Sunday, December 2, 2012

Makes my brain explode -- but now it can be repaired

It's almost impossible to discuss this article without leaping out of the chair and waving my arms around, squealing with the sheer thrill of its deep and wide implications for treatment and understanding:

Precisely Engineering 3-D Brain Tissues

Using a 3-D printer, transparencies, and binder clips, these wunderkinder can create neural tissues that mimic the cellular proportions and relationships of real, living brains.

On this basis, here are some possibilities discussed in the article:
  • Watch how brain tissue responds under different circumstances, leading to new understanding of brain growth, disease progression and structure-dependent brain abnormalities.
  • Repair damaged brain tissue. With historic rates of traumatic brain injury in the most productive age group, this alone is world-changing.
  • With samples from patients, custom brain cultures can be grown, and drugs tested against them, targeting drug treatment that works on the first trial. This saves people who need CNS-affecting drugs countless weeks and months -- even years -- of untold misery, as different drugs get pushed through their systems in an effort to find one that works.

Harvard Med and MIT at their collective finest.

The great challenge, of course, is getting this OUT of the lab and INTO the populations that need it. I hope it's not kyboshed by those whose profits depend on the current ineffective, inefficient, expensive, and unspeakably brutal systems of CNS treatment.

Let good medicine prevail.

More sleep, less pain

This study uses healthy volunteers, but the anecdotal evidence and related science in those of us with pain conditions does suggest a profound correlation between sleep and pain:

Extended Sleep Reduces Pain Sensitivity

Interesting that they specifically note that less than 2 hours' extra sleep is more effective than a substantial dose of codeine!

Tuesday, October 30, 2012

Awash in "wow"

We are putting together a program called, "CRPS: Art & Spirit." We aim to collect information -- and creative work -- from those who manage this disease with extra poise, focusing on what works (rather than profits or politics) and finding our way towards a cure.

The paperwork involved in getting funding and charitable status is a bit more than I can manage. Getting help with that is my holiday gift from Mom.

Designing a web page is essential to getting any message across. After months of flailing, a design suddenly came together that includes everything we need. (Details and testing are still in process.)

A hurricane hit as I was preparing for my journey. Apart from a few bad pain days and a localized power outage that provided some enforced rest, it's gone easy on me (so far).

I might be able to get some small-business breaks from my bank and phone company (and if I do, I'll link them.)

The clouds are clearing in more ways than one.

Curiously, I've started wondering what I'd do if I no longer had CRPS. I realized that, given how much has been beaten out of me and how much under the surface has been revealed, I'd probably NOT sink back into anxious denial and run as far from this as possible (as many with solid remissions do.).

I could be wrong but I think I'd stay in the thick of it, riding herd on this project with the power and vigor of an _able-bodied_ person -- one who doesn't take it for granted -- and keep working a cure for everybody who has it.

None of us is free until all of us are free. I feel it in my bones. Even a perfect remission won't take me off this road. That well-honed determination will keep me in the game. And, with a structure & funding to back me up, it's hard to see how any success could stop me.

But what do I know? I'm still in the thick of the illness as well as the work. No point in imagining that things are different, but it's fun to think about.

Dreaming is free, and when barriers seem to be rearing up only to fall away, anything is possible. 

Tuesday, October 23, 2012

White matter map and why it matters

This article describes a new, life- and reality-based map of the white matter in the human brain:

First Micro-Structure Atlas of Human Brain Completed

It addresses two crippling gaps in our understanding of the brain:

1. Hitherto, brain models have been derived from microscopic analysis of a handful (so to speak) of cadaver brains.  Since significant physical and chemical changes begin to happen immediately upon death, this puts a hard limit on  how accurate these models can be -- and gives us no real clue about the true extent of the inaccuracy, because there were no living models to compare them with.

2. Until now, the science has focused on grey matter. We don't even really know what white matter does, except convey the messages the grey matter processes. (It's a bit like not knowing anything about your internet uplink -- not ISP contact info, speed, bandwidth, nor hardware -- even though your work and connections depend on your internet access. You can still get something done, but if anything goes wrong, where do you start?) One day in the near future, we're going to be really embarrassed about ignoring white matter for so long.

This map was made as follows:
- using MRI that yields unprecedented resolution, able to provide solid estimates of such details as the width of different neuron fibers (!),
- done on living brains,
- in the skulls of 100 different people -- a much more meaningful sample.

This is a great day in neurology. All of us with CNS disorders have a brighter future, with information from this map making its way into the science.

Tuesday, September 18, 2012

Clarifying nutrition: focus on Source, Process, and Time

This table shows the antioxidant contents of 3,000 foods:

The Antioxidant Food Table

On first glance, I was annoyed, because there was so much redundancy in the foods examined: 11 entries for blackberries? Couldn't they make up their minds?

On closer inspection, a deeper story emerged. Take a look at this and see what you find:

Product Label Procured in Antiox. (mmol/100g) Prep
Blackberries, cultivated USA 4.02 6
Blackberries, cultivated Solabaer, Sola, Norway Norway 4.13 3
Blackberries, cultivated Norway 6.14 3
Blackberries, cultivated Belgium Norway 3.84 3
Blackberries, cultivated, canned, drained S&W Fine Food, USA Norway 2.34 3
Blackberries, cultivated, frozen Local grocery USA 4.06 6
Blackberries, cultivated, frozen Wholesaler USA 3.89 6
Blackberries, cultivated, with sugar Findus, Norway Norway 4.76 3
Blackberries, Dessert Berries, without sugar, frozen Norske Dessertbaer, Norway (berries from Poland) Norway 5.98 3
Blackberries, dried, "Loch Ness" The Norwegian Crop Institute Norway 37.08 5
Blackberries, wild Norway Norway 6.13 4
3 Purchased in grocery store, restaurant, cafe, bakery or marketplace.
4 Handpicked or received directly from supplier.
5 Previously published in Halvorsen et al. 2002 or Dragland et al. 2003
6 Previously published in Halvorsen et al. 2006.

Notice how much variation there is?

This table indicates what's behind those eternally confusing reports about which food has the  most antioxidant activity.

With a spread of more than tenfold in the antioxidant activity in blackberries, you simply have to look at two more factors:
  • Source
  • Preparation
Understanding these two critical factors helps clarify a lot of red-herring driven confusion over which foods are most nutritious.

