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.
This post continues our explorations into the matters of hip subluxation in Cerebral Palsy.
I labeled it as Part 7 – but it might have as well been "The Part 1" since it addresses the issues that puzzle you the most.
"How will the leg bone get in if the "pelvic roof" is flat? " … In more appropriate terms it sounds: "How does the femur head find stability under the flattened acetabulum of the pelvis in cases of severe quadriplegic Cerebral Palsy?" – these are the questions that I receive probably most often.
In this video I give the entire context and reference the development of the pelvis in a healthy child through the transitional phases that it goes through.
The key message is straightforward – "it's not about the roof – it's about the wedging of the pelvic width by the triangle of sacrum". In this video you are going to find really clear illustrations on how it all works.
In case there are problems with imbedded video -- please follow the direct link:
Hip Subluxation in Quadriplegic Cerebral Palsy_Part 7_How the femur head gets in
As always, I invite you to ask questions , leave comments and click likes to share with your friends. Don't hesitate – speak out! Was it helpful? Have I managed to ease your worries? What image did you have in your "mind's eye" before and has it changed after watching this video?
I am very grateful to a mother of this boy who sent me her elaborate questions and encouraged the making of this video as well as agreeing to share it with the other parents-- probably she's going to appreciate your feedback as well.
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.
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...
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
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