Thursday, September 29, 2011

One More Day! Here Is What You Need To Know About The On-line Forum!

Friday, September 30th Elluminate Live

In conjunction with the First International Club Foot Week, sponsored by the Ponsetti International Institute, will be an on-line forum  for adults with post-club feet, and any medical professionals who are interested in learning more about post-club feet and how it impacts the lives of those who continue to suffer from the effects of this poorly-studied syndrome.


OK, everyone - here it is, the information about attending tomorrow's on-line forum. Please read everything so your experience will be of the highest caliber!!

The International Clubfoot Week Elluminate Live session information: The link to the session is:

https://globalcampus.uiowa.edu:443/join_meeting.html?meetingId=1262319908351 .

You won't be able to get into the session until a few minutes prior to the start of the forum.

Copy and paste this into your browser's URL field (or, if it appears in color, just click on it)  and hit Enter on your keyboard. To begin, sign in as a   guest   and use your first and last name as your username.

As far as trouble shooting goes, most of the issues that occur are that someone doesn’t have the latest java script downloaded. Just have them download that and the program will open. There is a link to the java script download on the entry screen. Here http://www.elluminate.com/Support/ and follow the directions. It's best to get this done today, so it won't slow you down tomorrow.

Also, another useful tip, make sure that you turn off your microphone when you are not talking. That produces a clear sound and eliminates feedback. And it is best to use a headset rather than open speakers, to reduce the possibility of an echo effect for everyone else in the session.

As far as webcams: the sessions will hold up to six video and audio connections at a time. As long as you already have a working webcam, you will be able to enjoy that part of the forum - I will be working to give all participants a shot with their video on-screen, so I will be asking folks to take turns. But as you will be able to see everything that is happening, even if you don't have a webcam, you will still be a part of the experience.

The entire forum will be recorded for later playback, so if you can only attend for a short time, you can always go back to see what you missed. Remember to let your health care people know about this, as well.

Everything kicks off at 10 AM Pacific time. That will be different for every time zone, so do the conversion early! To check on the time in your time zone, go to http://www.timeanddate.com/worldclock/converter.html and input San Francisco, and 10 AM, then click the Convert Time button - that's all there is to it!!

 Please pass this info on to your doctors, other clubbies you may know, and be there, or B Square!!!Q :-)

 Thank you all for your help, and I am really looking forward to what we might be able to accomplish with this first (first!!) forum. See you tomorrow!! And keep spreading the word!!

Willy "Notumbo" Willy Kiyotte

Wednesday, September 28, 2011

2 Days Till The Forum!!

Announcing the First Adult Club Feet Forum!

OK, the news you've been waiting for:

On Friday, September 30, 2011, starting at 10 AM Pacific time, I will be hosting the first on-line Adult Club Feet Forum, in conjunction with the events being sponsored by the Ponsetti Institute as a part of the first International Club Foot Week. We will be using a Web meeting tool called ElluminateLive. As we get closer to the date, I will be posting the password and URL information on to everyone who wishes to participate. For that, I may need all who wish to participate to send me their email addresses so that you can be added to the attendee list for easier access to the forum. I should have that information soon.


The participant's code will post late tonight or early Thursday - stay tuned!

To get some training on the Elluminate platform, go to http://www.elluminate.com/Services/Training/Elluminate_Live!/?id=418 and see the Participants section, for online training, and a downloadable Participants Guide - get a little familiar with it so you spend your time in the forum enjoying the event rather than trying to figure out where you are and what to do. 

Also - to get the relative time in your area re: the 10 AM Pacific time start, go to http://www.timeanddate.com/worldclock/converter.html and input San Francisco and the time of 10 AM and click on the Convert button.

The final topic list follows. There will be several polls, and some power point items, as well. See you there!!



  Discussion Topics for Club Foot Week Conference

The final list:

. What kinds of things have you done to deal with your chronic pain? Medications, therapies, mechanical solutions (shoe modifications, orthotics, etc.), massage, etc.

. What have doctors done for you that worked, and what has not worked? How have you come to define "worked" as it regards your feet? Immediate relief, temporary relief, long-term relief?

. Share resources in your area (country, state, province, etc.) – for orthotics; for footwear; for footwear modifications.

. Who have you gotten the best results with – chiropractor, podiatrist/chiropodist, orthopedist, physical therapist, massage therapist, alternative medicines/therapies? Why do you feel that has given you the best results?

.If you have had a fusion, how long have you had it/them, and at what age were they done? What has been your experience? Are you experiencing good/neutral/poor results? Are any of your other joints causing you issues?

.What activities have you been able to continue in as you’ve gotten older with PCF? What have you had to give up? Have you learned to continue those activities in a modified manner?

