The "Shoe Thing" Again

I think in some ways the hardest thing for us clubbies to come to terms with is that we really can't do some things the same way non-handicapped people are able to do those same things. This doesn't mean we shouldn't still strive to do what we desire to do, but on one front in particular, we have a specially difficult time - buying shoes. We want to be able to do the same thing anyone else does - walk into the shoe store and buy that really sexy/cool/stylish pair of shoes and walk out wearing them. But - you know what's coming - we will pay a real price for doing so.

They may not have anything that actually fits both our feet, and our orthotics. They may have something that fits, but we can't wear them for more than an hour or so before our puppies are whimpering like crazy, and we never wear them enough to get our money's worth out of them. Or, we may wear them despite their lack of support, and then pay the price of days of more severe pain. And for many of us, the option of custom footwear is too expensive, too hard to find, just not stylish enough.

But there are types of footwear that can at least be modified, with rocker soles, lifts, better support, etc., that are within our price range, and maybe not too ugly. Even with that, the real problem is our self-image versus our self-comfort. That is the real battle. And all I can counsel after 60 years, and more than 30 making shoes and orthotics for people with a very wide variety of difabilities involving their feet and gait is, that beauty involves much more than your shoe style. It involves your sense of happiness, of comfort, of involvement in all the other aspects of life, outside the difability facing you daily. It is always your choice - both the shoes you choose, and the self-image you choose.

 

And yet I continue to make the case for finding and spending whatever it takes to get the right shoes for your specific feet. The way I see it now, we clubbies have only two choices for finding reasonable comfort - amputation and prosthetics, or custom shoes and orthotics. No amount of experimental surgery will make a real, long-term difference, especially fusions - they just move the problem and pain to another joint or set of joints. There are enough stories from clubbies who have gone down this road, with mostly failed experiments, many more years of pain and frustration, and perhaps eventually amputation anyway. But it isn't for every clubby, especially when we get older, where our bodies are less able to adapt to prosthetics as they would have been had we had it done earlier in life. 

 

So this leaves getting smarter about footwear and orthotics. Yes, they cost, and yes, you may have to work outside any insurance system to get what you need. But aren't you worth it? Isn't having less pain, remaining ambulatory longer, recovering faster after a long day on your feet - isn't that worth the price? Only you can answer these questions, but be sure to ask one more question - what price happiness?

Hello, Mt. View!!

OK, now I am curious. Hello, mysterious visitor from Mt. View, California! Please identify yourself! You are the closest visitor to this blog yet, and we must connect! Are you also in the Facebook adult/teens with club foot group? Stand up and be noticed!! Let's do lunch!

An Amazing Journey

Readers of this blog will remember one of my recent guest posts, done by Lacey Phipps. She is the young clubby who after years of unnecessary suffering decided to have her legs amputated, and be fitted with prosthetic legs. Well, recently, she was selected as the recipient of a new pair of prosthetics by an amazing outfit in Virginia, USA, and I feel I must help her story get wider spread, and to help others learn about the incredible people at Hattingh Incorporated dba Prosthetic Care of VA, who have been in the orthotic and prosthetic business for decades. As it says on their page, "John Hattingh CP, LCPO (SA) is an educator and leader in Prosthetics. His attitude towards his patient is "No prosthetic issue cannot be solved."

 

These amazing people paid Lacey's way from Texas, put her up at a local hotel, schlepped her around and to and from, and made and fitted her for top-notch below-the-knee prosthetics, began her rehab training, and got to know a few other clubbies by their posting Lacey's progress to all her friends and to the adult/teens with clubfoot Facebook group. To see Lacey in one of her first walking trials, look at this: Video.

I can't wait to post a video of her doing her favorite dancing. What an inspiration to clubbies everywhere!!

Go, Lacey, GO!!!

That "Hate To Get Out of Bed" Feeling

Normal logic suggests that, all else being equal (strange saying, as nothing is generally equal to anything else in this life), when your feet hurt at the end of the day, a good night's sleep will make them feel better in the morning. Hogwash. That's what I said - hogwash. Something about your feet just laying there all night seems to make them even more tender first thing in the morning. That is, if they let you get any sleep at all. So, is there any way to change this situation?

The answer to this is - sort of. There are a number of things you can do to allow your feet a better night's sleep, and to reduce the amount of inflammation during the night so that the pain is actually reduced by morning. Note I say "reduced," and not "stopped." That is because we all have somewhat different levels of pain, inflammation, and abilities to recover. Plus, the greater the amount of activities that occurred the prior day seems to play into this equation, though again, it can vary.

So, here are some tips: (The links supplied should be copied and pasted into your browser's address bar.)

• Invest in a blanket raiser. This is a simple device, sort of a frame that slips under the foot of your bed to drape the blankets over, which allows your feet to stay warm without the weight of the blankets pulling them down. One such place to see what this looks like is at http://www.toespace.com/ where you can see how simple such a device is. Those of a more enterprising bent can easily make their own.

