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.

Video games+Tennis balls+ Anger=Recovery

A great article in the British newspaper The Telegraph. The article is by a stroke survivor who recovered well after an ischemic (block) stroke. He's hit on some very core ideas. Here are the most important points (comments in red are mine):

• "...nobody in the hospital was going to tell me how to get better ..."
• "I had to get out of hospital and cure myself."
• "...found that major strides had been made in America in treating stroke victims." (USA! USA! USA!)
• "Research there showed that damaged neural pathways could be re-routed" (Taub! Taub! Taub!)
• "The key was speed. After three or four weeks, the brain seemed to start a permanent shut-down on these pathways." Not true. But the guy is a "High Master" which I think is a principal. He can be forgiven.
• "I decided to bounce a tennis ball 2,000 times a day off the kitchen floor, missed catches not counting." Obsessive repetitive practice. I love it.
• "The first day it took four hours to reach the target." Ambitious repetitive practice.
• "...wrote out the alphabet, one line per letter, for two hours a day." Brilliant, I think the British say.
• "I vowed to (type) 10 pages a day, typing out my corrections on my latest book with one finger. The first 10 pages took three days." I love this guy.
• "I decided to recite the poems of Andrew Marvell for two hours a day..." Fighting aphasia by using something meaningful. This guy may have missed his calling: neuroscience.
• "I marched up and down the stripes on the lawn for two hours a day." Very Monty Python.
• To reestablish I coordination he used "a computer game flying a virtual F15 jet - or, in my case, crashing it thousands of times on the runway before finally landing it - after 40 hours' "flying" time." I think this is great. The idea of doing something fun to recover. When else in the middle of somebody's career are they allowed to play 40 hours of any game?
• "I came close to giving up the grind of rehab. But by choosing tasks like writing the alphabet or counting how many times I could walk down the lawn without crossing a stripe, I could monitor my own progress." Okay, two things: close to giving up. But not giving up. And second: being able to "monitor progress" is essential to recovery because if you don't monitor things closely how do you know if you are getting any better?
• "The difference between success and failure was...a deep anger that I was not offered more help to start with" You know, even Gandhi was not against anger. He just said you should use it wisely because it's very powerful. I'd say using anger to recover from stroke is using anger wisely. 
•  Gandhi on Anger  "I have learned through bitter experience the one supreme lesson to conserve my anger, and as heat conserved is transmuted into energy, even so our anger controlled can be transmuted into a power which can move the world." 

Bravo High Master of stroke recovery!

Find the article here.

Stroke Recovery. Are You Up for the Challenge?

Keeping it challenging...

Whatever is practiced, it must be challenging. In research, an 80-percent threshold is generally used. For instance, if a stroke survivor can successfully turn the pages in a magazine 80 percent of the time, the challenge can be increased by turning the pages of a newspaper. Since turning pages of newspaper requires increased excursion of the shoulder and elbow, the increased AROM will "trickle down" to easier tasks such as turning pages in books and magazines, card flipping and laundry folding.

What is usually done

Compensation (learning to "get by" with the "good" side). As "Dean's" puts it: Compensation being doing whatever is necessary to accomplish a goal. Recovery is using the muscles as intended to accomplish the same goal. Insurance wants you to use compensation whenever possible because it is faster and cheaper. 

Faster and cheaper

Faster and cheaper is good because its faster and cheaper. You could go to a State University. Or you could get a degree from a degree mill. You could make a a salad, but you could get the same amount of calories from a pop tart. But even as fast and cheap as they are, you'll still feel gypped.

~

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.

~

"Why Can't They Use Stem Cells to Help Stroke Recovery?"

I am happy that this blog has been able to partner with SanBio, a company on the leading edge of stroke recovery research. They aim to answer the question, can stem cells help with stroke recovery? SanBio is a San Francisco based company that is looking for participants for their study.

You can get all the information you need by clicking on the SanBio link, to the right.

