Oh, you wanted answers, now I get it!

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Stroke survivors and caregivers are often frustrated with stroke recovery research. Why are the simple questions not even asked, they wonder. Typical questions are:

1. Why are there no "head to head" comparisons between interventions. For instance, why don't they compare electrical stimulation to the Saeboflex?

2. Why don't they combine interventions the way a therapist would do therapy? For instance, why aren't there studies that look at electrical stimulation and the Saebo flex?

3. Why aren't simple questions answered, like, "What is the most effective treatment option given my level of arm movement?"

These are the sort of questions that confuse people that are not in research. I hate to be an apologist for research and researchers, but let me offer some insight...

Head to head comparisons are never done, in any pathology, for any intervention, initially. For instance you probably didn't see a lot of comparisons between different cholesterol drugs, initially. One company makes a cholesterol drug, they put a lot of research into it, and then they put it on the market. A second company does the same thing. But both those companies will make money off of those drugs, so the cost of the studies are justified. If there's a comparison study done, nobody's can make any money. In fact, one of the two drugs is gonna look really bad, and sell even less. So who's going to fund a study like that?

Now you may find studies that compare different cholesterol drugs. Cholesterol drugs have been around since the early 1970s. Rehabilitation research into stroke really started in the mid-to-late 90s. It wasn't that people weren't doing research before then, it was just that the outcome measures were really poor. Let's put it this way, to test how well somebody was moving-- prior to the mid-1990s-- we used a fancy protractor, and a VCR. Now we use kinematics labs. Prior to the early 1990s we had no way to image the brain, and now we have MRI, functional MRI, transcranial magnetic stimulation, and on and on. 

Again, not to be an apologist for researchers, but there are other issues as well. For instance, when should you do the studies? Should you do them when the stroke survivor is acute, or during the subacute phase, or the chronic phase? Or should you do all three? It takes some time to explain, but recovery is very different during those three phases. And here's another problem: recruitment. It is very difficult to recruit stroke survivors during the acute and subacute phases. It has to do with the fact that, first of all, you can't get in the way of "standard of care." That is, it is unethical for research to get in the way of what a stroke survivor would typically get. Also, what that standard of care is doing is considered a "confound" in research. A confound is something that the researchers have no control over. In this case the confound would be the therapist, and the therapy that the therapist is offering. Each therapist is different, and each therapy or combination of therapies is different. The researcher can do nothing about those variables (confounds). 

Also, for acute studies, it's incredibly difficult to recruit. "Hi Mr. Smith, my name is Pete, I'm from research down the hall. You had a stroke two days ago. Would you like to get involved in a clinical trial? Is now a good time are you, or are you busy?" You see the problem.

The reason they don't combine interventions is because we haven't even figured out if the interventions by themselves work. Within one intervention, let's say electrical stimulation for example, we don't even know what the proper dosage should be. Is it a half an hour three times a day? Is it 15 minutes five times a day? Does it depend on how well the stroke survivor moves to begin with? What about their spasticity-- how does that affect things? So research tends to focus on a very tight question. Let's get that tight question answered first, then we can be pretty safe to start as the second, third, fourth... 15th question.

What works best for what stroke survivor in what situation is impossible to determine at this point. The algorithm for this stuff is incredibly complicated because the stroke can hit any part of the brain, people can have different sequelae (symptoms other stroke), and different comorbidities (illnesses outside the stroke). Further, they can be of different motivational levels, different ages, and on and on.

But that doesn't help you. You don't have time. If you're reading this blog is because you need answers now. The good news is, if you're willing to educate yourself a little bit, your guess is as good as ours.

Good luck.

Poor taste public service announcement!

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Have a look at this cartoon. In poor taste, yes. But it manages to raise awareness and it does it in a way that is comically accurate. Here is your quiz: Watch the vid and then do this: Just below the cartoon, highlight the invisible text by right clicking and dragging to the bottom of the post. Therein lies my observation of what the cartoon gets right. If you'd like me to add anything I've missed, put it in the comments or email me.

Highlight text below↓↓↓↓↓↓↓↓↓↓↓↓↓
1. Drop foot 
2. Inability to clear ground during swing phase of gait 
3. Flaccid left upper 
4. Lack of sensation left upper 
5. Caregiver concern regarding driving 
6. Difficulty with spacial issues while driving 
7. Left hemiparesis, no aphasia! 
8. "Stroke! Stroke! Stroke!" Its a public service announcement! More of the episode here...

In the comments section Jim Sparks points to a part in the episode where a treatment that is not proven to work, works!

