Yet Another Study That Tells Us What We Already Know

Well, perhaps it can be chalked up to poor funding for real long-term studies, or maybe it's merely a lack of imagination, but once again we have a study telling us what we already know using protocols that fail to ask the right questions of the right target population. In a recent study, (Adam Graf, MS, et al. Long-Term Outcome Evaluation in Young Adults Following Clubfoot Surgical Release. In Journal of Pediatric Orthopaedics. June 2010. Vol. 30, No. 4. Pp. 379-385.), the findings are not only not surprising, they are also less-than-stellar as regards the conclusions as stated in an article about this study, at eorthopod, to whit:

The pain and movement issues lowered the AODFAS scores in both the Ankle/Hindfoot and the Midfoot scales. The Disease Specific Index, another assessment, found that 96 percent of the feet were painful. (italics added) Results also showed that patient who were on their feet for long periods of time or needed to do stressful activities, such as running, jumping, or stair climbing, to name a few, experienced more problems with their affected foot or feet. In fact, all patients reported some level of pain at the end of the day or after strenuous exercise.

The conclusion seems to be that adults who were treated as children for their clubfoot or feet still have issues with their feet later in adulthood. (well, duh!) Although these problems don't cause problems with basic daily living, (Big Fail Here!) they do provide limitations in how active the patients can be. The authors suggest that following these patients into their later years to see if any changes occur, particularly as they enter the stages where arthritic changes may occur. (poor syntax was in the article, not my fault!)

They don't cause problems with basic daily living! Gotta love that one! Who were these investigators (being generous here) actually talking to? Well, you can see from the below items that they followed up on people as old as 24 years old!! Yeah, that's about as long-term as they seemed interested in. Too sarcastic? Maybe, but here we just have another half-hearted attempt to get something published rather than a real effort to get at the facts. To  make it worse, they study only covered a very small patient population:

The authors of this article reviewed and evaluated the long-term outcomes of the comprehensive surgical release. They collected data from 24 adults (17 males), aged from about 18 years old to 24 years old and a control group (with no clubfoot) of 48 people. Eleven patients had only one clubfoot (unilateral), while the remaining had two clubfeet (bilateral>). As children, none were successful with casting so they underwent surgery before they were 18 months old. Fourteen patients went on to have further repairs.(Again, a poor language choice - "repair" suggests a fix was found, whereas many of us know that so-called repairs are often as damaging as the initial interventions.)

 Now, I want to believe that the authors were sincere about getting at some elements of the truth, but perhaps we need to see some clubbies get into the field and be the people to conduct the serious studies we need to see done that may finally convince the medical establishment that more needs to be done. Until then, I hope you will forgive my sarcasm and skepticism about studies that fail to go as far as they need to. They consistently fail to seek out older clubbies to include in their studies, they fail to address the real issues we face daily, and while seeking answers as to etiology are certainly important, they neglect those of us who are already trapped with feet that encase our lives in the cement of chronic pain. They need to start asking better questions. And they need to start listening to us, if they ever hope to learn anything new.

 

I would suggest they start by making contact with the Facebook group over at adults/teens with club feet.  They would have a very receptive audience.

Don't Weight!

Well, here we are once again - holiday season. Regardless of your denominational predilections, we all have to face the music - and the food! Everyone wants us to drop over, bring a dish, or this year, we are hosting, and have to feed the hoards. In the olde days, it was known as the groaning board, but today, we just call it the stuffing table!! Or something like that.

But for us clubbies, we end up every year just groaning. All that extra food is NOT helping our painful tootsies one little bit! But does that exempt us from the feeding frenzy? Oh, hell no! Not in the least. So, all those pounds we struggled valiantly to shed throughout the preceding year? Voila! Theeeeeiiiiirrrrr baaaccckkk! 

What to do, what to do?

There are many tried, and mostly untrue methods, but the one I use more often than not with some success is what I call the "No, thanks!" approach. It works like this:

1. Use the "island" approach to plate loading. This is quite simple - pretend you are a very picky child, who cannot abide to have the carrots touch the mashed spuds, and so on. Make sure there is visible plate space between every item on your plate. By its very nature, you will put less food on the plate! Plus, everyone will think you have OCD, and be extra kind to you. Or, avoid feeding your habit, and thus not be the one to offer you seconds. You see? It works on everyone!!

2. Make each item served the same size. Want turkey? Fine, just make sure you eat the same volume of vegetables. Don't like veggies so much? Then have just a wee little bit, and make sure your mashed taters occupy the same sized space. Excellent portion control strategy. Now, you try it!

3. Skip the bread. In fact, try to decline at least one item from any meal that is pure carbs and/or starch - taters, rice, bread, pastries, etc. I am NOT suggesting you deny yourself holiday pleasures, just be more selective. You will find you enjoy the one's you do have much more.

4. Use the tight belt theory - if you have to let out your belt one notch, you are clearly full. Now, raise your hands, and step away from that table, pardner!! I've got my eye on you!!

5. Learn to tell the difference between being full, and being not hungry. It usually takes us a while before we feel full, but by then, we have already most certainly and absolutely eaten too much. Admit it - we are all just little piglets at heart. But if you slow down your eating, taking long pauses between bites, you will realize more rapidly when you are no longer hungry. Once you do realize that - stop. Drop that fork right now!! Push back your chair, raise your glass of fine CaliforniaItalianFrenchGreekAustralianArgentinian wine and toast your host as the most with a boast about either Coast! Don't forget to smile!

6. A word about noshing between meals. Don't.

7. Conversation and good friends should appease your real hunger. Food is merely the lubricant to engender that process. Remember you wanted to dance after dinner? Think how much better you will dance if you are light on your feet!

OK. Now, it's up to you. Go on, take it for a spin! Handles nice, right? Making Merry with Mary and Mark in the Holiday-o-choice spirit should enlighten, not enheavi-en (OK, not a real word - but it SHOULD be, right?) You have the wheel, you are in control. 

Now, be a mensch - pass that pie!! Uh, sorry, just kidding!!!

Happy Holidays!!

Dream Sequence

So, I had that dream again. You know? The one where my feet are perfect? Yep, that one. Well, imagine my surprise once again awaking from that dream, and damned if it was just another lie. Crud. 

 

Yeah, I have that dream every few years. I get to wear nice sexy Italian loafers, run a mile in less than four minutes, climb Mt. Kilimanjaro, dance with the stars till 5 AM, do every museum in Paris in three days flat, take the grand-kids to some damned theme park for an all-day outing - blah-blah-blah - then get up the next morning and do it all again. No pain. No worries.

Right.

I hate that dream. Just a big tease, but no delivery.

At least when I wake up from one of my flying dreams, I know what to expect - gravity still works. I enjoy those dreams.

A lot.

A Thought Experiment Regarding PTEV Syndrome

First, let me just say this post is a prelude to something I suspect will take much longer and far more detail to explore, but wanted to get the raw idea down before it slips from my increasingly ephemeral mental moorings. You have heard me talk about the issue with our lower leg musculature, how the cell structure is radically different than in non-clubby legs. What has only just occurred to me, in thinking about this at some length, is that the very act of changing/altering our initial TEV toward a plantigrade position, through castings, bracings, and surgeries, may be setting us up for future pain issues because of the very nature of that cellular deformation.

If we look at how muscles work, by stretching and contracting to provide motive power, it is clear there is a level of elasticity that is critical to those functions over the course of one's life. If the elastic nature of these muscles is altered, that is, less elastic, then changing the position of the bones acts to alter the oppositional nature of the muscle groups, as well. This means that some of these muscle groups are likely to be subject to more stretching while the opposing group becomes more contracted, while at rest. In a normal muscle, such a change would be offset within a short period by the ability of the muscles to strengthen and grow. But if our muscles, already atrophied at birth, cannot grow or strengthen as readily, and as seems obvious for some clubbies, not at all, then there is less ability for the muscles to make those necessary adaptations.

