Previous month:
November 2013
Next month:
January 2014

Neurologists Get The High Tech Tools

I was eager for him to reach for the safety pin.

When you see a determined young woman treading the clinic or hospital hallways and notice a string of safety pins dangling from the pocket of her white coat, you know she’s a neurologist.  I tease the residents that now I know why they went into neurology – so they could play with the high tech tools.  The safety pin.  The sharp stick.  The tuning fork.

Last Wednesday was my first visit to my neurologist in three months, and after a year of this I could do the assessment myself – squeezing the hands while the patient tries to keep his fingers spread, pushing down on the knee, pulling the arms forward.  Dr. B. will take the tuning fork to see if I can feel the vibration on the back of my wrist, on my knee, on my shin.

But I was most curious about the safety pin.  He’ll have me close my eyes and then alternate touching me with the point and the top of the clasp.  Can you feel this?  Can you tell which one was sharp?  He’ll touch the backs of my hands and then move up my shins.

It has been my impression, these last seven weeks since we started the cyclophosphamide infusions, that my skin sensitivity is improving (not always pleasantly, but I’ll take more sensation over less).  But in the dark before dawn, when I drift awake briefly, and my muscles go through their sequence of twitches and spasms, I have doubts.  Maybe I’m just imagining the improvements, subtle as they are.  Because maybe I need to.

But he smiles.  “Definitely improving.  Much stronger.  Much better sensation.”  I have trouble recognizing my own relief.

So we’ll continue with the monthly infusions, at least through March.  He’ll taper me off the prednisone (I’m very glad about that – it’s been making me grumpy).  I’ll keep on with the physical therapy.

Part of what makes my condition challenging for the caregivers is that it is unlike a spinal cord injury, where there is a single traumatic event.  In my case, the spinal cord has been under attack for over a year and we have no way of knowing what the extent of irreversible damage has been.  I imagine the battle ground – we are trying to get the healthy nerves to forge new pathways, to develop the connections to the muscles that have been lost by the nerves that will never fire properly again.  But these nerves are under attack too, and too often (I imagine) the inflammation gnaws their insulating myelin away before they can retool and they become useless as well.  In those dark hours I wonder, even if we are successful in getting the inflammation substantially reduced, will there be enough healthy nerves left?  In that little inch or two of firestormed spinal cord I do not have an infinite supply of neurons.

But here Dr. B. sounds a hopeful note that I hadn’t considered.  Some of the nerves are being compressed by the swelling that accompanies the inflammation and that compression is rendering them inadequate.  But they may not be seriously damaged, and as the swelling decreases, some of them will be restored to functioning properly.  There’s a glimmer that I’m happy to have.

We’ll do another MRI in early January so that we can see the status of the inflammation.  But for now we can infer that it is going down some.  Now it is up to me, with Miranda’s help, to strengthen the muscles and retrain the nerves.  While the cyclophosphamide works its vile, but oh so necessary magic, I’ll do my leg lifts and torque my hip muscles and practice my lunges and squats, and pedal away.

I’m prepared for the long journey.  For now the improvements remain slight and scarcely observable to the untrained eye.  My walking is shaky and weak, my hands can still barely grip and I have no dexterity.  How much function I will eventually get back remains as unknown as ever.  I know I’m not going to wake up one morning and be miraculously restored.

That’s okay.  I’m very happy that we’ve got a plan for the next few months.  The improvements are real.  The treatment is  working.  And I know what I need to do.

 

 


The Magical Thinking of Professor Harnad

One watches with awe the relentlessness of the hedgehog mind.  Would that I were as certain of anything as Professor Harnad is of his vision of the open access future.  Surely one can be sympathetic to his frustration at those who bring up irrelevant issues or divergent points of view.  To his laser-like vision they are so obviously wrong.   Again and again (and again!) he tirelessly trots out his facts – that it is only fear that keeps academics from depositing articles into local repositories and so we must have mandates which will almost instantly (because academics love mandates) result in nearly 100% OA, at which point publishers will cease publishing and convert to peer review management organizations, funded by the windfall garnered by libraries who will cancel their now unnecessary journal subscriptions.

It will be a glorious day, akin to the day when the movie studios shut their doors once most households had television sets (or was it radio that went out of business?)  Or maybe it was the day that cable put the broadcast networks out to pasture.  I forget…

But no matter.  In the meantime, we must be vigilant and focused.  We must keep the evil subscription (“toll-access”) publishers in business (for the time being) and not so much as whisper the heresy that librarians might cancel journals prior to the day of the singularity.  Is it supposed to come as a surprise to them when we suddenly drop our subscriptions?  How much time will they need to re-tool to become peer review only organizations?  So many questions…

Although the metaphor is inexact, there’ve been many times over the past year that the line whispering in my head has been, “And the revolution eats its young…”  The Finch report tore the OA community asunder.  Where previously it had seemed that gold and green might coexist and one could be friendly with both, suddenly the camps became like the true fans of the Crimson Tide versus the Auburn Tigers.  Allegiance must be paid.  Professor Harnad leads the charge, castigating “Fools Gold” and hollering even more shrilly for mandates, mandates, mandates which are easy to implement and which the researchers desperately want in order to alleviate their fears and make those deposits that they are so eager to do.  It is inevitable and it is almost here.

In this taking of sides, Gold OA must be opposed at all costs, so former heroes of the movement, like PLoS or Biomed Central, conveniently drop off the radar screen.  Immediate open access to the version of record is now perceived as a danger, vastly inferior to scattered deposits of the author’s manuscript version.  The OA goal has been turned on its head.

One of the ironies for me in all of this is that I would actually love to see much of the future that Professor Harnad envisions come to pass.  Indeed, many years ago, at a meeting of librarians and publishers organized by Marty Frank and Mike Keller, I said that I could see a future in which an organization like APS acted strictly as a peer review organization, putting their stamp of approval on papers that could then be deposited in any of a variety of repositories.  Marty laughed (as he tends to at what he perceives as my more outlandish ideas).  I still think it’s a nifty concept.  But anyone who has studied diffusion of innovation theory and history knows that the path forward as outlined in the voluminous Harnadian corpus is a fantasy. 

In the real world, change happens in fits and starts, is messy and incomplete, results inevitably in a series of unintended consequences and is a matter of balancing pros and cons.  It is never as neat as Professor Harnad wants it to be.  For my part, I view the desirability of immediate open access to the permanent, curated version of record to be well worth the continued involvement of the commercial publishers.  I'm skeptical that the repository movement advances us very far.  But I'm not dogmatic about it.  

In a recent exchange, when asked by Jeroen Bosman what the reasons are for his speculations, he says, “Speculation, but grounded in the pragmatics, logic and evidence of what it actually going on today.”  In the magical thinking of Professor Harnad it is obvious and inevitable.  How frustrating it must be for him that so many of us fail to see it.