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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.

Power PICC line is in

I am now the proud bearer of a new Power PICC line. The procedure went smoothly once I understood it and the risks vis-a-vis a simple line with the powerful chemo Taxotere.

This is what it looks like.

It can stay in for up to several months, needs weekly flushing, and should last until I am ready for a new port.

The Avastin and Taxotere infusions were also smooth and given that I am bouncing on Decadron, I should have plenty of energy today and tomorrow. We'll see what happens later in the week.

Meaningful: Driving Stroke Recovery

When practicing to relearn movement effort should be task-specific. That is, tasks or component parts of a task should be practiced.  Choose tasks that are very meaningful. The more meaningful the task, the more motivation available. The more motivated, the more effort will be brought to bear. The more effort exerted, the more neuroplastic (brain rewiring) change will be driven. 

What motivates you? Fear? Friends not dropping by because you can't play cards anymore? Clients not trusting you because you've had a stroke? Recovery is not supposed to be comfortable. A dash of desperation is necessary.

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.

Is walking right after stroke good?

I've been involved in stroke recovery research for a long time. And I do a lot of seminars on stroke recovery. A lot of clinicians that come to the seminars take this posture: Just tell me what the treatment options are and how to do them. This demand assumes that there are a lot of treatment options. It also assumes that those treatment options are "proven." And it assumes that things can be made simple and immediately clinically applicable.

Overall the posture suggests Dunning Kruger effect. The Dunning Kruger effect is simple and measurable:

1. The less you know about a subject, the more you estimate you know.
2. The more you know about a subject, the less you estimate you know.

The Dunning Kruger effect in action: You ask two people about galaxies; one is an astrophysicist, the other is a six-year-old. The astrophysicist says, "There so much more that we need to discover. We're not even sure how many there are." You ask a six-year-old and he says, "I know all about galaxies. There is a moon, and he goes up and down, and it squiggles, and then there's the Earth and the sun goes around and around and you can take a spaceship to it."

The Dunning Kruger effect in post stroke rehabilitation
 
We don't know much about what helps stroke survivors recover. There. I said it. That there is a lot of confusion about what helps stroke survivors recover does not sit well with rehabilitation clinicians. And one of the reasons it does not sit well is that there are a lot of folks that try to sell treatment options that are "proven." This mucks up the waters. Let's say you're a therapist looking for answers. Are you going to listen to the person who says "Well, we really don't know, we're not really sure, none of this is proven, but this is what we think..." or are you going to listen to the person who says, "I have this great thing that works and it's super fantastic and it works all the time." The folks who are real sure that their treatment option is the bees knees of stroke rehab are often out to sell something. Like a machine, or a "pay us to learn" technique. But those of us in the research game are more equivocal.

In other words, the thing that research does, which is discover things layer by layer in a slow plodding scientific process, is not very satisfying.

Let me give you an example. I got an e-mail recently from a therapist who had been to the seminar. This therapist asked a very specific question: "Is very early mobilization after stroke good or not?"

Mobilization means "Getting them up and walking." "Very early" is a designation that means within the first 24 hours of the first symptoms of stroke. Simple question, right? The answer should either be yes. Or it could be no.

Except it's neither. It's "We don't know." In the few studies that have been done on this subject (there are ongoing studies which might provide more clarity) the conclusion is, we don't know. On one hand, it is commonly believed that many problems early after stroke are caused by immobilization. Problems caused by lack of early movement/walking include infections (especially in the lungs) and blood clots breaking off and causing all kinds of vascular problems. Further, getting somebody up and walking after stroke, especially in animal experiments, seems to help promote brain plasticity.

The problem is that the brain is very vulnerable after stroke. And one of the things it's vulnerable to is decreased blood flow. And when somebody is in an upright position is decreased blood flow to the brain. 

A quick review of lit...

• The Cochrane review: At present there is insufficient evidence to support or refute the effects of routine very early mobilisation after stroke.
• An article looking at quality of life: Conclusions. Very early mobilization may help improve long-term quality of life after stroke, particularly in relation to functional independence, but this requires further examination.
• An article where they interviewed therapists, docs and nurses: Conclusion: Our study shows that most clinicians had concerns in relation to early mobilisation of stroke patients and more clinicians had concerns for haemorrhagic than for ischaemic stroke.
• An article looking at very early mobilization and depression: Conclusion: Very early mobilization may reduce depressive symptoms in stroke patients at 7 days post-stroke.
• Early mobilization out of bed after stroke may be all good: Conclusion: It seems to reduce severe complications but not cerebral blood flow:
• Early mobilization out of bed after stroke, maybe: Conclusions: Insufficient data are available to prove the beneficial effects of early mobilisation after stroke.
• A Very Early Rehabilitation Trial for Stroke (AVERT): Conclusions: Very early mobilzation of patients within 24 hours of acute stroke appears safe and feasible.  
• The LEAPS trial (the largest study ever done on post-stroke rehab): "patients who received early locomotor training experienced more multiple falls."

