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 would receive from a rehabilitation hospital. Therapists who come to the 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.

~

Mirror Therapy Stroke Recovery

Find video of mirror therapy at the end of this article

Most recovery from stroke requires neuroplastic "rewiring" of the brain. Forging neuroplastic change in the cortex, the outer shell of the brain where much of neuroplastic action takes place, involves an incredible amount of effort on the part of the stroke survivor. 

It also takes time and resources dedicated to that effort. There are, however, recovery options that stroke survivors can use that to not burn through a lot of resources.  These recovery options can be added as a simple and effective adjunct to traditional therapy.

One example of such a recovery option is mirror therapy. Much research remains to be done to fully prove efficacy of mirror therapy. But for some stroke survivors mirror therapy appears to be a promising and effective option for reestablishing cortical control over wayward limbs.

Mirror therapy

· requires very little training 

· survivors with very little movement can   do it 

· is easy to set up 

· is not taxing to the patient

Mirror therapy for the upper extremity.

The stroke survivor is seated. A mirror is aligned to intersect with the patient's body in the sagittal plane at chest level. This is usually done by placing the mirror on a table with the hands resting on the table on either side of the mirror. The reflective part of the mirror faces the unaffected side. As the patient looks into the mirror, all they see is the unaffected side. The mirror blocks the view of the unaffected side of the body. The patient gazes into the mirror reflecting the "good" hand. When the "good" hand is moved the mirror gives the illusion that the "bad" hand is moving perfectly well.

Often, a "mirror box"—usually about twice the size of a shoebox—is used.  On one outside surface of the box is a mirror, which faces the unaffected side. The patient places the affected hand in the box so it is covered on all sides. The stroke survivor attempts to copy the movement of the “good” arm and hand with the hemiparetic arm. In other words, the movements are done symmetrically, like conducting an orchestra. However, the stroke survivor only sees the reflection of the good hand.

Mirror therapy for the lower extremity.

The stroke survivor can be either in long sitting on a plinth or seated on a chair. The advantage of the plinth is that the lower extremity is more easily viewed. The advantage of the chair is that it may be more comfortable for some patients. In either case, a mirror is placed the between the patient's legs to intersect patient's body in the sagittal plane. As with the upper extremity, the mirror is facing the unaffected side. The patient is instructed to plantar and dorsiflex the unaffected side ankle, and at the same time attempting to do the same movement with the unaffected side. The speed of the movement is self-selected.

Dosage.

For both the upper and lower extremity the dosage is 30 minutes a day, five days a week for four weeks.

How and why does it work?

There are two explanations for why mirror therapy seems to show efficacy in clinical research. The first is technical. The second explanation is better suited for patients who are less interested in the science and more interested in efficacy.

The scientific basis seems to be in what is activated when we are presented with the illusion of seeing both limbs when, in reality, we are only seeing one. Transcranial magnetic stimulation studies with mirror therapy reveal something remarkable; when the left hand is moving the left motor cortex is excited, and vice versa. Normally, of course, when the left hand moves, the motor cortex on the right side is activated. So if the stroke survivor has right-sided hemiparesis, viewing the "false” right hand in the mirror will activate the portion of the brain that controls the hemiparetic hand. If the stroke survivor is trying to activate the motor cortex for the affected side limb, research suggests that mirror therapy can be used to initiate that activation.

The simple explanation. But just like any other neuroplasticity-driving treatment option, it is primarily through the effort of the stroke survivor that rewiring takes place. For that reason it is essential that stroke survivors are educated on what works and how it works. Stroke survivors need to know why they're doing what they're doing in order to have them on board for the process. The challenge of making things scientifically accurate and easy-to-understand is essential to any patient education. Mirror therapy is no exception. The following can be used to describe the essence of mirror therapy to patients considering this option:

· The reflection of the good arm superimposes normal sensory signals on the brain.

· Mirror therapy provides proper visual input because the reflection helps them think that their affected arm is moving correctly.

· The reflection, perceived to be accurate movement is thought to reorganize the way the brain is wired.

· This fooling of the brain stimulates the brain to help with control of limb movement.

Here is a vid that will give you a general idea of how it works. I would suggest that the skill this therapist is suggesting (handwriting) may not be the best for this patient for 2 reasons:
1. Handwriting is a skill usually only done by the dominant hand. This patient cannot adequately perform handwriting with his non-dominant hand. So his left hand may not be the best teacher. This patient would probably be better served by working on something that the left hand can do flawlessly and that the right hand can learn from.
2. What movement should be chosen? I would suggest working on whatever movement the "bad" hand is on the cusp of doing. So if the survivor is on the cusp of opening the hand, work on that. Simple, basic movements seem to work best.

Neuro-Developmental Treatment: meh.

I'm going to copy some of my favorite quotes about NDT/Bobath. The quotes themselves are links that will take you to the reference.

"Bobath therapy is similar or inferior to other rehabilitation approaches (meaningful task-specific training, constraint-induced movement therapy, ARM-basis training, motor relearning program, movement science-based physiotherapy) for treating upper limb motor impairment and disabilities in acute, subacute and chronic stroke patients... At present, there are insufficient arguments for integrating Bobath therapy into stroke rehabilitation with a view to improving UE motor impairments or disabilities."

