The upward spiral of recovery (II)

What tools are needed to allow for stroke survivors to drive their own recovery once they are discharged from therapy? It all starts with the home exercise program (HEP). Building the HEP should be initiated in the acute setting and continue to develop through subacute treatment. If the stroke survivor is unable to attend to an explanation of the arc of recovery and how the HEP fits into it, caregivers and family members may be educated instead. Once the stroke survivor is able to absorb the information, they would be the focus of education about the HEP. The amount of time recovering under the guidance of therapists is usually measured in months. The amount of time in which the patients is guiding their recovery is measured in decades. So the HEP becomes a flexible document.

The HEP should…

· Have the flexibility of progressing as the patient progresses

· Educate the patient on measuring progress

· Provide achievable milestones

· Provide benchmarks upon which the patient is directed back to therapy.

Upon discharge the HEP becomes an extension of the therapists’ and patients’ hard work. It's like teaching a kid to ride a bicycle. You hold them up, you run alongside, you guide them, and then you let go. We also tell our kids to keep pedaling because without the forward momentum, they fall. The HEP is the set of rules that will allow folks with brain injury continue their forward momentum. The hard work that patients have done with therapists is the first step on this upward spiral of recovery. But the HEP is the extension of that upward spiral. Finally, the patient fuse the HEP with their own plan of recovery that incorporates their own life. The life they lead drives recovery.

Therapists have to discharge patients once the patient has “plateaued.” However, research from many disciplines has refuted the concept of the definitive plateau. Any therapist worth their salt knows that recovery can continue, sometime spontaneously, well beyond the point of discharge. Unfortunately, the calculus made by many brain injured folks is simple: therapist=recovery. So part of the job of the therapist is to explain that recovery from brain injury is not just the plateau that precipitated discharge from subacute therapies. In fact, recovery becomes a lifelong series of plateaus.

Therapists are paid to be optimists. They know that focusing on disability is less effective than focusing on potential. Medical doctors have to low-ball any prognosis. Doctors feel uncomfortable setting expectations too high. An optimistic prognosis not realized goes against the medical ethics dictum; “first, do no harm.” If doctors set expectations too high, patient frustration (along with some pointed feedback) will be close behind. Therapists, on the other hand, have the responsibility of making clear the potential level of recovery. While doctors low-ball, therapists imagine. The act of transferring that imagination from therapist to patient is the proverbial "Apple a day."

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What we do...

Here's a spankin' new flier from our lab. It gives a good overview of what we do.

Click on the images and then click again to make them larger!

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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.

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The Ultimate Crystal Ball?

It turns out the the speed you walk (gait speed) is predictive of so many things that folks are now calling it "The Sixth Vital Sign." But here's some funny: everybody is calling everything the sixth vital sign including:

• Urinary continence
• End-tidal CO2
• Emotional distress
• Spirometry
• Glucose
• Functional Status
• Intracranial pressure
• Shortness of breath
• Molecular Genetics, in Oncology

Who will become the sixth, who knows? Some of these require a test in which the tester needs to be trained. Others are self-reported and we lie. But gait speed requires a stopwatch and 2 meters of hallway. Then just read the gait speed tea leaves! 
Here's a full explanation I wrote recently!
Here's another version!

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Neuroaid: Partial Truth and Petty Theft

Bottom line

• Neuroaid is a drug that is made from traditional Chinese herbs.
• Cost: $1,346
• Effectiveness: The company says it works. The research is not so clear.

Neuroaid has long been an easy joke among neurologists, psychiatrists and researchers. Here is an actual email:

Colleagues:

It looks like millions of lives will be restored. How absent minded of me to tell patients that there is no “magic bullet” for all of these years…and shame on you therapists and physicians for not giving the below to your patients. Thank goodness for Neuroaid.

I really had no opinion about it because on the face the claims seemed dubious so I never took the time to unpack the research.

