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.