment of your time.
Not so long ago I have received a wonderful video with questions about hip subluxation and transitions in the mobility and alignment of the legs. The video is compact – about 6 min long, it shows impressive observational ability of a mother – awareness of all sorts of little details; but at the same time, within these short 6 min it covers the range of questions and concerns that I hear from many of the other parents being asked over and over again.
I’ve been granted a generous permission to use this video and my answers to the questions asked as the teaching material that will benefit a great number of parents.
Obviously, I am going to stretch my explanations and comments much beyond the original 6 minutes – so I’d probably end up dividing it into several parts.
In the review of the video – I have separated the observations from the statements – which in turn are divided into explanations/ analytical statements and focus points of concern /questions
Since there are 23 observations and 19 analytical statements/questions/ issues of concern voiced by Emma’s mom– even if I spend a few minutes of comments per item– my video will end up being really long. But a number of these issues are so important for each and every of you that I have to dig deeper and show you a broader perspective as well. Obviously – that will add up the video length minutes.
Hence my first suggestion to you is to have a look at the original 6 min video in its entirety to have a complete overview of the situation and to align yourself with it.
For your convenience I’ve added the captions and actually labeled all the observations and questions.
In many countries New Year is the time when people throw away everything old and useless that accumulated in a house with the idea of having a fresh start and letting the new things in.
I admire the tradition and decided to follow suite – the first post of 2011 is about flushing down the drain the outdated neurological dogmas that paralyze and lead astray professionals and parents of kids with Cerebral Palsy alike.
Disclaimer – big and bold: everything you are going to read is my own extremely biased opinion that is most unlikely to be supported by qualified medical professionals.
I’d actually go even further and say this – to leave no doubts about my extreme biasness:
In my opinion, “brain-based” approach to Cerebral Palsy that treats ‘brain injury’, i.e. damage to a part of the brain, and ‘Cerebral Palsy’ – disorder of posture and movement/failure in reaching biomechanical developmental milestones -- as the interchangeable synonyms – is the most important obstacle that stifles the progress of physical rehabilitation and freezes current abysmal status quo.
In other words, a neurological paradigm is: a blindfold over your eyes; sticky glue, quicksand and rocky terrain underneath your feet; iron gloves over your hands; plugs in your years and shackles around your feet – all of these in a single nasty package… So you are welcome to figure your chances of success if you are ever lured by
In Part 2, I am going to go over 16 most obvious reasons why neurology leads you astray and why the guidance by neurologists who define the discourse of today’s interpretation and approach to Cerebral Palsy is the worst and most unproductive thing that is responsible for astonishing lack of progress in Cerebral Palsy therapies over the last 100 years.
I’ve been thinking about these flaws for years and collected quite a pile – but in order to spare you from a nearly endless list – I gave myself a time line: I put the kitchen timer on 10 minutes and proceeded to write down as many stubs exposing the fundamental flaws of neurology and brain-centered paradigm for Cerebral Palsy as possible.
By the moment the timer went “Bzzz” – I was on reason # 16.
Well, If I were to give myself ½ hour – I’d probably come up with a list that would have been three times as long– but I think even a basic version will do to begin with.
However, before proceeding to Part 2 – the actual list – I wanted to immerse you in the context of the case – I hope that’ll give you an improved perspective.
I do not know whether it’s my nerdy self but I find this picture incredibly funny and strangely appealing.
This is the cover of Harper’s Magazine and it has been on my office’s kitchen table since October but every time I walk past it – I can’t help smiling… The white-haired man with the badge: “Hello my name is Sigmund”, who is being kicked out from a gathering as an unwelcome trespasser by a muscle-bound security, is obviously Dr. Sigmund Freud.
The New Year is a very special time – it’s a time of wishes and hopes. There is something about this ‘click’ of the calendar that switches on the inner optimist in us – no matter what type of personality we are in our everyday lives.
And today’s post and my most sincere wish for all of you in this new year is exactly about that – keeping this inner optimism engaged all the time.
In 2011 I wish all of you to turn the internal optimism selector switch into the “On” position and to disable the “Off” button.
I wish you to improve your ability to enjoy the moment, to fall in love with a journey of making life for your kids better without being anxious over the long-term outcome of “final success”.
I wish you to give yourself praise and to celebrate wholeheartedly whatever small achievements and micro-steps of progress your child manages to reach…
I know all these are universal truths perceived by many as banalities and an empty wishful thinking that does not hold water against the storms of the reality…
However, I’d dare to encourage you to make an effort and even when it feels difficult to keep your optimistic stance – still to keep trying and keeping your internal ‘reality perception’ filters switched into the “Positive” mode.
My thanks and deepest gratitude for keeping up with my writing, which has been sporadic at best this year – I hope I’ll do better in 2011 (no tongue in cheek :-).
My extra apologies for disappearing off the scene for the last few weeks. I want to assure you that my intention/ commitment to keep this blog alive and vibrant is as strong as ever. But even the strongest of commitments to write regularly had no chance of withstanding the avalanche of new discoveries and realizations that fell on me over the last 3-4 weeks....quite literally...
The flow of ideas has been so intense that until now I am having trouble understanding / figuring out – what is happening ? -Have I stumbled upon an unexpected goldmine or am I going to be swept away by the avalanche of the ever-growing diversity of options?