"The NDT approach was not found effective in the care of stroke patients in the hospital setting. Health care professionals need to reconsider the use of this approach."

"The Bobath concept is not superior to other approaches for regaining mobility, motor control of the lower limb and gait, balance and activities of daily living of patients after stroke."

"Results show no evidence proving the effectiveness of NDT or supporting NDT as the optimal type of treatment..."

"There was no evidence of superiority of Bobath on sensorimotor control of upper and lower limb, dexterity, mobility, activities of daily living, health-related quality of life, and cost-effectiveness."

"There is now a growing body of research and opinion saying Bobath is out of date and obsolete, not least because of emerging data from neurosciences and should be abandoned in favour of an evidence-based approach."

"Families continue to be advised that they should seek Bobath- or NDT-trained therapists and avoid those who are not, which unfairly and, I would contend, unethically discredits those therapists and programs providing evidence-based treatment but are not using NDT."

"The Bobath concept is now so diverse that it can be difficult to know where it came from and what it is: there are so many derivatives of it that it could be considered a disservice to ... Bobath to continue to practise under the Bobath name."

"It is almost impossible to define what Bobath/NDT is in current times given that the approach has become so diverse, and in all probability, one needs to go back to the original Bobath ideas to understand what it is."

The following quote is from Diane Damiano, M.D., a senior scientist at the NIH. Have a look at it and then I'll post an email I got from her a few years ago where she talks about the crap that rained down on her for writing bad things about NDT.

"I refer to (followers of Berta and Karel Bobath) as the ‘torch carriers’, likening them to those who ‘carry a torch’ for someone in a romantic sense, something which is typically not reciprocated or based in present day reality." 

We are definitely like-minded but my speaking out about NDT brought out some very ugly emotional responses from around the world….  My new approach is not to speak out against anything, but just to speak more loudly FOR things – like evidence based practice, neuroplasticity, etc..  Science will win this argument, but it is sadly not as fast as we all would like or that patients deserve! Keep up your good work – we are doing similar things here at the NIH in children with CP as you are doing in stroke (using FES and robotic assistance to stimulate more and better movement). 

The following quote is my personal favorite. NDT has a long history of taking the hard work of researchers and exclaiming "That's NDT!" They then proceed to screw up a perfectly good treatment option by smearing Bobath/NDT all over it. 

"A disconcerting facet of the torch bearer approach is that therapy principles and programs developed by other innovative clinical researchers or scientists are now considered an integral part of NDT or Bobath. Why does this method have the right to pull in everything that comes into its path like a supernova that becomes a black hole?"

Study
systematic review
systematic review
systematic review
a great non-scientific discussion here

Neuro-Developmental Treatment. That's a lot of syllables. Very scientific sounding. It was developed by Berta Bobath, and for a long time was called The Bobath concept. Let’s just call it NDT/Bobath.

NDT/Bobath has been used on stroke survivors for decades and decades. When I was in school professors talked about it as if it was the most awesomest thing that had ever been awesome. It was the pinnacle. But it was complicated. It was so complicated you couldn't even learn it in school. You have to learn it from NDT/Bobath gurus. You could've gone to the Harvard school of physical therapy (if there was one -- which there isn't) and you still couldn't learn NDT/Bobath. Which is a red flag right there. If it works so well it would be required.

Instead, after graduating you have to go and get "certified" by NDT/Bobath gurus. Those gurus would've learned from other gurus, and up the pyramid it goes. NDT/Bobath training is expensive. We're talking about thousands of dollars and weeks of a therapist's life.

What could they possibly be teaching for that amount of time and money? 

NDT/Bobath uses "patient handling" where if you touch the patient in a particular way the patient would get better. Which makes no sense. If you could touch somebody and make them better that would be really nice. Touching is great. "Hands-on" is the way many rehab clinicians describe themselves. But does this hands-on treatment work for stroke? Is NDT/Bobath effective?

No and not really.

And how do I know this? Systematic reviews.  Systematic reviews can be used to figure out if anything is effective for anything -- at least in medicine. If you want to be sure that something is effective you turn to systematic reviews. It's basically a study of all the qualified studies of whatever the subject is. This study of studies either says the thing works, the thing doesn't work, or they don't know yet.

NDT/Bobath always does poorly in systematic reviews. And that should be the end of it, right? It doesn't work. Goodbye. But not so fast. I've been doing talks for years to therapists. I've heard every justification for continuing NDT/Bobath.

Here are some arguments made by NDT/Bobath therapists:

1. "There's research that says it works, and research that says it doesn't work. Its 'he said she said.' I choose to believe the research that says it works."

There are individual studies that say that NDT/Bobath works. Individual studies prove little. The real question is, what do all the studies say? Large groups of studies, from researchers around the world, can be looked at and analyzed en masse. These "studies of studies" are called meta- analyses and systematic reviews. For NDT/Bobath there are quite a few; links below. They all come to the same conclusion: NDT is not particularly effective.

