Stroke Recovery: How to make sense of “it all” An interview with author and stroke rehab expert Peter Levine

Raise your hand if you are familiar with the following terms:

Dissection. Embolism. Transient Ischemic Attack. Cerebral Infarction. Tissue Plasminogen Activator. Spasticity. Neuro-plasticity. Deep Vein Thrombosis. Dissuse Atrophy. Subluxation. Biofeedback.

Ok now put your hand down if you only raised your hand because you thought those were names of heavy metal bands.

Those words represent just a sampling of the literally dozens of big words that were thrown at me in the minutes, hours, days, weeks, and months immediately following my stroke. The words came, mostly, from the mouths of medical professionals who, I assume, had the primary intention of proving that they know stuff that I don’t.

Making Sense of It All

When you have a stroke, it’s difficult finding information to help you make sense of it all.

What do I mean by “it all”?

It all, as in: What exactly is a stroke? Why did I have one? Will I have another? Why can’t I move my arms and legs? How long will this last? Will I ever get better? How much pain should I expect to have? What did I do to deserve this? Am I going to die? Will I ever play guitar again? Who is that large bearded man next to my bed, and why is he the one giving me a sponge bath and not the hot Mexican chick who brought my lunch?

And that’s just some of “it all.” There is a scarcity of good, patient-friendly information readily accessible to stroke patients. I have scoured every nook and cranny of the Internet searching for answers and found nothing of use. Which is not to say that the Internet is completely devoid of good, practical information for stroke patients. I did, thankfully, encounter one writer who seems to “get it.” His name is Peter G Levine and he is the Co-Director of the Neuromotor Recovery and Rehabilitation Laboratory located in Cincinnati, OH. He has also written a great book, Stronger After Stroke: Your Roadmap to Recovery, which is by far the most useful publication I’ve encountered for stroke survivors who want to make sense of “it all.” He also maintains a blog that conveys the ins-and-outs of stroke rehabilitation in such a clear and concise manner that it almost makes reading seem like something one could conceivably do for pleasure. Dude not only knows about stuff, but he knows how to say stuff, too. I kept running into his name everywhere I went, and whenever I did, you can be sure that it was attached to something worth reading. For instance, his explanation of spasticity as it manifests in stroke patients was not only the best I had encountered, but the only explanation that I had encountered that gave me any insight at all into exactly why my arm insisted on curling up against my body.

So, when I decided to try my hand at creating/moderating an online support network for stroke survivors, I knew that I wanted it to be more than just a “facebook for stroke survivors.” I wanted to provide good, useful content: The type of information I wanted/needed after my stroke. And today, with the benefit of hindsight I knew exactly to whom I would turn to help me generate such content: Peter G. Levine. The content that follows is a “Q&A,” wherein I provide the Q, and Peter the A.

Mr. Levine wisely begins with a disclaimer:

Re: any suggestions I make: Always check with your MD first. Even the simplest things like stretching and cardiovascular training can injure.

So, the questions …

Describe some of the factors which may impact a stroke survivor’s ability to move as he or she had pre-stroke. What are these factors and how might they be overcome?

If you've read my book you know how I’m obsessed with neuroplasticity. You can slice it and you can dice it but the bottom line always comes back to stroke as brain injury -- and how to overcome it. If you can't get the brain to reorganize around the injury, recovery is toast.

• Spasticity: caused by brain damage.

• Inability to feel the movement: caused by brain damage.

• Unilateral neglect (decreased attention to the “bad” side): caused by brain damage.

• Lack of control over the affected arm and leg: caused by brain damage.

• Aphasia: caused by brain damage

• Vision problems: caused by brain damage

• And much more!: caused by brain damage

So the answer to the question “… how might movement problems be overcome?” is simple: Rewire your brain.