. How does/has your partner, children, relatives, friends, co-workers, employers respond to your limitations? Have those limitations ever interfered with your ability to find a job? What have you done to respond to those issues?

. Multiple surgeries as an adult - what was done, and how was it explained that you needed a particular procedure?


OK. So all you have to do is a) convince me that you have another topic, and it will be added to the list; b)mark your calendar for September 30, 2011 - that's a Friday, at 10 AM Pacific time; and c) vote for your top five. I will be harping on this until then. I plan on taking that day off work in order to give this my complete attention - I think its that important to me as a clubby. I hope you find it important enough to join us, spend some time meeting and sharing around the topics with other clubbies from around the world.

The only thing you have to lose is the idea that you are alone. Not anymore!

Notumbo/Willy Kiyotte

Tuesday, September 20, 2011

The Necessity of Self-Compassion


I was recently contacted by a clubby through my blog, not from the group here. I told them about it, maybe they'll join. But the conversation bothered me, and I've spent some time thinking about it a lot. They said they had thought a lot of suicide, from the constant pain, the feelings of "being a broken thing." They had never known other clubbies, and had been run over pretty bad by the medical establishment. I "listened", consoled, reassured, did everything I could to help this person to see themselves in a different light. I urged they find someone to talk to, a therapist, a good friend. They said they had no friends. But I kept them on line, email back and forth for hours.

I have done a lot in my time to deal with my own demons, as I know so many clubbies have. Many of us have asked the amputation question, dealt with drug issues, felt shame, inadequacy, failure, self-blame, resentment, anger. None of these are easy things to bear, especially on top of our handicaps themselves. That's why I've been in therapy myself for many years, why I started the blog, why I spent many years learning and then practicing as a shoemaker and orthotic maker - these were my forms of coming to terms with my pain - I'm a problem solver by nature. But this person really brought so much home for me, made me look very deep.

It seems to me the one thing most of us have trouble with is having compassion for ourselves. It's very hard for us to look down at our feet, our source of pain and a difficult life, and find them a welcome part of our lives. How is it possible to love those ugly, painful "things" that never just let us forget about them for a day, a week, hell, a few hours. Sometime they fade to background noise, but they never ever really just shut up and let us enjoy life without having to occupy our attention. Maybe it's really too much, to be expected to love this part of our body, given all they've visited on us. But, I think, that's exactly why we have to keep working in that direction. So often, our feet shape our thinking, our self-esteem, but they have also helped shape our world view, how we treat others, often with more love and respect than we treat ourselves.

It is not easy being in chronic pain, being mistreated by the medical establishment that, in essence, ignores us as a phenomenon while surgerizing us in an ad-hoc fashion. Nor is it easy dealing with the uncaring, blind-to-our condition, public, even friends, who often think we must be exaggerating our pain, question our limping. We all deserve more than this - much more. But this also means we deserve to have compassion for our selves. Sometimes, I am successful at looking down at my feet and actually thanking them for the path they have taken me on through life, but its always a struggle to get to that place, I know. I refuse, however, to stop trying - they are a part of me, and how can I love myself if I separate them from all that I am?

I haven't heard back from that clubby for several weeks. I remain concerned about them, and hope they stick around, come here and meet all of you other lovely clubbies. They, we, deserve to be in such marvelous company as this. They deserve to be made welcome in this life, and not have to spend what may be left of their life in misery, in self-hate, in isolation. They deserve the company of great people, deep friendship, and self-compassion. As do we all.

Reach out to your fellow clubbies today. And don't forget to reach out to yourself.

Friday, September 16, 2011

New Guest Post - Shawn Sparks

On a roll here - this guest post is by Shawn Sparks, on the issue of dealing with chronic pain.


            Living with chronic pain is hard.  Period.  Normally, when one falls and sprains an ankle, it hurts.  It may hurt a lot, leaving one incapacitated for a period of time, and on crutches for a time while it heals.  One may even need anti-inflammatories and pain medication for a time to cope with the pain, again.. while it heals.  Most of the world deals with pain that will heal, they have an end in sight, so it's tolerable because it will, at some point, go away.  On the other end of the spectrum are people with conditions like fibromyalgia, who constantly experience intense pain that even I couldn't fathom. These people are understood by the medical world as needing constant relief from debilitating pain.  Those with conditions like Scoliosis and Parkinson's disease have outwardly obvious clues that they live in chronic pain.

I reside in the middle.