This would suggest that the kinds of muscle pains (not joint pains, specifically, but in the muscle bodies themselves) some of us clubbies, especially as we age, experience may be the result of this musculature aspect of post-club foot syndrome. This non- or less-elastic nature may also explain why there is the propensity in some clubby children for regression of the positional aspect of the syndrome, where additional TALs are performed. If the original tendon lengthening or repositioning proves insufficient, perhaps it is not the amount of change that is the issue, but the act of making that change causing even further reduction of elasticity within the muscle body itself. By increasing the posterior group's length, the anterior group is thereby shortened. Both muscle groups, then are being forced to perform something they are poorly suited to perform.

This requires far more research and analysis, of course, but I wanted to put this out to stir the waters and get it down for further consideration.

Mind Shift Ahead!

There is one thing more difficult than dealing with chronic pain and the awful responses we clubbies get from the medical community - our own attitudes and beliefs. We as individuals are shaped by many factors besides our experiences as a clubby. Our communities, families, peers in school, media, the times we grew up in, our country, etc. So our beliefs - about ourselves and the world we inhabit - are often quite difficult for us to challenge and change. After all, we want to be a part of our community, and we already battle how our handicap separates us from that community. It might center around our need for AFOs or different-looking shoes, when we would greatly prefer to mesh with the fashions of our time and locale. Or it might center around how our handicap and the attendant chronic pain limits our participation in activities with our families and friends. It may also be strongly affected by our financial conditions that limit our options for responding to our pain and medical needs.

But however it affects us, we each have to find ways to respond to those forces in the best ways we are able. For some of us, this means often denying we even have a problem, while for others it means dealing with depression, or worse. However we do so, our main goal often appears to be to find ways to avoid dealing straight-forwardly with the fact of our handicap. After all, who wants to have to spend so much of their lives having to deal with this? We would all rather be doing better things, like living life the way our friends and families do.

Denial, however, has no positive impact on our pain or possibly worsening condition. We ARE clubbies - this is an undeniable fact. Thus, we need to shift our perspective, to admit the truth of our condition, and make our lives work with this fact fully incorporated in our daily concept of our self, and how we live this life. This does NOT mean that we do whatever the latest medical consultant tells us we need to do, because we, or at least many of us, know how little these people actually know about our condition. "Well, we COULD do...." is NOT a good answer to our needs. Yet we are, like most humans, conditioned to trust and believe whatever a professional tells us, especially in the field of medicine. The problem is, doctors are themselves conditioned to believe they are always the  expert, and therefor MUST know what the hell they are talking about. They, sadly, are often even worse at challenging their own beliefs than non-professionals are.

But we need to struggle against that tendency. We need to challenge such ideas such as whether to pay for a more expensive alternative that has the potential to really make a difference, or settle for the cheapest alternative that may only make a small difference, or only for a brief period of time. We also need to challenge our desire to wait for the insurance provider to be willing to pay for something, versus biting the bullet and finding some way to pay for it ourselves, rather than forgoing real relief. The truth is, accepting some bureaucrat's NO as something you have no choice but to be limited by is the same thing as doing nothing to help yourself find relief. I have always paid for my own custom shoes myself, both because I know they are the best thing for me, and because fighting with the cretins at an insurance company once was enough. Now, I get what I need myself, rather than allowing myself to be limited to bad decisions by ignorant people.

But I do not pretend this is easy. Money is tight, and coming to such decisions requires information that we may not have, or may not fully understand or appreciate. But the first step to real change is making the decision to not take someone else's NO for an answer, on any level. First, you need to decide, once and for all, that your needs matter more than someone else's limits based on their ignorance. Once you get to that understanding, the rest becomes easier. But you have to get to this first step first. Ask yourself this: "Why do I think I am not worth putting me first in my life?" Then ask, "Who tells me that?" And finally, "Why have I chosen to believe such lies?"

Shifting belief is not easy, and can be quite frightening for some of us. But we cannot avoid this forever, unless we are content to be a victim of the ignorance of others, and captive to the pain and limits you face every day.

It's your choice.

The Limits We Face

This is something I recently posted on the clubby FB group:

To continue the discussion on limits, I think we all need to remember that having limits is not to be equated with being inferior, or less-than. It is easy to fall into an unconscious response to our differences as a sign we are somehow worth less than other people. So much is made in our societies about being a "winner", a high achiever, about physical perfection, about what constitutes "cool." But these are all artificial ideals, and often serve to enforce class differences, rather than say anything true about any one person.

When I deal with my differences, and experience an adverse or somewhat muddled reaction from another person, I have choices in how to deal with their reactions and responses. I can choose to be upset, self judgmental, and depressed. Or, I can use the occasion to educate the other person, or to let them know they may need to seriously reconsider their own values by how I respond. I always feel like I exercise as much control over the situation as the other person, specifically in how I choose to respond. It is likely such people are anticipating that I will have a negative response, or self-damaging response, to their ignorance. But I usually find if I take the opposite approach to what they seem to hope for, I can nearly always fully control the outcome.

My feet may be screwy, but my mind is just fine.

 

How about you? How do you deal with your limitations, especially emotionally? Do you beat yourself up, or struggle to accept seeing yourself as having a handicap? Or have you lept over that chasm and landed intact on the other side?

Dancing the Night Away

OK, so I have restless legs, so what of it? Attended the wedding of a couple of youngsters yesterday, and as always happens, mi esposa wanted to dance. Now, let me tell you that mi esposa is one hot dancer. That's how we met, in fact, while dancing at a Cinco di Mayo party. So I do everything I can to urge her to dance - which usually takes "Hey, do you wa...."? Then I have to run to catch up. Now, if I do everything right, I can usually make it through the event with minimal damage. But "everything right" means: support socks, ankle braces (in my pocket, just in case), a spare pain med (again, just in case,) lots of rest early in the day, dance one dance, sit out the next two, dance another, sit out the next three, etc. Usually works.

Unless the DJ is particularly devilish. Which was the case last night.

Perfect play list. Superb timing. A number of sub-par dancers who needed a good role model. A certain young dude developing a fascination with mi esposa. 

I didn't have a chance.

Did I tell you my wife is one hot dancer?

I'm gonna kill that frikkin' DJ.  

Right after I regain the use of my lower extremities.

What Needs To Happen

You have heard me talk about the need for research, and how poor the existing research is as it applies to post-CF syndrome - well, essentially it's non-existent. But there is one area for which there is a lot of papers in the literature, and that pertains to the muscular atrophy most clubbies have in their lower legs. I say lower legs, and not simply calf, because the atrophy affect all the lower leg muscles, not merely the posterior group - the gastrocnemius and the soleus muscles. And despite the rather large number of papers that look at this issue, the problem lies with the conclusions and focus of such papers. Most are trying to use this aspect, known as the histological aspects - looking in detail at the tissues at the cellular level - to better understand the etiology of TEV. That is, the cause.

Now, i applaud every effort to delve into causation, in hopes that someday, some therapy such as in-vitro stem cell therapy might actually prevent TEV altogether. That would be a wonderful outcome. But such research fails to address some rather important ethical and practical issues - for starters, what about this atrophy and its implications regarding those already born? How will it affect us? Will it become more problematic over time? Are there ways to offset those impacts? What role does this atrophy play for the issue of recurrent deformity, where more and more surgery is applied? Is it possible that the atrophy itself leads to the recurrence? And if so, why? What mechanisms are at play? How can a better understanding of this muscular degeneration inform more predictable outcomes? perhaps there are degrees of deterioration, perhaps the element of the tight Achilles has little to do with the Achilles at all and everything to do with the muscles involved.