It's a reminder of something we know, but tend to forget in the barrage of information and anxiety around food. 
  • Plants and animals need nutrients, water, sunshine and air to grow; the quality and quantity of these things affects what they produce.
    More species-appropriate and healthful growing environments produce more nutritious food than inappropriate or unhealthful environments.
    Different strains of the same species have different attributes, as someone who has tasted longhorn steak and kobe steak side-by-side could probably tell you.
  • Food nutrients are reactive, which means that heat and light are going to make them change over time.
    If they weren't reactive, they wouldn't be nutrients, because nutrients need to be amenable to digestion and assimilation -- that is, physical and chemical reactions -- before they can do us any good.
    Therefore, food nutrients are susceptible to heat, light and time.

Source matters

Cultivated blackberries from 3 different places had an antioxidant score that varied by roughly a third. That's a significant variation!

There was only one sample of wild berries, which rated about the same as the best of the cultivated fresh berries from the same region. Wild strains of berries are generally more nutritious, so it should be said that this study does not specify if these berries were from a wild strain, or from a cultivated strain found growing in the wild. Not everyone realizes there's a difference, but heredity matters (kobe/longhorn.)

Preparation matters

Processing makes a huge difference in the amount of nutrition available per, say, 100 grams.

Notice how the canned berries, which are subjected to considerable heat in the canning process, have the least antioxidants.

The frozen berries, which are meant to last awhile (thus being subject to time) have less bounce per ounce than some, but more than the canned berries.

The fresh Norwegian berries that travelled to Belgium are likewise impoverished, and the distinguishing factor between them and the Norwegian berries in Norway is the transit... time.

This may also be due to using a strain of blackberry that withstands transport better -- a trait which, in produce, often goes with a lower nutritional profile.

If fruit is dried correctly (a big "if"), then it retains much of its nutritional value and has the considerable advantage of concentrating it into a smaller quantity. Thus, the 100gm of dried, possibly higher-quality berries turned out to have the biggest antioxidant kick -- by a factor of roughly 10 over frozen berries.

Subjective matters

I've been thinking about this article since I read it a month ago.

Then, as I was struggling with brain fog this weekend, I got a pair of half-pints of organic raspberries from a large commercial producer which is famous for consistently mild, sweet-smelling berries that hold their shape despite being shipped all over. They were on sale.

I ate a whole package, hoping for that antioxidant kick that would chase some of the fog away. Not wanting too much sugar in my system (and hating to spend that much money in one sitting), I hesitated before starting on the second package, but no good. I might as well have been eating cardboard for all the good it did. I began to wonder if I should bother with raspberries at all, given how every bite I eat has to matter.

The next day, I stopped at a roadside stand and picked up a single half-pint of organic raspberries from a farmstand, for slightly more than the brand-name berries cost on sale, but less than they cost otherwise. (Farmstands are generally worth the gas I spend on finding and mapping them.) They were much smaller, much darker, and some of them were squashed. They wound up spilling in the car, and I pulled over to scoop them up and keep them from messing up the rest of my shopping. I quickly gave up on extracting them neatly, and just shoved the spilled half into my mouth.

Quite apart from the flavor explosion -- which was an eye-opener in itself -- within a minute, the fog had lifted. My eyes were sharper and my head was clearer than it had been in awhile. THAT was the antioxidant kick. It lasted for hours, and I got another one when I ate the second half.

Summary and context

A lot of the fuss over what to eat can be resolved with a little common sense and remembering what you learned in grade school when you were sprouting beans in little cups.

How fresh your food is, probably matters more than exactly what it is.

How well it was grown, probably matters more than the packaging.

And, if you're lucky enough to live near farm country, roadside stands are worth your time.

If not, build farmer's markets into your schedule, because they bring the fresh food right to your neighborhood, with very little time between the soil and you.

I've found that each bite of more nutritious food is more rewarding in every sense, and I wind up needing less to meet my needs. It's economical in the long run, although I remember it took a few months of eating good food voraciously to catch my impoverished system up. That cost a lot up front, but it paid off in the end: my system became more efficient and my tastes evolved for satiation, not overstimulation. I eat enough and am genuinely pleased; that eternal nervous quest for more-more-more is gone.

Grocery stores are for filling in after the farmer's market and roadside stands, in my view. I have a limited budget and stringent nutritional needs, so I've come to that realization the hard way. This study just reinforces my discovery in a different way.

Tuesday, September 11, 2012

Suicide, including veteran suicide, handled back to front

This article discusses suicide among returning veterans:

Suicide Prevention Expert Outlines New Steps to Tackle Military Suicide

The up-side is, it brings more attention to this national shame: "..while only 1% of Americans serve in the military, the suicide rate of veterans accounts for [20 %] of the overall total in the US." [Emphasis mine.] They're overrepresented in suicidal despair, even at this time of epic national meltdown, at a rate of 19:1.

There are some good ideas (badly put) under this deceptive title (new? Hardly), with an unfortunate insularity and gee-whizz ignorance in parts:  "the effects on the mental health of active-duty service members, reservists, and veterans is only just beginning to be felt."

Only just beginning to be felt? By whom? Reports started streaming out of this population from the start!
The horrific rate of PTSD, brain injury and subsequent/consequent suicide among modern veterans has been in the news nearly since the Iraq war started. And the effects were "felt" by affected veterans and those who love them from the beginning.

That was an astoundingly insensitive choice of words, and when a social scientist is astoundingly insensitive, it automatically makes me question his insight and judgement. After all, social scientists have to pay attention to social cues and have some social awareness in order to do their jobs well.

The suggestions made by this article are,
  • Reduce access to guns and other means of suicide.
  • Watch for sleep disturbances. 
  • Prescribe opioid medications carefully and monitor.
  • Improve primary care treatment for depression.
These instructions are useful and appropriate (though not new at all), but the order puts the primary burden in the wrong place.

The reflex is to consider first how to change the patient's context and control, and second how to change the provider's context and control.

But which person -- doctor or patient -- do the policy makers have more access to?
Which has broader (and more cost-effective) reach per person?
Where does influence and support really come from -- especially when the patients themselves are desperate and don't have the resources to face what they're dealing with?
Hint: Only one of these two people is licensed, monitored -- and paid to show up.