            I categorize my chronic pain level at a 3-4 on the common '1-10' pain scale.  That's every minute of every day, with a few exceptions from time to time when the planets align, and for whatever reason, the tendons, joints and bones all decide to take a break at the same time.  This is rare, I might add.  On the other end of the scale, I rate my worst moments at a 9.  I am certain that someone without my condition, or even accustomed to living with pain, would rate their experience of my most intense pain at a 12 or higher and would have a hard time coping with it at all.  I understand that it could always be worse, so I call it a 9.    


            Because I constantly live with pain, I have learned to cope with it fairly well.  I can walk when it hurts, and not show the world.  I can push myself to be active, knowing I will regret it later, but also wanting to experience life and not come to the end with regrets of not having done the things that excited me.  During these activities, I again have conditioned myself to ignore the pain and experience the pleasure of whatever it is I am doing.  This has been a hard thing to teach myself.  Some of it is mental training; for a time, I would consider that pain is just another sensation the body experiences, much like tickling, easing into warm water, or receiving a massage.  With this mindset, I am able to let my pain be there, but not be discomforting or distracting, just be there.  Believe me, this rarely works as fully as I just stated it, and is no way to deal with it when it flares above what is omnipresent.

            I recently had a dear friend who lived with Interstitial Cystitis take her own life.  I bring this up, because of anyone in her life, including her own parents, I understood.  I understood that she could no longer live in a body that was in constant pain.  She was dependent on pain medications, but the dosage she needed was only really available in the hospital, so she spent a better portion of her early twenties in the ER.  Because she did not have outward clues to her condition that caused her constant extreme physical pain, no one understood that such a young, healthy looking person could require such pain relief so frequently, if at all.  She, of course, couldn't live in an in-patient facility for life on a Dilaudid drip.  There is no cure for IC, and the treatments she would get could only last a couple of months, and even then, only reduce the pain, not make it go away.  Because she NEEDED such high doses of medication, she was labeled by her family as an addict and a junkie.  She was flagged at every local hospital as a drug chaser.  She could not get the relief that she needed, and made the choice to say goodbye.  I do not disagree with her decision.

            What I have found in myself is that I too am always seeking relief from physical pain.  Whether it's through mental tricks, prolothreapy, chiropractic or narcotic pain killers, I am addicted to those moments of relief.  I love them.  I cherish them.  I live for them.

            In my quest for relief, there was a period a year ago where I made the conscious decision to let myself take pain medication on a regular basis.  Morning, noon and night.  Norco with my morning coffee, and whenever I felt it wearing off, I would take more.  All day.  Every day.  I became physically dependent, but not oblivious; I knew what path I was headed down, and chose to continue.  For me, it was a trade off: live in a foggy-headed state, become slightly ill if I didn't have opiates in my system for 12 hours and be a little mentally slower in exchange for a period of time where there was little to no physical pain twenty-four-seven.  Ironically, this is also the period of my life when the woman I mentioned earlier showed up in my life.  What a pair the two of us made!  Through it all, I continued to see my chiropractor and prolotherapy specialist, and openly discussed my medicine use, as well as how each aspect of my treatment was affecting me, for better or worse.  They were conscious choices, and I discussed my decisions with my friends and family as well to try to circumvent some of the judgments that I saw happening to my aforementioned friend.

            When I moved from California to Texas, I was without insurance for a year.  This was a hard period, since I had set up a fantastic system of care for managing my pain, and not only did I move away from this support and care, but I also had no insurance to rebuild it in my new town.  During the period without insurance, I did the research on sports medicine chiropractors, pain management specialists, orthopedists and even found a prolotherapy clinic, but had no way of funding any of it.   Relief would have to wait.  Fortunately, with a little foresight before leaving California, I was able to wean myself of the opiates, stockpile some for emergency use and return to the mental battle with my pain.

            When my medicine ran out, I found myself seeking more, and had even more insight to what my friend was going through.  What I found myself doing was seeking pain medication wherever I could, and without visual clues for the world to see that I have a condition that comes with chronic pain, I would appear to be a drug seeker looking for pills to get high on.  In a sense this was true, but the high I was seeking was the high that comes when the pain subsides to less than overwhelming, not the high that those who don't understand living with chronic pain think we are seeking.

            After a year at my job, I finally transitioned from a temporary to a regular employee with benefits, and am able to get back to the chiropractor which is just as much a high as anything. However, I am again peering down that path of maintenance-level pain medicating.  I was able to get a prescription that has refills, and find myself taking a couple of pills at the end of the day to shake off the pain like many folks come home to a glass of wine to shake off the stress.