• A few pertinent points about the study:
• Participants (subjects) must be between 6 and 36 months post stroke
• All participants will have had an ischemic stroke (a block, not a bleed)
• All participants will have their movement, sensation and cognitive ability tested
• The safety of the treatment is the primary focus of the study
• The studies being conducted in two places: Palo Alto, CA and Pittsburgh, PA
• "All transportation and study-related costs will be covered"

~

E=Recovery

Banking energy is essential to recovery. Muscle strengthening (even on the unaffected side) and cardio work, i.e. walking, recumbent steppers, upper-body ergometers) are essential to provide the underlying "banking" of energy. The banked energy is needed to provide the fuel needed to do the hard work of recovery. The average stroke survivor has half the amount of cardiovascular strength as age-matched "couch potatoes." But most ADLs (walking is what is usually measured) take twice as much energy. In other words, stroke survivors have half the energy to do twice the work.

The foundation of all recovery from stroke involves neuroplastic "rewiring" of the brain. And while the energy needed to drive neuroplastic change has not been measured, one thing is for sure-neuroplasticity takes a lot of energy. The buzz word in rehab research is intensity. But how can you do intensive without enough energy?

Up to 70 percent of stroke survivors suffer from severe fatigue. Many survivors consider fatigue the worst aspect of post- stroke life. Banking energy goes a long way toward fighting fatigue.

~

Stroke Recovery: One Myth, Two MDs

Assume no plateau.

Time and time again, the idea of a plateau in post-stroke recovery has been refuted, both in research and anecdotally. It is the responsibility of the therapist to let the patient know that the culmination of therapy this is not the beginning of the end, but the end of the beginning. The patient's rehabilitative efforts after discharge can be confusing, frustrating and not always entirely fruitful. But motivated patients can make gains if they are willing to try new ideas, adapt and research new techniques.

 Know the role of the physiatrist and neurologist.

I've asked physiatrists how often they suggest that their patients should schedule an appointment with them, once they've been discharged from therapies. Their answers tend to be all over the place. "If there is a change in function," or "If the patient is having an issue with meds," or "Once a year." But when a typical patient with stroke, who is perhaps five years post-stroke, is asked, "Who is your physiatrist?" the usual answer is, "I don't have any problems with my feet."

The fact is that patients with stroke often lose touch with their physiatrists because many don't see the need for a doctor who directed their acute rehabilitation. They know they've "plateaued"—so why would they need the "stroke doctor" (as physiatrists and neurologists are often called)? But there are good reasons to reintroduce yourself to your physiatrist. Only physiatrists and neurologists are trained to measure nuanced change, know about the latest applicable medications, and understand the true breadth of rehabilitative care as it relates to patients with stroke.

Building the Recovery Wall

Scott Gallagher posted a comment to a previous blog post. I'll paste that comment at the bottom.

What caught my eye in his comment is the conflict between repetition and quality. The conflict goes like this: If you do a ton of repetitions you may not concentrate on quality. If you concentrate on quality you may not hit enough repetitions.

I do a lot of talks about stroke recovery to clinicians. There is a small but vocal group of therapists who believe that if you don't focus on quality you may as well not practice. "Perfect practice means perfect recovery." I completely disagree. What if the survivor doesn't move perfectly? The answer by these clinicians is "I use hand over hand techniques to make sure that they do." Basically, they move the stroke survivor in the proper arc of movement. (BTW: the original quote was, "Practice does not make perfect. Only perfect practice makes perfect." - Vince Lombardi. Vince Lombardi was dealing with professional athletes. If he was coaching peewee football his quote would've been "We're not asking for perfection, we're asking you practice.")

There's several problems with stroke recovery put to this "If its not perfect, don't bother" philosophy. First of all, who's to say what "good" movement is after stroke? If somebody's trying to learn golf and they suck, nobody stands behind them and says, "You're doing it wrong." The more you practice golf, the better you'll get. Should you practice proper technique? Yes. But stroke survivors know proper technique. They've been doing these movements for all the years prior to their stroke. And even if they forgot they can model with the unaffected side.

 strongerafterstrokeblogpants

Second, this philosophy suggests a therapist. "Don't move unless I'm there to help you move." Alternatively this can be expressed as, "The more you move the worse you'll get." But therapists can't be with the survivor all the time, and the survivor doesn't have enough money in their pocket to pay for endless therapy. There is some good news... "The more you move the worse you'll get." Hogwash. Moving a lot on your own leads to better movement as long as you make the movements challenging (always reaching beyond you present ability).