There. Does that clear things up?

Yes! Stretch!

The small units that make up muscles are called sarcomeres.

Help! Stretch me!

Sarcomeres shorten when we contract our muscles. When we stretch for a long time, there is an increase in the number of sarcomeres. Literally, muscles get longer.

For example, increased flexibility is directly related to an increased number of sarcomeres. One of the ways that the number of sarcomeres can increase happens to all of us: Growth from birth to out 21st year. Growth in the length of bones during childhood provides a prolonged stretch of muscles. As muscles are stretched to their physiological limit they react by developing an increase number of sarcomeres. Stretch has to be of sufficient duration for this remodeling of muscle to occur.

The opposite is true as well. When muscles are left in shortened position, the number of sarcomeres decreases. Nothing provides a prolonged shortening of muscles like spasticity after stroke and brain injury.

So all the rules of stretching are thrown out the window when the muscle is spastic.

How is spastic muscle different than normal muscle? Let me count the ways...

Spastic muscles... 

•have lost some (if not all) communication with the brain.

•are often kept in a shortened position on the "bad" side for long periods of time.

•are not subject to the same rules of stretch. (That rule: The more you stretch the longer the muscle will become.)

Spasticity after brain injury keeps muscles (on the "bad" side) in a shortened position long enough to lose sarcomeres.

It comes as some surprise to most therapists, but there is very little scientific evidence that stretching muscle reduces spasticity. In the very short term there is a small reduction in spasticity. But spasticity is not reduced in any lasting way by stretching because spasticity is not caused by muscles. Spasticity is caused by brain injury. Brain injury causes the brain to cede muscular control to spinal reflexes. Increasing the number of sarcomeres will not reduce spasticity. If it did, every case of spasticity would be eliminated by a regimented stretching program. And wouldn't that be nice?

Soooooo... Should you not stretch? No! I mean yes! I'm confused! Yes, you should stretch!

Why should you stretch? Because even if stretch has no lasting effect on spastic muscle, there are several reasons to do it anyway. Stretch... 
•feels good 
•reduces spasticity for a sort amount of time 
•is good for joints 
•may be good for other tissue besides muscle (ligaments, veins/arteries, nerves, skin, etc.)

Stop the therapy cap!

Addendum 9.18.14: 
As of today 220 members of the 435 congressmen have signed on as co-sponsors of the House bill to repeal the therapy caps. --Thank you Rebecca Dutton!

Let's say you've had a stroke. Not much of a stretch, huh? Now imagine a federal algorithm that determines the amount of therapy you'll get before you even have a stroke. Can't be done you say? Every stroke is different and so would need a different amount of therapy. 

You'd think the amount of therapy you'd get would be based on what the clinicians sitting in front of you think you need. But yeah, no. That's not the way its done. 

For stroke survivors the amount of rehabilitation available has progressively fallen as subacute stroke inpatient stays have dropped to an average of less than 16 days and as Medicare has capped the number of outpatient therapy sessions to 15/year.

And what really confuses me is why the Federal guidelines are not in concert with what the research says! 

So, if you're with me on this, click the red image above and let 'er rip. 

PS, the congressman who had a stroke, how much therapy did he get given the insurance provided congress? "...nearly a year of intense, grueling physical and occupational therapy." 

Hemianopsia (visual field cut) after stroke: The Neuroplastic model

Note: There are two free resources for retraining vision after stroke. Both are on the right hand column of this site (-->). Click on "Vision Problems? Click Here!" and/or "Tx for hemianopia and spatial neglect".

Sometimes survivors "neglect" their bad side. Survivors who have neglect don't pay attention (don't see or even recognize as their own) the "bad" side. In fact, it can be so bad that they don't even look at the "bad side" half of the world.

There are a ton of terms for this phenomenon. Unilateral neglect is the most common. Other terms are... 

• unilateral spatial agnosia 
• unilateral visual neglect 
• hemi-inattention
• hemi-imperception

This inattention may be caused by visual deficits on the neglected side— a problem of the eyes and eyesight. The problem with eyesight that cuts off half the world is called hemianopsia.