It might be time to focus first on how to change the provider's context and control -- in this case, train primary care physicians in how to evaluate for mental health issues without losing their own minds, and make it easier for them to be more mindful, conscientious and appropriate when prescribing CNS depressants such as opioids.

Policies regarding these things may need to be updated. Despite some alterations and improvements, they still focus on controlling the patient's access to meds and autonomy, rather than on changing the provider’s involvement and awareness of what's going on.

This is exactly back-to-front.
This is the best we can do??
At-risk patients -- those with PTSD, intrusive pain, or some other confounding factor -- need to be seen more often and have mental health screens at each visit. Since many of the well-tested screening tools are short checkbox quizzes, that's a reasonable addition to care. Some can be filled out in the lobby by the patient.

This serves several purposes: the frequent care provides a disproportionate feeling of support to the patients, reducing despair and helplessness; if the visits feel excessive, it motivates the patients to improve their own resources and self-care, reducing passivity, which improves outcomes; and bad findings on the quizzes provide quantifiable, documented need for mental health care, which can then be provided in a more timely manner and with less argument from payors.

Speaking as someone with significant confounding factors (chronic pain, neuro dysregulation, and acute life stress) I'd be delighted to know my doctor and health care system would do that for me, even though I'm not remotely suicidal myself.

When the behavior of those who are easiest for policies to reach AND most influential in patient care is more appropriate and effective, then it makes more sense to go to the trouble and expense to reach further out into the population's private lives and try to manage them there.
A more rational and effective approach might be,
  1. Train and retrain all primary care doctors to look for mental health issues. This is something that suicide prevention specialists have been screaming for for years. It's mentioned last in this article, but should be mentioned first: people who commit suicide were likely to have seen their doctors within a month. Talk about a cry for help falling on deaf ears!

    But most doctors turn into deer in the headlights in the face of mental distress, because they have no real idea about what to do. There need to be better guidelines, a clearer path to mental health follow-up, and failure to meet basic requirements of care needs to create problems for the provider -- as they inevitably do for the patient.
  2. Manage access to obvious methods of suicide, like CNS depressants and firearms. There are many profoundly depressed people who will kill themselves if it's easy, but fewer who will really put a lot of energy into it, because energy plummets with major depression -- along with impulse control. A deadly combination.

    Reducing access involves having primary doctors get more involved with patients who get CNS depressants like opioids and benzodiazepines; implementing and enforcing access laws to firearms and ammunition; and noticing at-risk people with drug and firearm access and giving them the training they need to reduce their own access on an impulsive basis. (Yes,that's right, engage the patient's own inner and outer resources, rather than simply impose limits outside their control.)
  3. Increase time span between impulse and action, giving second thoughts a chance to kick in. This is important, because the despair is stubborn, but the suicidal impulse comes and goes. Give it a chance to go, so the person has a future and a chance to recover.

    This involves, again, noticing them; engaging them to leverage their own capacity for self-management; and getting logistical support from those around them.
  4. Look for early signs, like sleep disturbance, mood swings and eating or weight disturbances. Don't know why the latter signs aren't even mentioned here, when they're easier to notice from the outside. Veterans certainly have them.
We've been pushing for effective education for all primary doctors around both mental health and pain control (which are tightly linked) for decades. It's not new, it's just ignored, underfunded, and badly implemented, costing billions in direct and indirect costs.

Mental health and pain control are tightly linked because:
  • Pain is depressing.
  • Pain is limiting.
  • The helplessness of those limitations is depressing.
  • CNS depressants are, literally, depressing.
  • Depression and helplessness significantly increase pain response in the brain and nerves.
  • And back around we go.
It's a vicious cycle, keeping overtaxed minds between frying pan and fire...
Lasting treatment success is tied to increasing someone's sense of self-governance and engagement with life (reducing actual helplessness) not limiting their options and patronizing them into submission (increasing actual helplessness.)

[Limiting options is necessary and useful for inpatient treatment, but is highly problematic in outpatient care -- which is where most mental health issues take place.]

That same engagement and sense of self-governance also reduces the neural system's susceptibility to pain.

It breaks the cycle.
One of these people is not engaged in life. The other is. Which seems better?

Let's do all that now -- at last -- and see how much faster the suicide rates drop than at any prior point in history. For veterans, civilians, everyone.

It'd be cheap, effective, and useful. It'd serve our veterans and increase productivity. It'd brighten up the lives of everyone affected by it. Is there a downside?


Suicide Prevention Expert Outlines New Steps to Tackle Military Suicide. ScienceDaily (Sep. 10, 2012)
6,500 US Military Veterans Commit Suicide Every Year, International Business Times (April 2012).
Combat duty in Iraq and Afghanistan, mental health problems, and barriers to care. NEJM (July 2004)
PubMed search for "PTSD veterans" results.
PubMed search for "TBI veterans" results. TBI stands for Traumatic Brain Injury.
Make the Connection, bringing generations of vets together for mutual support and counseling.
Suicides — United States, 1999–2007 Centers for Disease Control (January 2011).

Saturday, September 8, 2012

Serious business: reporting bad doctors, saving future patients

Most doctors do good. They do lots of good, all the time, every working day. They're not perfect (nobody is) but they do far more good than most of us have a chance to.
Moreover, most specialists were drawn to their specialty because they thought it was the coolest and most intriguing use of their time and skills.

It's helpful to realize that it doesn't so much take brains to get through med school, as the ability to work really hard on your own behalf. Moderate intelligence is enough, if you can be a solid student. It's just a lot of hard work, with a guaranteed career at the end of it. This might explain why so many docs are simply mediocre, and most of the time, that's really all they have to be. The trick is knowing when that's not enough.

No profession -- in fact, no large human grouping -- is exempt from the reality of the bell curve. And this means that, while a few physicians are truly outstanding, a few are truly vile; a  few are famous, and a few are totally invisible; most are somewhere in the middle.
Almost all docs are honestly doing their best, and when they give up (which sounds like, "It's all in your head" if they're chicken, or "there's nothing more I can do" if they're not) or screw up (which sounds like, "whoops... it's not my fault" if they're chicken, or "I'm truly sorry, I'm still only human" if they're not) it's because the science, their imagination, or their intelligence is not always up to the challenge.

And that's fair. Our science is vast but still inadequate to match reality, and not everyone is a genius, not even all doctors. We have to be realistic.