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"Instant gratification and how it may hurt you" OR "It works great (and that's the problem)"

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You want to eliminate drop foot? 

Use an AFO, done!

You want the elbow to straighten?

Tap the triceps, done! 

  

You want the hand to stay open? 

Put a splint on, done!

You want to improve balance? 

Give 'em a walker, done!

You want to have them talk better? 

Give them a language aid, done!

You them to swallow better? 

Feed them thickened liquids, done!

In every case, and many more, short-term "instant gratification" often gets in the way of a more complete recovery. 

Why and how?

The irony of stroke is that deficits to lifting the foot, swallowing, balance, etc. are exactly what needs to be embraced to promote recovery. So instead of throwing an external aid at the problem, sometimes its best to challenge the challenge.

• If you want to speak French better, do you get an app?
• If you want to learn how to work on your car do you hire a better mechanic?
• If you want to be better at driving directions do you get a GPS?

In stroke, sometimes it is better to use the aid, no doubt. But choose your acquiescence wisely.

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BRAINS! (get used to it)

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     Out of all the organs in the human body we know the least about the brain. Every other organ in the body and we know to the cellular, if not the molecular level.

But the brain... You've heard the clichés, I'm sure; given the interdependence of neurons, the human brain is the most complex structure in the known galaxy, including the galaxy itself. The estimate of planets in the galaxy is upwards of 1 trillion. The most conservative estimate of the number of synaptic connections in the human brain is 1000 trillion! 

"But," you may think, "I can't even figure out which socks match my shoes." That maybe true, but remember: while you're trying to figure that out, your brain is keeping every one of the trillions of cells in your body in relative harmony.

We need to start looking at the brain. Yes, its squishy, yes its bloody, yes it is huge and pulsates in aliens from Mars. But we need to get over this "Its too weird!" posture, or we, its owner, can't really understand the darned thing.

Here's a place to start... Below is a video of the surgery for a subdural hematoma. This type of stroke is the least common (about 7%), but the most deadly.

Warning: this video is graphic. Frankly, I had a hard time sitting through it. I would suggest watching just one portion – a few seconds, from 1:32 to 1:39. This is the good part, where the surgeon rids the brain of this sort of cap of blood that has accumulated between the skull and the brain. If this sort of surgery is not done, the brain will continue to compress, furthering damage.

Enjoy!

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.

~

"Science. Confusing everyone since the 1500s!"

Girl. 
For no particular reason.

An interesting article came out recently in the popular press. Bottom line: Oral contraceptives (OC) can increase risk of stroke. OC can also increase risks for other diseases as well.

Let's talk about stroke first. Current use of OC increases chance of a clot breaking of somewhere in the veins/arteries and causing stroke. Interesting side-note: Chances go up with the amount of estrogen in the OC. Nerdy way of saying this: "... the risk is directly proportional to the amount of estrogen present in the pill." 

The article also says there is an increase in brain and breast cancers. Brain cancer chance IS doubled but the type of brain cancer they're talking about is very rare so a doubling still makes it ... very rare. 

Breast cancer is increased but only if you are a recent user (within the prior year). 

And what of the affect of oral contraceptives (OC) on stroke? "Current OC use increases risks of venous thromboembolism and ischemic stroke. However, women of reproductive age are at low baseline risk, so the chances are small."

Hemianopsia (visual field cut) after stroke: The Neuroplastic model

Note: There are two free resources for retraining vision after stroke. Both are on the right hand column of this site (-->). Click on "Vision Problems? Click Here!" and/or "Tx for hemianopia and spatial neglect".

Sometimes survivors "neglect" their bad side. Survivors who have neglect don't pay attention (don't see or even recognize as their own) the "bad" side. In fact, it can be so bad that they don't even look at the "bad side" half of the world.

There are a ton of terms for this phenomenon. Unilateral neglect is the most common. Other terms are... 

• unilateral spatial agnosia 
• unilateral visual neglect 
• hemi-inattention
• hemi-imperception

This inattention may be caused by visual deficits on the neglected side— a problem of the eyes and eyesight. The problem with eyesight that cuts off half the world is called hemianopsia.

Or it may be a matter that the brain is not processing information coming from that side, including vision. Or it could be both of those (vision and a brain problem) together. 

Unilateral neglect and the brain 

What do we pay attention to? There's lots of stuff in this great big world so we make choices about what we attend to. But someone with unilateral neglect can't/won't pay attention to their "bad" side.  