In short, the new realizations are going to lead to the new pool of strategies, techniques and tools that are as large if not larger in variety then entire ABR arsenal developed until today.
Why?
Because instead of one single Cinderella turning princess– fascia – that ABR has been committed to for the last 10 years, there are 2 more Cinderella stories that suddenly started to unfold really rapidly.
Cerebral Palsy and Biomechanical Diet. 7 Essential Commonalities Between the Biomechanical ‘Feeding’ and Strategic Nutritional Plans.
In the previous post I have introduced the idea of the Biomechanical Diet for the children with Cerebral Palsy together with concepts of ‘mechanical foods’ and ‘biomechanical nutrition’…
I must say, that I was positively surprised by the response and how well this idea connected and took hold. Thanks a lot for your comments and observations – they really help a lot in shaping the ABR educational message.
Today I’ll take these ideas of ‘Biomechanical Nutrition’ a bit further by showing 7 essential commonalities between the biomechanical ‘feeding’ and strategic nutritional plans that might help you to integrate the notion of the Biomechanical Diet deeper and might be helpful on the level of implementing it in practice for your child with special needs.
Of course, the commonalities do not end with these 7 – but this scope provides a good start.
So, in order to make navigation easier –I have arranged the most obvious commonalities between the Biomechanical Diet and Nutritional Metabolic Diet into a numbered list that is by no means exhaustive:
1. Spontaneous doesn’t work. ‘By design’ approach is always superior to the ‘by default’ one.
If you want best results – you need to design the specific diet targeting the specific metabolic needs of a person taking into account the individual aspects of the ability to eat, to digest, to process and to absorb different foods as well as the ability to evacuate of byproducts and ‘leftovers’. As the parents of Cerebral Palsy kids you are very well aware how disregarding just one of these components might cause tons of trouble.
The same thing is true for the Biomechanical Diet – if you want the best results and if you want to stimulate your child’s development to the maximum possible potential – you cannot afford being aimlessly floating and simply hoping that things will turn out to better by themselves or via sporadic ‘treatments’.
In my constant attempts of making the ABR message more user-friendly I have recently stumbled upon an interesting angle that I want to share today and bring it to your judgment.
I would appreciate the feedback and responses – indicating whether this angle is worth further pursuing.
I guess the title of the post itself “Cerebral palsy and Biomechanical Diet” pretty much indicates the angle that I plan to take – but let me give you some details.
First of all – some field observations.
I must say that the children with Cerebral Palsy – at least the children of ABR Families – are the best nourished and taken care of individuals that I have ever encountered in my life.
They are given the best organic foods, home-cooked, balanced for a full spectrum of nutritional needs, delivered at regular intervals and with consistent daily/ weekly routine. On top of that – each child receives a complete set of supplements – from iron to aminoacids to vitamins – that target the weakest links in the nutritional chains and take care of the gaps left by the staple diet itself.
Experience shows – such a serious approach to the diet of a child with Cerebral Palsy, especially a weaker quadriplegic one – is vital and essential. Without such attention to detail and installation of consistent routines – things go downhill very quickly: troubles with digestion; stomach pains; vulnerability to infections; constipation; intoxication; weight loss and so on.
What I want to do in this post is to draw some parallels...
First – in order to thrive Musculoskeletal system needs not only regular ‘metabolic’ foods but the special kind of food – mechanical stimuli.
It won’t be too far of a stretch to say that musculoskeletal system at all the levels – from deep fascial core to the superficial striated muscles – feeds of mechanical interactions with external environment.
In other words –mechanical stimuli are food for musculoskeletal system.
Well, and here is the first parallel – such mechanical stimuli could be “nutritious” or “empty”; they could be “staple” foods or “pleasure” foods; they could be “balanced” or “imbalanced” …
Basically everything you know about nutrition and diet principles for the ‘metabolic’ foods very much applies to the mechanical foods as well.
Where is a quadriplegic child with Cerebral Palsy in this picture? – A quadriplegic child in a mechanical sense is in a position similar to those victims of starvation that you regularly see in the news when there is a famine somewhere in the less developed regions of the world.
Thanks a lot for the responses to my previous couple of posts.
Frankly, I thought that there would be more questions on the video itself – so at the moment I am not sure whether it was: a) too technical; b) missed your interest points; c) you had technical problems viewing it; d) you’ve postponed viewing ‘until you have more time’…. So I would really appreciate more definitive responses – even a simple two line comment is most welcome. However, in case you have viewing difficulties – please click on the link ‘ABR on Vimeo’ above the blog text– that will send you directly to Vimeo website where you can not only watch the video in a larger window but can download it to your computer as well.
Anyway – I’ve got a number of good questions both as the blog and Facebook comments as well as e-mails – all of them had the same underlying theme: “This BioTensegrity thing –how does it help my child?”
It’s understandable – at the end of the day everything revolves around the proverbial WIIFM – ‘What’s in it for me?’– in other words: “Is this BioTensegrity being nothing more than an intellectual fun for you, Mr. Blyum, or can we expect something tangible for our kids out of it?”
A question might look simple enough – but it’s not. First of all there are at least 2 main aspects in it:
Improvement of ABR as a method – the ability of ABR tools to facilitate the developmental progress of your child better and faster;
Improvement of you confidence in ABR as a method and as a preferred platform for physical rehabilitation that you have chosen for your child.
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