Oh, you wanted answers, now I get it!

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Stroke survivors and caregivers are often frustrated with stroke recovery research. Why are the simple questions not even asked, they wonder. Typical questions are:

1. Why are there no "head to head" comparisons between interventions. For instance, why don't they compare electrical stimulation to the Saeboflex?

2. Why don't they combine interventions the way a therapist would do therapy? For instance, why aren't there studies that look at electrical stimulation and the Saebo flex?

3. Why aren't simple questions answered, like, "What is the most effective treatment option given my level of arm movement?"

These are the sort of questions that confuse people that are not in research. I hate to be an apologist for research and researchers, but let me offer some insight...

Head to head comparisons are never done, in any pathology, for any intervention, initially. For instance you probably didn't see a lot of comparisons between different cholesterol drugs, initially. One company makes a cholesterol drug, they put a lot of research into it, and then they put it on the market. A second company does the same thing. But both those companies will make money off of those drugs, so the cost of the studies are justified. If there's a comparison study done, nobody's can make any money. In fact, one of the two drugs is gonna look really bad, and sell even less. So who's going to fund a study like that?

Now you may find studies that compare different cholesterol drugs. Cholesterol drugs have been around since the early 1970s. Rehabilitation research into stroke really started in the mid-to-late 90s. It wasn't that people weren't doing research before then, it was just that the outcome measures were really poor. Let's put it this way, to test how well somebody was moving-- prior to the mid-1990s-- we used a fancy protractor, and a VCR. Now we use kinematics labs. Prior to the early 1990s we had no way to image the brain, and now we have MRI, functional MRI, transcranial magnetic stimulation, and on and on. 

Again, not to be an apologist for researchers, but there are other issues as well. For instance, when should you do the studies? Should you do them when the stroke survivor is acute, or during the subacute phase, or the chronic phase? Or should you do all three? It takes some time to explain, but recovery is very different during those three phases. And here's another problem: recruitment. It is very difficult to recruit stroke survivors during the acute and subacute phases. It has to do with the fact that, first of all, you can't get in the way of "standard of care." That is, it is unethical for research to get in the way of what a stroke survivor would typically get. Also, what that standard of care is doing is considered a "confound" in research. A confound is something that the researchers have no control over. In this case the confound would be the therapist, and the therapy that the therapist is offering. Each therapist is different, and each therapy or combination of therapies is different. The researcher can do nothing about those variables (confounds). 

Also, for acute studies, it's incredibly difficult to recruit. "Hi Mr. Smith, my name is Pete, I'm from research down the hall. You had a stroke two days ago. Would you like to get involved in a clinical trial? Is now a good time are you, or are you busy?" You see the problem.

The reason they don't combine interventions is because we haven't even figured out if the interventions by themselves work. Within one intervention, let's say electrical stimulation for example, we don't even know what the proper dosage should be. Is it a half an hour three times a day? Is it 15 minutes five times a day? Does it depend on how well the stroke survivor moves to begin with? What about their spasticity-- how does that affect things? So research tends to focus on a very tight question. Let's get that tight question answered first, then we can be pretty safe to start as the second, third, fourth... 15th question.

What works best for what stroke survivor in what situation is impossible to determine at this point. The algorithm for this stuff is incredibly complicated because the stroke can hit any part of the brain, people can have different sequelae (symptoms other stroke), and different comorbidities (illnesses outside the stroke). Further, they can be of different motivational levels, different ages, and on and on.

But that doesn't help you. You don't have time. If you're reading this blog is because you need answers now. The good news is, if you're willing to educate yourself a little bit, your guess is as good as ours.

Good luck.

The rules of recovery

There's a difference – in my mind – between recovery and rehabilitation. Recovery is getting back what the stroke took. Rehabilitation is a medical model that may or may not help recovery.

I'm a fan of rehab for the most part. Good rehab from (approximately) the first week, through the first year in a system with folks who are trained and with the fundamental equipment needed to promote recovery, represents the best that can be done. But for most, this in not close to the reality.

But instead of trashing the system and the people in that system, let me focus on recovery. The rules of recovery are simple. The process is dauntingly difficult, but the rules are simple. 

What are the rules of recovery?

The rules of recovery are the same as deeply learning anything arduous; lots of hard work, lots of repetition, lots of planning and constantly looking for breakthroughs.