Third, when's the last time you saw a coach with their hands all over a player? When's the last time you saw a music teacher with their hands overlapping the hands of the trumpet player? Learning movement involves mistakes corrected.

Scott Gallagher puts it this way "...any time I tried to insert control or effectiveness into my program, whether it would be with walking or with the hand, it would drive the repetition numbers down and my recovery would stall." And I know that is taken out of context, but as it stands as a quote I agree with it.

Scott Gallagher: If complete recovery is the goal, one problem might be in the sheer numbers involved. I have no reason to think that my stroke was anything but whatever might be considered a normal stroke, but currently in measured distance I'm at 5,112 walking miles. I'm so close to recovered, I'd say 5,000 miles is what it took for me to fully walk normally again. I tried speed walking, but the problem I was having was that any time I tried to insert control or effectiveness into my program, whether it would be with walking or with the hand, it would drive the repetition numbers down and my recovery would stall. My strategy, then, became one of brute force: keep it simple and push those repetition numbers up. But even if I had effectively used speed walking, how effective could it be? Even if it took 3,000 miles off my total distance, that would still leave 2,000 miles left to cover. I only made it through by switching from an exercise-based program to a mind and motivation-strengthening program. For all but a very, very few the repetitions required for full stroke recovery may make it, although possible, simply unfeasible. Come to think of it, though, your post may have been intended for a less hardened recovery program. Thanks.

Thank you Scott! 

                                                                                            ©Stronger After Stroke Blog

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?
---

What if you made it harder?

There are a lot of things out there that can help make the life of the survivor easier. Assistive devices that can aid in everything from walking to eating, for instance. There are apps to help aphasic folks communicate. There are even books that give you "Tips for Making Life Easier. " 

There are really really good reasons to have these "helpers." One of those reasons is safety. Take AFOs, for example. I've been an advocate of attempting to "walk out of" the AFO. AFOs help folks who can't lift their foot, walk. And if its a safety issue then, by all means, keep it!! But if a set of muscles is not used it will atrophy. In the case of the AFO, the orthotic eliminates the need to use the dorsi flexors which lift the foot. But that muscles will atrophy is only half the problem.

The other thing that atrophies is the portion of the brain that controls that movement.  In short order (weeks) the number of connections between neurons in the brain rapidly decreases. Is that what we want? Generally, no (but for safety, yes, maybe.)

So all this time is spent on making life easier but making life harder is the place to be.  Find suggestions here and here and here.

Don't forget the Yang

If movement is the yin, sensation is the yang. Try to zip up your zipper with gloves on. Its hard to even find the zipper! Part of the finding and the zipping is being able to feel. The feeling of the zipper tells you where the zipper is, how much force it will need to be pulled up, the angle of pull that is the most efficient, etc., etc.

For many survivors, its more than just losing the feeling of the zipper between their fingertips, its also the feeling of the entire arm and hand that may either be diminished or lost. If you think its hard to pull up a zipper because you can't feel the zipper, imagine how hard it is to pull up a zipper if you can't tell where your hand is! This ability to feel where the extremity is in space (without looking at it) is called proprioception. Proprioception, when intact, is a constant feedback loop. 

Little organs in your muscles, tendons and joints tell your brain where your limbs are without you looking at them. You adjust your movement according to this information. As you adjust your position, your muscles continue to tell you where you are! 

All this information runs through your nerves (from muscles to brain and back) at about 300 feet per second. But it may all "fall on deaf ears." If the portion of the brain that "listens" to proprioception is killed by the stroke, none of that information will get through.

Is proprioception retrainable?

Anyone who reads this blog, or my book, or practically any article I've written knows that I think the whole darned system is retrainable. The research is somewhat unclear because its hard to measure proprioception. You can measure movement, but how do you measure feeling? But. There is a lot of research that says, basically, the more you move, the better your movement becomes. And, there is a general belief that better movement requires two things:

1. Better control over muscles
2. Better proprioception

So, if you are moving better, we can assume that you are probably feeling the movement better.

And "use it or lose it" is in play. We know that if a survivor moves less, the area in the brain that controls that movement shrinks. But the areas in the brain involved in proprioception also shrink. 

