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.