Of course, there are a few flies in the ointment. What of spasticity? What about the classic stroke Catch-22-- if you can't move, how do you repeat a movement? If the ability to be rational is gone, can the level of effort needed be achieved? And then there is the huge number of other issues that can get in the way. Issues of balance and vision and sensation and all the other illnesses that may befall us, and finally, aging.

The rules of recovery are the rules of every effort and every success. Let's not make it complicated.

Stroke Recovery. Its About Time.

Stroke survivors are given such a short time to recover. For everyone "motor learning" takes repeated attempts in order to rewire the brain. How much more effort must motor learning take in folks who have billions of neurons killed by their stroke? The numbers get very large. I've heard "2000 for a single joint" and " 140,00" "and "10,000" and "Tens of thousands" and" millions." But guess what? Every stroke is different. So the numbers for you and how you are trying to move are different than her and what she is trying to move. I think I've come up with the perfect number for everyone. This is based on my dozens of peer-reviewed coauthored studies, and clinical research at both the Kessler Institute and the U of Cincinnati. But the number is algorithmic and gets very complicated. Ready? Here's the number...

"A lot."

It is commonly and scientifically accepted that that it takes at least 10 years to become an expert in any field. We ask stroke survivors to relearn difficult tasks such as walking within a few months to a few years of their stroke. And all this difficult motor learning is done against a backdrop in which portions of the brain that is usually used for walking is deceased. And then there's all the other variables like other health issues, depression, lack of energy, natural aging and on and on.

Anyone who has children and has gone through boxes and boxes of Band-Aids and knows that motor learning is a challenge. Skinned knees and elbows attest to this. It takes years for children to learn how to walk. How much time do we give stroke survivors whose primary neuronal circuitry for walking has been taken off-line —6 months? Stroke survivors are best served through a combination of personal empowerment and guidance from therapists. No matter how ugly, no matter how synergistic, no matter how submerged in spasticity, each volitional movement should be encouraged. People with acquired brain injury will only drive their own neuroplastic rewiring through repeated volitional attempts, that “nip at the edges” of their ability. Therapists have traditionally focused more on quality of movement and functional relevance than on a confluence of gained active range of motion. No matter how incremental, increased active range of motion in all pivots and planes provides a template for any and all future movements.

BRAINS! (get used to it)

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     Out of all the organs in the human body we know the least about the brain. Every other organ in the body and we know to the cellular, if not the molecular level.

But the brain... You've heard the clichés, I'm sure; given the interdependence of neurons, the human brain is the most complex structure in the known galaxy, including the galaxy itself. The estimate of planets in the galaxy is upwards of 1 trillion. The most conservative estimate of the number of synaptic connections in the human brain is 1000 trillion! 

"But," you may think, "I can't even figure out which socks match my shoes." That maybe true, but remember: while you're trying to figure that out, your brain is keeping every one of the trillions of cells in your body in relative harmony.

We need to start looking at the brain. Yes, its squishy, yes its bloody, yes it is huge and pulsates in aliens from Mars. But we need to get over this "Its too weird!" posture, or we, its owner, can't really understand the darned thing.

Here's a place to start... Below is a video of the surgery for a subdural hematoma. This type of stroke is the least common (about 7%), but the most deadly.

Warning: this video is graphic. Frankly, I had a hard time sitting through it. I would suggest watching just one portion – a few seconds, from 1:32 to 1:39. This is the good part, where the surgeon rids the brain of this sort of cap of blood that has accumulated between the skull and the brain. If this sort of surgery is not done, the brain will continue to compress, furthering damage.

Enjoy!

Does "X" aid recovery after stroke?

What works and what doesn't work to help recover after stroke? Research has revealed three broad categories:
1. It works
2. It doesn't work
3. We don't know yet

There is tons we don't know about stroke recovery. Stroke recovery is a million different puzzle pieces, with no picture on the front of the box to help out. But there are some resources to help answer some of the questions (at least)...

There is one website that answers, in layman's terms, what works and what doesn't work. Although the list is far from complete, it's a start. Thank you Canada!

 

stroke blog

stroke blogs

AFO: You can check out anytime you like, but can you ever leave?