A very few are exceptionally smart, exceptionally diligent, and exceptionally good at communicating effectively with patients. They are at one tip of the bell curve, where miracles happen and people beat the odds.

A very few are exceptionally egocentric, have an exceptionally good act, and are exceptionally good at communicating with administrators (which is a special skill.) They are at the other tip of the bell curve, where others' losses and suffering increase exponentially while the doc's career blossoms in the adulation of those who don't need them for care.

A few docs are so insulated from consequences and so accustomed to power that they become something distinct: they do more actual harm than anyone outside Congress or the judiciary can manage, and since they can't be voted out, they need to be stopped some other way.

It's rare, but, sadly, it happens to those hardest-pressed to stand up to them -- and their obvious allies.
Those of us with rare and complex diseases are bound to hear of them, because rare and complex diseases are prone to develop "cults of personality" around physicians and institutions that get a good article written about them because the subject itself is cool.

These vile docs are a tiny, tiny minority, but they do exist, and sooner or later, we have to deal with them ourselves or aid our friends who do.

In a litigious country, it's important to know what the agendas are. So let's be clear about one thing, before going further with this article.

  • Those of us with CRPS and related conditions are not vindictive, we are desperately in search of effective care.
  • We typically exhaust all reasonable means of resolution, long after any normal person would have given up in frustration and despair. 
  • So, by the time WE are ready to trash a doctor or an institution, they have earned it -- in spades.
The merely careless, ignorant or foolish are damaging, but still not worth our very limited time and energy.

When you really have to stop a doctor, you'll know.
While I do believe in evil, I don't think anyone is past saving... but in order to redeem themselves, some people have to lose what they hold most dear. They have to hit bottom.

In rare cases like this, where the lives of others are fodder for the cannon of someone's willful and soulless arrogance, I have no trouble with that. Let 'em hit.

How does that happen?...

By them losing enough of what matters most to them, that they have to either change or fail. Bad doctors in rarefied positions have huge egos and huge paychecks, and in practical terms, that is what matters most to them.

Egos and paychecks are tied together by reputation.

If you've been a victim, you can help re-adjust their reputations to something more in line with reality. This could really aid their personal growth. (Nice way of putting it, eh? Still true.)

If you've discussed it online and you've kept your paperwork, you've done most of the work already. It just involves cleaning up what you wrote to your friends, adding a few links, and laying your hands on the documentation created and collected along the way. I'll write more about that soon, but for now, you can start with what you can easily get.

So here are some ways to do the most good:
  • Report the physician/s to the licensing board in your state.
    You can't do much about what happens after that, but it goes on record and makes that doctor's/institution's future screwups harder for them to do damage control on. And there WILL be future screwups.
  • Review the physician or organization online.
    These review sites get read by patients, doctors, and doctors' staff, so patients are warned by your record of consistent stinkery and -- bonus! -- a really stinky review often gets back to the physician via other physicians, providing "reputation readjustment" among the very people they most value. It sounds cruel, but hitting them in the ego is second only to hitting them in the pocketbook in terms of the salutary effect you can have once constructive efforts have been exhausted.
  • Submit letters to the editor in that doctor's or institution's area.
    These are followed by the PR departments of hospitals, government agencies and universities (this means that university hospitals will have a double dose of PR departments.) Docs who make the institution look bad, cost money. Once they look like they'll cost too much, they lose their jobs... And, at higher levels, find it very hard to get another one.
In the end, maybe it's not about whether you can get what you needed in the first place. Sometimes, it's about protecting others, your cohorts in need. There are a lot more of them than there are of either vile doctors or great ones, but at least let's steer them away from the vile. You can save lives this way :) ...


...With surprisingly little effort, now that you know where to find all the links you need to get started.

How to report damaging and dangerous doctors

AMA FAQ on reporting physicians:
Don't be intimidated by the prim, imperative language. You've probably done almost all of that already.

Contact info for physician licensing boards in all 50 states:
This is who has the authority to revoke a vile physician's right to practice. A consistent record of vileness can't be overlooked once it gets to this level.

How to review your providers online

This site is well known and widely used. Even though it's generic, physicians themselves have told me they fear bad reviews here:

Doctor-specific review sites:
Reputable. You need to register.
Find the doctor, click "About This Provider", look under "Patient Satisfaction,"  and click "Fill Out a Survey About [doctor's name]".
Looks rudimentary, but it's been picked up by several national news outlets. Also, it has the perfect URL for its mission, so it will grow.
Seems relatively new. Could be worth it, if it saves one more person.
Ideal for institutional-level stinkiness. You can set up a petition and this org will do most of the legwork to get others with relevant interests to sign it. This then gets mailed to the institution with aaaaaall those names on it. Also, if it's a good story and the news folks are awake, it can hit national TV. Now THAT's pressure!

Letters to the editor
- Guidelines for writing letters to the editor:
Most important advice: keep it focused, human, and snappy. Cite relevant recent news (on the institution, the doctor, the disease, health care, etc.) so it feels like part of the larger reality (which it is.)
- Links to major news outlets' Letters pages, with submission guidelines:
- Or search "letters to the editor [your state or city]" for more relevant links.
These not only come back to the hospital administrators, but are followed by politicos. It's a good way to make a big stink, especially given a good paper trail and a link to your petition. If you're lucky, it could trigger some investigative journalism.

You can also research investigative journalists in your area, and pitch your story as an idea for a project. This is more time-consuming than the other options, and not all of us have that time or can make those contacts.

Not the last word

Once a reputation has been trashed, it's very hard to recover... And sometimes that's the only way to keep these hateful, [expletives deleted], predatory, self-serving, [more expletives, really vile ones, also deleted] from hurting others.

It would be helpful if more doctors stepped up to the plate and helped corral their own. It's this damaging minority of trolls who stain the image of all doctors.

Any physicians who know of means to do that, it would be tremendous if you'd let us know... If only to assure us that some effort is being made. Even after roughly a decade as a nurse and another as a patient, I know of no mechanism that still lets you police your own -- so if it exists, it's awfully coy. It's too easy to feel abandoned by the profession when we wind up in the hands of someone like this, and see the colleagues near them just shut up and knuckle under. If there were a wider pool of colleagues they had to answer to, it would help us to know that.

If you're in the awful  position of needing to use this info for yourself or a loved one, please comment and let us know how these methods work for you.

Best of luck. May all your future doctors be good, capable, and really know their jobs.