So move! A lot! Its a twofer! If you move you regain control over movement and the feeling of movement! That then gives you a wider palette of movement! And, if you work really hard (and are lucky) your movement will be integrated into your everyday! And that's the holy grail of stroke recovery!

More tips to recover proprioception here.

The STROKE-O-MATIC 76

When it comes to selling stroke-recovery machines to therapists, the phrase "another tool in the toolbox" is all the rage. Vendors (sellers) use the toolbox idea to soft-peddle to therapists. Here's how the pitch goes...

"We have this great new machine. It works great. Now, I'm not saying to pitch what you use. I'm just saying that this machine of mine is...another tool in the toolbox." But therapy time is very (very), very limited. So, Ms. Therapist, if you use their machine, there'll be no time for what you have been using. And the vendor knows this. 

But the vendor is scared to say their version of the truth which is, "My machine works better than what you have been using" because that suggests the therapist has been providing something less than the best. (And you don't insult the client, right?) But that's exactly what they are saying. My machine works better than what you usually use... Instead, the vender, fearing being considered condescending treats the clinician like a child and says, "You're doing just fine. This is just another tool for your toolbox." Its like telling a child, "I love Joey, your (stinking, puked-on) Teddy bear  too. But lets just get another Teddy. You can keep Joey too (in the garbage!) but we'll buy you this new one."

I find this even more condescending to therapists than giving it to them straight. Vendors, if you think your thingy works better, say so. Not to is spineless because you've not stepped up for the people who need you. No, not therapists (your bank account or your boss). You've not stepped up for survivors. If your thing works, get behind it. And if you are truly behind it, soft-peddling just makes you someone who'd rather make the sale than do the right thing.

Of course, if you want $ over integrity, you'll get neither.

Don't stop. Don't stagnate. Don't let a lull convince you recovery has ended.

What about "Long-Term Rehab Management of Stroke"? What do we know about stroke recovery as we get into months and years and decades? 

What does this post have
to do with this girl?
Nothing!

The first thing we know is that its nonsense to believe that recovery has some sort of expiration date. I like the idea of someone coasting for a month or longer and then recommitting themselves to recovery. Its never too late.
 

What does tend to happen is "adaptation." The word refers to the notion that if you do the same techniques you get the same results. Survivors and therapists can both cause adaptation. Therapists can get used to what they use and go automatic and unimaginative with treatments. Survivors can get lazy and not push against their present abilities. 

Bottom line: There is good  evidence in the research that so-called "chronic" survivors can continue to make progress.

Don't stop. Don't stagnate. Don't let a lull convince you recovery has ended.

Falls. Bad.

Here is your challenge: 

In the comments section, write everything that this survivor could do better in order to get up the stairs more safely. 

We all know that falls are bad. 

Falls can kill you. For survivors, falls are especially bad. Stroke affects balance, coordination, strength, and any number of other things that can lead to an increased risk of falls. On top of that, survivors tend to fall towards their affected side. In the affected side tends to be more osteoporotic. So have at it. This is good place to start as anywhere. What is this gentleman doing wrong? How do you do differently? What can you suggest?

Recovery is done in three phases.

Recovery from stroke is done in three phases.

ACUTE    SUBACUTE    CHRONIC

1. The acute phase (~day 1 to day 7 [note all time periods are highly variable]). This is usually done in the hospital. In terms of recovery your main responsibility is to keep yourself healthy. Therapists will typically focus on helping you do what you can do. This is a time for convalescence.

2. The subacute phase (~day 7 to 3 months). This is usually done with some help from therapists. You will experience the most recovery during this phase. This is the time that rehabilitation should "put the pedal to the metal." This is where the hard work begins. During the subacute phase the brain is "primed" to recover. Make the most of this phase because it is a window of opportunity to reach the highest level of recovery.Squander it and squander the highest level of potential recovery.

3. The chronic phase (~3 months to the end of life). Typically the survivor has very little contact with rehabilitation professionals during the chronic phase. This is the time to implement a "do-it-yourself" plan for recovery. Recovery comes at fits and starts and is much more difficult than during the subacute phase. Still, important gains can be made during this phase. Up to very recently it was thought that no recovery could be made during the chronic phase. We now know, however, because of the brain's amazing ability to rewire itself, essential progress can be made during the chronic phase.