But without taking the existing research and using it to ask new questions, there is little hope that any of these questions will find answers, certainly not in the near term. And so we post-CF folks are left to be guinea pigs without a researcher. Add this to the failure of the adult orthopedic or podiatric community to be willing to seriously address Post CF Syndrome, and where does that leave us clubbies?

To fend for ourselves, that's where.

Compression Stockings

Some clubbies have heard about and used compression stockings, or socks. And given how well they work to aid in controlling edema, more clubbies should consider trying them. So it helps to have a better base of knowledge about these essential tools for lower leg relief. And as there are several types, and many manufacturers, it is important to know what you need, and what you can afford.

What is the Purpose of Compression Stockings?

Chronic edema may be connected with many conditions. Edema can act to slow venous return - the process whereby your veins act to pump used blood (de-oxygenated) back to the heart for recirculation. Compression stockings can act to reduce edema by acting as an external pump to help cycle the edema out of the lower legs and permit more effective blood flow. Compression stockings come in two primary configurations - gradient, and uniform. Gradient stockings start quite tight at the foot, and become gradually less tight as they go up the leg. Gradient work best with:

• Tired, aching, heavy feeling legs
• Leg swelling
• Varicose veins
• Venous insufficiency
• Post-thrombotic syndrome
• Healed venous ulcers
• Active venous ulcers
• Lymphedema

Uniform grades work well with basic chronic edema, but if there are other complications, such as poor venous return (the ability of the veins in the lower extremities to pump the blood back toward the heart), then gradients are a better solution.

  It is usually recommended that you consult with your doctor before wearing compression stockings 20 mmHg and above. If you have arterial circulation problems, please consult with your physician before wearing any level of compression.

When Should Compression Stockings NOT be Worn?

Contraindications (medical conditions in which compression is not recommended):

• Ischemia (advanced arterial disease) of the legs
• Uncontrolled congestive heart failure
• Untreated septic phlebitis of the leg

Compression stockings should be worn with caution when one has:

• Skin infections
• Weeping dermatoses
• Allergic to garment fabric
• Impaired sensitivity of the limb
• Immobility (confinement to bed)

 What Kinds Are Best For Me?

First, you should have your doctor recommend the best type (note: not brand, but type.) You should also be aware of whether you have a latex allergy, as some brands come in latex. But there are many brands available without latex, so don't worry too much about that issue.

Another factor is texture and feel. Some are very hosiery-like - smooth and thin, whereas others are more sock-like, with a good cotton feel, closer to regular socks. So it makes it easier to get the feel you are most familiar and comfortable with.

They also are available in at least a few colors, most often beige, black, and brown, but there are a few makers with a slightly broader selection. They are also available in both knee-high (the most often used) and thigh-high and panty-hose styles. These last two are for specific medical issues, so most clubbies will be looking at the knee-high variety.

Cost is a big factor. The original brand of compression stockings was Jobst, and these are still among the most expensive. But there are other makers, at lower price ranges, so shop around. You can find pretty much every kind on Amazon.com, and that is about the best place to do your comparison shopping, so I suggest starting there (this blog makes no money through Amazon.)

Care

There is one big caveat in the care of your compression stockings - never put them in the dryer. Machine washing is fine, but always, always hang dry your socks/stockings, or the elasticity will begin to fail rather quickly. Your stockings should be as hard to put on the tenth time as they were the first time.

Yes, they ARE hard to put on. And you should always put them on first thing in the morning, while your feet are at their least-swollen. This will make them easier to put on, and will allow them to better control your edema right from the start. Just roll them up and stretch them over your toes and work them incrementally up your feet and calves. If they are a little long at the knee, just fold them back one fold only, so you don't pinch off too much behind your knees. Be sure to get all the wrinkles out before putting your shoes on. All compression stockings have a looser weave at the toes and the heel, to prevent cramping, so be sure you have those areas adjusted well before putting on your shoes.

Use of lotions and creams with compression stockings?

If the stocking is latex free, it is perfectly safe to use lotions or creams. In fact, it is especially important for people with lymphedema or venous insufficiency since daily skin care and moisturizer is so important. Applying lotion at night will make donning the stockings easier. If the stocking contains latex (some of the Jobst SupportWear brands, for example), do not use lotions or creams. Heat, ultraviolet light, copper containing products, hydrocarbons and all petrolatum containing creams and ointments affect garments that contain natural rubber latex yarns.

Sources

There are many sources for compression stockings, Amazon being only one. I suggest Googling the term "compression stockings" and looking for both on-line resources, and local sources, as well. The best way to start is to buy one pair locally, so you can get a sense of the feel of the material. You will pay more this way, but you can buy all your other pairs on-line and save a bundle.


Be sure to break them in, or rather, break in your legs to them. Wear them every other day at first, until you get the feel for them. But you should be able to wear them regularly within a few weeks. I suggest buying at least enough pairs to allow you to hang dry some without being caught with none to wear. I won at least ten pair, but you may feel OK with fewer.

And remember to talk to your doctor about these first. You don't need a prescription, though I have heard of some stores demanding them. But I have never encountered this issue on-line. If you do, please let me know on what site, and I will warn everyone about them here.

Psst! Look, Over There, To Your Right!!

Yep, right over there - that's right - the Survey!! haven't filled it out yet? It's fun, it will help other clubbies, it makes you a participant and not merely a spectator, and, in the Olympic spirit, a Real Winner!!! Help us get to 100, 200, 300 or more responses, from the only real experts there are on post=CF - YOU!! Come on - what are you waiting for? An Invitation? Well, here it is!! Now, you don't have anything else to wait for!!

Do your part today!!

Another Great Blog!

Just came across this great blog, http://thegimpparade.blogspot.com/ and had to share it. Not just for clubbies, but all people with challenges. I strongly recommend you read it, and go back often. Excellent news, critiques, humor and outrage, all in exactly the right amounts. If you do drop in, tell her where you found out about her blog!!

Then go visit http://blobolobolob.blogspot.com/ Diary of a Goldfish - another great blog for folks with a difference engine in their lives. Trust me!

First Annual (I Hope) Post-Clubby Dinner and Get Together

So, for those clubbies not on the Facebook group, as well as the casual passers-by, I am announcing the first Annual PCF Dinner and Hob-Knob, to be held this year in San Francisco, on August 18. The day will include a visit to a real therapeutic shoe maker, and will include an informal gait analysis, and then, dinner at a waterfront restaurant here in San Francisco. The say will begin about 2 PM, with dinner around 6. If this is a date you can make, please contact me by leaving me an email address and I will email you the particulars. All clubbies welcome, and your partners, as well, though I will handle the cost of dinner for the clubbies only (somewhat limited in the old wallet, so I have to keep it in reason, but the restaurant is within reason, and the food is very good!)

I hope you can make it, but if not this year, make early reservations for next year now! Hope to see you on August 18, 2012!!

The Psychological Aspects of Post Club Feet

The physical manifestations of post-club feet are well-known to most clubbys. But the psychological aspects are sometimes a bit harder to sort out. There are the elements related to the chronic pain, of course, and to the aspects of living with a handicap in general. But there are often other, better-hidden elements that might take years to erupt, or may be so entwined with other parts of one's life that they are harder to discern and address when they do make themselves known.

Like most children with a visible disability, clubbys are often the target of bullying and disparaging comments while in school, and outside school among their peers. These issues are getting better coverage in the press lately, but mostly in their generic aspects, i. e., any bullying of any child. While this is a good start, the impact of these attacks on a child with a disability is often a deeper and more insidious harm, and may need addressing by professionals who have taken the time to truly focus on such children.