Monday, July 30, 2012

Pain is a pity, but really ...

I got a remarkably thoughtless comment from someone on the physician-driven site,
"Everyday is certainly a struggle for people with CRPS because they live in pain 24/7. While there is no cure for the disease, it can be slowed and likely to go into remission if treated early, ideally within three months of the first symptoms."
This remark was so fatuous and misguided that I found it alienating, but it raised several important issues that do come up -- especially in regard to people who mean well but don't know much about it (regardless of their educational level.)

Here are the main points of that remark:

1. Pain is why people with CRPS are to be pitied.
2. It's incurable, so don't go there.
3. It can be slowed or pushed into remission...
4. If you catch it really early.

Those of you who've followed me, know what's going through my head right now... "Where do I even start?"

Not with # 1. We'll have to come back to # 1. Let's go in reverse order.

4. "Diagnose it early, ideally within 3 months of first symptoms." Physicians control diagnosis; patients can only control how they respond to it. Since most cases of CRPS aren't even diagnosed for YEARS, that's not a useful remark. Say it at every medical workshop you go to; leave it out of a patient-driven site, because it's a slap in the face.

3. The remark on remission is slighly confusing.  Remission in CRPS is not like remission in cancer. It's a fragile state which can revert at any moment over the slightest thing. It's nothing like a cure. Remission is still possible years on, as the anecdotal evidence indicates.

2. A cure, as they pointed out, doesn't exist -- yet. And, with the wrong clinical focus and a hopeless clinical attitude towards a cure, it's no bloody wonder.

It can be cheaply prevented in ~80% of cases by 500 mg vitamin C, 3 times daily, for 2 weeks before and 3 months after surgery (or 3 months post-injury.) That's much more realistic than CRPS getting diagnosed within months, but so few people know about it that it doesn't happen much.

Result: lots of needless CRPS.

Spread the word about 500 mg vitamin C. It could save lives.
Most people who don't have CRPS focus on the pain as the reason for sympathy. Everybody has had pain, and the idea of pain is what they think they can identify with...
The pain of CRPS is like nothing else I ever experienced before. Yet I was an emergency nurse, motorcyclist, weightlifter, runner, horse rider, gymnast, martial artist... and a statistic, having endured more than one attempt on my life. (I've had an eventful life.) Plenty of opportunities to hurt; always recovered fast.

Yet, despite the often show-stopping pain I now live with, PAIN IS THE LEAST OF MY PROBLEMS. It's the weakness, autonomia, and cognitive decline that are the real problems.

That's where the research needs to be.

That's where the help is needed.

That, honestly, is where the most empathetic and useful sympathy lies :-)

Imagine feeling your ability to think, learn and remember simply dissolving, and there is nothing at all that you can do about it. You can hope it will come back to some degree, and eventually it does (if you avoid everything you're now sensitive or allergic to, eat tons of antioxidants and greens, drink lots of water, and don't screw up anything about your life at all -- while you can't remember what just happened, let alone all that you have to do...) but you know there are no guarantees, and after awhile, the repeated gapping starts to add up.
Free Clipart Picture of a Wedge of Swiss Cheese. Click Here to Get Free Images at Clipart

For a brain, that sucks, eh?

Doesn't that seem a bit more distressing than physical pain? I think so. It certainly has more of an effect on what I can do with my life.

Pain can be pushed through; the weakness, autonomia and cognitive decline are virtually impossible to push through.

Why is that? Because I need my muscles to be able to recover in order to rebuild melting muscles, my autonomic nervous system (ANS) needs to work well enough to let me regain control of my ANS, and I need my brain to work out how to help my brain.

It's like opening a box with the crowbar inside.

Relentless attention to activity, food and supplements, and state of mind are mandatory for a bearable life -- not because of the pain, but because of the weakness, autonomia and gradual brain-death. In order to barely stand my ground, I have to dance as fast as I can.

That's very hard for most people to wrap their heads around. It seems too hard. But to those of us with chronic CRPS, it's just another day. We have to manage all that and still somehow keep food in the house, laundry done, bills paid... relationships intact.

This focus on pain, to the exclusion of the more thoroughly disabling issues, has led to a serious misapplication of resources. A lot of lives have been damaged or destroyed because of that willful blindness in the medical and treatment domains. So it frustrates me, especially as a passing remark dispensed from a physician-driven site. (I wonder where their funding comes from... )

Sympathy is a lovely instinct, it really is, and I sure don't want to discourage it. Though I don't see sympathy in the remark I quoted above, I have heard people without CRPS express genuine sympathy in nearly identical terms. And they really do mean well. That matters!

There's a lot to be said for being sympathetic to someone's actual problems, which may not be exactly what you might expect. This would lead to more understanding, better connections to those who have it, more effective help, and in the end, to more effective care.


This morning, I woke up from a dream where I was running an international conference on CRPS, where 3/4 of the presentations were given by non-physicians: expert patients, massage therapists, PTs, acupuncturists -- you know, the people who really know about CRPS, and the stuff that really works for the real problems it causes.

In this dream, doctors could get a lot of CEUs, but they had to spend 60% of their time in non-physician workshops to get them. (How did I come up with 60%?) There was, how shall I put it, a certain amount of fussing about that...

It was a weird dream. Who knows, though, it could happen... It might do people like that staffer at a world of good.

Sunday, July 29, 2012

Reading uses split focus in the eyes and fusing in the brain

This study looks at how the eyes behave when reading:

It explains an observation I first made about 35 years ago, sitting on the rug and watching my family read.

The old assumption was that both eyes look at the same letter at the same time. Speaking as a reader, I had sometimes wondered about that, especially when you read in chunks rather than letter by letter. I felt like  my eyes weren't quite together, and when I looked at my parents or brothers reading, especially when I looked from below, their eyes seemed to focus a whisker or two below the page. If they were absorbed and reading fast, their eyes seemed to focus further below the page, like they were physically climbing into the book eyes-first; if they were less intrigued, their focus was nearly exactly on the page.

It turns out that, when reading, the eyes focus a letter or two apart, and that polysyllabic portmanteau words can be read half by one eye and half by the other. The slightly split image is joined in the visual cortex of the brain by a process called fusion.

Fusion combines the slightly different images from each eye in the primary visual cortex, right at the rear of the brain. It serves several purposes: gives us the complexity of 3-dimensional vision; lets us interpret faint images more accurately; and, in reading, it apparently lets us move faster.