I often get questions about ankle foot orthoses (AFOs), and how to get out of them. I'm not a big fan of AFOs because they encourage a sort of "learned nonuse." It's actually more like "learned disuse." (Learned disuse: You're not learning to not use the body part, but you learning to use body part incorrectly.) And keep in mind, every movement you make changes the way your brain is wired. So it's very easy to get used to an AFO. Let's put it this way:

It's easy to walk into an AFO. It's hard to walk out.

In any case, I get a lot of e-mails about this subject. Here's an example:
 
I wear a big brace on my right leg. I am paralyzed on the right side. I walk with a one-point cane. I walk with an open hinge (articulating) AFO.
 
They opened the hinges on my old brace several years ago. I walk around my apartment with the old one. But when I go out I use the bigger brace which isn't open at hinges.
 
I read on Deans' Stroke Musings that you recommend the Air Cast. Which one for stroke survivor do you like? They have a lot of different ones on their website.

Here's my answer:

First of all, the disclaimer:

(Warning: ENDING THE USE OF AN AFO CAN LEAD TO FALLS AND INJURIES.

Never discontinue the use of an orthotic without first consulting the appropriate health care provider. Then call your doctor. Then have your doc talk to any other providers as needed. Then discuss it some more. Thank you.)

Wear a brace on the ankle that satisfies two things:
1. Keeps you safe
2. Challenges* you

*Challenge: Walking naturally challenges you to lift your foot. If you can lift your foot up and down to stay safe (not trip) then you might consider questioning an orthotic that helps lift the foot.

Gradation would usually be something like this:
1. Rigid AFO
2. Articulating AFO (where the ankle joint moves just a little bit)
3. A stirrup (stabilizes both sides the ankle but allows the ankle to move up and down freely)
4. A high top shoe (like a basketball shoe)
5. Nothing

Often the manufacturers are the best people to ask specific questions. One of the advertisers on this blog X-STRAP (see link on the sidebar) has a variety of products. Some help bring the ankle up during gait, others support the ankle. The stirrup is usually associated with one particular company: AirCast.

~

Stroke and Hyperbaric Oxygen Therapy

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Hyperbaric oxygen therapy (HBOT) is something that's often touted to help stroke recovery. HBOT involves the breathing of pure oxygen while in a sealed chamber. The oxygen is  pressurized at 1-1/2 to 3 times normal atmospheric pressure.

HBOT is used medically for the effective treatment of

• decompression sickness (commonly known as "the bends")
• severe carbon monoxide poisoning
• certain kinds of wounds, injuries, and skin infections
• certain infections

Does it work in stroke? Bottom line: There is insufficient evidence to recommend its use. And it does come with risks.

It may work but the ducks get in the way...

The story of HBOT for brain injury including stroke is full of clinicians, characters and quacks. One of them is William Hammesfahr, a neurologist. You might recognize the name; in the famous Terri Schiavo case Hammesfah disagreed with almost every other MD, saying that Schiavo could recover from what had been described as a "irreversible persistent vegetative state." Hammesfahr claimed that he could "cure" Schiavo to "the point of being able to communicate." Hammesfahr suggested HBOT should be part of Schiavo's treatment.

The board of medicine in Florida in 2003 accused Hammesfahr of "...performing medical treatment below the standard of care, engaging in false advertising concerning his treatment of strokes, and exploiting a patient for financial gain."

Hammesfahr also claimed to be "nominated for a Nobel Prize."  Someone had recommended him for the prize, but that someone wasn't qualified to nominate for the prize. "Qualified Nominators" are a very small and select group of previous laureates and academicians primarily from Denmark, Finland, Iceland and Norway.

Otherwise, I could nominate you, you could nominate me, and all would be peachy.

The legacy of weirdness continues when it comes to hyperbaric treatment...

The mantle for HBOT seems to have been passed from Hammesfahr to the Neubauer hyperbaric neurologic center.  (It is worthwhile looking at all the credentials. The photos are interesting as well...addendum 11.3.13, all links on that page now lead to a page that says " You have tried to access a link that does not have a page associated with it."). A great take on the clinic can be found here.  (Apparently, the director of the clinic holds no malpractice insurance. "Why?," you might ask. Read on!)

Still, it's not a question of personalities; the question is, does it work?

It may. Definitely more research needs to be done. It seems to work acutely in animal studies. In rats studies it seems as if there's a better survival rate as well as better outcomes if done within the first few days after stroke. This makes sense.  The brain is, during the first few days after stroke, trying to recover. Being hyper infused with oxygen is probably is a good thing.