But that all changed when neuroaid decided to call their blog The Stroke Recovery Blog (TSRB). It is true: you cannot copyright a blog name, especially not one with a generic name like TSRB. But they picked this name for a reason: It is an established name in stroke blogs, has been around since 2008 and is generally respected. ("So when folks look for that blog, they'll find our blog- We are geniuses!")

In any case, their choosing to steal this blog's name made me realize that the company that makes neuroaid may not be completely truthful.

So I did a bit of investigation....

There are several problems with their research.

• There is an obvious conflict of interest with regard to many of the folks involved in the research. That is, the people who are doing the research work for the company. This is bad, and it happens all the time. The profit motive may (or may not) sway the researchers to "massage the data" so that the data suggests that the product is AWESOME!!! 
• Consider Marie Germaine Bousser of neuroaid's scientific advisory board. She is also one of the researchers of the product. The same is true with others on neuoraid's scientific advisory board. Here's my question...how do they get away with that? The lab I work in does trials of products all the time but we have to sign conflict of interest forms that clearly separate us from the product tested. A lab can get itself in trouble  (and often through sheer osmosis, other labs at the same and related universities) when you get paid for your "research." (If you want a nerdy take on this issue, click here.) There are 10 studies on neuroaid that show up in Medline. Only one of the studies, from Iran, does not involve at least one author that is on neuroaid's board.
• Neuroaid's website has done everything they can to obfuscate. I have quite a few examples, but here's an easy one: They now call their researchers "Academic Partners," changed from "Scientific advisory board." But here's some funny: Google has not caught up. Here is a screen shot from 9.22.12.

They've also been called "Medical Experts and Investigators" for Moleac, the company that makes neuroaid. Here's a link. Also note that some of the authors on published articles work directly for Moleac, the company that makes neuroaid.

• Neuroaid is made wit "12 different Chinese herbs plus extracts of leech and scorpion." that are probably available in any Chinese drug store in any major American or European city. You can also buy them online. Here's one on Amazon. Here is another herb called "Strokaway." Here are more. Scorpion venom here. 
• (Have a look at Mike's take on this in the comments section link at the bottom of this post for more info on obtaining the drug in alternative ways. Thanks Mike!) 
• According to their site "...the price for NeuroAiD .... One month of treatment is US $488, including shipping fees. The standard 3-month treatment costs US$1,346 including shipping fees."
• The main way of measuring the drug in their biggest clinical trail was something called the "Comprehensive Function Score component of the Diagnostic Therapeutic Effects of Apoplexy." Stroke specific outcome measures is my area. Since the late 90s I've done all kinds of tests of recovery from stroke. I've never heard of the the test they use. And there is no way to research it. Medline has no mention of it. Google only produces results that reference guess who?
• Neuroaid claims it increases BDNF, a protien in the brain that helps recovery from stroke. As with many of their claims, there is a grain of truth here. They did find an increase of BDNF in one French rodent study.
• "Alternative medicine that works is called medicine." I think my colleague's email, in blue above, suggests the primary problem. If neuroaid had reached the level of evidence that neuroaid claims then why would MDs not suggest it's use? Because MDs don't want people to recover because....uh...
• NOTE: I don't know this drug does not work. But by any stretch, the evidence is thin. 

Bottom line:  

• A company makes strident claims with little research to back it up.
• Company's PR firm decides to hijack "hits" from  this blog to their profitable website disguised as a blog.  
• Reference articles

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26 months

In my book I talk about "super survivors" defined as a survivor who is “…so unwilling to let go of their career, their independence, or a personal passion that they are compelled to recover. They intertwine recovery with what they love to do.”

When somebody can use their life's passion to drive recovery everything is made easier.

• It's easier for the therapist because they don't have to work so hard to motivate.
  
• It's easier for the stroke survivor because they have a cherished task on which to focus.
  
• It's easier for the survivor’s brain because when it comes to driving plastic changes "the power is in the focus.” And we tend to focus on what we care about.
  