            As I consider my motivation for writing these thoughts, I understand that I am compelled to express that there are those of us in the world who live with pain in ways that the general public, our acquaintances, friends, doctors and even families cannot truly see or understand because we have no real visual clues to 'prove' that we are in physical pain every minute of every day, and sometimes we look to pain medication for some relief.  Sometimes it even gets us to a point where we do not seem disabled, and not in need of such things, but the world cannot understand that it's the medication that is helping us keep this facade of normalcy.    Sometimes we make the conscious decision to habitually take narcotics simply to reduce our omnipresent pain, and it's worth it.  It's worth the trade-off when you've spent decades in physical pain.  Just taking a little of the edge off is enough to justify the physical dependency, the foggy-headedness and the judgments that come from those same people who can't ever truly understand what living with a seemingly invisible disability is.

            In some of the circles that this may pass through, it will be preaching to the choir, and hopefully some of my thoughts help find familiarity with their own situations and not justify, but truly validate their own need for relief.  However, I hope most that it can reach some of the people with whom we interact with and help them understand where we may be coming from, and perhaps withhold judgment of our choices when we are trying to ease pain that they may not be able to see, but we have been experiencing for years, or even decades.


You can read more from Shawn over at the adults/teens with clubfeet group on Facebook - 
http://www.facebook.com/groups/24892886820/

And if you aren't already a member of that group, sign up! Many clubbies await your attendance!!

Tuesday, September 13, 2011

Guest Post - Elizabeth Komos

I am pleased today to offer the first guest post here on the Truth About Talipes, by Elizabeth Komos, from Conifer, Colorado, US.



                Over a month ago Notumbo asked me if I would like to write a guest post for his blog.  I responded with an enthusiastic “YES!”  Little did I know writing a simple piece about living with Bilateral Club Feet would be as hard as it has proved.  Every other day for the last 30 days I have opened up my laptop, started writing- rewriting- editing-deleting-and returning to the original.  I wanted this post to be perfect, to epitomize how I feel.  Yet, I cannot do that.  I cannot put my thoughts down in a way that makes sense to me.  Why?

 Once I figured it out it seemed so obvious.  How I feel about my Club Feet changes every day, with every new experience, every conversation about the pain, the struggles, the shoes I want to buy but cannot(oh the heels I long to wear!)… However; I do have one feeling that is always present.  I am grateful for my Club Feet! 

My C.F. has framed how I perceive the world but most importantly how I perceive myself.  I learned to laugh at myself early on while not being self deprecating.  When I trip getting into an elevator and smack my head on the wall while others stare in worry and with laughter, I knew to laugh along with them.  Poor balance is a symptom of my C.F., so when I trip or friends and strangers think I am drunk in the middle of the afternoon I know how to joke about it.  I have learned to make my loss of balance while dancing appear less like an accident and more like an awesome new move.  I have embraced the nicknames people have given me (and my feet): Squibbs (from Squibby Toes), Hooves, Hunchbacks. Etc...  I have learned to accept the fact that I grunt like an Eighty Year Old man when I stand up from a sitting position at the ripe old age of 27.  I have learned to accept the fact that I cannot wear heels, and dress shoes, and instead I buy funky color tennis shoes.   Being Born with Severe Bilateral Club Feet has forced me to examine who I am at my core.  

In order to know who I am I had to figure out who my peers were.  I asked myself:  Were my peers the friends I made sharing hospital beds post 14 hour surgeries?  Were my peers those I met struggling to climb stairs in Physical Therapy rooms?  The other children and adults I waited in offices with to get casted for new Orthotics? OR were they the children I went to school with?  The ones with whom I had much less in common but with whom I spent more of my time? Inherently this question screams IDENTITY CRISIS.  Am I like my “normal” friends or my “disabled” friends?  And HOLY SCHNIKES “Am I disabled?”

                Who am I?  This is my conclusion:  I am an empathetic, compassionate, stubborn, creative, sometimes bitter 27 year old- who is living with chronic pain, CF, mobility impairments and a myriad of back problems.  I am a 27 y/o that has such poor balance people actually think I am drunk most of the time.  I am a 27 y/o who, until 5 years ago, NEVER wore shorts because my vanity was worried it would be humbled if I let people see my oddly skinny calves.  But most of all- I am a 27 y/o who learned early in life that we all have challenges to overcome.  

So…. Because of Club Feet and the challenges I was lucky enough to experience as a child I learned the true meaning of compassion, empathy, and the fundamental truth that we are all different—each with our own struggles.  Whether we need emotional, psychological, or physical help the simple truth is- at one time or another we all need fixing.  Let me relay a story before I talk more about how living with C.F. has altered how I perceive the world, others, and why exactly I AM grateful for it! 

