Stroke = Dog Tired

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 counter-intuitive, but exercise increases energy. Other things that will help increase energy levels include 

• Eating well 

• drinking plenty of water 

• sleeping well

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What do doctors know?

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.

Of course, MDs can be a driving force towards recovery. Each clinician (MD, therapist) has a unique role to play. Some MDs are not very well versed in all things recovery. If you want to find aggressive MDs and therapists, click this link >>> 

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Reading to Recover

Ever want trip up a therapist? Ask this question: What's the latest stroke recovery research say? The answers will be, politely, inconsistent. Some therapists actually know a lot. Others haven't read their professional journals, ever. 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?


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Simple. Brain. Recovery. Game.

Stroke recovery involves 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.

And what does it take? Repetitive practice.

Repetitive practice is boring.
So try spicing up with a video game yay!

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When all you have is a hammer everything looks like a nail

I got an email from an author the other day. He’s written a book about stroke recovery. He said that he’d heard that I did “...not like presenting other peoples' work as helpful for stroke survivors." I explained to him my position this way:

I work in rehab research; have since the 90's. All of that research has been stroke-specific. One of the things I've learned is that clinicians had made the mistake over and over and over (for decades) of buying into completely ineffective treatment options. They did this for 2 reasons:

1. The treatment had/has a charismatic leader
2. Clinicians in rehab don't typically read research.

So even if large studies came out and say "Those things don't work" clinicians just kept/keep on doing (and promoting, and selling books about, and teaching) them. And then there are categories of "treatments" that have no research (standardized, controlled trials) at all supporting them. So in my talks (I do many) I start by saying "Most of what has been used for stroke recovery is ineffective or untested. Here's what we think we know…” And most clinitians get it. They're pros. They want better tools.

I actually promote (when appropriate) a bunch of people and ideas. But anything endorsed is evidenced based and what that means is very specific: Has the treatment option reached meta-analysis and did that meta-analysis show efficacy? If it has and it does I'm all in.

If not, I let people know.

What I find from survivors is that they want us to hash this stuff out. They want us to have these discussions and not just stick with the same old because it’s what we feel comfortable.

E-Stim. If dude can do it, so can you.

Electrical stimulation after stroke is the single most important modality there is for recovery. A modality is...application of something therapeutic like a hot pack or cold gel or...e-stim. Part of the reason e-stim is so important is that it does so many different things. 

Drunk smoking guys use e-stim for fun!

But here's some funny: Some OTs (occupational therapists) cannot do e-stim clinically. Why? It turns out that in some States OTs have to get a special post-secondary education certification to do it. Which was always weird to me. You know that ad where you can use the stim "ab-exerciser" that’s supposed to give you ripped abs while you lounge around because the e-stim builds muscle? And who’s ordering that? Some drunk guy at 2 in the morning. HE can do it, but OTs can't? Weird. 

E-stim does so much that its lack of use clinically for survivors has flummoxed me for years. The reasons given for not doing it clinically tend to be of the "Its too complex to set up" variety. "It’s too expensive." is another thing. Some e-stim machine are expensive. But even the cheap gizmos can do the job. Most of the reason it’s  not done is because no one wants to figure out the machine.

Jesse says: 
E-stim is not just for 
drunk folks and kids!

Enter my 10 year old son, Jesse. I have a lot of e-stim machines stored in my basement. I've accumulated them over time in various ways. And boys will be boys and boys (and their friends) will go into the basement and put electrodes all over themselves and turn up the stim and see what pops. And they figure the machine out. Because e-stim works like this: Put on the electrodes (they stick to your skin) and turn up the stim. And see what happens. And that’s it.

And yet many clinicians shy away from e-stim. They shy away from something that can do everything from help recovery of sensation, to stretching to building muscle to starting the neuroplastic process. So talk to 'em. And if they have any questions, tell 'em to email me.

Note: There are some serious contraindications to doing estim in some folks. i.e., they can mess up pacemakers and other electronic devices. So always ask your doc first!

The perfect time to have a stroke?

I'd argue that the "best" age to have a stroke is 27. The entire brain is fully wired (the frontal lobe wires in the 26th year). You're young enough to undertake the rigors of recovery (recovery is statistically better the younger you are). But you're old enough to have your brain wired "normally" (recovery in children is often a mixed bag because the brain is not yet fully developed).

But what is the best day to have a stroke? Any day but the weekend. Turns out the having a stroke on the w/e means lower quality care than during the week. 

Will and imagination

I do a ton of talks on stroke recovery. I come from the world of research. So my perspective is a bit different to the rehab clinicians I talk to. I do my best to ease them into the world of research. I explain where they can find leading edge stroke rehab info for themselves. I describe where we are in researching stroke recovery (not very far I’m afraid). I explain how the stuff from research can be used with their patients.