Or it may be a matter that the brain is not processing information coming from that side, including vision. Or it could be both of those (vision and a brain problem) together. 

Unilateral neglect and the brain 

What do we pay attention to? There's lots of stuff in this great big world so we make choices about what we attend to. But someone with unilateral neglect can't/won't pay attention to their "bad" side.  

The "neuroplastic model of stroke recovery" was a term I coined based on the observation that, no matter what deficits are left the survivor there are groups of researchers trying to develop "brain rewiring" treatments to reverse those deficits.

The neuroplastic model for Unilateral neglect becomes really clear if you look at it as more of a "won't" issue and less of a "can't" issue. If a survivor won't, it suggest that they could. Because if they won't then maybe their perspective can be changed so they will. So reducing inattention can be helped by paying more attention. 

With unilateral neglect inattention to the affected side is bad for obvious reasons. But Inattention is also bad, because, as this book points out: Inattention results in confusion, and confusion increases inattention. So what can be done? How do you get someone or yourself, to attend; to pay attention? 

Therapists contend that you should approach and do everything on the affected side so that the stroke survivor attends this affected side. However, it's a good idea to start off on the good side, otherwise, you may not know if the survivor is even paying attention to what you're trying to communicate with them. For instance the survivor may not understand instructions, context, spacial issues, etc. So do all the early teaching stuff on the good side.

To start with, survivors can be encouraged to turn their head towards the neglected side. Eventually, the survivor should be encouraged not to turn their head, but to move their eyes towards the neglected side.

It happens more often with people where the left side of their body is the "bad side." This may have something to do with the fact that we tend to be "right eye dominant." That is just in the normal course of human events, the right eye is the one that we more trust, and use.

Using tactile stimulation can help survivors be aware of the neglected side. You can use touch on the affected side, or rough cloth, a vibrator, etc.

It's a good idea for survivors to understand that they have neglected side. If it's a vision problem, be aware that you have vision loss on that side. Examples in the room around them can be used. You might say how many chairs in this room, and the survivor would only count half of them as they would neglect half the room, and therefore have the chairs.

Don't deny...

 "...unaware of the complete nature of the disability and even deny it, blaming the problem on eyeglasses that are too weak or a room that is too dark."

Nerdy take:

 "To enhance the integration of scanning behavior during functional tasks such as gait and dressing, the client should be reminded of scanning principles and carried through a series of scanning exercises before initiation of the activity. If inattention reappears during the activity, the therapist should stop and assist the client in becoming reoriented before the activity is resumed."  

I miss my old self (too)

One of the laments that I hear a lot from survivors is "I miss my old self." But please, survivors, keep in mind – we all miss our old self.

I feel grrrreat!

I am as indestructible as I feel!

We often tend to look at the past fondly simply because we were young. But we're all getting older, slower, achier – and- as if tipping our hand of our aging interior – our looks take a hit.

So let's say a stroke survivor had their stroke 10 years ago – when they were 40. Now they're 50, and they "Miss their old self." It is true that stroke ages you immediately. The estimate I read recently is that the stroke itself ages you at least five years. That is, your brain is five years older, your body is five years older, etc. – all within the first 24 hours of stroke. So when survivor say "I miss my old self," I can dig it.

Doing well!

I haven't had a stroke, but I can tell you, 50 ain't 40. That is, you wouldn't be how you remembered irrespective of the stroke. So when you compare, compare to the projection of yourself given the added age.

So, like the rest of us, as you work against the deficits of the stroke you are also working against father time.

Crap I didn't even know I had aches.

I do know some stroke survivors who are in some of the best shape of their life after their stroke because this was really the first time in their life that they look after themselves.

Dangerous Phrases

In the Seinfeld episode "The Kiss Hello" George Costanza describes his physical therapist as “… so mentally gifted that we mustn't disturb the delicate genius.” This could describe many of us involved in neurorehabilitation. We assume that we’re making the treatment choices for stroke swurvivors because we have a lot of experience. A lot of experience is a good thing, right?

Not necessarily.

“It works in my patients”

Neurorehabilitation research is now in a “golden age” with an exponential rise in diagnostics. This allows researches to test new treatments ever more accurately. We can now see, with functional magnetic resonance imaging (fMRI), the work of the brain as it attempts to control movement. Triangulate changes in fMRI with computer-driven kinematic data capture, movement outcome measures and algorithmic data analysis and a three dimensional view of patient progress become startlingly clear. But like the proverbial tree falling in a forest, are therapists listening? 