Focusing a letter or two, or even half a word, apart, would partly explain why my family's eyes seemed to be focusing slightly below the page. When they get around to studying avid readers reading avidly, I think they'll find that the eyes can diverge quite a bit more than a letter or three.

Tuesday, June 5, 2012

Neuroscientists show how brain responds to sensual caress

Until now, medicos thought that first we perceived touch, then we assigned meaning to it. This study indicates that, in heterosexual men anyway, meaning is assigned to touch at the same moment the touch is perceived.

Fortunately, they do plan on investigating other demographic groups, including other ages, gender and sexual orientations.

I tend to assume that men are hot-wired to respond positively to sensual touch, in a way that seems pretty indiscriminate to many women; and, of course, straight men are socially far less likely to feel all that vulnerable or threatened by those who touch them than most other demographic groups.

It'll be interesting to see what turns up when they examine the responses of demographic groups with more inflections around tactile sensation. This is an interesting start.

Friday, June 1, 2012

CRPS, ANS dysfunction, and chronic vertigo

The central nervous system is bathed in fluid. This fluid provides a buffer against shock, as well as providing a good medium for the transmission of chemical signals. (Electrical signals are handled by the neurons.) The central nervous system is extremely sensitive to dehydration, which is why headaches are so common: most people are somewhat dehydrated. We consider ourselves too busy to drink water and whizz it out again.

Water is also the main ingredient of blood and lymph. These two essential fluids bring nutrition to the cells, transport chemical signals such as hormones and regulatory signals, and carry away cellular garbage. When there’s not enough of them, that doesn’t happen very well. More garbage piles up in the tissues, aging happens faster, disease trends faster, our muscles get stiffer, it’s harder to recuperate from injuries and illnesses, our sex lives suffer, and we just don’t feel as good.

With that in mind, not having the time to drink in water, process it through, and whizz it out again doesn’t really make sense, but a lot of us are really attached to that idea.

Reality checks

One of the really ducky things about diseases like CRPS, especially when there is strong autonomic involvement, is that normal quantities of fluids (and vitamins, proteins, and other nutrients) are often inadequate to our unusual metabolic needs. It may be possible for a basically healthy person to meet all their needs with three good meals and three or four liters of water per day, but for systems so consistently under siege as those with CRPS, it may be impossible to meet metabolic needs within these (otherwise very reasonable) parameters.

I have several friends with terrible vertigo, due to autonomic dysfunction in CRPS. This isn’t the, “I held my breath too long,” kind of dizziness. This is the kind of dizziness where you can’t keep your feet under you, you feel like you’re going to throw up, and it JUST WON’T QUIT.

The mechanism behind this has only been researched recently. It's not very well understood. I'm hoping for an informative comment from an expert on this...

What’s happening (partly) is that the vessels, which are directed by the autonomic nervous system, are flopping open too much. This means that the normal amount of fluid in the blood, lymph, and cerebrospinal fluid has to fill a space that’s considerably larger than normal. What you get is a type of hypovolemic shock, where the brain and major organs simply can’t get enough nutrition, oxygen, and garbage collection.

This normally happens on a short-term basis, after some assault on the system; normally, it’s either corrected quickly, or the person dies.

There are very few instances where this happens continuously over time, but with CRPS, some people have to live with it. It can make doing anything impossible, and if you try to imagine, just for 5 minutes, what it’s like to be that desperately dizzy and try to do anything -- even get a fork to your mouth without bloodshed -- you’ll see what I mean.

Sometimes, these symptoms can be somewhat reduced. There are pharmaceutical and mechanical approaches, each with its drawbacks and benefits. Since doctors (and many patients) tend to think in terms of pharmaceuticals first, let's start there.

Pharmaceutical management

Whenever you think in terms of disease and pharmaceuticals, it's important to keep in mind that:

  • Every system is unique.
  • Every system with CRPS is even stranger.
  • Unless you're a doctor getting a visit from a pharmaceutical rep, there is no such thing as a free lunch. Everything you take in affects your whole system. With our systems under siege, it behooves us to be mindful of our chemistry.
NB: This is not intended to diagnose, treat, or cure any disease. Consult your physician with any questions, and if your doctor can't give you a credible answer, get a referral to someone who might be able to.

Vasopressors, which can help restrict blood vessel size, have mixed results. They depend on the regulatory system being able to work somewhat, which is problematic in CRPS. Moreover, they have their own side effects, and given what a cocktail of medications most people with CRPS are on anyway, this can be quite noticeable. It has to be handled on a case-by-case basis.

Anti-dizziness pills, such as Atarax, affect the central nervous system and tend to make people sleepy and goofy. They are related to antihistamines and acid-suppressing medications (H2 inhibitors), and for those with hotwired immune systems and the nutrient assimilation problems common in chronic CRPS, they're not without side effects. Moreover, because they address only the generic mechanism for dizziness, but not the particular mechanism for CRPS/ANS vertigo, they don't necessarily help in these cases. Also, case-by-case basis.

Some SSRIs, typically used as antidepressants but extremely effective for nerve pain, can also provide support for the ANS. There is additional benefit to the use of SSRIs, because of their assistance with the nerve pain component of CRPS; when they can also improve the autonomic nervous system, it's a big deal. Naturally, SSRIs being the idiosyncratic category that they are, it can take a few tries to find the one that works best in each person's system. As I learned the hard way, getting the dose right can be a long and interesting task, given the idiosyncratic nature of our systems.

Mechanical management

Mechanically, it’s possible to increase blood volume by taking in lots of fluids, even if you already drink “enough.” “Enough” is a relative term, and what’s “enough” for a person with a normal autonomic nervous system may be “completely inadequate” for somebody with vertigo due to CRPS.

Blood pressure is a complex system, involving more than just fluid, vessels and the brain. Maintaining electrolytes helps contribute to a healthier fluid balance, and towards that end, sometimes doctors suggest increasing your salt intake. That only raises your blood pressure when you already have a predisposition to high blood pressure, so it may not be obviously useful; however, adequate sodium is important in maintaining renal function and supporting potassium levels.

Potassium is another key electrolyte, along with magnesium (found in Epsom salt), calcium, and bicarbonate. It doesn’t take much; four or five of the smallest grains of Epsom salt, stirred into a glass of water, can make a noticeable difference when you are magnesium depleted. Also, it usually makes the water taste better.