And therein lies the rub. If you have a stroke survivor in the  HBOT sealed chamber during the first few days after stroke and there is an emergency you can't get to them. If you try to pull them out of the chamber immediately they get "the bends" described by Wikipedia thusly...

"Decompression sickness (DCS; also known as divers' disease, the bends or caisson disease) describes a condition arising from dissolved gases coming out of solution into bubbles inside the body on depressurization."

And bad things have been known to happen in the HBOT chambers. In at least some studies there is an increase in seizures. There've also been explosions and fires (remember this is compressed pure oxygen; highly flammable.) Here  is a case where a victim died, and another victim was critically injured in the HBOT chamber. The accident happened at the Neubauer Hyperbaric neurologic Center. 

Here is what I've gotten from my research into HBOT:

• A variety of reviews have concluded that was insufficient evidence to prove the effectiveness or ineffectiveness
• A 2005 systematic review of the evidence for HBOT in the treatment of stroke showed no benefit to the treatment
• A review of 12 randomized studies using HBOT with multiple sclerosis suggested that there is no clinically significant benefit from the administration of HBOT.

Bottom line: HBOT may work during the acute phase after stroke. However, a lot more research needs to be done and the safety issues need to be addressed before it can be recommended.

~~

Swallowing Trouble: Dysphagia

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My son Jesse, swallowing.

Dysphagia:  difficulty swallowing.

Stroke is the leading cause of dysphagia.

Approximately 62% of stroke survivors develop dysphagia at some point after stroke. Dysphagia is the most frequent cause of pneumonia poststroke. It can also delay other parts of recovery. (It's hard to recover when you can't swallow.)

 The treatment for dysphagia may follow the same neuroplastic rules as every other form of post stroke recovery. For example, repetitive practice of wrist extension will change the brain to make wrist extension easier as time goes on. But repetitive practice of wrist extension has no downside. The worst thing that can happen is that you get tired. But if you repeatedly practice swallowing there may be a risk. What happens if you can't swallow whatever it is you're trying to swallow? You choke! You may aspirate. Aspiration involves having whatever you attempt to "swallow" go "down the wrong pipe". Instead of going down the esophagus to the stomach, the material goes down the trachea to the lungs. Once lodged and lungs it can cause pneumonia. Why does it cause pneumonia? Because the lungs hate having foreign matter inside. So the lungs try to fight the foreign matter. The lungs attempt to fight the foreign matter is the very definition of infection. An infection in the lungs is called pneumonia.

There is a tendency for clinicians to undertreat patients with dysphagia. These clinicians feared that there is a risk of aspirating.

So, if repetitive practice works, but repetitive practice of swallowing is dangerous, what can you do? If a particular skill is not used (in this case swallowing), the portion of the brain that controls that skill will shrink. As that portion of the brain shrinks, the skill gets even worse. As the skill gets worse, that portion shrinks further... and a downward spiral is initiated. If the dysphagia patient is not swallowing, or not swallowing enough, the portion of the brain dedicated to swallowing will get smaller, and the skill will suffer. 

The movements involved in swallowing have been traditionally viewed as reflexive in nature. But swallowing also follows the same basic "repetitive practice equals more movement" rule.  But what if the person can't yet swallow safely in order to practice swallowing?

There is emerging literature that electrical stimulation may initiate the neuroplastic process. Again, this is not only true for the hand and foot emerging research indicates that the same is true for swallowing. Electrical stimulation may provide the "X” factor that provides small amount of movement on which to build more robust movement. This same continuum of care (e-stim to repetitive practice) is used by clinicians in rehabilitation hospitals around the country to reestablish nominal movement. Although not functional swallowing, electrical stimulation provides early steps towards regaining the ability to swallow.

In terms of the repetitive practice itself, the generally accepted way of safely repeating swallowing is called the "The Frazier Water Protocol". 

For a bit more science-y perspective, click here.

`=~

Stroke Survivors Are...

Athletes

There are two populations of patients who usually recover from stroke faster than others (or, at least, have a great advantage): Athletes (incl. dance, yoga, martial arts, etc.) and musicians. 

There are three reasons for this...