And it is good that it is simple because only the stroke survivor can do it. A therapist could have a double major physical and occupational therapist PhD from Harvard school of Super Duper Rehab summa cum laude with postdoctoral training as a Rhodes Scholar and they still can't do it for you. You know the old Smokey the Bear poster: "Only you can prevent forest fires"? For stroke survivors the poster should say: "Only you can drive neuroplastic change". Fortunately, the rules for rewiring your brain are very, very simple. Unfortunately, rewiring takes a tremendous amount of hard work.

How do we, as patients, know that we are getting the best therapeutic care possible? How do we know whether our therapists practice the latest and greatest treatment methods?

This is an amazingly good question and amazingly difficult to answer. The short answer is look for facilities and therapists that are "evidence-based" (basing treatment on the best available scientific evidence). Being evidence-based is sort of like having a GPS.

Imagine you have two people; one person has an absolutely stellar sense of direction. They never seem to get lost. The other person has no sense direction at all. They get lost in their own neighborhood. Let's say the “neighborhood looser” buys a GPS. Now who has a better sense of direction?

Imagine you have two therapists; one therapist is very smart, intuitive, conscientious, and caring. Everyone says they are a great therapist. The other therapist is sloppy, snotty and disorganized. Let's say snotty therapist reads a lot of stroke recovery research and implements what he reads. Now who is the better therapist for you?

How do you tell if a therapist is evidence-based?

I would ask them point-blank, "According to research, what are the best treatment options?" One bad sign would be that they don't mention constraint induced therapy (CIT). Another bad sign might be that they are vague or fumble. Or if they say, “Well the best therapy is XYZ therapy.” There is no best therapy. I would caution against therapists who say, “I am a (insert complicated sounding name)-based therapist.” There are many therapists who are devotees of a particular type of therapy. Their single-therapy focus can blind them to the wide and expanding world of stroke recovery options. Different things work at different times for different stroke survivors.

If they do talk about a therapy you've never heard about ask, "Has that been shown to rewire the brain of stroke survivors?" Two possible answers "Not that I know of” and "I don't know” are a bad sign.

Also, I would caution against therapists who take it easy on you. Recovery is not easy and if it is-- you're doing it wrong. The therapist’s job is to channel you towards a productive struggle. Their job is also to make sure that you continue that productive struggle once you leave their care.

Generally speaking you will get the best therapy possible in rehabilitation hospitals, both as an inpatient or outpatient. And equipment often does matter.

The facility should have at least:

• treadmill

• parallel bars

• elevated exercise mats called plinths

• some sort of recombinant stepper (i.e. NuStep)

• the ability to do a cyclic (on/off) electrical stimulation

Better facilities will have all of the above, plus:

• partial weight supported walking (i.e. LiteGait)

• the ability to do functional electrical stimulation (e-stim within the context of a real-world task) The best facilities will have all of the above, plus:

• Therapists who are Bioness trained, Saebo trained, and trained in constraint induced therapy or modified constraint induced therapy.

• Trained occupational therapists and the needed equipment to do and splinting (to retain muscle length) and/or serial casting (to increase muscle length).

• An active research department. Also essential to “best therapeutic care possible” is an aggressive physiatrist (physical medicine and rehabilitation doc). Stroke survivors often lose contact with their physiatrist a few months after their stroke. I would strongly suggest that stroke survivors see a physiatrist at least every year or two. Physiatrists should automatically be consulted if the stroke has caused any of the following: • falls • bowel and bladder problems • pain that limits function • spasticity that limits function • soft tissue shortening (contracture); tightness that does not allow you to move a joint through it’s normal range of motion with the help of the unaffected hand or a caregiver.

How common is it for a stroke patient to experience a 100% return of function? The short answer is about 10 to 15% of stroke survivors eventually show little or no deficits. These folks will often show a relatively full recovery within a few weeks post-stroke. Unfortunately research knows very little about these people because they don't usually get involved in research. And therapists know little about them because they are released from therapy quite quickly. From an exploratory perspective it's a shame that we lose contact with these people. The secret to recovery from stroke may reside with them. But it may not. How much somebody recovers is inversely correlated with how much brain damage they’ve endured. It’s simple: the less damage, the more fully you will recover. So folks who recover 100% often do not have that much damage.

