Clinicians: When it comes to stroke recovery: KISS

When it comes to stroke recovery, clinicians would do well to keep it simple.

There's two important reasons...

One. The coolest new stroke recovery stuff comes from neuroscience. And the neuroscience perspective makes things really simple. 

People hear the word neuroscience and they assume everything's going to get really complicated really fast. And while there is nuance in the brain that wins people Nobel Prizes, the global perspective neuroscience provides simplifies recovery. There is good news for people like me who spend a lot of time trying to explain stroke recovery: Some of the greatest neuroscientists in the world are really good at making the brain simple.

In other words, just as you don't need to know where the carburetor is— or even what a carburetor does— you can still drive a car. We don't need to memorize Brodmann areas, or the role of the substantia nigra, or the details of fMRI to understand how the brain works. What's much more pertinent, and much more interesting, are the global perspectives neuroscience provides. That is, if you use neuroscience not to answer "what is a carburetor", but instead to answer "where does the key go?" Where's the knob for the lights? Where's the turn signal? When it comes to the global perspective, neuroscience begins to answer simple but vital questions. Like:  

What does the brain pay attention to? What forces the brain to learn? What kinds of things can fool the brain into learning? What kinds of things—what kinds of simple things—can be used to challenge the brain in a way that's productive for relearning movement after stroke?

Two. The other reason it's simple is purely technical. Only the owner of the brain can drive changes in their brain. Because learning, including what's called motor learning after stroke, requires that the survivor understands the process, on some level at least, it has to be simple. 

Nobody likes complexity. But complexity can be even more vexing to somebody who has suffered a brain injury. Don't get me wrong, I've met plenty of survivors that are smarter than I am after their stroke. But most people have had a stroke are focused on recovery and keeping their life somewhat on track than complicated recovery options.

To review... 

It has to be simple because it is simple, and because stroke survivors generally don't do complicated.

Here's the good news: the stuff that works the best is really simple. It relies on core concepts like bilateral training, introducing rhythmicity, forcing use, repetitive practice, etc

I do a lot of talks to clinicians. And it's amazing how many people will trust a complex treatment that they really don't understand over a simple treatment that they would have understood the moment they learned how to walk. What I would counsel therapists is this: If it's too complicated for you to get it from a simple explanation, you should probably save your money and save your patient's time, because that complicated stuff usually doesn't work.

What is stroke recovery?

What are stroke survivors trying to do? They're trying to move better. 

Where does better movement come from? The brain!

Is the brain learning (new brain connections) or relearning (using existing connections)?

This debate has been around for a long time. Here's the question restated: If you've had a stroke and you're learning how to move better everyday. Is that movement learning or movement relearning? Is it new stuff (new neuroplastic change) or are you reactivating a part of the brain that used to do that movement?

I've been pretty successful selling to the world that it is all about neuroplasticity-- that it's all new learning. But that's only once the plateau has been reached. You know the plateau, that first big reduction in recovery? Prior to that most recovery comes from the brain "healing" (although "coming back on line" is a better description).



Click image to make bigger

So, lets review:

Before the plateau: Using brain that already knows the movement.

After the plateau: Using new brain to do the old movement.

Mental Practice Recordings now available!

Bottom line: We studied the effects of mental practice (MP) on stroke recovery. We used recordings so that participants would have a guided imagery experience. These recording were never made available to the general public. Now, an analog is available.  

To find the recordings, do this: At the top right-hand side of this web page is a button that says Mental Practice Recordings for Stroke Recovery. You'll find the recordings there.

My first job in clinical research was at the Kessler Institute in New Jersey. I was teamed with a scientist, Stephen Page. Steve had been a D1 swimmer at University of Tennessee. Prior to getting into rehabilitation I was a musician. So we had an athlete in the musician.  And we had support from Kessler's very large research department.

Early in our relationship Steve told me he wanted to do a study on mental practice (MP). MP is what athletes and musicians do to practice. But they don't actually physically practice, they only imagine the movement. When Steve told me he wanted to MP with stroke survivors I advised him against it. I didn't think the very soft "imagining" would get its butt kicked by the realities of hemiparesis and everything else that comes with stroke. A few weeks later he came to me and said, "I want to do mental practice for imagery with people with stroke". And again I advised him don't do it. And he countered with, "Well we got funding." So I said, let's do it!

There are a few things that our lab was known for. We were known for dosing studies with electrical stimulation. We were known for being the first to modify constraint induced therapy. Sometimes we combined MP with modified constraint. 