Reason one: There may very well be hypertrophy of the motor portions of the brain in both athletes and musicians. We know that massed practice will reconfigure the brain, with new neurons recruited and new pathways developed. And which populations are, by definition, involved in massed practice? Athletes and musicians. 

Reason two: As anyone who is either an athlete or a musician knows, both these populations know how to train. And I don't mean just, "Yeah, I did my therapy today" kind of training. I mean the "I dream about therapy, wake up and plan my day around therapy and dedicate most of my time to therapy," kind of training. 

Reason three: Athletes and musicians are often extremely motivated to get back to their instrument or their sport.

Both athletes and musicians understand all the factors that are important to stroke rehab. They know how to practice with vigor and focus. They know the commitment of time and resources that such practice involves. And they know that if their practice routine changes, they will get different results.

Stroke survivors are true athletes. Lower level athletes playing a higher stakes game. But on the other hand, they have the most devoted fans in sport: Their loved ones. And their families and friends have every reason, both altruistic and self-serving, to coach, cajole, encourage, support and embolden their athlete toward success.

The politics of stroke recovery

An extraordinarily interesting conversation broke out in my last seminar. Usually, I try to keep the conversations short and tight. We have a schedule, and I try to stick to it. But this involved about 10 therapists. And it was brilliant. It went like this...

We were talking about the acute phase after stroke. The acute phase is defined in different ways by different disciplines. For instance doctors will define it one way, therapists another way, radiologists another way, etc. The way that these different disciplines define the phases (from hyperacute to chronic) are important. All those definitions have different valuable uses. (Please note that the second edition of stronger after stroke has all the definitions of all the phases, along with suggestions about how to rehab during those phases.)

In any case, we were talking about the acute phase. I'll paraphrase what I was saying by taking a quote from the book...

"The brain remains in a very delicate state during the acute phase. The neurons of penumbra are especially vulnerable. Consider the studies of animals that have been given a stroke. Animals forced to do too much too soon increase the damage to their brain. In human studies the results of intensive rehab (too much, too soon) has been mixed at best."

The acute therapist then chimed in. They said that often survivors are sent home after their hospital stay. Once home they get a therapist to come to their house. But that kind of therapy, usually called "home therapy," is not generally as aggressive as what survivor swould receive from a rehabilitation hospital. Therapists who come to he home don't have many of the tools that they'd have in a therapy gym. 

So why are survivors often sent straight home? Managed care demands that they go home if they are not making progress. But if you take my suggestion (too much too soon is a bad thing) survivors won't make much progress, because therapy has to be -- for lack of a better word -- gentle. 

The time to make progress is not during the acute phase. (More about how therapy is "upside down" for stroke survivors here.) The time to make progress is during the subacute phase. But if survivors are discharged to home rather than to a rehab hospital, or outpatient therapy, they're not going to get aggressive therapy when they need it: during the subacute phase. Classic Catch-22.

One of the suggestions was that instead of sending people home, from the hospital they be sent to skilled nursing facilities (SNFs). But there is a problem with SNFs. It's the "N." N=Nursing. And people hear that and they think "nursing home." And so they refuse. They don't want to go to a nursing home.

But survivors may want to rethink this position. Skilled nursing facilities provide skilled therapy. Physical therapy, occupational therapy, speech therapy -- it's all there. It allows the survivor to get the most out of the subacute phase. It may also allow them to get good enough to go to a rehabilitation hospital, or an outpatient clinic that's very aggressive. 

SNFs can be used as stepping stones to more and better therapy. BUT: If the discussion is "We're going to park you at the nursing home FOREVER" that's not a good thing. SNFs are a nice place to visit, but you may not want to live there (although some are very nice!)

There so many ways that managed care works against the best interest of stroke survivors. This (too much too soon is bad, but if you don't show progress your discharged home) is just one example of how managed care drops the rehab ball.

~

DIY Stroke Recovery

There is a common suggestion among many in the "alternative medicine" industry expressed in the question: "If it means less business, why would your doctor want you to be healthy?" A strict emphasis on healthy lifestyle including diet and exercise would be like the proverbial "apple a day" - keeping the doctor away.

Doctors who do this - who keep themselves away as much as they can - are the best doctors. And therapists who "keep themselves away" are the best therapists.

