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.

Emerging Stroke Recovery Treatments? Yeah NO.

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Just caught this over at Dean's stellar stroke-recovery site:

An article called "Emerging Treatments for Motor Rehabilitation After Stroke."  They include:
1. mirror therapy
2. motor imagery or mental practice
3. constraint-induced movement therapy
4. noninvasive brain stimulation 
5. selective serotonin reuptake inhibitor medications

A coupla itzy problems: These treatment options have been around for at least a decade and at least one has little proven efficacy.

Let's get the 5th one out of the way; these meds (SSRIs) are things like prozak and paxil and they usually treat depression. They've been used forever to treat depression in survivors. Do they help depression, yeah. Do they help you recover, no. SSRI's effectiveness-- if you take JAMA's word for it: meh. BTW, Mild to moderate depression is probably better treated with exercise. (A review here from Harvard.) And exercise is what survivors ought to be doing anyway, so its a two-fer! 

The 2nd and 3rd I've been involved in published clinical trials and have written about in my book, blog entries and magazine articles. In fact, our group, led by our fearless leader Stephen J. Page, was the first to do a modification of constraint induced therapy, and the first to look at motor imagery post stroke. And this goes back to the late 90s. "Emerging Treatments." Yeah. No. I've written about it extensively in every edition of my book as well as magazine articles, journal articles and every talk I've ever done.

Mirror therapy has been around for stroke, again, since the late 90s. I've written about it in this blog, in my book and in every talk.

Noninvasive brain stimulation is nonspecific but they're talking about Transcranial Magnetic Stimulation (TMS), which has been around for quite some time. Our group has done

a lot of work with the "next gen" of this called Navigated Transcranial Magnetic Stimulation -- basically its more accurate. But there is no research that shows that sapping the "stroked" brain with TMS does anything--yet. Promising, maybe, but not much there...yet.

So we have 3 "emerging" treatment option that have been around for more than a decade, one option that probs does not work and one that we're not sure what it does or how to use it. 

Lumosity: NOT generalizable.

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I've said before and I'll say it again, "brain training" games -- like those developed by lumosity -- have very little proven

efficacy. Do they change the brain? Yes. But so does just about everything else. Let me explain... there was a story that we used to tell in the lab and it went like this...

"If I throw you a set of keys, and you catch it, there will be neuroplastic change. 

If I throw you a set of keys, and you try catch it drop it, there will be neuroplastic change. 

If I throw you a set of keys, and you just watch the keys hit the floor, there will be neuroplastic change."

So do "brain traing " games change your brain? Yes. The change your brain to be better at the games. If the end result you want is to be better at the games, have at it, and become better at those games. But are the skills that you gain from these games generalizable to anything else in your life? Not that we know of.

Here is a recent article that says... well, let's put it this way... if you work for luminosity, you'll hate it...

A Consensus on the Brain Training Industry from the Scientific Community 

Again, the key word here is "generalizable." Here's another article that makes the same point: "The authors conclude that memory training programs appear to produce short-term, specific training effects that do not generalize."

More here

Poor taste public service announcement!

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Have a look at this cartoon. In poor taste, yes. But it manages to raise awareness and it does it in a way that is comically accurate. Here is your quiz: Watch the vid and then do this: Just below the cartoon, highlight the invisible text by right clicking and dragging to the bottom of the post. Therein lies my observation of what the cartoon gets right. If you'd like me to add anything I've missed, put it in the comments or email me.

Highlight text below↓↓↓↓↓↓↓↓↓↓↓↓↓
1. Drop foot 
2. Inability to clear ground during swing phase of gait 
3. Flaccid left upper 
4. Lack of sensation left upper 
5. Caregiver concern regarding driving 
6. Difficulty with spacial issues while driving 
7. Left hemiparesis, no aphasia! 
8. "Stroke! Stroke! Stroke!" Its a public service announcement! More of the episode here...

In the comments section Jim Sparks points to a part in the episode where a treatment that is not proven to work, works!

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"Instant gratification and how it may hurt you" OR "It works great (and that's the problem)"

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You want to eliminate drop foot? 

Use an AFO, done!

You want the elbow to straighten?

Tap the triceps, done! 

  

You want the hand to stay open? 

Put a splint on, done!

You want to improve balance? 

Give 'em a walker, done!

You want to have them talk better? 

Give them a language aid, done!

You them to swallow better? 

Feed them thickened liquids, done!

In every case, and many more, short-term "instant gratification" often gets in the way of a more complete recovery. 

Why and how?

The irony of stroke is that deficits to lifting the foot, swallowing, balance, etc. are exactly what needs to be embraced to promote recovery. So instead of throwing an external aid at the problem, sometimes its best to challenge the challenge.

• If you want to speak French better, do you get an app?
• If you want to learn how to work on your car do you hire a better mechanic?
• If you want to be better at driving directions do you get a GPS?

In stroke, sometimes it is better to use the aid, no doubt. But choose your acquiescence wisely.

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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.

AFO after stroke: Once its on there, its on there for life.

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(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.)
For years I've been pointing out how what clinicians focus on can hurt recovery. Clinicians focus on having the patient be safe and functional (able to do everyday tasks). Clinicians have the "safe and functional" mantra running through their heads constantly. There are two other things that influence what clinicians will to use to help survivors recover:   

1. What managed care will pay for

2. What therapists know about stroke recovery

This leaves a very small group of available options. These options may or may not lend themselves to promoting the highest level of recovery. Recovery, yes. But not necessarily the highest level of potential recovery.