And we were known for early mental practice. Here's an early one, here's a later one. The MP stuff may have had the biggest impact. Therapists like it because they don't have have to burn through a lot of clinical time because the survivor did it themselves. And it didn't stress the survivor for two reasons:

1. There was a deep breathing part to begin and end the MP session, so it may actually reduce stress.

2. There was no actual movement, only imagining the movement, so there was no muscular stress.

And survivors liked it because they could do it on their own. they could do it after they had been discharged from therapy. And its didn't cost them anything.

The bad news is, you may be flaccid. The good news: You may not be.

Flaccid. The word is used to describe a lot of stuff from music to political rhetoric. And it's never good. "Dude your band is totally flaccid!" said no one ever. And when it comes to body parts, its a bad thing. It can be used to describe many body parts that are not doing their job, from ear drums to muscles. 

If, after stroke, a muscle is described as flaccid, it has no movement, and no "tone." Tone means that on some--even nominal--level the muscle is working. 

If a survivor is flaccid on the "bad" side, there is no movement, no tone, no reflexes, no nothing. And if someone moves the survivor's limb it feels like moving an unattached door hinge: There's no resistance. But having a floppy arm is not the only problem. 

Subluxed right shoulder

Because muscles do more than just move things, there can be orthopedic problems. One of them is shoulder subluxation (dislocation). The muscles that hold the shoulder in its shallow joint are called the SITS muscles. When these muscles are flaccid the arm literally falls away from the joint. There are also pain syndromes associated with limb flaccidity. An example is called shoulder-hand syndrome.

Stroke survivors are often flaccid on the "bad" side immediately after their stroke. The good news is that, as the brain comes back online, flaccidity usually goes away. Usually.

But let's step back for a second. Clinicians often misdiagnose someone as flaccid. They might move the limb around a little bit and think, yeah, its flaccid. How might they prove its flaccid? They'd have to "add velocity." That is, they'd have to move the limb rapidly. But how much velocity? How rapidly? Well, to quote myself, Because spasticity is “velocity dependent” (the faster the limb is moved, the more spasticity is encountered), the test is done moving the limb at the “speed of gravity.” This is defined as the same speed a non-spastic limb would naturally drop. In other words, fast. This test is called the modified Ashworth. And its almost never done in someone who is "low tone" after their stroke.

So before the clinician claims you're flaccid, with the concomitant bad prognosis, make sure they do the Ashworth in any muscle they're claiming is flaccid.

If it remains flaccid the first week after stroke, the final outcome is usually poor.

Poor Sleep? Poor Recovery.

Getting decent sleep is essential to stroke recovery. This is not some loosey-goosey pseudo-scientific "pathway to happiness" that then somehow reflects back on your recovery. This has to do with the hardware of the brain.

Think of the brain is a big bucket of one thing:  neurons. You have about 86 billion of them. Or at least you did prior to your stroke.

Neurons are very much like muscle fibers. If you want to build a muscle stronger, you stress it, usually with resistance training, until it micro tears. That micro tearing causes a form of pain called delayed onset muscle soreness (or DOMS). Once the muscle is micro torn, it triggers new and/ or bigger muscle fibers. That's how muscles grow.

Neurons Grow Like Muscles

Muscles grow when they're stressed with exercise, and neurons grow when they're stressed. How do you stress a neuron? Learning. And after stroke, you are learning. Its called motor (movement) learning. When you motor learn, you stress neurons. Neurons respond to the learning/ stress by triggering protein synthesis, which form new connections and voilà! You've learned that movement.

Neurons use the synthesized protein to build new dendrites. Those dendrites then build new connections to other neurons. But the actual connectivity part is done while you're sleeping.  

So literally, if you don't sleep you don't recover.

And we're not talking about drugged sleep. That's called sedation, and the brain does not learn new movement (or anything else) when you're sedated. But its tough for stroke survivors to not take meds that sedate them. Consider spasticity meds. They're downers (CNS depressants), and will interfere with the deep sleep that the brain needs motor learn. The problem with sleeping pills—and depressants generally—is that the brain is not able to do the hard work it needs to do to consolidate what you learned while you're recovering.

So let's say you're in therapy. And every day your therapist is trying to help you relearn how to walk. In order for new neurons to take over for the ones that were killed by the stroke, you have to learn. Learning requires sleep. So you can work your butt off in rehab, and not have much to show for it, because you're not sleeping well.

Again the consolidation of what you learn during the day happens while you're sleeping at night.