I was six and sitting in a cramped and muggy waiting room next to my cousin who was 5 at the time.  My mother was seated next to him.  Across from us was an older woman, fifty maybe (at age 6 fifty seemed old to me) with one wooden leg.  For my cousin it was his first experience seeing someone so different than himself.  I was his cousin so my braces, and crutches, and wheelchairs were commonplace for ME to have.  But this stranger with a wooden leg was a whole new ball game for him.  He looked at me, and loudly- way too loudly, asked me “What’s wrong with her?” This question would have been reasonable had he not been laughing.   I didn’t flinch or hesitate in my response.  Actually I was quite snobby toward him, treating him like he was a baby and I was a mature adult!  “Everyone has something wrong with them, something they need to get fixed—sometimes you see it sometimes you can’t.”  

                My mother fondly recalls this story often and always remembers to tell me that in that moment she proud of me and knew that whatever came my way, I would be O.K..  Living a life that was vastly different that the kiddos I went to school with (growing up in hospitals, surgical tables, waiting rooms….) I gained strength and knowledge from all children surrounding me.  They all had a different attitude, a different prognosis, and were unlike each other in very many ways.  It was in the hospital that I made friends who were all different but similar in their fight just to be a kid.  Some of them had orthopedic problems, some Cerebral Palsy, some had cancer, some a broken arm.  No matter how different their diagnosis they all taught me the same thing:  strength comes in small packages.

Years ago while reflecting on my past and all those wonderful little souls I met, I developed my own theory of Relativity.  In Life one thing is always true- It’s all Relative! 

                Meaning, the sum of our experiences and current conditions shape how we view triumphs and defeats, i.e.- some days the fact that I want to lose weight is more challenging to me than my pain, immobility, and the fact that I will someday use a wheelchair permanently.   Then on other days the pain wins and the helplessness I feel when I let go to the truth that I will only and forever get worse.  But, the next day begins with a sunnier outlook and my biggest problem is a hangnail, or hair that won’t cooperate.  Another day it is the death of my father that takes the cake, OR that I had to give up the only job I ever loved because of my disability.  So you see…. while CF is the common denominator, I also survive the same mundane and monumental challenges as everyone else.  So it is up to me to decide how I let those relative experiences shape my outlook, my attitude, and my self-concept.  

                So how do I really feel?  Grateful.  I am grateful that I was born with Severe Bilateral Club Feet.  It could always be better or worse, but that depends on how you look at it.  So instead of seeing the grass greener on one side and brown on the other—I know it is truly about the nutrients I feed my spirit (lawn), how much I water it, and whether or not I place it in the shade or the sun.  I choose the sun!



Thank you, Elizabeth!

Sunday, September 11, 2011

The Ground You Walk On

When you stop to consider the shear variety of possible biomechanics alignments found among clubbies, you have to be somewhat in awe the degree to which we are able to adapt, and still (most of us) walk upright at all. And while the shoes and orthotics that we nearly all wear can to a greater or lesser degree help improve that alignment, and thereby reduce the pathomechanics we also have to contend with, there is another element of the equation that is easy to overlook, and even when we do ruminate on it, we tend to minimize it's importance.

I am talking about the surfaces we walk on - the ground beneath our feet. Now, in the modern world, most of the people in the developed world, that is, walk on relatively level, and usually quite hard, surfaces. Concrete, wood, tiled floors, pavement - substances that are designed to support a lot of wear and weight for a long time. But they are NOT designed to absorb shock, or, more correctly, impact. Shock is a response to impact. and quite interestingly, there remains no consensus definition of shock as it applies to the human body. Some call it "ground reaction force," which is the preferred term in biomechanics, but that still barely describes what shock is.  And then, there are all the surfaces that are not level, not rigid, not "altered" from their natural condition.

Grass, dirt, gravel, sand, rock - all of these present other impacts on the human gait, and thus, have a somewhat more dramatic effect on biomechanics. Now, if one walks on grass that is relatively level, and as long as the ground beneath the grass is neither too wet, nor too dry, the effect on gait, especially on impact is far more gentle and forgiving than concrete. But change the leveling factor - make it a 3 degree slope - not very much, but enough that, when we walk on it, the very angle we are on relative to the slope changes our biomechanics in relationship to the surface. If, for example, we are walking directly up the face of the slope, then our Achilles gets a greater workout, and our anterior muscles have to work harder to keep us upright relative to gravity - we walk at a slight forward leaning angle relative to the angle of the slope. But if we walk down the slope, all that muscle and tendon action reverses, because we are now fighting the pull of gravity in such a manner that we have to make greater use of our decelerator muscles. Think how it feels after you've had to walk down a large number of stairs, several  stories worth, and you'll understand this much better.