2. "NDT incorporates all the latest research into NDT. Therefore NDT is research-based."

I call this the "Horshella." 

Person 1: "I love horseradish."  
Person 2: "Well I love Nutella!" 
Person 1: "Oh, horseradish tastes great with Nutella." 

Maybe. But we should probably test it before we market "Horshella". Smearing NDT/Bobath all over well run clinical trials does not make NDT/Bobath research-based. In fact, it destroys the original research by adding a debilitating confounding variable. Adding NDT/Bobath to a well researched intervention may make that intervention better, worse, or not affect it at all. But the original research was never done with NDT/Bobath, so we'll never know. Stealing other people's research and glomming it does not make your intervention research-based. All you've done is hijacked well run clinical trials, and in the process made everyone look bad.

3. "I don't need research to tell me something works. I've seen it work."

The world is flat. And I can prove it. Look out the window. See? I know global warming is not happening. When I got out of the shower this morning I was freezing! The sun revolves around the earth. Every day the sun comes up over there and goes down over there, so its revolving around us. 

"I've seen it work" speaks to clinical observation, a very important part of being a good clinician. But what if we were talking about cancer? If the oncologist said "I've have this treatment that I've seen work," your question might be, "What does the research say works?" Clinical practice without research is bad for cancer patients and stroke survivors. Clinicians are not blinded, they don't gather and analyze data, they don't have a control group, there is no elimination of confounds and on and on. Simply: Clinical observation won't tell you if A works better than B.


4. "Research doesn't know what works so I can use anything I want."

Here is the American Heart Association Scientific Statement on the Rehabilitation Care of the Stroke Patient. It mentions constraint induced therapy, electrical stimulation, robotics, etc. It not only doesn't recommend NDT, it doesn't mention NDT.

5. "What do I use for very low level survivors? They can't move and/or can't follow directions. So, I move them. At least I'm doing something."

Nothing else stops the plague so we're sticking with leeches. (The difference is that leeches may actually do harm. NDT does not do harm except in the sense that it leeches (!) $$ that could be better spent elsewhere.) 

Remember: There are only two kinds of true paralysis after stroke: Spastic and flaccid. Most survivors can move. Many, however are told not to move on their own because its bad movement, and will cause more bad movement. And who suggested bad movement will cause more bad movement (which is not true)? Bobath! Bobath called the movement after stroke "pathological" and insisted it be suppressed.  To quote Bobath's book, Adult Hemiplegia: The aim of treatment should be to inhibit the patient's abnormal patterns of movement because we cannot superimpose normal on abnormal movements. Let's say that a therapist was able to do this during treatment. Does the survivor not move the rest of the time for fear of abnormal movement?

Later... The movements the patient performs with or without the therapist help should not be done with undue effort. 

I call this the "The more you move the worse you'll get" philosophy.

The problem with Botox

When it comes to spasticity reduction, Botox is the 600 pound gorilla. It is the Oracle. If Oz was the world of spasticity, Botox would be its Wizard. Allergan, the company that makes Botox dictates the conversation. Why? Cold hard cash. Allergan made significantly more than $1 billion in the third quarter of 2012 alone.
 
Keep in mind that Allergan makes other drugs besides Botox. And spasticity isn't the main reason Botox makes 'em money.  The main reason Botox makes money is because of its wrinkle reduction qualities. Bottom line: they have plenty of cash. And they use that cash to influence opinion. This is inevitable, but also unfortunate. The influence that can be bought chips away at a discussion of other possibilities.

What are the other possibilities?

Phenol blocks. In the book "Spasticity: Diagnosis and Management" phenol blocks are called: a "Dying Art" That Merits Revival.
 

Why does it merit revival? Phenol blocks do pretty much the same thing as Botox for spasticity. But it costs less. Much, much less. This is something you should discuss with your doctor. It may be true that Botox is the best option. But it may save you some money to ask about phenol blocks. How much money is saved?

For muscles in the arm/hand, this is one estimate...
Botox: $1014.84
Phenol: $7.85

Another thing about Botox. For a long time the suggestion by Allergan was that Botox should be administered, and that's it. Botox provided a "vacation" from spasticity. They are in the business of selling drugs, not in the business of reduction of spasticity in any sort of permanent way. Remember, Botox does not cure spasticity. Phenol blocks are the same. All Botox and phenol blocks do is provide a window of opportunity to to regain executive (brain) control over spastic muscles. A classic example is of somebody that cannot open their hand. Spasticity in the muscles to close the hand is so strong that they can't open the hand. Botox or a phenol block is used to weaken the muscles that close the hand. This "unmasks" the movement that was always there: Hand opening. Now the hand can open because it's not fighting the spastic muscles that are trying to close the hand. But instead of treating this as a vacation, the person works hard to get the brain re-involved in all the muscles. (Allergan has changed its tune about this with prompting by me and others. They now say: administer Botox and then get therapy.)

During the "vacation" block provide hard work can help permanently reduce spasticity. 

Otherwise, it's just a vacation.