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.

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NEWS FLASH: There's No Way to Prepare For Life After Stroke

Surprise!

A recent study seems to sum up much of the whirlwind shock of life post stroke. I can't say it any better, so let me quote the authors:

There are 3 phases in the continuum from acute care to inpatient rehabilitation to home: 3 phases of this trajectory: 
1. the stroke crisis
2. expectations for recovery
3. the crisis of discharge
Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory. As caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing. Survivors are often underprepared to take on even the basic tasks to meet the patients' needs on discharge

Conclusion: Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let alone the crisis of discharge and all of the new responsibilities with which they must deal.

STROKE CAREGIVERS HANDBOOK (free)

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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.

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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 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.

Stroke Recovery, Stroke Rehabilitation: A Message to Therapists

There you sit, face to face with a stroke survivor. Only a few days ago he was a vibrant, energetic community member... employee... family member and now is sitting in front of you…. aphasic… hemiparetic …scared. The family sits anxiously behind him. They’re eager to get their loved one back and now they look to you. “When?” they ask. “How?” they inquire. And make no mistake, no matter who has talked to them before and no matter how blunt other health professionals have been, they hold hope for full recovery. Between their expectations and their slowly materializing nightmares, you are the last line of defense.

This is not a good time to ask, “Are my skills up to this?”

What if you simply want to do what is the best neurological therapy available? What if you want to treat based on the best available scientific evidence. What if you don't want to be influenced by the wide variety of competing schools of neurorehabilitation, each with their own books and seminars and cult of personality leaders? 

Want to scrape all the BS away? Go here: meta-analysis.

A meta-analysis is simply a study of studies. Researchers take all the available pertinent studies and then determine which studies are worthy of inclusion based on a variety of criterion. Then, of the studies that make the cut, each is given a certain weight depending on the number of participants (more is generally better), if they are blinded, the quality of outcome measures, and so on. All the available data is run through an algorithm and voila! Meta-analyses provide a “box score”. Simplified, it will look like this:

Therapy “XYZ” = -8.5

Therapy “123” = 9.3

Therapy “EFG” = 7.2

Therapy “ABC” = 27.6

Therapy “ABC” looks best, doesn’t it? Are you using “ABC”?

But trust in meta-analyses assumes trust in the scientific method. Phrases like evidence based and best practice are contingent on an inherent belief in the scientific method as related to rehabilitation research. 

(There is actually a remarkable amount of resistance to the scientific method, not just in rehabilitation but everywhere... deniers of global warming, human existence in the current form for the last quarter million years, evolution, a man on the moon, etc. etc. I was find it interesting that folks that are willing to deny science embrace it wholeheartedly if they are diagnosed with cancer. Oncology; based in science.)

Rehabilitation clinicians, in all their forms, graduate from colleges and colleges within universities that are usually called something like "College of allied health science." 

With regard to rehabilitation research for stroke, what exactly is involved in the scientific method? How do medical and research doctors come to conclusions about what does and does not work?

As with many things medical, it started with Hippocrates. Hippocrates was the first to describe stroke, transient ischemic attacks and aphasia. Hippocrates, however, provided no clues on how to rehab stroke survivors and for more than 2400 years little was written and we know of few interventions used to facilitate recovery from stroke.

Fast-forward to the period from the early 1950’s until the early 1980’s. Individual therapists armed with “keen observational skills”, pencil, paper and a goniometer published their observations and claimed it an effective therapeutic intervention. During this period, therapists could reasonably say, “I know it works because I’ve seen it work in my patients.” or “There are no better alternatives”. Now, anyone armed with the power of meta-analysis can refute these claims with a simple statement.

“Prove it.”

In many ways clinical rehabilitation research can trace it’s genesis to widespread hospital usage of functional magnetic resonance imaging (fMRI) in the 1980’s. Suddenly researchers were able to see the fruit of their therapy by simply examining before/after images of brains of study participants. Why is this so important? Because if fMRI shows activity during purposeful movement and that activity did not exist prior to the intervention, then there is reasonable proof of neuroplasticity. And neuroplasticity is the foundation of all lasting change in the ability to move.

Research and medical doctors have used cutting edge diagnostics including kinematics, electromyography, brain imaging, and the most reliable and valid outcome measures to completely reshape the world of stroke rehabilitation. In fact, it’s not a world at all. It’s an expanding universe.

And why is stroke rehabilitation it expanding so rapidly? A basic understanding of the sheer enormity of dollars provides some insight.

• $52 billion is spent on stroke care each year. 
• The projected costs for stroke for the next 45 years: $2 Trillion.
• There are 50 million stroke survivors worldwide. (In a global  economy.)

Enter entrepreneurs. Entrepreneurs have completely changed the way stroke rehabilitation is conceptualized, researched, and administered. Medical device companies, business minded bioengineers, electrical engineers, biological and clinical neuroscientists, doctors and therapists are aggressively seeking a piece of the burgeoning multi-trillion dollar stroke rehabilitation pie. This explosive increase in the number of gizmos and treatment techniques has created a total mutation of the paradigm for rehabilitation for stroke. The resultant technological tsunami will force an unprecedented marriage between patient and technology while forging a massive adaptation by universities that train therapists, and facilities that want to continue treating stroke survivors.