It’s easy to tell when you’ve taken too much, partly because it doesn't taste good, but especially when it gives you the runs. Less is generally better than more!

Bicarbonate is better managed by eating plenty of vegetables, rather than trying to supplement and get the dose just right. Having an overly alkaline system doesn’t feel very good, either.

Calcium and magnesium are present in food, especially if you’re eating plenty of nuts and leafy greens. If you have CRPS, you really want to eat plenty of nuts and leafy greens! They provide so much in the way of A and B vitamins, antioxidants, minerals (which support cellular processes and regulation), healthy fats (which help your body absorb your nutrients and protect your nerves), fiber, digestible protein (which helps your body absorb the calcium), and so much else of what your body really needs.

Activity, even horizontal activity, even just stretching out gently in bed, provides the body with much needed prompting about how to keep things moving. It keeps your muscles loose, so that your body is more comfortable to live in; it also activates sensors in your joints which communicate with your body’s regulatory mechanisms, and this helps with maintaining blood pressure (one can only hope it helps enough.)

Any movement is better than no movement.

Changes in position should happen slowly, which is terribly frustrating, but it’s going to take as long as it takes. If your body doesn’t get to move, it forgets how to handle itself in movement. This becomes a negative feedback loop.

So, keep moving, even if you’re not moving in any way that the doctor would recognize. Frankly, most doctors are somewhat limited in their ideas of what constitutes exercise. Most of them have no trouble walking from the car to the office, let alone from the bedroom to the kitchen.

Don’t let perfection assassinate your drive towards improvement. Do what you can, and don't sweat the rest.

  • If you can’t run around the park, walk around the block;
  • If you can’t walk around the block, practice ballet or t'ai chi with one hand on the back of the sofa;
  • If you can’t do that, fire up YouTube and do chair qi gong or chair yoga;
  • If you can’t do that, stretch out gently in bed, and do range of motion exercises. (This is a wonderfully pretentious term for moving each limb all the way up, then all the way down; all the way in, then all the way out.)
There is always something you can do to keep your joints active.

Moving your joints sends a message to your regulatory centers that they need to pay a little more attention to your blood pressure. That’s why it’s important to stay active. Our regulatory systems are screwed up enough; we need to keep them gently tuned, and be persistent about it, even when it seems absurd to do so. The habit of activity will serve you well for the rest of your life.

I'm aware that there are some herbs that have tonic effects on blood pressure and possibly the ANS. I would love to learn more about that.

Assume there is a future, and that what you do, even little things, can change how it goes.

That’s a good general policy, anyway. Especially with CRPS.

While I’ve known all this for many years, applying it to CRPS has been an education. When I’m able to focus a little longer, I’ll put together some references. Meanwhile, any of you who have references, either to support or contradict any of this, would be very welcome to post them in the comments.

I look forward to better science and better medicine for chronic vertigo in CRPS. It's so thoroughly disabling, yet so thoroughly underrated.

Saturday, April 7, 2012

Closed-heart aortic valve replacement, good surgery and good science

Here is an article from a San Antonio, Texas paper about replacing the aortic valve in the heart without cracking the chest, but instead using a minimally-invasive catheter technique:

This is absolutely thrilling news. Open-heart surgery is one of the most inherently worrisome and fraught forms of surgery, with an unbelievably painful post-op recovery phase. Simply cracking the chest is a big deal, and anything they do after that might be tricky but it's not nearly as shocking to the body.

Taking the chest-cracking out of heart surgery is the single biggest change we can make to safer, saner, faster-healing, less complicated heart surgeries. We WANT people to survive the experience intact, we really do!

Aortic valve issues are, as I recall from my ICU/Telemetry nursing, one of the more common heart issues; although it's not often life-threatening, it is often life-limiting, because without that "aortic kick" that the heart gets from a good, solid snapping-closed of the aortic valve during a heartbeat, the pumping action just isn't as good, and that has knock-on effects that can pile up over time.

Weak aortic valves can contribute to everything related to an impaired heartbeat, including blood pressure, vessel competence (think of congestive heart failure and tissue swelling/edema), and most obviously to cardiac hypertrophy, where an underpowered heart grows extra muscle to try to push blood around. What that really does is create more demand for blood from the heart itself, and push more blood back out the incompetent aorta!

Now that surgery can correct aortic valve issues without open-heart surgery, watch the medical news over the next 2-3 years: you're going to see a lot more studies directly relating aortic valve problems to other conditions, like those mentioned above. Why now? Because, once a problem can be solved, physicians are much more willing to look at the problem directly.

Just like the rest of us. :)

It's important to note that, for people with CRPS who have to avoid surgery as much as is compatible with life, and for those with dysautonomia for other reasons, this surgery is a game-changer. No longer do we have to choose between increasingly incompetent valves and a lifelong upsurge in agony, disruption, and dysregulation. Now, we can have a surgery that goes near two major nerve bundles but, if properly done, touches neither; solves the problem and gives us our hearts back; and lets us get on with making the best of our lives.Talk about a win/win!

Saturday, March 31, 2012

Link between fast food and depression confirmed, not clarified

This article states that around 5% of non-depressed people go on to develop depression when they eat junk food of the baked-goods variety (like croissants, pecans spins and Twinkies) or fast food.

Link between fast food and depression confirmed

The authors assume the link is causal (fast/junk food causes depression), but I don't see why. Many people only eat fast food and carb-rich junk food when they're already depressed and want the temporary solace (and serotonin/insulin hit) of comfort food. It might be smarter to eat more trail mix, olives and avocados when we're depressed, and leave out the Twinkies, but the fact is they cost more.

So, is the fast food/junk food self-medication for depression, contributor to depression, or both? It makes more sense to view it as a sign that something is amiss, rather than leaping to the conclusion that fast/junk food itself is the problem.

When people need to self-medicate, they're going to find a way. And at least fast food is not going to cause as many accidents as alcohol, as much ruin as harder drugs, or as much disease as compulsive sex -- all of which are popular forms of self-medication for depression.

Something to consider... We need not leap right to the blaming mentality. We can treat these changes in habits as useful clues instead.