But let's go the other way - let's walk across the face of the slope. Now, depending whether we are walking with the up-slope to our right or to our left, we will have one leg that is shorter, functionally, than the other. This is going to put more stress on the up-slope leg, because you are going to have to either walk at a tilt - something that is very hard to do, especially as the slope becomes steeper - or walk with the up-slope knee flexed. This also presents a major energy expenditure. That is, it's difficult to keep up for long without causing fatigue, and eventually, pain. And likewise at any angle you walk on that slope relative to its vertical direction, say, at forty-five degrees from the vertical. Any angle off the vertical will demand some form of compensation by the body.

The same holds true for any surface - soft or rigid - when you are required to walk at an angle off the level plane. If you throw another spanner into the works - uneven surfaces like rocks, gravel, or sand - the mechanics get even more fraught with complexity, and thus, place a greater energy demand on the body. Sand is especially problematic, as it's density is highly variable. Anyone who has walked on a beach knows this - the dryer the sand is, the harder it is to walk on for any length of time in comfort. while wet sand, which is far more compacted, offers more support. Gravel, especially on a slope, can shift unexpectedly, and will place sudden demands on the firing of the musculature to maintain balance, and thus, place higher energy demands.

But lets go back to so-called level, rigid surfaces. Besides the floors inside buildings, the other surface we walk on most frequently is sidewalks. Now, sidewalks, except where they are obviously cracked and buckled, seem the height of reliable surfaces upon which to trod. But the next time you walk down one, try to close your eyes for a few steps, and maintain a straight line of gait. It's really not so easy, because nearly all sidewalks, if they were built according to code, have a slant to them, to permit water to shed during rain. Perfectly sensible, right? But this sensibility forces all who walk upon the sidewalks to compensate for that slope - remember - you are walking perpendicular to the line of the slope, so one leg is now shorter (the up-slope leg), while the other leg is longer (the down-slope leg.) For people with so-called "normal" biomechanics (there is really no such thing - the term of art is "Neutral biomechanics" a kind of averageing principal - I'll eventually post a definition of this idea, but for now, back to the sidewalks) there is no problem - their compensatory mechanisms can handle it without any problem.

But we clubbies, along with almost anyone with a handicap that affects their gait, are not so blessed. We can tolerate these surface insults, if you will, for brief periods (some briefer than others, of course) but that period can also vary depending on our current state of pain - what works for us today might prove far more uncomfortable tomorrow. But, we must get around, and short of adapting by making our legs into telescoping mechanisms, we are just going to have to deal.

But what does this all have to do with our footwear and orthotics? Well, first of all, never, and I really mean never, test a new pair of shoes or orthotics on anything other than completely level ground. This of course seems like common sense, but I have seen people do otherwise without giving it any thought. And when I say level ground, I am also talking about the shoes you are currently wearing, when you go to get a new pair of orthotics. If your shoes are worn, no matter how good the orthotics might be, the results will be less than ideal. This is because, from the perspective of the orthotics, your shoes represent un-level surfaces. Think of it like this - when its merely your feet, and the ground, that is one kind of relationship, mechanically. Place a shoe between your foot and the surface, and now, that relationship has to include the balance of the shoes.. When you further intervene in that relationship with an orthotic, the mechanics change yet again. The idea is to make it a positive change, but if the shoes themselves are unbalanced - edge wear, compression, breakdown of the uppers on the soles - then you are making the orthotics work on uneven ground, and thus,increasing the energy burden, not to mention offsetting the muscular balances laterally, medially, anteriorly, and posteriorly. Essentially, you're going to cause something to hurt. Most likely - your body.

So, word to the wise clubbies out there - never go to get new orthotics, or even have your old ones adjusted, while wearing shoes that show obvious signs of wear. Just wastin' your time, and making your chiropractor work harder. And as for you skiers out there? See ya on the slopes!

Wednesday, September 7, 2011

More Questions About Post-Club Feet

Hey, you know me - questions, questions, questions. Yeah, I'm a bit of a nag - I get that from a lot of folks. But I am the kind of person that won't stop asking them until I get real and substantiated answers. For instance:

  • Can the atrophied muscles of the lower leg as found in club feet ever be built up? That is, does the amount or type of exercise done ever truly result in any improvement to this musculature? because from what I have seen, the answer is a resounding "NO". But if that is indeed the answer, then it begs the next question:
  • Why?
  • And if the answer is in fact no, then the next question is, can continued hard exercise lead to an eventual breakdown of those muscles, as might be seen, for example, in post-polio syndrome?
So, that's my question today. If you have any information that can aid in answering these questions, or, if you have unanswered questions about your club feet, let me know. I will feature them in the next installment of

QUESTIONS WITHOUT ANSWERS!!!!