Is there a common trait that the most successful stroke “come-backers” share? (author’s note: “come-backers” is a made up word. Hopefully it makes sense in this context.)

Coming back from stroke is relative. Consider “Sally” who had little deficit initially and now it's back 100%. Now consider “Sam” who couldn't walk and talk and came back to be able to walk and talk just okay.

Who has come back more? Sam has.

There are special stroke survivors that will come back long after clinicians have given up on further recovery. These folks who, in my book, I call quote “super survivors” fall into two broad categories.

1. The stroke survivor who is unwilling to give up some aspect of their life. This sort of super survivor recovers because they have to. They go above and beyond what any therapy could possibly offer them because whatever they love to do compels them.

2. The stroke survivor -- and this is going to sound weird -- who enjoys the process of recovery. They become addicted to the process. And they recover beyond expectation because their addiction drives recovery. These people are highly motivated in every aspect of their life. Stroke recovery is seen as yet another of life's challenges. This sort of stroke survivor is very, very rare.

Please describe the efficacy of some of the latest “hi-tech” devices available to stroke come-backers. Personally speaking, I have seen great results using the Bioness H200 device for the upper extremity. Are there other devices currently being used in the clinical setting that you think are worth trying?

There are many. Researchers around the country are looking at these technologies very closely. For instance, here is a conference that that is dedicated to this question. (Full disclosure: This conference is at the hospital where I work, and I am a speaker.)

I like the H200. It's weird with the hand. The entire arm is there almost exclusively to get the hand where it needs to go. So if you can get the hand back in the game, the arm will get better as well. So anything that will help you grasp/release is a good thing. Plus the H200 uses electrical stimulation. E-stim has the ability to do many things at once:

• build muscle that needs to be built

• relaxed muscle that needs to be relaxed

• help the brain rewire to relearn movement

• help the brain rewire to relearn sensation

I like the SaeboStretch-- a splint for the wrist and hand. There is much about splinting and that is not particularly effective and can be damaging. In particular, splints have the potential to damage small joints of the fingers. The SaeboStretch allows the wrist, hand and fingers to bend, but then it provides a low-load pressure towards extension. I have had Greg Pitts, as far as I'm concerned the preeminent expert on splinting in the country, tell me that he felt the SaeboStretch was a step in the right direction. This splint is not appropriate for every stroke survivor.

Another technology I like is EMG-based electrical stimulation. Biomove, NeuroMove and Mentamove are the three players. Each does essentially the same thing: The stroke survivor tries to move→ Even if they can't the machine picks up the attempt→ The machine "rewards" was electrical stimulation that facilitates up whatever movement the person was trying to do. In this way the machine dovetails all the great aspects of electrical stimulation with all the brain rewiring involved in repeated attempts. Brilliant.

For the lower extremity I like partial weight supported walking. This usually involves the LiteGait, but it does not have to; often an individual therapy gym will rig their own system. There are many other machines and gizmos that help stroke recovery. This list could go on and on, and I could talk about them forever. There is a pretty comprehensive discussion in my book of the available machines, and what they do.

Can a survivor reasonably expect get to the point where they don't have to worry about whether their muscles will work when asked to? How much improvement one can realistically expect to make years post-stroke? Jill Bolte-Taylor, for example, seems to be able to effortlessly move her affected side. Is this level of recovery common?

Dr. Taylor is a conundrum. Her book has a very dramatic photo of her scar, which was huge. What would have been much more informative would be a scan of her brain. How much brain damage did she have? She had a “bleed” (hemorrhagic) stroke. People don't realize this but the outcomes are actually better for hemorrhagic strokes. During hemorrhagic strokes, there is bleeding into the brain. Eventually the bleeding stops. The pressure on the brain wanes -- sometimes with the help of surgery. Sometimes, the symptoms of stroke resolve as the pressure on the brain decreases. In short, I am skeptical and I am not alone.

