The politics of stroke recovery

An extraordinarily interesting conversation broke out in my last seminar. Usually, I try to keep the conversations short and tight. We have a schedule, and I try to stick to it. But this involved about 10 therapists. And it was brilliant. It went like this...

We were talking about the acute phase after stroke. The acute phase is defined in different ways by different disciplines. For instance doctors will define it one way, therapists another way, radiologists another way, etc. The way that these different disciplines define the phases (from hyperacute to chronic) are important. All those definitions have different valuable uses. (Please note that the second edition of stronger after stroke has all the definitions of all the phases, along with suggestions about how to rehab during those phases.)

In any case, we were talking about the acute phase. I'll paraphrase what I was saying by taking a quote from the book...

"The brain remains in a very delicate state during the acute phase. The neurons of penumbra are especially vulnerable. Consider the studies of animals that have been given a stroke. Animals forced to do too much too soon increase the damage to their brain. In human studies the results of intensive rehab (too much, too soon) has been mixed at best."

The acute therapist then chimed in. They said that often survivors are sent home after their hospital stay. Once home they get a therapist to come to their house. But that kind of therapy, usually called "home therapy," is not generally as aggressive as what survivor swould receive from a rehabilitation hospital. Therapists who come to he home don't have many of the tools that they'd have in a therapy gym. 

So why are survivors often sent straight home? Managed care demands that they go home if they are not making progress. But if you take my suggestion (too much too soon is a bad thing) survivors won't make much progress, because therapy has to be -- for lack of a better word -- gentle. 

The time to make progress is not during the acute phase. (More about how therapy is "upside down" for stroke survivors here.) The time to make progress is during the subacute phase. But if survivors are discharged to home rather than to a rehab hospital, or outpatient therapy, they're not going to get aggressive therapy when they need it: during the subacute phase. Classic Catch-22.

One of the suggestions was that instead of sending people home, from the hospital they be sent to skilled nursing facilities (SNFs). But there is a problem with SNFs. It's the "N." N=Nursing. And people hear that and they think "nursing home." And so they refuse. They don't want to go to a nursing home.

But survivors may want to rethink this position. Skilled nursing facilities provide skilled therapy. Physical therapy, occupational therapy, speech therapy -- it's all there. It allows the survivor to get the most out of the subacute phase. It may also allow them to get good enough to go to a rehabilitation hospital, or an outpatient clinic that's very aggressive. 

SNFs can be used as stepping stones to more and better therapy. BUT: If the discussion is "We're going to park you at the nursing home FOREVER" that's not a good thing. SNFs are a nice place to visit, but you may not want to live there (although some are very nice!)

There so many ways that managed care works against the best interest of stroke survivors. This (too much too soon is bad, but if you don't show progress your discharged home) is just one example of how managed care drops the rehab ball.

~

DIY Stroke Recovery

There is a common suggestion among many in the "alternative medicine" industry expressed in the question: "If it means less business, why would your doctor want you to be healthy?" A strict emphasis on healthy lifestyle including diet and exercise would be like the proverbial "apple a day" - keeping the doctor away.

Doctors who do this - who keep themselves away as much as they can - are the best doctors. And therapists who "keep themselves away" are the best therapists.

Many pathologies allow for a definitive discharge point. The patient who has had a knee replacement gets therapy, and then goes home to live the rest of his life. But neurological disorders are different. Many, from Parkinson's disease to multiple sclerosis, are progressive. But what of non-progressive neurological disorders like stroke and traumatic brain injury? Does this "apple a day" philosophy work? Is there a point at which these populations no longer need therapists?

Many patients with brain injury (including stroke) believe that they will always need therapists. Most see therapists as essential to the recovery process, no matter how long (months, years, decades) it takes for them to achieve their highest level of potential recovery. But this view is incorrect.

There is a point at which therapists are no longer the fulcrum for recovery. Nor should they be, for reasons that range from financial to practical. At discharge stroke survivors are, and should be, in complete control of their own recovery. During the chronic phase of recovery from stroke, the speed of recovery slows. The physiological action of recovery is based on a lot of self-directed hard work. Much of what is required is relatively simple, and revolves around the broad concept of repetitive practice. In order to take charge, stroke survivors need to be given the tools to initiate and follow an "upward spiral of recovery." This term is used to describe the path to the highest level of potential recovery. The "upward spiral of recovery" is driven by real-life demands for everything from coordination to cardiovascular strength.

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

Socializing, Play and Moving Helps Drive Recovery

Part of your recovery may depend on how much fun your having while you recover.

Enriched environments (EE) are what we all want. It's why we send our kids to good schools, why we seek out new experiences and why we travel.  It turns out that enriched environments are very good for the brain. One of the main enrichments of environment that humans have is social interaction.

What do enriched environments have to do with stroke recovery? A ton.

What hurts social interaction? A stroke.

It turns out that there's pretty good evidence that stroke survivors engaged in enriched environments recover more. More than what,you may ask. Survivors involved in environments rich in social interaction, physical activity, and interesting experiences recover more than survivors who are not in enriched environment.

There is one caveat… Most of this research has been done on animals. The reason was done in animals is that it would be impossible to do the same sort of research and humans. Imagine a human study like this would go…

You would have to groups:

The control group: survivors would be involved in a highly social environment in which there were a lot of games played, a lot of conversations and a lot of physical activity.

The experimental group: survivors would be put in a cell where they were fed well, but did not engage any other humans in anyway.

A study like that on humans would be considered… What's the word? Unethical. That's the word: Unethical.

How do you find rats that have had a stroke? You give them one. Researchers surgically cause a stroke in the rats. (video here) 

They then separated the rats into an experimental 

and control group. 

(Note: the idea of enriching environments is beginning to be tested in human survivors. It is made ethical by letting one group do what they normally would do while the experimental group got an increase in physical, cognitive, and social activity.)

What does the research show about the effect of enriched environments on stroke recovery? The rat stroke survivors in the enriched environments had better proprioception (sense of movement) than the rats that were left to themselves. 

Also...

• EE plays an important role in the recovery of damaged neural function
• Housing rats in an enriched environment can enhance functional outcome after focal brain ischemia
• Significant improvements in sensorimotor function