Another psychological impact is that of the family of such a child. While many families are outwardly quite supportive and active in advocating for their disabled child, there are many behaviors that may be left unaddressed that impact their own child. There are special burdens, both fiscal and social, placed on such parents, and small resentments may end up being expressed in ways the child can poorly process, but does associate with themselves and their disability. Some of this may take many years before its impact is known even to the child, by then an adult themselves.

Even worse are parents who cannot make the necessary leap to seeing their child as worthy of the extra efforts and love most handicapped children need, who unconsciously or consciously reject their own child, or make no effort to hide their resentments of the amount of time and money and extra attention their child needs. The damage such parents can do is significant, and has great implications for future psychological dysfunction in the adult dealing with post-club feet.

There are of course many things that can impact any disabled person psychologically, such as the failures of the medical establishment for providing answers to chronic pain and continual progressive deterioration; the attitudes the disabled face from government bureaucracies; the roadblocks to mobility and access to the things most people take for granted; and the list goes on. For any person with a disability, these are common-place realities, and quite often, they also face disbelief on the part of the able-bodied as to the impacts of these roadblocks.

From feeling we may have "broken" what the doctors supposedly "corrected", to worrying about how we will meet the demands of aging with limited resources, while facing the very real probability we will need even more medical care than the typical "normal" person, the psychological impacts of Post CF are very real, and we need to find ways to address them, just as we seek ways to address the physical and social aspects of our certain futures. To ignore these aspects of life as a clubby is to sweep reality under the rug - one day, we are going to have to deal with what we swept under, before it sweeps us under first.

The Truth Is Out There - But Finding It Is Another Matter!

The one seeming constant pertaining to all cases of children born with TEV is the assurances given to the child's parents - "not to worry, it can be corrected." Besides being patently a false statement, both in terms of what the long-term realities are still likely to be for the child, and in terms of the statement prima facie, it is also a very subtle form of distancing. Let's look at the last part of this statement first - "it can be corrected,"referring, of course, to the foot or feet so affected. Not "your child's feet can be corrected," but "it."

Of course, this means "the deformity." By de-personalizing the problem - de-linking it from "your child," it helps both the doctors and the parents see the TEV as an affront, and invasion, an alien artifact that can, and will, be eradicated, and thus, allow "your child" to live a normal life. I would contend it is this de-linking that permits the pediatric medical community to blithely proceed treating TEV as merely a positional deformity that can be "fixed" with no concern for looking more closely, at long-term outcomes, and how they may better inform pediatric treatments for future generations, and at the yet-to-be-explored elements of TEV that suggest there are more than mere positional elements involved with TEV. It is those non-positional questions that, in my view, come in to play later in life, that contribute to increasing pain, joint breakdown, muscle weakness, and a host of biomechanical compensatory mechanics that are playing havoc with many post CF people's lives.

TEV cannot be de-coupled from the child and adult who suffer from it. We live with it's effects every day. Are some luckier? of course. But the percentages that still suffer with the long-term outcomes are significant, and have been seriously disenfranchised by the medical community by the impact of this idea that our feet were "corrected" as children. This is a lie, and a damned lie, at that. Our feet may have been reconfigured, they may have been re-positioned, but they are not "corrected." It is time this term is fully dropped by the pediatric TEV practitioners out there, to stop lying to parents, who, by being so mislead, pass that lie on to the child, who when they do begin to experience problems as an adult, are often made to feel it is their own fault, that they somehow "broke" what the doctors had "corrected." The psychological impact of this practice hurts the child, the parent, and in my view, the entire medical community. The medical community is harmed by this practice because it causes them to have a false sense of power, a badly misguided approach to deepening the knowledge and research and improve the outcomes such children deserve.

The words we use about something matter, and this is the best example of this truism I have yet to find. While I understand the rationale behind the choice of this word, it is a patently false, and thus, harmful basis for continuing its use. Will parents be less convinced to proceed with treatment suggestions? I doubt that very much. Giving parents an honest appraisal of their child's future outlook will permit them to feel better prepared for any eventuality, and that, in turn, will help them better prepare their child for their more possible future options.

That the statement is prima facie false should be obvious, but only if the medical community really starts to do the substantial research required. recent research that shows there are significant changes to the muscles of the lower leg suggest that research needs further exploration. Does this change extend to the upper leg? Does this cellular degradation, grossly manifest in the atrophy seen in nearly all cases of TEV, bear any resemblance to other conditions? This question is especially pertinent in the face of newer knowledge about the chromosomal links to other conditions, and to the presence of TEV in other disorders such as spina bifida, as just one example. Until this research is done, the medical community cannot with any certainty dismiss the idea that TEV is far more than a positional abnormality, and thus, use of the term 'corrected" remains false on its face.

I call upon the medical community to begin this necessary work. Until then, I demand that this much-abused term "corrected" be dropped, that the truth be told - that "we do not with any certainty know what your child's long-term outcome will be. We can only speak of odds, not facts."

It is time to "correct" this problem.

Adios, Sue, Farewell, Lucia

Clubby-dom has lost two very special members over the past few months - Sue Tourle, of Bournemouth, UK, and Lucia Almeida, of Brazil. Both were strong advocates for better recognition of clubby needs through better disability rights and broader medical research and treatment options. And both made every effort to reach out to other clubbys, to share their own life stories, their humor and most of all, their compassion for others. Both have also made many contributions to this blog, and for that among all other reasons, I am grateful to have known them, despite never meeting in person.

Their loss has made me realize that the Web has extended our own personal boundaries across the entire planet, has made us neighbors in a sense that was not possible just ten years ago. That so many clubbies have now come to meet others like themselves, often for the first time realizing they are not alone with their suffering and their struggles, and having a completely new idea of who they are in this world because of this realization. Sue and Lucia, by extending themselves so much to other clubbies, made it so much easier for others to do the same. That is how a community grows, like virtual pot-lucks, virtual quilting bee's. We share our lives, and grow closer in the process.

That is why it hurts so much when we lose a member of our community. It took us so long to find each other, and then, too suddenly, we are asked to let them go.

Peace to them both, to their families, and peace to clubbies, everywhere.

May is World Foot Health Month

May has been selected for many years now as World Foot Health Month. But unbeknownst to the powers that be, for clubbies, foot health is a daily issue. We think about our feet far more frequently than most people, not because we like to, but because we are forced to. pain, poor footwear choices, physical limitations - these and more tend to keep our feet foremost in our thoughts. And sometime this can be quite annoying, right!? But there it is - our feet, our lives.

But this does not necessarily mean we are all equally good at taking care of our feet. How many of us have issues with nail fungus, or athlete's foot (tinea pedis)? As we age, do we know how to deal with chronic swelling, or edema, effectively? Do we all know what compression stockings are, and how to choose the right sort for our particular needs? How about selecting the best shoe gear, or how to know if we would benefit from orthotic inserts? Or even if the orthotics we do have are doing the best for us? If we are also dealing with diabetes, do we have the best handle on watching for the early development of ulcers, or what to do if one actually begins to develop? How about hyper hydrosis - very sweaty feet?

Foot health does not occur by accident - you have to seek the right information, and apply it properly. Consult with your podiatrist or chiropodist regularly. If you don't have one, seek one out, develop a long-term relationship with that specialist. The better they know your feet, the better they will be able to help you keep your feet healthy for the long haul.

Remember - you've miles to go before you sleep - might as well do it on happy feet!

Looking Ahead - Options For Clubbies

Aging has it's own downsides, without adding another disability to the mix. But when a clubby faces the normal aging issues on top of their decreased muscle strength, their increased joint arthritis, and other elements of their post-club foot/feet issues, then the situation becomes far worse. Mobility issues, the ability to remain in the work force or the need to find alternatives to the work one has done for many years, increased medical interventions - these and more become additional baggage we have to carry.