Many pathologies allow for a definitive discharge point. The patient who has had a knee replacement gets therapy, and then goes home to live the rest of his life. But neurological disorders are different. Many, from Parkinson's disease to multiple sclerosis, are progressive. But what of non-progressive neurological disorders like stroke and traumatic brain injury? Does this "apple a day" philosophy work? Is there a point at which these populations no longer need therapists?

Many patients with brain injury (including stroke) believe that they will always need therapists. Most see therapists as essential to the recovery process, no matter how long (months, years, decades) it takes for them to achieve their highest level of potential recovery. But this view is incorrect.

There is a point at which therapists are no longer the fulcrum for recovery. Nor should they be, for reasons that range from financial to practical. At discharge stroke survivors are, and should be, in complete control of their own recovery. During the chronic phase of recovery from stroke, the speed of recovery slows. The physiological action of recovery is based on a lot of self-directed hard work. Much of what is required is relatively simple, and revolves around the broad concept of repetitive practice. In order to take charge, stroke survivors need to be given the tools to initiate and follow an "upward spiral of recovery." This term is used to describe the path to the highest level of potential recovery. The "upward spiral of recovery" is driven by real-life demands for everything from coordination to cardiovascular strength.

Hell Yes.

Can someone get better after they "plateaued?" Hell yes.

What is the plateau? 

It's the point at which all of the neurons that were "stunned" by the stroke have come back online. Why were the neurons stunned in the first  place? The stunning of neurons is known as "cortical shock." Neurons, right after the stroke, are fighting a battle to survive. And while they're fighting this battle, they don't work. These neurons eventually come back online. They usually come back online between one week and three or four months after the stroke. This is known as the subacute phase. (Note: there is no "one size fits all" timeline for these events. Two stroke survivors can have radically different timelines.)

In any case, at some point these neurons come back online. Recovery is sometimes very rapid and relatively "easy" during this phase. This kind of recovery, stunned neurons coming back online, is known as natural recovery, or spontaneous recovery. In other words, "Not a lot of work, but a lot of recovery."
 

Eventually, all of the neurons that were stunned are back online. The survivor "plateaus" and the chronic phase of stroke begins. Once this happens there is a discernible reduction in the rate of recovery. The reduction is because there's no neurons to come back online and help the process along. But recovery can still happen.

It's just that recovery takes a different form. Now neurons from around the brain have to be recruited in order to make up for the neurons killed by the stroke. This makes recovery a much different (and effortful) process during the chronic phase, than during subacute phase.

But... you hear this all the time. I even hear this from therapists. They'll say something like, "We ended therapy with this guy, 14 months later he walks through the door and he can do stuff that he couldn't do when he was discharged!" This sort of recovery can then trigger more rehab. Remember, rehab ends when the person plateaus. (Its a managed care thing.) So if there are changes in the ability to move, therapy can be justified. So you could go through the cycle where you work your butt off to get a little bit better, which then triggers more therapy. 

It's a beautiful cycle, and it can continue for decades.

~

Try: to attempt to do or accomplish

Here is clarification of a paragraph in the previous post:

Of course, there's a fine line between the exercise and movement needed to relearn movement. But the emphasis on trying to build muscle is as mistaken as changing the oil in a car with no gas: Its a good thing, but hardly the main issue.

This difference between exercise and repetitive practice (movement needed to relearn movement) may seem like a distinction without a difference. In fact, both build muscle and both drive plastic changes in the brain. The distinction is in the focus. Repetitive practice paradigms focus on driving changes in the motor and sensory cortices of the brain, not specifically in changes in muscle strength. Sure, muscles will build. But focusing on strengthening is like climbing a ladder to the top only to find the ladder is leaning against the wrong building. Stroke is brain damage. And, unlike most other forms of acquired brain injury, stroke involves just one part of the brain. So if a survivor is, say, 2 years post-stroke and they can’t open their hand and then, later they can, that is not a reflection of muscular strength. It is a clear indication of a change in the brain. The muscles have been there all along. Muscle strengthening is the easy part. 

Clinicians often sweat the fact that survivors have limited energy for therapy. But does it need to be very strenuous to be beneficial? No! The ability to open the hand (or lift the foot or straighten the elbow or move the mouth) can be done while sitting in a comfy chair. Each attempt should be focused and deliberate. The very ends of the movement should be the point of focus. Each attest is measured as a success if it is just beyond the previous attempt.