(To be heard loudly, with an echo effect)

Who Says Club Feet Can't Be Sexy?

Hey, you deserve to see this site, and spend time getting to know it well - http://meandmysexyclubfoot.wordpress.com/
Because I think we clubbies battle this feeling that we are somehow less attractive because of our CF. So here is someone, Elinor Claire Rowlands of the UK putting that illogical assumption to rest, once and for all!

You go, Girl!

Sunday, September 4, 2011

Who Are You - A Cripple, or a Man? How About Both?

I believe it's important to not "be" your handicap - in fact, I spent decades denying I even had one. We are all more than the fact of our handicaps, and that is completely as it should be. After all, we want to enjoy life in the same manner everyone does - except perhaps the politicians. We want to be active - sports, hiking, enjoying our friends, or our kids, just as everyone else does. And it comes as no surprise to me that I wasn't the only clubby who tried to act as though I did not in fact have something that set me apart from "everybody else," whether I wanted it to or not. I learned very early that being different, especially among my peer group, was a ticket to being bullied, to humiliation, to rejection, to being relegated the outsider status I never sought. But there it is, isn't it? Everyone I have ever met, who has a handicap - obvious or invisible - has gone through some variation on this theme. And nearly all have confessed to me that the biggest hurdle they often face is their own internal battles, the internalizing of all that rejection and humiliation, of being if not told, then certainly being shown, that to be handicapped nearly anywhere in the world is to be "different."

Today, I have come to terms with the harder elements of this internal battle, this constant rupturing of the self I feel, from the self I deny. But in order to do that, I had to work very hard to realize that, in choosing to call myself a clubby, in choosing to spend a major portion of my life trying to help others whose handicaps have made life difficult, I was that different person the world made me out to be. Only now, I am in charge of that self. I do not hesitate to tell those who ask why I walk with a cane, or limp worse some days than others, or why I wear those huge shoes, that I am a clubby, and am more than willing to explain what that means, if they are truly interested in facing the truth along with me. Until I was willing to allow my self to be my handicap, as much as all the other things I want to and strive to be, I was not ever going to be a complete person, the person  in fact I am, different or not. And, true confession here, I have spent more than thirty years in therapy working to reintegrate all those aspects of myself, to reclaim my full self, handicap and all. And I am still working on that goal. Fact is, I suspect I will always be working on it.

But I have also learned something else along the way - everyone, perhaps with the exception of Buddha, has a handicap. If you spend time truly observing people, something I have spent much of my life engaged in, both at the professional level, and just because people fascinate me, you will sooner or later spot their handicap. It might in fact be obvious - cane, wheelchair, prosthetic, a limp, - or it may be very subtle, say, an inability to actually listen to what another person is saying, or, bigotry, or intolerance of people who they believe are slower, or who think differently, etc. A handicap, when seen in the manner the word is used in sport, as in horse racing, for example, simply means that there are differentials in advantage that must be factored into the ability of the various participants to fully compete on a level playing field, as it were. Us clubbies, just as with others with physical and mental handicaps, don't really have a level playing field, do we? And that is why I feel so strongly that we do indeed need to be as willing to "be" our handicap to the same degree we choose to be our other aspects - our work, our sport, our friends and family. Our clubby selves need to be fully integrated into our lives. Then, and in my view, only then, are we able to be fully and truly who we are.

Announcing the First Adult Club Feet Forum!

OK, the news you've been waiting for:

On Friday, September 30, 2011, starting at 10 AM Pacific time, I will be hosting the first on-line Adult Club Feet Forum, in conjunction with the events being sponsored by the Ponsetti Institute as a part of the first International Club Foot Week. We will be using a Web meeting tool called ElluminateLive. As we get closer to the date, I will be posting the password and URL information on to everyone who wishes to participate. For that, I may need all who wish to participate to send me their email addresses so that you can be added to the attendee list for easier access to the forum. I should have that information soon.


Also, I will have the topic list finalized by then. Unfortunately, I have not received any response on that list since it was posted, so I am posting it here again. If there are topics on this list you most want to discuss, please let me know. You can either leave a comment on this post, or send an email to me at pisnoopy2003@yahoo.com and I will be glad to add your vote. My current top five are the purple ones.


Proposed Discussion Topics for Club Foot Week Conference

OK, since time's a'wastin', here are some proposals for topics to be used for the on-line conference for adult clubbies in conjunction with the Ponsetti Institute's Club Foot Week. Critique welcome and encouraged, but I've got to meet a deadline, so here goes:


. What kinds of things have you done to deal with your chronic pain? Medications, therapies, mechanical solutions (shoe modifications, orthotics, etc.), massage, etc.