We will need to look at various types of health aids - grabbers, canes, wheelchairs, scooters, etc., etc. And how to deal with the difficulties these changes will bring to our relationships with family and friends. But most importantly, how to deal with what these changes do to our self-esteem, self-image, how we change our responses to what other people throw in our paths. None of this is simple - but we are clubbies, and that almost goes without saying, right?

So, if you are finding yourself heading in these directions already, what are you doing about them? How are you dealing with these changes? Please share them here for other clubbies - we need all the help we can get.

Another Plea For Your Help

Well, its that time of year again, where I, illustrious poster of blogisms, ask you, illustrious reader of posted breakfast snacks, to contribute your knowledge to the clubby universe! As always, nobody gets paid - least of all moi - but everybody gets rich!! All you have to do is contribute a few items of wisdom, such as:

>Shoes - where do you get yours? Are they custom made? How do you like them? How much do they cost? How reliable and consistent is the facility where you get them?

>Orthotics - where do you get yours? How well have they worked for you? How much did they cost? How many times did you need adjustments made until they were comfortable?

>Doctors - who do you see, and what are their specialties? Do they always try non-surgical options with you first? What options do they offer?

>Other - Where do you live - country, city? How far, on average, do you have to go to get the help you need? What groups do you belong to - locally, and on the Web? Do you get the support that you need?

So, there you go - we aren't asking for your money, your passwords, your waist size, or your inner-most secrets - and we don't really want them, well, maybe the money - ;-) All we want is to build up the available resources for other clubbies. Hey - nobody else is making clubby life any easier, so us clubbies will have to do it for ourselves.

Starting, of course, with you!!

Correction - There is No Such Thing As "Correction"

When it comes to talipes equino varus, the big lie told by the medical profession to parents is, "Don't worry, they can be corrected." Now, what the parent hears behind this word is "cured" and "fixed." The implication is that by altering the position of the foot, all will be right. Your child will be "normal." And this of course brings relief to the minds of the parents, and they put their trust in the folks in the white coats. But there's a problem with this situation - a big problem, in fact.

Whether surgical or non-surgical, older methods or Ponsetti, the re-positioning of the foot is merely a reconfiguration, not - listen carefully here - a "correction." To "correct" means to put right, to return something to it's original or intended state. CF treatments do not do this - they do not return something to its original state (with a child born with CF, that IS the original state,) and they do not "put right" such feet to their "intended state." If this was the case, then the atrophy attendant with CF would resolve. There would be no residual joint misalignment that become increasingly pathomechanical over the years. The child would not grow up, in more than 68% of the cases, to have painful arthritic changes before they are fifty, sometimes even sooner. (This is just one estimate, from the Dobbs study. There are differing estimates, but the best is from the Ponsetti study that shows there is still a 15% probability of a poor long-term outcome.)

So this persistent use of the term "corrected" is not merely a lie, but a damned lie, as it misleads parents, others in the medical profession, government policies, and especially, the child, into feeling anything to the contrary is untrue. This makes government policies based on falsehoods, parents misleading and disbelieving their own children, other medical professionals unsure of who to believe, or whether their patient is merely malingering, and the child growing up to feel that anything that goes wrong is their own fault, that they somehow "broke" what the surgeon's claim to have "corrected."

This must change. We must demand that the pediatric orthopedists and podiatrists who work with talipes children cease using this term. They are in fact re-aligning, reconfiguring these feet, and that is what they should be calling it. Until they truly figure out a real cure, they need to stop claiming such. And we post-clubbies need to hammer that point home, again and again.

It is the medical profession that needs to be "corrected."

So, What's Up With Those Orthotics, Eh?

If we think of the shoe and it's two primary components between your foot and the ground, namely, the insole and the outsole, as "translators" between your feet and the ground, then orthotics are the equivalent of a translator of a new language. This is because they alter the relationship between your feet and the ground in more significant ways than the flat surfaces of the insole and the outsole of the shoe. Where your feet apply too much pressure, orthotics redistribute that pressure, and the forces that cause the pressure, so that both your weight and the forces - shock, or impact; and torque, or rotation (with it's sidekick, shear forces) - are supported and modified toward a more efficient set of actions. One of the primary goals of functional foot orthotics is to reduce excessive pronation where that pronation is causing pathology, while another is to improve the posture of the foot during heel strike and through mid-stance phase of gait (when the foot is fully on the ground.)

But these are not the only aspects of a functional foot orthotic as they might be applied to someone with post-club feet. With PCF, it is seldom possible to approach the biomechanics of such feet the same way one approaches less pathomechanically defined feet. But the tools can still be used even if the outcome is often significantly different. The primary consideration should be around three factors: sufficiency of range of motion of the subtalar and midtarsal joints; degree of arthritic changes present; and degree and duration of inflammation or edema. Too little motion available reduces the functional effectiveness; significant amounts of arthritis suggest the need to reduce motion further, not enable more; inflammation especially long standing strongly influences the nature of the surface of any orthotic as to how the foot responds to pressure. A hard device will be less well tolerated than a softer one, or at minimum, a softer material on top of the more rigid material of the orthotic itself.

This brings us to the function of materials as they apply to both the devices and to the foot. You can easily suspect I will frame this in terms of a trade-off, and you would be correct. Materials have to be considered on the basis of their strength, their moldability, their longevity, and their memory. Lets talk about this last item first - memory.

In materials, memory speaks to how well a material will return to its original shape after each "deformation." Think of the pillow you sleep with - when your head lays on the pillow, it "deforms," that is, it conforms, or moves away from, the forces applied to it by your head - it's weight and its shape. When you take your head off the pillow, it returns (depending on the material used to fill that particular pillow) to its original shape. The speed of return, and the degree of return, are both components of the material's memory. If it did not return to that original (or closely) shape, it would rapidly become harder and less comfortable, and you would wish to replace it much sooner than you had been led to believe you would have to. Likewise, if it took several days to return to the original shape, the results would be nearly the same, as far as your comfort and your expectations. These issue apply as well to the materials used to cover and to form your orthotics. They must show a high degree of memory if they are to be worth using.

Longevity is a property of memory, as well, but it also is dependent on other aspects such as chemistry and heat. The environment inside our shoes is fairly tropical, and often quite acidic, as well. Our body generates heat, and the friction of our feet inside our shoes generates heat and moisture. A part of the moisture is sweat, and sweat has many chemical components, salt being one of the more corrosive. all the materials inside your shoes - whether shoe or orthotic - are subject to these chemicals and the moist heat. And one of the side effects is the intrusion of fungal infections, that also contribute to the in-shoe environmental impacts. The other two components affecting longevity of materials are one's weight, and one's biomechanics. So you can see that, tradeoffs are inevitable - there is no such thing as the perfect material, no matter what the advertising might say.

Moldability, or the tendency of a material that permits it to be molded into a new shape, through heat and pressure, and then to retain that new shape with little long-term deformation, is critical for most materials used to make orthotics. We can differentiate materials that can alter their shape through heat and pressure from materials that are shaped via mechanical means, such as graphite, which uses a chemical process, or milled plastics, which start as a block of raw material, and then are shaped by a milling process. Both of these last two approaches have gained in usage over the past decade, but heat molding is still used for many orthotics.

Strength, as you might imagine, is a product of all of the above. Strength refers to the original material's characteristics to resist change, and to how that resistance changes after the material is shaped into the final device, as well as the environment the material must deal with every day. It also refers to the material
s ability to resist tearing, or breaking under a load.