Here are some suggestions to get to sleep...

Daytime Suggestions

·   Set an alarm to try to wake up at the same time every day.

·   Include meaningful activities in your daily schedule.

·   Get off the couch and limit TV watching.

·   Exercise every day. People with TBI who exercise regularly report fewer sleep problems.

·   Try to get outdoors for some sunlight during the daytime. If you live in an area with less sun in the wintertime, consider trying light box therapy.

·   Don't nap more than 20 minutes during the day.

Nighttime Suggestions

·   Try to go to bed at the same time every night and set your alarm for the next day.

·   Follow a bedtime routine. For example, put out your clothes for morning, brush your teeth and then read or listen to relaxing music for 10 minutes before turning out the light.

·   Avoid caffeine, nicotine, alcohol and sugar for five hours before bedtime.

·   Avoid eating prior to sleep to allow time to digest, but also do not go to bed hungry, as this can also wake you from sleep.

·   Do not exercise within two hours of bedtime but stretching or meditation may help with sleep.

·   Do not eat, read or watch TV while in bed.

·   Keep stress out of the bedroom. For example, do not work or pay bills there.

·   Create a restful atmosphere in the bedroom, protected from distractions, noise, extreme temperatures and light.

·   If you don't fall asleep in 30 minutes, get OOB and do something relaxing or boring until you feel sleepy.

·   Going to bed and getting up at the same time every day.

·   Removing electronic devices, such as televisions, computers or cellphones, from the bedroom.

·   Avoiding large meals, caffeine and alcohol before bedtime.

·   Making sure the sleep environment is quiet, dark and not too hot or too cold.

Steps to Better Sleep Hygiene:  Behavioral Changes

·   Regular risetime and bedtime—by doing this every day,you can help your internal clock by providing regular cues, thereby improving your sleep-wake cycle.  This should help in getting to sleep faster and reduce the number of nighttime awakenings.

·   Get plenty of bright natural light exposure, preferably in the morning along with exercise. This will give your internal clock a strong cue to run on time.

·   Avoid stimulants, such as caffeine and nicotine.  Avoid caffeine-containing drugs, drinks, and foods for eight hours before bedtime.  Avoid tobacco in the evening.

·   Avoid thoughts or discussions about topics that cause anxiety, anger, and frustration before bedtime. 

·   Institute and maintain a definite bedtime routine that is relaxing to help signal the body that sleep is to occur soon.  Examples might include: a bath, brushing teeth, a small glass of warm milk (4-6 oz.), or a light snack. This will help with getting to sleep and will reduce the need to awaken due to hunger.

·   Reserve the bedroom and especially the bed for sleeping. Avoid activities like reading and watching television in bed. Your body needs cues to associate the bed with sleeping and not other activities.

·   If you nap, try to do so at the same time every day and for no more than 1 hour, and ending by 3pm.

·   Don't spend more than 15 minutes trying to sleep—if you cannot sleep after 15 minutes get out of bed and engage in a quiet activity.  Ideally, the activity should be in low light and sedentary, for example, listening to soft relaxing music or meditating, not reading with a bright light or watching television.  Return to bed only when you are sleepy.

Staying asleep

·     Minimize light and noise at bedtime and throughout the night. This will reduce stimulation and promote normal function of the body’s melatonin rhythm that helps to promote and maintain sleep. Ear plugs may be helpful if the environment is noisy. Avoid alcohol within 4-6 hours of bedtime.  When taken at bedtime, alcohol may help induce sleep but disrupts sleep later in the night. 

·     Avoid heavy exercise within 6 hours of bedtime.  Exercise increases the body temperature. Sleep onset normally occurs as the core body temperature is decreasing. Artificially increasing body temperature can therefore give the wrong cue to the brain and contribute to sleep disruption. 

·     Avoid heavy late night meals. They can interfere with the ability to fall and stay asleep. A light snack at bedtime, however, may promote sleep.  Good bedtime snacks include dairy products and carbohydrates. 

·     Assure the bedroom environment is right for sleep: comfortable bed, dark, quiet, and a cool temperature for sleeping. 

·     Avoid looking at the bedroom clock if you awaken. If necessary, face the clock to the wall. 

Moving in bed

·     Use satin sheets on the bed or pajamas to help with moving in bed can minimize the effects of stiffness/pain.

Waking to go to the bathroom

·     Decrease evening fluids (3-4 hours before bedtime) to lessen the chance of waking up to go to the bathroom.  Make sure that you drink plenty of fluids in the morning hours.  If you often get dizzy when you stand, sit on the side of the bed for a moment or two while flexing your leg muscles before you stand up.