“It works in my patients” represents observation as justification of treatment. Researchers call observations “anecdotal data.” Anecdotal data does not carry enough scientific weight to justify therapeutic interventions as best practice. Researchers do not consider observations robust enough to be published in journal articles, and journal articles provide the foundation for evidenced-based practice.

Example: I know a PT who perseverates that he has “fifteen years of neurological experience.” I recently asked him what therapeutic interventions he used for reduction of spasticity. He listed 5 or 6 treatments that “…reduce spasticity in my patients.” His answer was remarkable for two reasons. First, few of the interventions were effective, using peer-reviewed literature as metric. Second, he was not trained in measurement of spasticity, so even if something did work there’d be no way to measure success, or report that success in his notes.

“I’ve seen research that said…“ 

It is rare to find a therapist who reads rehabilitation research. Therapists often rely on textbooks and lectures from school, research filtered through magazines or seminars. There is nothing inherently wrong with these sources of information, but the process does promote a scatter-shot perception of available therapies and can lead to a patchwork of treatment strategies, which may or may not be considered “best practice.”

College and university professors often tend to teach what they know and they know what they were taught and what they've used clinically. This provides an echo chamber in which present teachings are based on old, often refuted, research. Proof of this is available through a quick Internet perusal of course descriptions and syllabi for PT/A and OT/A programs. The most didactic and clinical neurorehabilitative teachings on the secondary education level involve treatment techniques that are 50 years old and that remain largely unproven. Textbooks cannot possibly keep pace with the enormous amount of research that unfolds, daily. Our best hope remains the development of the doctor of physical therapy (DPT). DPT’s tend have an inherent appreciation for peer review research and, just as important, they have the skills to access that research. For their part, practicing therapists and assistants hold some responsibility to pull the best that rehabilitation research has into their practice. Entropy often exists because therapists are more comfortable with the known that is ineffective than something new and effective, but that has to be learned.

Example: I finished a talk on neuroplastcicty in stroke and a PT came up to me and said, “That stuff on neuroplasticity was really interesting. The only problem is that if the stroke survivor has loss of sensation and proprioception then there’s no way to get them to move in any sort of functional way.”

I was glad for the question because it was something I’d done quite a bit of research on. I discussed with the therapist how a critical mass of studies has shown that relatively normal and functional movement can be relearned without sensation and proprioception. The therapist was correctly referencing research but was referencing research that was over 60 years old and had been successfully and completely refuted in a large amount of animal and human studies. Therapists often know research. But now more than ever research has become such a fast moving beast that, don’t blink, what was “true” may no longer be.

“I use a mix of therapies”

Many therapists are successful, and many renowned, for a particular therapy mix. And it may be true that their mix that they’ve developed provides superior outcomes. But there are two inherent problems with using therapies not subjected to standardized testing:

1.    There is no way to know if the therapy actually works. Anecdotally (see “it works in my patients,” above) it may work but since there has been no clinical research there is no way to establish efficacy.

2.    Since a “mix” of therapies is inherently complicated to define in terms of dosage and individualized treatments for individual patients, actual definitions of the therapy are difficult to pin down and subsequently impossible to duplicate and test.

Example: I spoke to an OTA program recently and showed some data that a particular therapy technique was not effective in chronic stroke survivors. While I was speaking I noticed that a few of the students were hiding their faces. “What?” I asked. They whispered, “Our program director loves that therapy, she’s certified in it and says it’s the best.” After I finished speaking the program director came to the podium and I said, “I’m sorry. I didn't mean to insult—.“ She cut me off. “It’s OK, I use a mix of therapies,” she said.

I didn't have ANY data on her mix.

Sen. Mark Kirk has skin in the game. Twice.

Below is a video of Sen. Mark Kirk. He had a stroke back in January. He appears to have left hemiparesis, and some dysarthria. He seems like a really hard worker who deserves to get every bit of recovery he can. He's a great inspiration. But.... He has this line at the very end of the video: 

"I can't wait to go back to work to vote to spend less..."

He is a fan of the way health care is being run now. And I guess he should be. It seems as if no expense was spared in his case. He probably has money, and that doesn't hurt. But much of it was paid for by his congressional healthcare plan. And here's some funny... 

"Repealing President Obama’s healthcare law would let members of Congress keep their government-subsidized insurance coverage after they retire — a benefit they lost under the health law."

Full article here.