Two Roads Diverged...

There are two ways to go after stroke: 
1. Compensation (technically: The compensatory approach)
2. Recovery (technically: The restorative approach)

Compensation involves getting on with your life by any means necessary. If your right hand doesn't work, you do everything with your left hand. If you can't walk because your foot drops, you put on an AFO. If you have trouble speaking, there's an app  for that.

Recovery involves using the intact part of the brain to take over for the "stroked" part of the brain.

It would be nice to say that the focus of clinical rehabilitation is on recovery. But for the most part, managed care only pays for compensation. Insurance companies want to get the survivor safe, functional, and out the door. Why do they want the survivor safe? Because an unsafe survivor will cost them more money down the road (think falls). Why do they want the survivor out the door? Because every day in any clinical setting costs a ton of money. But while survivors also want to be safe, and out the door, is it in their best interest to be "functional"?

On the face of it, sure, survivors want to be able to function. "Function" is a catchall word that means "getting on with your life." And it's seductive. Everyone wants to be functional. Everyone wants to be independent, and able to function.

But there is a problem with function. And it's not just a generalized idea that if you "focus on function" you'll ignore recovery. It's a very specific concept based in neuroscience.

It would make sense that if you focus on learning compensation, you would spend less time on recovery. And this would mean that you would become better at compensation, but less recovered. But it's more than just a time issue. It's a brain issue.

It turns out that something special happens to the brain after stroke. The brain is in an almost "infantile state" after stroke (in fact, after any brain injury). And "infantile state" is a good thing. The brain, through a release of special proteins is "primed" for learning— like an infant's brain. But what will it learn?

Well, it could learn to compensate. If you are right-handed and you have limited use of your right hand after stroke, the brain could learn to compensate. Your left hand would be doing a whole bunch of things never did before. The left hand is now handwriting, attempting to tie shoes, brushing the hair and teeth, and dressing. And it's doing it all alone — no right hand to help. So during this period in which the brain is "primed" for learning, the left hand does all the learning.

But if the focus is not compensation, but recovery, there will be more recovery. The brain is "primed" for learning, and it learns to recover.

The Orthopedic Card

I'm about sick of what I'm starting to call "movement elitism." The idea is that, unless you move perfectly, you shouldn't move. Because… you'll ingrain "pathological movement patterns." I've railed against this before. And here it goes again...

Curious Person (CP)

Clinical Movement Elitist (CME)

CP: Why should a stroke survivor not move when they're alone? 

CME: Because they move wrong.

CP: What will moving wrong do?

CME: Make it so they'll never move right.

CP: So what should the survivor do to practice movement?

CME: Wait until there's a clinician around to tell them how to move.

CP: Won't the survivor run out of money eventually?

CME: It’s worth every penny because bad movement is bad. It will make moving right harder.

CP: Don't we all learn to move by correcting mistakes?

CME: Yes but survivors need guidance.

CP: Couldn't they sit in front of a mirror and model the movement of the "good" side?

CME: Yes, but they'd fail in the execution.

CP: So they need to be perfect right out the box?

CME: Yup.

CP: What if they can't move right?

CME: I move them.

CP: Doesn't that defeat the purpose any "productive struggle"?

CME: Survivors shouldn't struggle too much.

CP: Why should they not struggle?

CME: They'll move even worse.

CP: Survivors need lots and lots of repetitions to recover moment, right?

CME: Yup.

CP: And that has to do with forging new pathways in the brain?

CME: Yup. It takes thousands of repetitions to get the brain to regain control over muscles.

CP: How long do you typically see a patient?

CME: About an hour a day.

CP: How many repetitions do you have survivors do in a typical session?

CME: A lot...as many as we can.

CP: Did you know that the number of repetitions done in a typical stroke rehab session has been counted?

CME: I did not. Know.

CP: The average number of repetitions in a typical session for the arm is 18 and for the leg its 38

CME: It will take a while.

CP: How do you reckon the survivor will get to the thousands of repetitions they need?

The movement elitist may seem cornered, but they have an ace…

CME: Even if they could practice on their own, and even if that practice is beneficial, the bad movement will cause orthopedic problems like bad joint movement and pain. It may be good for their brain but it’s gonna be bad for their body.

CP: Couldn’t the improved movement and the better brain control lead to less ortho problems?
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