Tuesday, June 25, 2013

More on the Unbalanced Life

Picture a table - flat top, four legs. Simple as it gets. Now, if the floor the table sits on is perfectly level, and the table's legs are all exactly the same length, and the table's top was planed to a level surface, you should be able to place a marble on the center top of that table, and the marble should just sit there. A very boring marble on a very boring table, on a very boring, level floor.


But isn't that what you want out of a table? Nice, and boring, and level. If it wasn't level, well, the marble would roll off the table, and you would be walking past that table, step on that marble, slip and fall and break something, end up at hospital, pay a lot of time and money trying to recover, and get no time at all to spend enjoying that table! Pretty raw deal, right?


Now, let's say that one of the legs of that table is somehow shortened, just a little bit. That would make the table unsteady, but if the other three legs remain the same length, the table will more likely than not keep that marble perfectly safe away from the floor, and save you from another trip to the ICU. Unless you lean on the table, of course. But with four legs available, you merely have an unsteady table rather than an unlevel table - again, unless you lean on the table. So keep your elbows off the table, OK!?


But what if you suddenly have two legs that are a little shorter? Well, first off, somebody is really out to mess with you. Are you sure you've been keeping the house locked up tight? Because this really should NOT be happening, wouldn't you agree? But there it is - two legs one length, and the other two another length. Now, that table is pretty much not level - but it may be steady again! Unless the shorter legs are kitty-corner (or catywhompous, if you prefer) and now the table is both unlevel and unsteady. This table has some real problems, doesn't it?


But lets say we stop talking about that table, and instead talk about you. If both your legs (you DO only have two, right? You are NOT a table, yourself, are you? Let's hope not!) are the same length, you are probably level (though there are things that can make you unlevel when both legs are the same length, but we started with tables and legs, and I don't want to get too far off the central premise here, OK?) But while you might be level, you may be unsteady - hopefully not due to excessive drink - but because you are only symmetrical side-to-side, not front to back. At least I hope so. It would be creepy if you were - symmetrical front-to-back, that is. I don't want to talk about this if you are going to get creepy, OK?


So, again, let's pretend that one of your legs is a little bit shorter than the other - though I suppose we could say that the other one is longer than the shorter one, and that might make everyone happy. Does that work for you? Good. Now, with each leg having a different length, you are unsteady and unlevel. Yes, I know, our world makes us all feel that way sometimes, but stay on topic here, OK?


If your legs are different lengths, then your pelvis will also be unleveled, as will your spine, shoulders, head, etc. Even your hat will look funny. But all is not lost! Because your body has a unique ability to compensate - make up for the difference - when faced with unleveling. And this compensatory function, as it is known, works in some rather remarkable ways, and usually works according to some basic, yet variable, rules.


The first two rules are the only ones that never vary - they apply to all bipedal creatures, uh, people, for the purposes of this lecture. Yes, I am lecturing here. You didn't think this was a poetry reading, did you? You did? Boy, you came to the wrong classroom today, didn't you?


Rule one: Your inner ear must remain balanced, no matter what the body has to do to maintain that. Rule number two: Your eyes must remain parallel to the horizon. If you think about these two rules, they become rather obvious: an inner ear imbalance leads to vertigo, and an un-level visual horizon leads to an arrest for drunkenness in public - or at least a great deal of discomfort trying to walk down the street!


So, all other ways the body compensates for leg length differences are tied in to maintaining these two factors, sometimes even if it causes pain in other areas. But for now, just remember this one thing: Your body only has two legs. 


Sometimes we all need a little reminder.


Nest time: If you only have two legs, how can you have four levels?


Are You Living an Unbalanced Life?

No - not unhinged - though you may be, I couldn't say - but unbalanced. That is, does one side of your body appear lower than the other? Does your head tilt to one side, does one shoulder appear lower than the other, does on hip drop lower than the other? If you stand in front of a mirror with both arms hanging loose to your sides, does one appear to hang a little lower than the other, or does one appear to hang closer or farther away from your sides than the other? When you walk, has anyone ever commented that you look a little crooked, tipped to one side?


If you can answer yes to any of these questions, you may have a leg length discrepancy. If you are a Uni-CF, then odds are even higher that you have such a discrepancy. Yet you may be curious as to why one leg being shorter than the other can cause things like a hip or shoulder appearing lower than it's counterpart, or for your head to tilt a little to one side. This is because when your foundation (just like in a building) is uneven (your legs) then the entire structure will also be uneven. A difference as little as 1/8 inch can cause long-term issues with other parts of your body. But strangely, not everyone reacts - or, compensates - the same as another person might.


This is because we each have somewhat different physical characteristics that make compensation a very personal experience. Some of us have very tight ligament structures, some very loose, and some are somewhere in the middle. This difference can have a lot to do with how a given individual compensates, and to how many different levels of the boy they actually compensate.


This is an introduction to what will be an occasional series looking at how the body compensates for asymmetry. I will be looking at how compensation can present, and how to reverse that compensation when and where it is warranted. Patience - all will be revealed!


Just don't become unhinged, that's all I ask!

Friday, June 21, 2013

To Monetize, or Not to Monetize?

So, I am considering adding a store and some affiliate marketing to this blog, in order to raise money for the research fund I am trying to launch for clubby research. This is not an easy decision, as I have preferred remaining non-commercial. But I am finding it hard to locate enough money to pay for all the legal and administrative costs associated with launching a not-for-profit organization, so this seems like one potential avenue to explore.


The focus would be only on products and services of value to the clubby community - canes, wheelchairs, elastic wraps, orthotic makers, shoemakers, etc., all focused on real clubby needs. The affiliate marketing aspect of that would be tricky, as most such programs make you take ads that may have no relationship to what the blog or site is even about. But I suspect there are ways around that.