So consider how difficult it is to achieve the right set of trade-offs - there are anywhere from 3 to 4 different materials in use in any given pair of orthotic devices. There is the primary formable material - plastic (of many different types, depending on the approach desired by the doctor) or carbon graphite. Then there is the post, or heel stabilizer material, and the top cover material, and possibly additional material for the extension to allow for a plantarflexed metatarsal head, for example. Each material chosen for the given part of the overall device must be chosen based on how the various parts are supposed to act. The top-covering material must be the best at resisting moisture and acidic conditions, as well as being somewhat resistant to fungus. It must be able to conform to the curvature of the heel cup portion of the body of the orthotics, and it must have a decent longevity. It must offer some cushioning without taking up too much space in the shoe. And it must not contain chemicals that some may be allergic to, such as latex.


More Than The Sum of Its Parts

An orthotic device is more than its material composition - it must also be designed and formed properly, and it must fit within the shoe properly. If the device, once ensconced inside the shoe, makes the shoe too tight to allow the foot to fit inside with comfort, it won't do you much good, so the shoe and orthotic must be considered as a whole. And the type of shoe the device is worn in has a significant impact on the success of the orthotics, as well. if you want to wear 4 inch heels, well, good luck with that - they most likely won't fit in the shoes, your feet definitely won't fit in them, and the position of your feet will make the devices useless, which pretty much wastes everyone's time and effort in that particular project.

So picking the right shoes, if you don't require custom-made shoes, is a matter of several factors - extra depth for the inclusion of the orthotics; good toe room; a stable insole material that will support the orthotics and your feet without breaking down quickly; a well-balanced outer sole; and a good closure system - laces, or velcro, or straps - loafers and other types of slip-on shoes will have a less effective outcome because the foot will likely slip off of the orthotics inside the shoes. For some, who may require better ankle support and who need to control their subtalar motion better, a high-top shoe will be a better choice. Which brings up the perpetual issue of fashion.

Anyone with significant foot problems, CF or otherwise, would most like to be as much like everyone around them as anyone else does. Who wants to call extra attention to the source of one's pain? But there are realities that cannot be avoided - what makes some shoes fashionable is what makes them problematic for people with significant foot problems. Again, it's about tradeoffs, pure and simple. For me, it has always been about comfort over fashion. I tend to think people look best when they are happiest, not because they have the latest fashion trends writ large. A person wearing the latest fashion, yet walks in such shoes in great discomfort, tends to cause any beauty they possess to go missing. IMHO, that is.\

Hopefully, this brief overview of orthotics and the considerations that must go into their construction and their use has given you more tools when communicating with your doctor and/or orthotist. It helps to know what to ask, and how to explain where things could have gone better in your previous devices, so as to get improvement from one pair to the next. Us clubbies, unfortunately, should not expect a perfect pair the first, and likely as not, even on subsequent pairs of devices. We have a very difficult set of conditions compared to people with lesser foot problems, and therefore we are often more the expert on our own feet than most doctors are. That, as they say, is just the way it is.

Side-Steping - It's Not Just About Forward and Reverse Anymore!

So - tired of moving forward? Good - that can get quite boring, right? But don't think that just because you're feet are moving forward they aren't also moving side-to-side. Well, it's actually a lot more complicated than that. Unless you want to walk strictly like a robot, that is. You see, we humans have evolved to move in many directions, but especially forward - how else do you expect to get away from a sabertooth? You have to be able to run both fast, and possibly, for quite a while. This means you had better evolve in several directions - for strength, for speed, and for efficiency - energy efficiency, that is. You wouldn't want to run out of steam at the last second, would you? because that might be really bad - for you, not for that big pussy-cat!

Just as the foot needs to be able to adapt to the changing surface of the ground heel to toe, so does it need to adapt laterally and medially. The foot, in fact, is essentially an adaptable triangle, with the heel being one apex, and the first and fifth metatarsal heads being the other two. It is the job of all the other bones, joints, muscles, ligaments and nerves to make those two adaptable triangles work as efficiently as possible to keep the entire organism they support moving as smoothly and efficiently as possible. But for that to happen, they need to be interact properly with the other mechanisms proximally - that is, above them - so, the ankle, lower legs, knee joint, femur, and, most critically, the hip/pelvis/sacral components. Each plays a role that both affect and is affected by the joints above and below them.

And besides needing to interact according to some pretty basic mechanical concepts, they need to do so with a fairly high degree of symmetry - the right and the left have to work in near-mirror opposition. They have to do this with the nervous system firing in efficient and repetitive sequences, over and over, for your entire life. If just one part fails to work properly, however, the entire shebang can go off-kilter pretty quickly - just look what happens when you do something pretty basic like bang your shin on the coffee table!

First, you will hop on the un-banged side until you can sit down and rub the new contusion. When you are finally ready (no matter how reluctantly) to attempt to get back on your feet, you will try to put less weight and motion on the affected side, and thereby, limp. Limping is the most basic form of compensation - no, not like a paycheck, sad to say, but compensation as a method to relieve the temporarily impacted part. Now, odds are, you won't be limping very long, so unless you already have your back out of joint, this type of compensation - by limping - won't have any long-term negative impacts, and will only involve a few joint segments. But for this brief period, your body will still follow some basic rules until it is able to move without pain. At which point, you will go back to your "normal" way of ambulation.

Now, note I said "unless you already have your back out of joint," above. If you are already compensating for some other asymmetrical musculo-skeletal defect, then adding another level of compensation can have a decided impact on the pre-existing levels of compensation, possibly making the original issue, in this instance, your back spasms, much worse, which can really muddy the waters when the body works to deal with the new reason for additional compensation. But again, the basic rules apply - inner ear balance, and a level visual horizon.

But regardless of the reasons, compensation is largely an unconscious response and reaction to anything that modifies the symmetrical nature of human gait. It might start off conscious, as in the limping example above, but that is usually only the case when you respond to immediate trauma. The matter is, however, quite different when the asymmetry is from a birth defect, disease process, or early-infancy etiology (cause). Then, compensation is slow and steady, and can be influenced by a variety of other factors as to the degree of compensation, how many levels of the body it impacts, and what compensatory-related pathomechanics may result over time.

For our concern right now, lets just consider what happens when one foot is slightly different in the range of motion than the other. Say, your first ray - the first metatarsal and the big toe, or the Hallux. If you have a higher range of dorsiflexion and plantarflexion of the first ray on one side than the other, that side is likely to have a higher degree of pronation than the opposite side does, and this extra amount of pronation can have some pretty complicated compensatory reactions. (Dorsiflexion is movement upward, or toward the joints above the joints in question - plantarflexion is motion downward, toward the ground. So when you raise your big toe, or Hallux, you are dorsiflexing it, and when you point your Hallux downward, you are plantarflexing it. Just another little service we supply here at Definitions-r-Us!)

OK, next time, we will follow this problem in greater detail. Why, you ask? Why do I need to be confused by all this detail? Well, if you want to understand your own feet, and you don't want the medical professionals you have to deal with to hold all the cards, having a working knowledge of how your feet work - or don't - will put some of the power back in your own pocket. The aim is to enable you to understand your feet, your footwear, your orthotics, and why they work, or don't, and what you can do to make sure they do work better. And you should definitely consider asking questions - having more knowledge helps you ask better questions.

Even if it's just to fluster the doc!

Your Shoes, Part Deaux - Translation and Mediation

To continue with the sole and heel a bit, it helps to think of the foot from the point of view of the ground itself. You leave a real impression on it, you know. Well, at least when it's the bare earth. But there are several things that occur when you take a step, besides what your body appears to be doing. First, there is the force of gravity. When your foot hits the ground, it does so with motive force (that's the part you put into it,) and gravitational force (that's the part gravity's force upon your body adds to the mix.) You might think the earth doesn't notice such an insignificant force as your stepping on it, but in fact, it does so through something called the "ground reaction force." Essentially, this is the effect of you pushing on the earth and the earth pushing back. And it is this ground reaction force that helps propel you on to your next step, as well as contribute to the responding shock wave that occurs as your foot impacts the ground. Various factors can amplify or reduce the degree of impact - body weight, shoe materials, heel height and shape, and your specific biomechanics.