As far as how much someone can reasonably expect to recover… The answer resides some place between "not as good as you were" and "more than your doctor thought you would". What is the upper limit for you? There is no way to tell. There are very few stroke survivors who do everything needed to recover as fully as possible. There is always more progress that can be made.

Has hyperbaric oxygen therapy shown to have any efficacy in stroke rehab?

Hyperbaric oxygen therapy (HOT) will not bring back dead portions of the brain. The dead area becomes fluid-filled. You can pray, eat ambrosia, become a black belt, and have the Dalai Lama kiss your forehead and those neurons will never, ever come back.

HOT is one of those therapies that are worth keeping an eye on. We are left with research that says things like:

We dunno.

It may work…let’s hope it does!!

It works in rats!

And mice!!

My general sense is that HOT is much more effective if done early after stroke.

What are other countries showing for stem cell treatment results for stroke? On the science/research front, what holds the most promise for stroke survivors? What does the future hold in store for us?

The biomarkers (DNA) for a propensity toward stroke are beginning to be discovered. I'm sure medical science will continue on the preventative side and on emergency care side to make progress. But this does not help you if you've already had your stroke. For you, it is only hard work. We will make progress in rehabilitation research towards making the systems more effective and efficient, but rewiring the brain takes a ton of effort.

In terms of stem cell research, I am not an expert.

What are most doctors taught about stroke rehabilitation? Many seem to be of the opinion that not much progress can be made after 12 months, although current research proves otherwise. How can we, as patients, be confident that our docs are well informed?

Show me a neurologist or physiatrist who does not know that recovery can continue after a year and I'll show you someone who should lose their license.

In some ways doctors are forced by the Hippocratic Oath to lowball any estimate of recovery. If a doctor says you won't recover, and then you do, they can say “Great!” If a doctor says, "You can expect a great recovery” and you don't, they have done you harm.

In terms of having a doctor understand rehabilitation per se, it's probably not going to happen. The responsibility for rehabilitation is offloaded to therapists. The one exception to this may be physiatrists. However, although they may be very aware of various recovery options, they are not trained in rehabilitation techniques.

For those of us with limited insurance and/or access to therapists, do you have any good home therapy ideas? (i.e., exercises that can be done at home, without a PT)

Honestly, my suggestion is to get my book. It is the only resource I know of that gets at this concept of "do it yourself" recovery options. There are many, many, many things you can do on your own to recover. However it would be irresponsible for me to suggest anything for everyone. Safety issues are paramount to me not only because of the potential for injury, but for another important reason: injuries slow recovery.

Do you know of any alternative therapies that are worth trying? What advantages do things like acupuncture and massage offer to stroke patients?

If you want to know about alternative therapies, here is the only website you need: StrokeEngine, out of McGill University. (By the way, I don't know what it is about the Canadians but what they do as far as stroke research is unbelievably important.) This site gives you a great tool for figuring out what works and what does not work, according to research. This is what it says about acupuncture.

A common issue for stroke patients is chronic fatigue. Could you explain why this symptom is so common for stroke patients? What causes fatigue, and what are the best treatments for it?

As many as 70% of stroke survivors complain about fatigue. Many stroke survivors think that fatigue is the worst thing caused by their stroke. Stroke survivors should be four times as tired as everyone else, and I can prove it. Research shows that, when you compare survivors to age-matched “couch potatoes", the stroke survivors are in half as good cardiovascular health. Research also shows that most everything (i.e. walking, dressing, bathing etc.) takes twice as much energy after a stroke. Mathematically… (Twice as much energy needed) x (half as much energy available) = (I need a nap) The best thing you can do is stay in good cardiovascular and muscular shape. This means resistance training and cardio work. It may be counterintuitive, but exercise increases energy. Other things that will help increase energy levels include • Eating well • drinking plenty of water • sleeping well