The "neuroplastic model of stroke recovery" was a term I coined based on the observation that, no matter what deficits are left the survivor there are groups of researchers trying to develop "brain rewiring" treatments to reverse those deficits.

The neuroplastic model for Unilateral neglect becomes really clear if you look at it as more of a "won't" issue and less of a "can't" issue. If a survivor won't, it suggest that they could. Because if they won't then maybe their perspective can be changed so they will. So reducing inattention can be helped by paying more attention. 

With unilateral neglect inattention to the affected side is bad for obvious reasons. But Inattention is also bad, because, as this book points out: Inattention results in confusion, and confusion increases inattention. So what can be done? How do you get someone or yourself, to attend; to pay attention? 

Therapists contend that you should approach and do everything on the affected side so that the stroke survivor attends this affected side. However, it's a good idea to start off on the good side, otherwise, you may not know if the survivor is even paying attention to what you're trying to communicate with them. For instance the survivor may not understand instructions, context, spacial issues, etc. So do all the early teaching stuff on the good side.

To start with, survivors can be encouraged to turn their head towards the neglected side. Eventually, the survivor should be encouraged not to turn their head, but to move their eyes towards the neglected side.

It happens more often with people where the left side of their body is the "bad side." This may have something to do with the fact that we tend to be "right eye dominant." That is just in the normal course of human events, the right eye is the one that we more trust, and use.

Using tactile stimulation can help survivors be aware of the neglected side. You can use touch on the affected side, or rough cloth, a vibrator, etc.

It's a good idea for survivors to understand that they have neglected side. If it's a vision problem, be aware that you have vision loss on that side. Examples in the room around them can be used. You might say how many chairs in this room, and the survivor would only count half of them as they would neglect half the room, and therefore have the chairs.

Don't deny...

 "...unaware of the complete nature of the disability and even deny it, blaming the problem on eyeglasses that are too weak or a room that is too dark."

Nerdy take:

 "To enhance the integration of scanning behavior during functional tasks such as gait and dressing, the client should be reminded of scanning principles and carried through a series of scanning exercises before initiation of the activity. If inattention reappears during the activity, the therapist should stop and assist the client in becoming reoriented before the activity is resumed."  

There are two ways to recover from stroke

There are two ways to recover from stroke. And they correspond to two of the four phases of stroke.
 
Let me start with four phases of stroke:

1. Hyperacute
2. Acute
3. Subacute
4. Chronic

For the sake of brevity let's cross off the top two: 

1. Hyperacute
2. Acute 

Recovery doesn't really happen during those two.
 

(I'll put why those two phases are important - outside of recovery per se- at the bottom of this entry).

Recovery – broadly defined as "getting better" – happens during the subacute and chronic phases.
 

The subacute phase: (from approximately the first week to approximately the third month –although this can vary wildly from survivor to survivor)

Most recovery during this phase is what would be called "spontaneous recovery" or "natural recovery." Recovery during this phase is driven by healing in the brain. Specifically it has to do with neurons that are temporarily "stunned" by the stroke becoming "unstunned" and coming back online. As they come back online recovery happens. That is, it's "spontaneous." It is true that people who get therapy during the subacute phase will get better than people who don't get therapy. In fact, people who get intensive therapy – therapy that involves a lot of work and a lot of repetitions – will get better than people who just get regular therapy. But even with no traditional therapy, survivors will almost always have some significant amount of recovery during the subacute phase. Lte's put it this way...
The subacute phase: Recovery Happens
 
The chronic phase (from approximately three months to the end of life). 

During the chronic phase a lot of recovery can happen. This phase was traditionally known as the phase in which nothing could happen – but that has been proven to be broadly untrue. What confuses people is that recovery doesn't happen as easily during the chronic phase as it did during the subacute phase. There is (usually) no "spontaneous" recovery during the chronic phase. The survivor has to claw and scratch for every bit of recovery. And while during the subacute phase spontaneous recovery is driven by neurons flooding back, during the chronic phase brain plasticity (rewiring) comes into play. And brain plasticity during chronic phase is just as difficult for the survivor as it is for the rest of us. It involves a lot of hard work, a lot of dedication, a lot of repetitions, and a lot of  focus.
 

The hyperacute and acute phases.

Important things happen during these two phases, to be sure. Things like saving lives and saving brain. But these two phases are not conducive to the effort needed to drive recovery. In fact, if too much effort is made, you can enlarge the area damaged by the stroke. So during these two phases, listen to the healthcare professionals around you, and convalesce. But once the subacute phase starts, its time to "put the pedal to the metal." 

How will you know when the subacute phase starts? Spontaneous recovery happens!