It helps to view the heel and sole of your shoes, and, when they are included in the mix, your orthotic devices, as mediators or translators between the shape and composition of the type of ground you are walking on, and your specific bio- or patho-mechanics. That is, these interceding materials (sole, heel, orthotic) either reinforce the interaction, or change it. Think of what happens when you walk on a sidewalk that is tilted toward the street, as most are (to varying degrees.) If the street is to your right, then your right foot is lower than your left relative to perpendicular - you are no longer walking at 90 degrees to the earth, but offset by x-degrees. And, because you are bi-pedal, it forces one leg into a longer relationship with the ground, and the other leg into a shorter one. Of course, you could try to walk at 90 degrees to the tilted sidewalk, but that is not a simple proposition (I'll explain this more later.) The altered shape of the sidewalk has changed your entire biomechanics - temporarily, of course. But for the most part, our bodies can adapt to such a (relatively) short-term change - we are an adaptive animal. And it is the way our bodies were evolved to deal with uneven surfaces that makes us unique among bi-pedal creatures.

But here's the problem - we walk on uneven surfaces less frequently than on hard, flat, unyielding surfaces due to the modern world's obsession with paving and other materials to "manage" our interactions with the planet we walk upon. So that great adaptive mechanism of our body deals less with continually changing forces and more with repetitive forces. Concrete, wood, tiles, etc., all produce more direct and harsh ground-reaction forces than the bare earth ever does. And, we pay a price for this with every step we take. When we add to this mix poor biomechanics, as we clubbies are pretty good at doing, we have even more negative impact - on joints, muscles, tendons, ligaments - and this can lead to early arthritic changes due to this "translation" of force and response. But what it we insert something between our feet and the ground? Let's start with our shoes.

As I said in the last post, the heel raises your rear foot higher than your forefoot. It therefore changes the relationship of your body's center of gravity (COG) relative to the ground - it shifts the COG forward. This causes your body to make certain adjustments, all quite subtle, but clearly measurable. First, you bend your knees slightly, which per,its your pelvis to settle back a bit, thereby keeping your spine aligned perpendicular to the ground. If your body didn't make these adjustments, you would feel like you were always falling forward. Obviously, that would be hard to tolerate for very long. It turns out there are two things the body must maintain according to their specific original designs - our inner-ear balance, and our visual horizon line. If the visual horizon appears un-level, we will always adjust our posture and gait to restore this visual perception of the horizon - side to side, as well as forward and backward. That 90 degree relationship to the ground is critical to our being able to function in relative comfort, so the body is designed to compensate in many ways to maintain that relationship.

As for our inner ear - if you've ever had the misfortune to have an inner- ear infection, and get vertigo, you will understand quite easily why it is so important. If our "vestibular balance" is thrown out of whack by vertigo, we cannot properly perceive where the ground is from one step to the next. So too should our biomechanics get off-kilter, and we will adapt, or compensate, in order to eliminate this imbalance. So by changing the relationship between the ground and the body, via heels, orthotics, or via the shape of the ground, our body uses this idea of compensation to mediate that relationship.

Try this little experiment - tape some materials, say, some stacked cardboard, to the sole of your shoes - same amount, both shoes, but not to your heels. Use enough to make the soles higher than the heels. Now, walk around the room a few minutes. What do you notice? Your knees? Your hips? Your back? How about your balance - what happens there? What this does is to reverse the usual experience of having your shoe's heels higher than the soles, and now you can see the demands any change to your relationship to the ground makes on your body. But don't continue this experiment too long - it will actually cause your kees to "hyper-extend" and can cause some real issues over time. back in the 70's, a shoe called the Earth shoe tried to convince everyone this was a better way to walk, just because that is how your foot acted when you walk on the beach. But how much time do you actually spend walking on the beach?

OK, next time, we'll look at what happens when you alter the relationship between your body and the ground side-to-side. For now, you have enough information already to do your own experiments -  observe how you walk, and try to get a sense of how one side of your body might respond differently than the other side - more impact at heel strike, more or different muscle use on one leg as compared to the other. Observe your pain - is it greater in one area on one foot than on the other. If you are a uni-clubby, this should be an easy experiment, compared to us bi-clubbies, but even with bi-CF, there will be some differences. See you soon.

Are those Shoes on Your Feet, or Are You Just Fixin' To Dance?

OK, here we go with another "what the heck IS that, anyway" post. Most people think of shoes as something they buy at a store, or on-line, and to make themselves acceptable in mixed company - or not, depends, I suppose, on one's particular proclivities. For some, its all about the sexy, while for others its all about the function. That's one of the things that makes shoes somewhat problematic - we want them to "do" things they can only do in our imaginations. But the bottom line (an obvious pun when we speak about shoes) is the issue of utility and function. We'll leave the sexual aspects for another post (and then, only if you ask real nice.)

Until about midway through the Roman Empire, shoes were essentially not much more than flat sandals, of moccasins, or mukluks - somewhat climate-defined coverings to protect the foot from the harsh touch of the earth, and the often harder touches of cold and wet conditions. But sometime in the middle of the Roman Empire, some wise fella had a brainstorm - if he added extra material under the heel portion of the sandal, thereby elevating the heel a small amount higher than the rest of the foot, those hearty and bloodthirsty Centurions could out-march pretty much every barbarian horde in the known world, and be less fatigued by the time they needed to raise their swords and lop off some body parts. This was the first known shoe modifications with a clear, and quite effective, functional outcome.

Now, history shows that shoes began to really go to absurd lengths, er, heights in the Middle Ages, with some shoes recorded as high as 20 inches - the original platform shoes. And even today, the high heel remains one of the mainstays of fashion, and as fraught as ever with sexual subtext. But the raised heel has also become something even more utilitarian, and depending on design and basic shape, can provide significant advantages for people with a wide array of foot problems. They can also, as we will see, create foot problems, and we will explore this, as well, in future posts.

The heel, being named for the part of the foot where it is most closely aligned, serves not merely to elevate the rear part of the foot over the level of the sole, but also serves to either increase or decrease the shock wave of the heel when it strikes the ground. It can do this based on shape and on the materials from which it is made. The primary problem is, it can do one or the other really well, or it can do both, but less well. But it can seldom do both really well. This is because there is a trade-off, between the need to cushion against the impact, and the need to remain stable side-to-side so that the foot is not unbalanced as it transfers the load of the body from the heel, to the midfoot, to the forefoot, and then allows the heel to leave the ground in preparation for swinging through to the next phase of gait. Too soft a material will cause poor stability; too hard will transfer more shock. Therefore, a trade-off is the primary determinant for the design of the heel.

Next time, we will look at materials, used to make the heel and sole of shoes, and how various materials impact functional outcomes. And remember - if you have any questions, just post them in the Comments section. Till then, don't forget to dance!

Body Is the Bus: Know Your Mechanics!

Problem: Adult post-club feet

Solutions: As proposed by the medical community:

1. Fusion
2. Tendon surgery (any kind)
3. Orthotics
4. (rarely, apparently) custom shoes with rocker soles
5. More fusions
6. Pain medications
7. More pain medications and fusions.
8. Wheelchair
9. Amputation
10. Did I say fusions?