What I need from you out there are ideas of the kinds of products and services that would help you out, day to day, and for relief of pain, etc. No pharmaceutical ads, though - they make enough already off everyone else. 


Please add your comments to this post, pro or con, and any ideas for products and services you want/like. I am especially interested in companies you have already had a good experience with. So, jump right in - what would you like to see here?

Sunday, June 16, 2013

Navigating the Mental Marshlands

All disabilities - or, difabilities, as I prefer to call them - have certain elements in common, regardless of the physical or mental or behavioral manifestations each possesses. Some have more chronic pain than others, some are more visible than others, some are even more "money-worthy" than others. There are "orphan diseases" which should be updated to include syndromes and conditions, as not all "orphaned" disabilities are diseases, per se. There are some that present multiple ways - that is, they manifest on multiple parts of body and/or mind. Some are in fact fatal, some short-term, and some lead to steady deterioration over many years. But these are merely some of the ways difabilities may differ.

But the commonalities are often overlooked. For one, everyone with a difability knows they have one. If the physical and/or mental manifestations of that difability don't make it clear, then the reactions of the non-difabled world will make it clear sooner or later, and often in trauma-inducing fashion. For another, except in those difabilities that resolve, whether from a disease running its course, or because the difability was due to an injury that finally heals, the difabled understand they are going to be dealing with their condition and all it may imply for their entire life. This may mean having to deal with issues such as trying to make a living, having to pay for products and services others will never be faced with, even having daily concerns for one's personal safety, especially in some less enlightened cultures around the world.

These commonalities can also have deep psychological components, deep wounding starting quite young, sometimes from family members, schoolmates, teachers, even medical professionals who have poor training and even poorer capacities for compassion and understanding. The courts and law enforcement often display extreme ignorance when dealing with handicapped individuals, especially those who have developmental difability. There have been many instances, even in the US, where individuals with cerebral palsy have been mistaken for drunken or drug-compromised individuals and treated abhorrently. Such experiences leave significant mental health issues that people with difabilities cannot always afford to get the proper help with. To make matters worse, there are not that many mental health professionals who are skilled in meeting the psychological needs of the difabled. And if such an individual is also trying to deal with chronic pain, they are often mischaracterized as merely seeking drugs to feed some mythical addiction. The deeply flawed nexus between our medical profession and our legal system serve to make this a nightmare for such people.

One of the things which make seeking resolutions for these misunderstandings, injustices, and shear ignorance on the part of those who should know better is the social fragmentation of the difabled community. Too many have seen it more in their self-interest to place the focus on their own specific difability - MS, MD, CP, HIV-AIDS, arthritis - and in the short term, this fragmentation has worked - for those who have managed to gain the attention of the rich and famous. But for those who fall more into the "orphaned" zone, this fragmentation has made life even more difficult, and has made it less likely that we will see any improvement in broad-based psychological care, improvements in the reactions and responses of the legal and law enforcement community, and a deeper appreciation of how all those with difabilites are treated by the medical profession and the insurance companies.

I do not expect to see this fragmented behavior of the difabled community to change, certainly not in the near term. It works too well for those whose difabilites show up in larger numbers, and where funding levels have permitted there to be some advances in treatment, prevention, and palliative care. But there is a cost to this, which is borne mostly by those with "orphaned" syndromes, conditions, and diseases, and because so little funding and even less public awareness often attends the affected individuals of these "orphaned" classes, the situation can seem dire, unfair, and without hope. Maybe it is time to start a conversation among all the difabled community, to seek more equitable ways to deal with both the specifics of each form of difability, and with the commonalities we all deal with every day.

I am ready for that conversation. Are you?

Monday, June 3, 2013

How do I Feel About World Clubfoot Day? Meh.....

Today, according to the Ponsetti Institute, is World Clubfoot Day - actually, it is Ponsetti's birthday, so there's the first clue. Not that I don't think there shouldn't be a celebration for us clubbies, but the problem is, it isn't - for all clubbies. It's for all the new clubbies, yes, all the young ones, those, specifically, still in the care of the pediatric medical community. And I think that's OK - as far as it goes.

The trouble is, it doesn't go far enough. Because for everyone past the age of pediatric care, well, you are pretty much on your own. Unless you think having one solution - fusions - is really a sign the medical community cares about you. I mean, go ahead, celebrate, but what, exactly, do adult and late-teen clubbies have to celebrate? We see the use of words like "corrected", and "cure" and "prevent." None of which are true, and all of which are designed to lull parents into complacency. The doctors want compliance, belief, trust. That's why they just can't bring themselves to tell parents the whole truth.

Even the Ponsetti community isn't hearing the truth. Just because you reconfigure the feet with little or no surgery still fails to address the other aspects of TEV - the distorted muscle cells of the lower leg, the fact that repositioning/reconfiguring does not guarantee fully optimal biomechanic alignment of the joint facets. And even by their own studies, at least 20% of those treated through the Ponsetti method fail to find long-term relief. If we also look seriously at the actual studies done by Ponsetti practitioners, they still haven't had anyone, at least not in any significant numbers, reach middle age and still report a pain-free life. So thanks, but I would rather wait for the real long-term studies before I start patting Ponsetti on the back.

Now, I am glad that the Ponsetti Institute is really trying to make a difference for the kids with CF. I am happy those kids have someone at least trying something different. But until they start dealing with the truth of the matter in a forthright way, I won't be sharing their party just yet.

And until the medical profession starts to take all of the rest of us clubbies seriously - do the real research, develop substantive solutions for those of us not so lucky to be born in the Ponsetti Era, seek good palliative treatments that don't start and stop with fusions - I will only be celebrating the day each clubby I know finds some small amount of relief from the daily grief of their damaged feet.

That's the only party I see worth celebrating right now.