And make no mistake; entrepreneurs are marketing directly to stroke survivors. If you want insight into this process have a look at the advertisements in the two major free magazines for stroke survivors; the magazine of the National Stroke Association Stroke Smart and Stroke Connection magazine, published by the American Stroke Association.

And what of stroke survivors? Have they not always strived towards full recovery? Unfortunately, the history of stroke survivors is story of warehousing and lowered expectations. But don’t blink: things are changing fast. Baby boomer’s increased economic clout and heightened expectations intersecting with the mushrooming middle class in less developed countries has and will continue to create a new breed of stroke survivor who will want, need and expect more recovery.

And all this leads to more high quality stroke rehabilitation research.

Rapid technological change has led to ever more accurate determination of an intervention’s effectiveness and if effective, how effective.  The force of a flood of dollars, both public and private, has changed the way stroke rehabilitation research is realized. Modern research often involves hundreds of specifically randomized participants and involves medical personnel (often including therapists) with degrees specific to their responsibilities within the study. Further, there are institutional review boards to guarantee ethical standards within the research trails, federal (FDA) oversight, and precise handling of collected data. Private, for profit companies, with and without the aid of public funding (NIH, NINDS, public and private universities) are spending hundreds of millions of dollars, on a variety of modalities and therapeutic interventions designed to ameliorate the residual aspects of stroke.

And all of that is only half the battle. In order for studies to be distributed in a manner that is respected by the medical community at large, it has to be published in peer-reviewed journals. Even once the study is done there is an expectation that the same or similar studies will follow that speak directly to reliability (the ability for an intervention to have the same or very similar results over and over.) Once a critical mass of research is done on a therapeutic intervention meta-analysis is done to, essentially, provide a numerical “score” that pits therapy against therapy and declares a winner.

 “I will continue with diligence to keep abreast of advances in medicine.” So says the Hippocratic Oath. Medical doctors have endeared themselves to the public for centuries, millennia really, by accepting a direct influence of science on their professional practice. Therapists and assistants should do the same.

This is not a good moment to ask,  “Are my skills up to this?”

Unless they are.

Since when is “productive” fun?

When it comes to stroke recovery, no clinician, no matter how skilled, can "do it for them." Recovery from stroke is dependent on repetitive and demanding practice by the owner of the damaged nervous system—the survivor. If done correctly repetitive and demanding practice drives cortical plasticity ("brain rewiring") robustly enough to be evident in increased quality of movement. 

But this sort of repetitive practice is boring! Repetitive practice does not necessarily involve functional activity. For example, a clinician, seeing a deficit in the last 15 or 20° of dorsiflexion, may have the patient repetitively practice dorsiflexion, irrespective of ambulation. At least in that example the end goal, whether it's stated or not, is obvious; walking. In the upper extremity repetitive practice of single joint movements may or may not relate to any particular everyday activity. Instead repetitive practice may be used just to increase active range of motion in those joints. Because it does not involve anything functional, repetitive practice can be inherently boring.  And what makes it even more boring is that stroke survivors aren't even working on anything novel; there relearning movement that they used to do perfectly well. So where's the motivation? 

The motivation ends up being a conjuring. Some of this motivation may come from the minds of clinicians. OTs, PTs and speech therapists should try to make repetitive practice as interesting as possible. But some of this motivation comes from the survivor. The survivor needs the imagination enough to understand how this hard and boring work will help realize potential.

The Wrong Question

"What is the single most important thing you should know about stroke rehab treatments?"

That's easy: Your asking the wrong question.

If you are talking about rehabilitation treatments you are talking clinical stuff. You are talking about a clinician-- usually a therapist-- in a clinical setting. And both clinician and clinic are great but they are not enough during two time periods:

1. Every day

2. Once your discharged from therapy.

Let's consider why clinical stuff "every day" is not enough. How much therapy might you get? An hour-- two-- three? Recovery is a full time job during the first few months after stroke and it is the first few months after stroke that you're still seeing therapists. So even when therapists are there, there almost always not there enough.

OK, now lets take "Once your discharged from therapy." Discharged from therapy is in and of itself the very definition of not enough therapy, because you've been discharged. Discharged like a bullet from a gun, off you go! So once you are discharged you are definitely not getting enough clinical stuff.

So maybe the question ("What is the single most important thing you should know about stroke rehab treatments?") is wrong. What if instead the question was "What is the single most important thing you should know about stroke recovery options?"

Isn't that freeing? You are no longer under the rules of managed care because managed care does not care if you try, on your own, to take on your recovery using whatever options you can find. You can spend as much time as you want. And even if recovery options are an adjunct to rehabilitation treatments, they expand the opportunities for recovery.

So, "What is the single most important thing you should know about stroke recovery options?"

Sweat equity. That's it. The more you put in, the more you make your brain uncomfortable and force it to change. the more repetitions, the more challenge, the more focus— the more recovery.