·     Go to the bathroom immediately before retiring.

·     Add some stress-relieving exercise to each day. Walking counts!

·     Helpful Hints: 

·     Stress can keep you from getting enough sleep

·     Exercise can relieve stress and help you sleep well at night

·     So can mindfulness, meditation and deep, diaphragmatic breathing

·     7-9 hours is considered “enough” sleep for most adults

·     Plug your phone and other electronic devices in away from your bed. Helpful Hints:Scrolling and staying connected late at night could be sabotaging your sleep cycle

·     Choosing to get enough sleep at night over getting more work done could help you be more productive

·     Bright, blue screens may inhibit melatonin production – keeping you awake longer

·     Set a “bedtime” alarm for each person in the family.

·     Helpful Hints:

·     Going to bed and waking up at a consistent time can help you sleep better

·     To set your bed time, figure out your ideal wake time and count backwards from there

·     A nightly routine with time to wind down could help you stick to your bedtime

·     If you’ve tried everything and still can’t sleep well, you may have a sleep disorder – talk to your doctor to find out what to do

·     Start your morning with a healthy habit, like a walk around the block or a moment of gratitude.

   

Helpful Hints

·     Adding a positive activity to your morning routine could make it easier to get up if you’re a late snoozer

·     Sleeping past your alarm can make you groggier in the morning

·     Habit chaining may help establish new habits, like doing a few push-ups right after you brush your teeth

·     Add a 20-minute power nap to your afternoon.

·     Helpful Hints:

·     An afternoon nap can help you re-energize and power through the rest of the day

·     “Catching up on sleep” is a myth – sleeping in on the weekend may be sabotaging your weekday sleep cycle

·     It may take a few weeks to get used to your new sleep cycle, so stick with a consistent bedtime and take naps when you need to

Stem Cells for Stroke: Expensive, Unproven and Unavailable.

I'm not a big fan stem cell treatment to help stroke recovery. 

Not yet anyway.

Part of the problem (bluntly) is the surgery.  A hole is drilled through the skull— and that's the least invasive part of the procedure. 

Through that hole, a long needle is directed (multiple times) to the area around the stroke (infarct) in the brain. 

Remember: the stroke kills part of the brain. After the stroke, that dead area "cavitates"— literally forms an empty cave in the brain. Nature hates a vacuum and the cavitation is a vacuum. So it doesn't remain empty— it fills with cerebral spinal fluid (the fluid that flows in, through, and around the brain). That fluid-filled area is dead, and no amount of stem cells, or any other sort of treatment is going to bring those dead brain cells (neurons) back. 

Stem cells treatment aims to overcome the loss by injecting stem cells in the survivor's brain, just outside of the area that was killed. 

Those cells will then turn into brain cells (neurons). That's the idea, and it does hold tremendous promise. And they will get it right, one day. But that day ain't yet. 

A study that is often cited as a seminal stem cell/ stroke study is entitled Clinical Outcomes of Transplanted Modified Bone Marrow–Derived Mesenchymal Stem Cells in Stroke. This study, done at Stanford and one other site, enrolled a total of 18 patients. 

The study has 3 problems: 

1. No control group. 

2. A Lot of people screened, few qualified. 

3. The data (for the primary movement test they used, at least) appears underwhelming.

No control group. 

Everyone got the treatment. Not great. Because with no control, everyone doing the data collection knew that everyone got the treatment. Uncontrolled studies like this put tremendous pressure on the folks who are measuring progress. If the scores go down, the whole study looks bad, which can affect future funding. So there's a tendency to want to "cheat" the score up, either consciously or unconsciously.

A Lot of people screened. Few qualified. 

379 stroke survivors were considered (screened). And out of those 379, only got 18 the qualified. Why was the qualification ratio so low? It's hard to say. According to the data supplement available with the study, they had a lot of "exclusion criteria"— things that might keep people from the study. But, it is a pretty basic list of exclusions for a stroke study. So why were so many people turned down? Maybe they weren't. Maybe potential participants refused be be enrolled. Why would they refuse? Let me explain...

In research you have to do what's called "informed consent." You have to tell the participant (or the less modern term "subject") every aspect of every aspect of the study that pertains to that participant. This is a federal and international law. Why is it so important to inform participants? Let's put it this way... the Nazis did not inform Jewish (and other) prisoners of the experiments the prisoners would be involved in. And, really, nobody wants be a Nazi. 