. What have doctors done for you that worked, and what has not worked? How have you come to define "worked" as it regards your feet? Immediate relief, temporary relief, long-term relief?

. How have you managed the emotional aspects of your CF?

. Share resources in your area (country, state, province, etc.) – for orthotics; for footwear; for footwear modifications.

. Who have you gotten the best results with – chiropractor, podiatrist/chiropodist, orthopedist, physical therapist, massage therapist, alternative medicines/therapies? Why do you feel that has given you the best results?

.If you have had a fusion, how long have you had it/them, and at what age were they done? What has been your experience? Are you experiencing good/neutral/poor results? Are any of your other joints causing you issues?

.What activities have you been able to continue in as you’ve gotten older with PCF? What have you had to give up? Have you learned to continue those activities in a modified manner?

. How does/has your partner, children, relatives, friends, co-workers, employers respond to your limitations? Have those limitations ever interfered with your ability to find a job? What have you done to respond to those issues?

. What is your self-image?

. How have you tried to deny/ignore/avoid your handicap? How have you been able to embrace it? Who has encouraged you in dealing with your limitations? How have/do they show that?

. What was your worst childhood experience connected to your CF? What was the best? How has that experience shaped you?

. Multiple surgeries as an adult - what was done, and how was it explained that you needed a particular procedure?


OK. So all you have to do is a) convince me that you have another topic, and it will be added to the list; b)mark your calendar for September 30, 2011 - that's a Friday, at 10 AM Pacific time; and c) vote for your top five. I will be harping on this until then. I plan on taking that day off work in order to give this my complete attention - I think its that important to me as a clubby. I hope you find it important enough to join us, spend some time meeting and sharing around the topics with other clubbies from around the world.

The only thing you have to lose is the idea that you are alone. Not anymore!

Notumbo

Friday, September 2, 2011

Empathy - The Short Supply of a Natural Resource

It often takes a debilitating injury to make some people appreciate how hard life can be for people with handicaps. There's nothing quite like acute pain, surgeries, hospital stays, slow healing, reliance on others, sometimes for very personal issues, and the sense the world (and your job) might be forgetting about you. But we clubbies have had a lifetime of experience on all these counts. We know too well about hard-to-negotiate streets and sidewalks, stairs and having to wait in line - while standing. We know about feeling the world is both passing us by, and doing its best to look the other way when we pass it by. We know about the medical establishment's propensity to see us as another object on their assembly line. We know, intimately, about our futures, because our past and present provide a pretty fair indication of tomorrow.

Going through this latest "test" with my knee, and all that entails - crutches, reliance on others, pain, medical appointments, pain (did I already say that?) and trying to get back to at least where I was before the injury, has merely highlighted all I have already had to accept in my life. But it has also shown me something else, something I also already knew (in my bones) but that I have tended to simply ignore in the realization there was little or nothing I could do to change it. I am talking about what my injury/disability reveals about other people. About their habits, their reactions, their concern, and lack thereof.

Take the simple act of crutching down a city sidewalk. Now, it's not like I am invisible - I am not small, I have an appearance of someone who could either be an evil biker, or Santa Clause (you'll have to make up your own mind when you meet me) and, oh yes - I'm walking on CRUTCHES!!!! Yet, people simply walk into me, even from behind, because I am apparently moving too slow. Or, they walk by so close they kick out one of my crutches. I will admit, it does give me the perfect excuse to humiliate them about what a poor job their parents did in raising such an oaf, but that is scant compensation when it would be so much more satisfying to have a laser installed in the crutches and just burn a hole in their legs. Sorry, I get carried away with vengeance sometime - old, bad habit.

Another thing I like is how when you go into a store, and it is clear you have NO EXTRA HANDS to carry out your purchase, you have to remind them of this fact before they "get it" that you need a bag with handles. I usually use the "I'm sorry, I had to have my other two arms amputated after they got stuck in an escalator at Macy's" gambit. It usually shakes them out of their unconscious failure to appreciate anything more than two inches from their eyes.

Now, all this does not make me want to randomly trip people to induce a long period of empathy resuscitation in a larger portion of the population, (at least not so as I'd be caught:-) but it does make me wonder exactly when the idea of common courtesy to others when in the co-mmunity or, the commonweal, as it has been known since, well, before we ceased being English and became, well, whatever it is we've become. Civility, as is all too evident, has gone out the window, especially in so-called "civil discourse." And civil empathy is fast on its heels. On mine, too.

Well, gotta hop off now. Thousands call out for anti-tripping legislation, and who am I to deny them their statistics. Heh, heh.