Thursday, March 8, 2012

Repeated stress knocks out the prefrontal cortex

... In a number of ways.
This article describes a new finding which relates memory loss and cognitive dysfunction to a loss of glutamate receptors in the prefrontal cortex (PFC):
They state that this is why the PFC tends to falter in the face of repeated stress: the receptors for one of the key neurotransmitters become depopulated, leaving fewer sites to accept the glutamate and allow that part of the brain to do its job.
Cognitive impairment in the face of repeated or chronic stress is not a monolithic problem, though. Memory and decision-making are probably the most complex of brain tasks, and there are plenty of things that go wrong when memory and cognition fail.
Other factors include dopamine depletion, leaving less of that transmitter to carry messages back from the PFC, thereby making executive decisions harder to make and still harder to follow through on. (I wrote a previous post on dopamine and decision making. I'll dig it up and link over.)
And then there's the adrenaline overproduction and overuse that characterizes chronic and repeated stress, leading to disruption of the hypothalamic-pituitary-adrenal axis (the body's entire signaling structure for body processes) which contributes to brain dysfunction in still more ways: by disrupting sleep, which disrupts memory formation and impedes logic; and by contributing to the rise of metabolic syndrome, creating less stable blood sugar -- which, in the brain, adds considerable insult to injury: a hungry brain is a low-functioning brain.
Take your vacations. Simplify your life. Move your body around regularly. Meditate early and often. If you cherish your brain, you might as well let it work -- and that means getting a half-Nelson on stress before it gets one on you.

The article on overuse of dopamine (on my Living Anyway blog):
Another Biowizardry entry on neurotransmitters:

Saturday, February 11, 2012

Numeracy: The educational gift that keeps on giving?

This is about what we used to call numeric literacy:

I have problems with using the word "numeracy" to mean "numeric literacy", but I can adapt. To me, the word "numeracy" means "of or relating to numbers"; therefore, to be numerate means to be of or relating to numbers, and that doesn't make sense. 

This spasm of reflexive linguistic conservatism will pass and then we can get to the point...

Numeric literacy (however you name it) results in better decisions. Those who are numerically literate are better able to understand information that's represented by quantities and numbers, and not be confused by sloppy descriptions and poor representations. They have better outcomes in health care, work and other areas where decision-making really pays off. 

The fun part is, that this article's writer makes the point that the spin doctors are gonna pounce on this, as if they haven't already:

"This has implications for how policy makers and others should communicate about the risks of medicines, earthquakes, climate change, and the stock market."

Caveat emptor, from here on out!

Make your decisions emotionally if you must, but get the data first, so at least you can really see what you're risking. 

Then, remember your fifth grade math and see how the numbers add up. (The kinds of statistics that get published in the news rarely require anything more, so don't let the math intimidate you.) That intellectual integrity can save your life. 

Saturday, January 14, 2012

Blood sugar and mood

"ScienceDaily (2012-01-10) -- Patients simultaneously treated for both Type 2 diabetes and depression improve medication compliance and significantly improve blood sugar and depression levels compared to patients receiving usual care, according to a new study."

In plain English, this means that people with non-insulin-dependent diabetes need to be treated both for diabetes and depression; when that happens, twice as many get stable.

This falls under the Department of the Blitheringly Obvious, because -- as anyone who has hypoglycemia, or has dealt with diabetics knows -- depression is the first sign of low blood sugar; low or unstable blood sugar leads to poor decision-making, notably poor food choices; poor food choices lead to unstable blood sugar, and round and round we go.

To break the cycle, both must be addressed. Otherwise, the cycle continues feeding on itself... er, unfeeding on itself. Or something.

As anyone with common sense who has dealt with the mentally ill knows, the first intervention is a proper meal. It's simply amazing how things improve with a little real food inside.

Unstable blood sugar worsens pain, impairs memory, and limits cognitive function. Low blood sugar specifically creates an unhappy state.

A hungry brain is not a happy brain!

Treating type II diabetes without treating depression, or treating depression without treating underlying type II diabetes, is not a recipe for success. The fact that as many as one third of these diabetic patients even get better, is pretty remarkable. Treat both, and over 60% of these people go back to cheerful, stable, productive lives -- not needing sickleave, additional benefits, or other direct and indirect expenses.

Sounds like a good cost/benefit profile to me!

Wednesday, January 11, 2012

Valuable gadgetry means good data

OK, this stuff is cool enough to make me want to keep my iPhone:

iPhone glucometer:

iPhone blood pressure monitors & trackers:

I'd like to design a mobile app for tracking and managing pain. Flareups and neurotoxic food sensitivities wouldn't stand a chance. Touchscreens rock for radio buttons and simple data entry; just have to make it easy to pick what you need and dump it into a dashboard with different ways of viewing the data -- historically, by symptom, by factor; graph, chart, etc.

Collecting and tracking your own data is key to surviving and thriving with a long-term condition.  It is possible to make good use of gadgetry, though it's not something I usually focus on.

Any of you developers want to write the backend?

Sunday, January 8, 2012

Gender & personality -- the US isn't everybody!

This ScienceDaily article reports on a study which states that the personality differences between men and women are simply enormous and have been substantially underreported for years:

However, if you read the actual methodology used in the study, you'll see that the entire population studied was from only one country, the US:

"Personality measures were obtained from a large US sample (N = 10,261)"

This is culturally arrogant at best, but it's now intellectually indefensible. It has recently been demonstrated that one of the most profound gender differences in the brain (math ability) is purely a cultural artifact, when you look at international populations:

Therefore, what the original study says -- that there are enormous personality differences between the genders -- is deceptive. All it means is that, in the U.S., huge gender-based personality differences are tolerated, or even encouraged and trained.

As an international traveler all my life, I could have told you that for free!

In the math study, one researcher said, "People have looked at international data sets for many years. What has changed is that many more non-Western countries are now participating in these studies, enabling much better cross-cultural analysis."

In short, there is no excuse for such sloppy social science as the "gender-based personality differences" researchers have perpetrated.

Believe it or not, the U.S. is not a good template for studying the entire human population. It's only a good template for studying the U.S.

Since these scientists are working from Italy and Britain -- both countries with famously self-satisfied national identities -- you'd think that would be more apparent to them.

It's disturbing to see such cultural subjugation in science. One expects a degree of cultural infatuation in other realms (like cinema and music, which depend on cultural blending for their development), but not in science. Science requires a bit more intellectual integrity, if not clearer thinking.