But it wasn't just the Nazis. Consider the U.S. Public Health Service Syphilis Study at Tuskegee, a horror show that withheld life saving treatment from African American men so  "scientists" could track the "natural progression" of syphilis.  That didn't end until 1972!

The upshot were a whole bunch of very strict rules when it came to human participants. We now have to tell any potential participant EVERYTHING that may affect them in the study. This process— the process of explaining everything, again, is called informed consent.

OK, back to stem cell research and why I think they had a lot of people run out of Stanford as fast as they could.

During informed consent, the participants were probably shown the needles that would go into their brain. They'd probably also were informed that there would be some brain damage as the needle tore through brain tissue on the way to the target. 

The data appears underwhelming.

This study had one primary way of measuring movement: A test called the Fugl-Meyer. I did this test for 12 years straight, every day, often multiple times a day. I think I've done it more than anyone in the Galaxy.

Bottom line, there wasn't much of a change. Just over 11 points. That's 11 points out of a possible 88. This is a relatively modest increase. It is true, modest increases may make a huge difference. But 11 or 12 points can be potentially garnered by being able to straighten the elbow a little more.

But the authors ride it for all its worth. This is unfortunate because scientists have a hard enough time explaining their science to the world without the added burden of  exaggeration.

“We did not expect to see significant recovery. We were quite startled by the remarkable recovery some of the patients showed.” I could get more points than that using intensive repetitive practice-- and without the pesky brain needles. And please! Stay away from the term significant! Significant means one thing in the world of scientific statistics, but to laymen reading your interview it means "a lot".

“She was what we call one of our miracle patients." [sic] There were only had 18 "patients." How many miracles were there? 

"Patients who were in wheelchairs are walking now.” Possible. Not likely. 

We all want something that works. But stem cell therapy isn't there yet. What is weird is that this study does have important findings that move the science forward. Establishing safety across multiple parameters (as this study did) is important. 

Please note that stem cell therapy for stroke recovery is not available in the US or Europe, except in clinical trials. However, I know a survivor who had a series of stem cell treatments for his stroke. This was over the years  2013- 2015 in Thailand and China. You can find info about this option here:

https://beikebiotech.com http://thebrightdirection.com/stem-cell-treatment/stereotactic-brain-surgery/ http://www.wumedicalcenter.com

This survivor reports that he thinks the treatment cost ~16k USD.

Don't let PERFECT be the enemy of BETTER

There's a perspective most clinicians have that is false, and that can hurt your recovery. Bluntly, their perspective is: There is a right and a wrong way to move. And stroke survivors move wrong. 

Further, they'll say, if you move the wrong way, its bad for your body, and brain. 

"You'll hurt your brain."

They'll contend that since you're moving wrong, the brain will "ingrain" that movement. The brain will learn that bad movement, become satisfied with that movement, and that will become your movement strategy forevermore.

"You'll hurt your body."

They'll say that, because you're moving wrong, and the human body is designed to move right, you'll cause orthopedic (bone/ muscle/ ligament/ etc.) damage.

Both of the above are only true if you completely discount two fundamental aspects of human motor behavior:

a. For 250 thousand years humans have learned to move the same way: Move, self correct, move again better, self correct, move again better... but if you are discouraged from moving, where is the opportunity to self correct?

b. The injury to the brain makes the whole move, self correct process slower than clinicians can deal with for 2 reasons: 1. Therapy has limited amount time with the survivor. This is a bigger problem in the USA than many other countries, but everywhere its a problem. 2. Many therapists have a lot of experience with brain injured patients, to be sure. But the frustration, fatigue, depression, changes in the brain, emotional issues, etc., etc. is something therapists can attempt empathize with. But they don't really understand unless they've lived it. There are therapists who have lived in both worlds. I've met quite a few of them. They know. Here's one. 

The upshot of a and b is that the clinician— through word and deed— assumes that the survivor will never learn to move "right." And so, "you'll hurt your brain" and, "you'll hurt your body."

So the question clinicians are trying to answer is "How can I best coach them to move right?" Instead the question should be is, "How can I get them to move better?" Better is always achievable. (Clinicians, look at it this way: Chip away at their present AROMs. If the have 20° of elbow extension, go for 30°.)

In some ways, stroke survivors have the same dilemma as high level athletes. Both athletes and survivors are trying to push through a ceiling in their ability to move. And just like a an athlete, the survivor's progress will be slow and very (very) incremental. 

And that's OK, because its not about "right". 

Its about better.