There are other things that motivate survivors towards recovery. Things like career (and by extension money), fear (i.e. falling), friendship (many survivors talk about friends who have "ditched" them after their stroke), the need for independence etc. etc. All of these can be extraordinarily important, although I would suggest that they may be somewhat less important than the goals of the "super survivor" focused on a cherished task.

But if the scale goes from "I need to get better because of friends, money, fear etc." to “I need to get better in order to get back to guitar playing (a cherished task)" there is actually one step further.

That step is called Kathy.

Kathy Spencer is the only survivor I know who has reached a “nirvana of recovery”.

People who get really good at stuff are not necessarily completely focused on outcomes. Most folks who become expert at something are focused on process. The goal in great musicians and athletes and students etc. is to learn. To learn is to forcibly rewire the brain. Relearning of movement after stroke is learning, called motor learning. I’ve discussed this before; learning new movements and learning French, piano, math or anything else is the same. They all happen through rewiring existing neurons in the cortex of the brain.

Learning ain’t easy. It necessarily takes work. But let me ask you this…Which student is going to get a better grade…

Jack: “I’m studying because I want a good grade.”

Jill: “I’m studying because this stuff is really cool.”

Outcome focused Vs. process focused.

Obviously the lines can get blurred because as more ability you have the more that can be done to achieve the outcome. But survivors spend much of their time in a no-mans land where they are working, but are not yet able to use their limbs functionally. And this is where the plot is often lost. If your only interest is the outcome you’ll probably say “the outcome is so far away and I may not get there.” If your interest is process the question is, “What can I do to get just a little bit more?

It seems to me like Kathy Spencer fell in love with the process. And it's tough to fall in love with the process that, unlike practicing soccer and guitar, had no guarantee for success, and where you’re not learning anything new, really. With Kathy it seems to be a leap of faith, although as you'll see faith may have had a bit to do with it.

In the video below Kathy explains a little bit about the process she went through to recover. What is interesting to me is, not so much the particular exercises she did (these will be different for every survivor) but the perspective she takes. 26 months of hard work during which there was no guarantee.

26 months.

And yes, she mentions my book but I pinky swear, I was going to blog on this within the first 20 seconds of watching this great vid.

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Tools, Techniques and Technology

I do a lot of seminars on driving cortical neuroplastic change, the unequivocal bedrock of recovery, in stroke survivors. I've done talks in some of the best rehab hospitals in this country. I've also done talks in rural areas where the nearest rehab hospital is hundreds of miles away. Some of the attendees have access to a smorgasbord of leading-edge technologies. Some home care therapists have access to very little technology. And whatever technology they do have has to fit in the car. Some have immediate access to neurologists and physiatrists. Other's laugh when I say "Kick it upstairs to physiatry." "We rarely see any doctors,” they say. Rehab settings run the gamut; feast or famine or somewhere in between.

When I do talks I always remind myself of a particular touchstone that reminds me of why I, again and again, get up in front of therapists in the first place. It goes something like this: "If I was a stroke survivor knowing what I know about stroke recovery, what would I want therapist to know?" This question has served me well. I challenge clinicians as an informed advocate.

There are people, facilities and technologies that are essential to achieving the highest level of recovery. It is unfortunate that many facilities and therapists don’t have accesses to these tools. Stroke is the leading cause of long term disability. Recovery deserves the best tools. The clinical expertise is there. Clinicians spend a tremendous amount of time, energy and money being trained to be the best they can be. But just like every other profession from astronaut to auto mechanic, the right tools and access to the right people are essential.

During seminars I’ll ask, who has access to XYZ technology? Who has the availability of a physiatrist? Who has access to somebody who can do serial casting? Who has access to e-stim orthotics, or a particular splint or a partial weight supported trainer, etc.? Usually the same one or two or three people raise their hands. If the talk is in a hospital setting where all the clinicians are from that hospital they may all raise their hands. If it's a rural area where many are involved in skilled nursing or home health care, very few raise their hands.

