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!