With the exceptions of Number 3 and Number 4, all other choices are what can only be called Devil's Bargains. The thin number of studies that look at long-term outcomes all conclude that the more surgeries done, the worse the outcomes. The Ponsetti method, while a great leap forward for the pediatric treatment options for CF, have no impact on adults with post-club feet. Yet I see no evidence of the medical community showing any interest in getting creative with non-invasive treatment options for us adult clubbies. All I see is the oft-quoted definition of insanity - just keep doing what has proven ineffective again and again in hopes of getting a different outcome. The outcomes currently can be described in one word (for the most part) - pathetic.

I would try to launch a letter/email/phone-call campaign at the medical community by clubbies everywhere to agitate for a change to this near-criminal neglect, but I doubt much would happen, especially by the act of asking for a change to the status-quo. I think the only truly effective way to make this situation change is for all clubbies - those in chronic pain, and those who either have yet to reach that point, or even who've had moderate success - to start a serious dialog with their various medical practitioners and support or ancillary professionals (PT, massage therapists, etc.) That dialog should hold a tone of demand - for clear and well-researched answers, for more creative thinking of the doctor's parts, for second opinions, third opinions. We need to put the medical profession on steady notice that we are not just passive recipients of their oft-times ignorant approaches to our feet.

Every time a doctor suggests a solution that is invasive, ask him or her, what is the long-term outcome? Ask: how will this affect the joints above this joint? How will this affect my current shoes, orthotics, sports, exercise, etc? Ask  how many prior cases he/she has performed this surgery on people with APCF? The point is, don't be a passive recipient of the doctor's "professional" opinion - respect it, but question it at the same time.

After all, it is your body, and you are going to be riding in it for the duration. You have a right to know what is being done to your primary transportation system. You ask hard questions about your car, right?

Change Sucks, But There It Is.

 The following is from a series of posts I made on the adults/teens with clubfoot Facebook group, and felt they deserved to be posted here for easy access by people who may not have joined that group yet. I will also post some of the more incisive comments group members have made on this series. Your comments are also highly regarded, so please weigh in.

 

Sue's injury, and the accounts of many clubbies who pushed a bit too hard, and are paying a price, got me to thinking how we are sort of trapped by both the circumstances of our PCF, and our deep desire to "be normal." That is, to be able to do if not everything others do, at least what we desire to do, at a level we (let's face it) created for ourselves. Of course, those two things are pretty intertwined, so it would be hard to be completely certain which is operating at a given moment.

I keep going back to the parallel between PCF and post-polio syndrome. The original advice was to go and stay active, after all, you've been "fixed." But the truth is there is more going on than misaligned joints - far more. The upshot is, we PCFs will in many instances acquire additional strains and injuries merely from attempting to maintain our own "normal," such as we may have been able to maintain ten, fifteen years back. Unfortunately, this is simply not sustainable - our soft tissues - muscles, tendons, ligaments, fascia - all have varying levels of weakness and probably deterioration that can catch up to us when we aren't looking.

I think for me, and I suspect for many others, the better choice is to not push it, to just go to a comfortable level and then rest. Is this disappointing? To be sure, because we've been crawling long enough, and the inner urge is to fly. But it is the probable outcome that every time we push off to launch, we will pay a price. So finding that happy medium is the trick, which will be different for all. But find it we must. Either that, or invest in a large body-sized bag of ice.

To continue my rant: In my observations of people in general over the years, I have noticed one thing in particular that is true for probably 99% of the people in the world (besides not being among the 1% wealthy elites, of course.) We are creatures of habit. If we have a problem, we try to get it fixed, but will settle for a less-than-perfect fix if we can at least continue with our "habits," be that our work, our leisure, or whatever. The same applies to our health, and by clear extension, our comfort level. If we can get at least within, say, 80% of where we were before something changed, well, we can live with that. Because what we aren't comfortable with, in general, is change - mostly because it takes too much work. Too much reorganizing ourselves to find the comfort spots that change imposes. Too much adjusting our sense of propriety and sense of self to the new regime.

But change, as it is said, is the only real constant. We humans just tend to either forget that, or ignore it because it's not the way we "want it." A cold, for example, is change, and besides the physical manifestations, all that a cold imposes on us makes us cranky and resentful, even a bit outraged that we have to deal with such an imposition.

So let's consider us clubbies: we START with change - the expectations and judgements of others regarding who we are, what we are capable of, how we should or should not fit in their lives. The irregular impact of surgeries, doctor visits, The accommodations we have to make to situations as we encounter them at school, in the workplace, and just living life in public places. So it is small wonder we seek a solution to our pain and discomfort not only to find relief from such pain, but to get to some stage of regularity in our lives. When we find it, even if less than ideal, I think we have a difficult time when Change hits us again, especially if that change is a further limitation on our options for living with some comfort. When we find that a certain activity is no longer going to work for us, no one should be surprised that we should feel angry, or saddened over this change, one that may no longer be a temporary one. Acceptance of lessened abilities is pretty damned hard, but especially when that has been a part of a life-long struggle. It's no surprise that little voice inside our heads cry's foul.

I can offer no solution to this dilemma, only suggest an idea: practice change. It's going to happen anyway, so make the best of it. Read outside your comfort zone. Eat at a restaurant you've never tried before. Try an activity that you were never interested in before, just to shake yourself out of the cobwebs. Rearrange your furniture every six months. Even little things can work: if you usually put your left sock on first, start putting your right one on first, instead. Find little habits you have, and change them in some way. This type of exercise, I think, helps a lot when something changes that we did not ask for, that makes our lives more difficult, because what's really at stake is our own sense of self-worth. When our capacity and abilities are diminished, we feel it as an attack not merely on our bodies, but on our entire sense of self, and self-worth is a big part of that. So finding ways to embrace change can help our over-all resilience, can help us better cope with adversity. We have enough dis-ability. The ability to increase acceptance of change is something we clubbies are better suited to practice than for many people. After all, we started that way.

Some Comments:

Jilli Anderson ...... I agree with you that the better choice is not to push it. However, I find myself making the same idiotic decision repeatedly to "do it now" and "pay for it later." If I could only listen to my own advice! :)

Sherri Hewitt How very true... but .... I don't take "no' for answer or in my foots case "I'm too stiff today...." I just off the couch a minute ago and my foot balked because it had stiffened up...wouldn't bend. That's what I get for being on my feet all day :)


Elizabeth Komos Wow, I really needed to read what you wrote. I've been crying for the last two hours because of the pain, but also the frustration. 1) the trip for Christmas made me push too hard to try and keep up and prove to everyone that I'm okay.... 2) i realized just how dependent I am. Hubs is out of town and the dogs are no use when I can't walk. Wheelchair is downstairs in garage and I can't get to it.... In stuck. I hope I have finally learned my lesson on pushing it too far so that I appear normal in others' eyes.

Jilli Anderson I think, for me, I pretty much know what my limits are. It's more of a matter of wanting to be capable of doing more. I know what you mean, Elizabeth. I did a little of the same thing at Christmas. I wanted other people to not make allowances for me when we were out and about. I hate being the one that the plans change for. I get so tired of being asked, "are you okay?" 9 times out of 10 I say, "Yes, I'm fine." 9 times out of 10, I know I'm not, but I wish I were, so I just keep going. If that makes any sense.

Lucia Quental Elizabeth, I've done very crazy things in the past, like climbing a huge mountain w/ a group of pros and getting lost. I walked for 18 hours, but at the time I was 16, and wanted to prove to myself that I could do it. I think that there's some good in doing things like that, because it shows to yourself what you are made of. But I also think it is a little crazy and one time is enough. So, maybe this was your mountain? I hope you are feeling better. 

Lucia Quental ......Getting old is a constant change, loss is so difficult to deal with. I find the only way is to mourn what you lost, and then let go of it. Thats why I believe anyone with a disability should do some therapy, if only to learn to loose. Thanks for being there for me.