I think the best example of this is the AFO. 

Before I get too technical, let me ask you a hypothetical.... Let's say you're a survivor. Your ankle is not moving well after stroke. But you know that recovery is unpredictable. 

Here's my question: During the time in which your ankle is trying to come back, would you put it in a cast? Probs not. If you casted it and the ankle tried to come back it wouldn't be able to. It would be stuck in one position by the cast. This is where clinicians lose the plot (as the English say). They see this ankle issue as an ankle issue. But its not an ankle issue! Its a brain issue. And what's the first rule of the brain? What's the one rule that everybody knows about the brain? 
Use it or lose it.

Now this (casting example) is only a slight exaggeration of what happens when stroke survivors are put into an AFO. 

Generally, AFOs are prescribed by clinicians waaaay too early. The brain has not revealed what it's capable of doing during the first few months after stroke. This phase, known as the subacute phase, typically last from 3 to 6 months. Clinicians will often prescribe the AFO in the first, second or third month after stroke.

And even before that... sometimes within the first 2-3 weeks after stroke, there is an effort to somehow bind the ankle in such a way that it is not required to move.

These all essentially lock the joint, disengaging the ankle muscles from what they've been using to lift the foot at the ankle since that survivor was born.

So why do clinicians do it? 

Simple; They don't focus on what the brain needs. They're more... peripheral in their perspective. They're about muscles and bones and tendons and ligaments. You you can't see neurons, can't see the brain, can't see the brain "reawaken" after stroke, and you can't see cortical plasticity. The mind, for many clinicians, is out of sight out of mind.

And who do they listen to? Orthotists. And what do orthotists make? AFOs. So will the orthotist say to a clinician suggesting an AFO, "Naw, AFOs lead to learned nonuse." Probs not.

It's not that clinicians mean to do you harm. They want you to be safe and functional. They want you to be where you want to be: home. So there is a trade-off: Put you in an AFO and get you home safe and early, or wait and see what develops. Here's one thing that managed care won't pay for: Waiting to see what develops. 

Its the instant gratification thing. Put an AFO on and survivors walk better instantly! But they also promote muscle atrophy, lock the joint (which joints hate because they like to move) and may lead to learned nonuse.

AND AFOs discourage walking.

"Hey mom, dad didn't put his ankle thingy on!"

"OK, lets just take the wheelchair!"

(Wanna know how hard it is to put on an AFO with one hand? This hard! ↓ ↓ ↓) 

Oh, and one more thing... once the AFO is on there, its on for life. Why? Because an AFO will atrophy both the neurology and the muscles involved in walking. Further, it will so change your "gait kinematics" that NOT wearing will become a risk. 

BTW: I'm not saying AFOs are never appropriate. Its just that they are not appropriate too early and they're not appropriate for everyone.

Further reading: Here.

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.

Stroke Statistics zzzzz

15 million people suffer stroke worldwide each year.

In the USA...

• 10% of survivors recover completely or almost completely recover.
• 25% recover with minor impairments
• 40% experience moderate to severe impairments that require special care
• 10% require care in a nursing home or other long-term facility
• 15% die shortly after the stroke
• Approximately 14% of stroke survivors experience a second stroke in the first year following a stroke.

If we concentrate on the people who may need help with recovery we'd include survivors with

• minor impairments to... 
• those requiring care in a nursing facility 

This includes everything from occupational therapy to AFOs. Therefore...

11.25 million people per year worldwide will require these services and equipment. 

Resistance Training After Stroke

Got a good question the other day about resistance training the other day. Please see the Q&A, below...

Q

     I am a 43 year old stroke survivor(2010).  I walk ok(not too pretty), can do light manual work, and can't run.  My left affected side is considerqbly weaker than my dominnant, nonaffected right side.

    I want to return to higher impact activities one day, but I just don't think I have the physical strength to do so.

  I have read several articles by Sroke survivors who benefitted greatly from barbell-base systematic weight training as a  means to advance recovery.  

    One writer mentioned (book) as a good place to begin.  It emphasizes combination weight exercises that employ multiple muscle groups and run through a full range of motion.

    Do you have any opinions or clinical experiences on the subject  of Strength Training following Stroke or could direct me towards some materials to get started?

A

     I did a quick review of the literature (example) and found that there's a general consensus that resistance training is a good thing post stroke. A really good thing. But there seems to be no consensus on what type of resistance training it should be. 
    Keep in mind: Resistance training can injure. There are a ton of questions before you begin, like...

1. How stable is your "bad" shoulder?
2. Will you have the strength and coordination to hold whatever (barbell, band, etc) and not drop it?
3. Do you have sensation enough to know if you are injuring the limb?

    One concern that therapists mistakenly have is that if you use muscles that have spasticity you will increase the spasticity. This is wrongheaded, and not true. So don't worry about using spastic muscles to help move you.

    I have seen people who've had a stroke run again. They're almost always young (younger than 60). I would think that as long as you are okay with "a new normal" the sky is the limit.

   
The hard part, of course, is putting the work in.
Previous article I wrote about this subject.

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!