Having access to and an understanding of a handful of technologies is essential to standard of care for stroke survivors. Also essential is access to clinicians with the right skill set. So what and who is essential? If I were to start "Pete's Center for Stroke Recovery" I would have access to the following before the doors ever opened.

Treadmills. Treadmills are never ending parallel bars. They expand the size of the gym with a very small footprint. Put a mirror in front of them and they become instantaneous feedback machines. They also provide an essential bit of quantifiable data: speed of gait.

Recumbent, 4-limb bilateral trainer. Recumbent trainers do not have to break the bank. Inexpensive ones can be found for $2500 or so. These are essential not only as a pre-ambulation device, but also because they develop cardiovascular and muscular strength; "banking" both are essential to doing the hard work of recovery.

Some sort of harnessing system for gait training. Stroke recovery works best with over-challenge. Challenge drives neuroplasticity and neuroplasticity drives recovery. It's impossible to over challenge with standard gait training (a gait belt and guarding). The fear of falling on the part of the survivor and the therapist runs headlong into the challenge that needs to be realized. If the survivor is harnessed, falls are impossible and challenge flourishes. Partial weight sported walking is but one option that requires harnessing. Speed intensive treadmill training (also known as speed dependant treadmill training) has shown stellar efficacy in increasing speed of gait (please see my previous article in Advance entitled "Using Gait Speed as a Marker for Progress" for description of the importance of gait speed in recovery, and as an outcome measure). The usual suspect in this category is the LiteGait. But that's not the only option. Google "parachute harness" and you'll find a ton of inexpensive options. Of course you need something to hang the harness from, but this could be more of an issue of your facility's maintenance department, and less an issue of buying an expensive piece of equipment. Over ground systems may be a better option for some gyms. NeuroGym, Biodex and other companies make over ground systems that provide an inexpensive harnessing option.

Cyclic electrical stimulation. The problem with e-stim generally is that the machines tend to intimidate most clinicians. But there are so many good things that e-stim dies that it is no longer optional. From reestablishing sensation to keeping soft tissue shortening at bay, e-stim is essential a certain points in the arc of recovery.

EMG based electrical stimulation (EMG-e-stim). This “next generation” of e-stim is important once a minute amount of movement is possible. It is believed that EMG-e-stim drives cortical changes which leads to small increases in movement. And small increases in movement are important in the early stages of repetitive practice paradigms.

Access to serial casting. Essential to fighting the good fight against soft tissue shortening. There are no splints that have shown clinical efficacy in increasing soft tissue length. Serial casting is the only nonsurgical treatment option to increase PROM of joints that have established contracture.

Access to neurologists, and especially physiatrists. Without them it's very difficult to deal with issues that range from spasticity to pain.

A constraint induced therapy (CIT) program. Although usually only benefiting higher-level stroke survivors, CIT is essential to the stroke recovery endgame.

Visit my stroke blog to get more info.

After stroke, spasticity is a bad thing—but things could be worse.

Flaccidity is an example of a point in the poststroke arc of recovery with consequences as bad, or worse, than spasticity. Spasticity carries with it the potential for contracture, pressure sores, pain, joint instability and deformities. Flaccidity, too, carries obvious physical risks (i.e., subluxation, muscle atrophy, etc.). But flaccidity also provides an ominous window onto the prognosis of the limb. Flaccidity says 2 things: “Recovery will have to wait” and/or “Recovery may have ended”. 

There are two kinds of paralysis; flaccid paralysis and spastic paralysis. Most of the patients therapists see fall into neither category. Part of the reason that therapists typically don't see truly paralyzed patients is because, traditionally at least, little can be done to help. With the advent and broadening use of intrathecal baclofen, injectable neurolytics and the dorsal root rhizotomy, etc., the potential for treatment has broadened. Still, most of the people that are candidates for treatments that aim to improve limb movement are not going to be hemiplegic (paralyzed) -- they'll be hemiparetic (weak). The question becomes, is there more potential and somebody who has near flaccid or spastic?