• Consider elevating your legs at night. The simplest solution is some large pillows at the end of the bed, but you can also acquire a large foam wedge. The idea is to get your legs above the level of your heart. This will help reduce edema - inflammation - significantly. If your legs have the tendency to fall outward, then simply place a couple of smaller pillows under the outsides of your upper legs. This will reduce pressure on the femoral head and the hip joints. Here is a link to one example (there are many places to buy these - this is not an endorsement of this specific seller): http://www.makemeheal.com/mmh/product.do?id=10052

• Ice packs - use ice packs or wraps for at least twenty minutes before going to bed. This is another way to get the inflammation down. Here is a link to a page with many examples of the ice wraps available: http://www.amazon.com/s/?ie=UTF8&keywords=ice+packs+for+feet&tag=googhydr-20&index=aps&hvadid=1099039481&hvpos=1t2&hvexid=&hvnetw=g&hvrand=18577333431008496381&hvpone=&hvptwo=&hvqmt=b&hvdev=c&ref=pd_sl_3bblda0974_b

• Take some aspirin before bed. If regular aspirin is too much for your stomach - maybe you have an ulcer, in which case regular aspirin is NOT a good idea - you can take what is called enteric-coated aspirin. This type of aspirin doesn't dissolve in your stomach, but in your intestines, so is safe for those who have issues with aspirin. Aspirin is one of the very best medications for the reduction of inflammation, better than many prescription NSAIDs (non-steroidal anti-inflammatory drugs). Cheaper, too! 

• Massage your feet. Use a nice lotion, maybe even something like Tiger Balm, or any other deep-heating cream or lotion. Stretch the joints of your feet slowly and as fully as you can. Move the joint to the end of it's range of motion and hold it for a few minutes before releasing it. Where possible, move each joint in both directions, to help open the joint spaces temporarily, thus giving them a little break. Be nice to yourself, especially to your feet! You deserve it! Some samples of good lotions and creams can be found here: http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=deep-heating+pain+relief+creams+and+lotions&rh=i%3Aaps%2Ck%3Adeep-heating+pain+relief+creams+and+lotions

No one of the above suggestions will do the trick - you really need to try them all, until you find the right combination that works for you. But I am convinced that it is possible to wake up with your feet feeling a lot better than when you laid down to go to bed last night. Develop your own ritual. Be nice to your feet! And they will thank you for it!

You Body is a Four-Story Wonder!

You probably, like most people, see your body as a single item - your body, and nothing else. But modern science (ain't it a grand thing?) will tell you that in fact, your body isn't even all yours. We are home to, and most likely fully dependent for survival on, hundreds of species of other beings that perform very critical tasks on our daily behalf. Bacteria. That's what I'm talking about! No, actually, I won't be talking about bacteria - that's just a ploy to get you to read further.

 

What I AM talking about are the four levels of your body that we use to describe how you compensate when your table, er, supports, well, that is, your legs are not of equal length. Like the table I spoke of in the last post, your two legs have to perform in a similar fashion as that table - they need to provide equivalent stability in as bi-lateral a fashion as possible. When they fail to do so, the body becomes imbalanced, and force the body to begin compensating for that imbalance.

 

To describe that compensation, and to aid in determining how to respond to effectively change that compensation back to a more normal bi-lateral state, we need effective language and ideas in order to communicate what is wrong, where it is wrong, and what to do to respond to the problem. This is no different than any other scientific or technical issue - without good, descriptive, and accurate language, we cannot effectively resolve the problems that crop up.

 

We begin by dividing the body into four segments - primary - from the floor to the knees; secondary - floor to hips; tertiary - floor to shoulders; and quaternary - floor to the top of the head. As the body is essentially a structural chain, changes made at lower levels of that chain promulgate proximally - that is, from the initial location of the imbalance upward toward the center of gravity. Because we humans - as well as every other being and object on Earth - reside at the bottom of a gravity well, anything that alters our balance alters how we react and operate in relationship to the direction of gravity. This is a very important concept for the purposes of our understanding of bi-lateral biomechanics, just as it is for that table.

 

So when we talk about how a given body compensates for an imbalance in their bi-lateral functioning, we describe where those compensations occur, and to what degree they are occurring, by indicating to and at what levels we see compensatory changes. If, for example, we see a simple change where the foot on the apparent short-limb side of the body begin to walk more on the ball of the foot, raising the heel more rapidly on the affected side, but no change in the levels of the hips or shoulders, we would describe this as a primary compensation. And for most primary compensations, the body often maintains only that level of compensatory involvement for many years, sometimes for life, without eventually moving to another level of compensation.

 

But there is no guarantee of this. Our bodies are being acted upon by forces both external and internal. Gravity we cannot resist, but that is also true for many of the internal forces at work. One example is the state of any one individual's ligaments. Not everyone has the same tone to their ligaments - some of us have very tight ligaments, some fairly middle-of-the-road ligaments, and still others have a very loose ligamentous tonality. The term "ligamentous laxity" properly describes what is more commonly known as "double-jointedness." It merely means that such an individual's ligaments are so loose as to permit their joints a far larger range of motion. Such people are sometimes more prone to injury, but they are also prone to developing more and far more problematic compensatory mechanics. We will touch on this more in future installments here.

 

For now, just remember that your body works to manage compensatory demands by adjusting itself across these four levels. Note that each level incorporates all the levels distal, or below that level, so Secondary also encompasses Primary, and so on. This, too, will be important to recall in our other installments.

 

Next time: why you can't resist my compensatory charms!

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!

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?

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?

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.