We can look to pioneering physical therapist Signe Brunnström for insight. Brunnström’s six stages (Thanks “Pink House On The Corner” blog!) of recovery provide the ultimate template for recovery from stroke. Stage I is flaccid (although reflexes are available), stage II is harkened by the emergence of spasticity and synergies, and in stage III synergies and spasticity are at their zenith. So the progression is clear; flaccidity to spasticity. And as with much of Brunnström’s work there is an underlying wisdom; spasticity, as disdained and dangerous as it is, is preferable to flaccidity. This is especially true early after stroke. A patient with emergent spasticity can work in a repetitive and demanding fashion very early in the arc of recovery. And when it comes to stroke recovery, early is better. This is as true in rat models as it is in clinical trials involving human participants. But if somebody's flaccid, how you begin rehab? Although most patients do not remain flaccid, the delay that flaccidity creates provides a much more shallow recovery trajectory.

Spasticity may have another advantage over flaccidity with regard to issues outside of the progression towards recovery. Often the flaccid limb, whose dearth of sensation usually parallels its dearth of movement, is at risk of injury. Bluntly, the world can be a dangerous place to a flaccid limb. Like a weakling in a neighborhood of bullies, the flaccid limb is surrounded by walls, corners, countertops and other unforgiving surfaces. In the lower extremity is usually less of an issue because the flaccid limb can be controlled within the confines of a wheelchair. In the upper extremity the limb is often put in a trough and/or sling to protect the limb. These forms of stabilizing the upper extremity protect the limb in two ways; keeping the arm from flailing with the potential for injury; protecting the shoulder from subluxation.

Spasticity manages to protect the limb from these “bullies.” In the upper extremity the spastic posture brings the arm across the body, internally rotated and flexed at the elbow wrist and fingers. This posture is dictated by the overwhelming strength of the flexors and internal rotators. For an unprotected arm spasticity can be seen as a good thing, simply because it keeps the limb out of trouble.

Beyond providing an immature protection mechanism, spasticity may do other beneficial things as well. Spasticity may induce Wolf’s law, which states that bone will remodel through osteoblastic activity dependent on the loads it’s placed under. That is, the pull of muscle on bone is what keeps bones from becoming osteoporotic. This is particularly important issue because stroke survivors tend to fall towards the affected side. Because there is less bone strength on that side there is a higher chance of fracture. Spasticity may also improve circulation because of the activity in the triceps surae (gastroc, soleus). The primary way blood is delivered from the extremities back to the heart and lungs is the muscle contraction. With regard to the circulatory system spasticity is preferential to flaccidity, because the blood gets shunted towards the heart and lungs. Spasticity also maintains muscle bulk because, as pathologic as it is, at least the muscle is contracting.

Most importantly, spasticity provides a crude template for future recovery. But despite its advantage over flaccidity, all is not rosy with regard to spasticity. As the first line of defense, therapists are tasked with interrupting the march towards contracture. Tools in neurology and physiatry are helping with that task. Serial casting and a dedicated stretching program are also essential tools. The bottom line is, as much as spasticity is a welcome visitor it is best when it is exactly the: a visitor. Spasticity allows for at least the chance of its visit being shortened by allowing for movement in some planes and pivots. Take what spasticity give as you usher it out the door.

Formisano R, Pantano P, Buzzi MG, Vinicola V, Penta F, Barbanti P, Lenzi GL. Late motor recovery is influenced by muscle tone changes after stroke. Arch Phys Med Rehabil. 2005 Feb;86(2):308-11. PubMed PMID: 15706559.

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Gabrielle Giffords: An Unpredictable Prognosis

I find it interesting the way the media has reflected the rehabilitation of congresswoman Gabrielle Giffords. "She is talking," they say. "And walking." "And responding to commands” “And moving both arms” An article in the British paper The Independent puts the hyper optimism this way…

In the weeks since, doctors have been impressed by her recovery, which has been described variously in press reports as "miraculous", "astonishing" and "confounding all expectations". On Sunday the Observer carried a piece headlined "Triumph of the human spirit heals the wounds of Arizona tragedy".

But what's the truth about her prognosis for recovery? I wish her best, of course. But I'm skeptical that the hype is an accurate representation of the recovery. Anyone declaring this anything but a work in progress is whistling a bit of Dixie.

A good article about the anatomy (literally) of the injury is available in Scientific American.

The article points out that there are 2 things affected by a bullet to the brain. First, the obvious death of the neurons that lies in the path of the bullet. Second, neurons outside of the direct path are damaged by waves of pressure that follows the bullet.

The bullet went in the front of her head and exited the back, we think. It may have taken the opposite trajectory, experts disagree. Her eye socket was affected. She had surgery to repair the socket 2 weeks or so ago, but more surgery is needed.

A nurse that works with the Congresswoman touches her head where the wound is on Gifford's forehead.

Here are some reasons to be skeptical that the media representation is an accurate representation.

1. Her injury will allow for relatively rapid recovery early (now) whereas recovery will be much more difficult as time goes on. There are 2 reasons for this:

• The swelling in her brain is receding and all the chemicals which rushed to the site (cytokines, enzymes, etc.) begin to dissipate allowing the brain to work better.
  
• Through a process known as "cortical shock," neurons "lie low" immediately after injury but rapidly come back on line early in recovery (now). The recovery that come early is relatively rapid. And, compared to later, recovery is relatively "easy". Once all the surviving neurons are back on line, recovery takes a ton of work.
  

2. There are 2 levels of recovery; one is to get back to be able to take care of herself. The second is to get to the level where she can continue to work as a congresswoman. Number one is doable. Number two...?

3. The bullet entered the left side of the front of her head and traveled through her brain, exiting through the left side of the back of the head. It did not cross into the right side of her brain. Language is typically on the left side of the brain. She's been responding to commands so she's not receptively aphasic. Although it is still to be determined the complexity of information she can process, regarding basic commands, she can understand what’s being said to her. But the speech...that’s a whole other thing. She’s been involved with Melodic Intonation Therapy (MIT) which uses the right (uninjured) part of the brain and she’s been singing the lyrics from songs. But she’s doing this because her speech may be very limited. Conjecture on my part; but if she had volitional speech they’d be focusing on that.

4. People make the mistake of thinking that a brain injury is simply the brain minus the dead tissue. But, because of a process known as diaschisis, other areas of the brain are affected. It is not the brain minus the hole in the brain. It is the brain, minus the hole, plus the effect on all the other parts of the brain that that hole used to communicate with. The brain is very “use it or loose it.” So when a portion of the brain dies, neurons that used to communicate with that area essentially shrink in a process known as “dedritic pruning.” And there are other issues as well, most of which people who would read this blog would know. Brain injury affects

• personality
  
• impulse control
  
• sense of humor (I've even seen cases where the sense of humor has increased)
  
• attention span
  
• visual processing
• flexibility and problem solving ability
  
• ...and the list goes on and on.
  

A more three-dimensional perspective will be available in about a year. But the process of recovery may extend throughout her life.

I wish the congresswoman the best.

Visit my stroke blog to get more info.

"Best New Medical Weblog"!

I am very happy to report that one of my favorite websites ever Medgadget has nominated the Stroke Recovery Blog as a "Best New Medical Weblog"!

Also, this is the perfect time to tell you about Medgadget. It really is a cool site. It is a one-stop portal to emergent technology in medicine. For stroke survivors it is a good place to go every once in a while. There is a drop-down menu on the right side of the website which has an entry for "rehab".

Alternatively, you can put something like "stroke rehabilitation" into the search box. If you do that one such entry involves our team at the Drake Center rehabilitation hospital here in Cincinnati.

Visit my stroke blog to get more info.