And there’s the rub. Therapists and other folks in rehab sometimes have a bit of difficulty imagining how to transfer the research to their practice.

"I'm in acute care (or skilled nursing, or an outpatient clinic, or in home care, or in long term care, etc.).  I can't implement this stuff. It takes too much time (or we don't have the equipment, or don't know how to bill for it, or nursing won't follow through, etc.). This stuff can't be used on my patients because they're not motivated enough (or have too many other medical problems, or are too "low level", or are too old, etc.)"

The core concepts of relearning how to move after stroke are simple. These concepts don’t have to be done clinically the way they’re done in research. In fact, they are often more effective in the clinic. They may be more effective because clinicians can change the treatment to fit individual survivors.  Research involves a one-size-fits-all implementation. Therapists can add and subtract, slow down and speed up, skip or add more treatments.  In research all those screw up consistency.

Some therapists have no problem with implementing this stuff. Some go well beyond what I suggest. For instance, they may dovetail suggested treatment options in a mix that is beyond anything researched. (Note to clinicians who do this: make sure you use valid and reliable outcome measures to prove to yourself that these things work.)

Whats the difference between those who can and those who can't?

Will and imagination.

A test that predicts when survivors may die

A test of mental ability after stroke can predict how long a survivor will live (Find the study here.)

Poor performance on these tests can predict mortality in stroke survivors, a full decade before death. Previous tests have shown a link between heart disease and dementia after stroke and mortality. This is the first to show small amounts of cognitive decline correlating to mortality.

Here are the tests that they used.

The longer it takes to do the tests the more "impaired psychomotor speed." Participants that were the slowest third of the group for both tests were more likely to die.

In this study, the mean result for TMT A was 47 seconds and for TMT B, 119 seconds.

Also a decline in mental function before a stroke can be an indicator of an impending stroke.

Good luck!

What else can I do?

There is an inaccuracy in a recent Amazon review of Stronger After Stroke that I must correct... 

BULL

Here is part of the review:

"I have not read the book, but one of the reasons my father in law suffered a stroke was because he's blood pressure was too high due to alcohol consumption. In this book it says it's ok to have 4 oz of alcohol a day so my father in law has started drinking again. So I'm hoping I didn't start up the drinking with him by giving him this book."

Actually, there is no mention of alcohol at all, any place in the book. But the author of the review hadn't read the book, so how would they know?

Here's a part of the story that may be interesting only to me: I contacted Amazon, asking them to consider taking the review down. Amazon will only take down a review "If it in violation of one of Amazon's posted guidelines." One of posted guidelines is: "Customer reviews should be relevant to the product in question." The reviewer is clearly reviewing hearsay, not a book. In any case, I was amazed that Amazon has declined to take the review down. I'm a huge fan of Amazon! I'm disappointed.

I'm not an advocate of drinking after stroke.

Thank you.S

Demanding Repetition

I do a lot of talks on stroke recovery. From Alaska to Florida, from New Hampshire to San Diego I'm all over the place all the time. I do these talks  for therapists; OT, PT, speech. Survivors and their caregivers show up as well. Also, medical device people, nurses, physiatrists, etc. So I get to talk to a lot of people about stroke. I always do the best I can to make things as simple as possible. Here is a really simple but profound way to look at stroke recovery...

Repetitive.
Demanding.

That's it. Repetitive practice of the movement or sound or walking or skill or whatever. Of course repetitive practice has the habit of doing two things: 1) causing people to repeat things that they can do pretty well, over and over. 2) Plateau. People plateau (don't get any better) because they keep doing what they can do pretty well over and over.

That's where demanding comes in. Repeatedly practice the skill in a way that "nips at the edges" of your current ability.

Repetitive without demanding and progress will slow to a crawl.
Demanding without enough repetition will halt progress."the stroke blog" "The stroke recovery blog"

Try: to attempt to do or accomplish

Here is clarification of a paragraph in the previous post:

Of course, there's a fine line between the exercise and movement needed to relearn movement. But the emphasis on trying to build muscle is as mistaken as changing the oil in a car with no gas: Its a good thing, but hardly the main issue.

This difference between exercise and repetitive practice (movement needed to relearn movement) may seem like a distinction without a difference. In fact, both build muscle and both drive plastic changes in the brain. The distinction is in the focus. Repetitive practice paradigms focus on driving changes in the motor and sensory cortices of the brain, not specifically in changes in muscle strength. Sure, muscles will build. But focusing on strengthening is like climbing a ladder to the top only to find the ladder is leaning against the wrong building. Stroke is brain damage. And, unlike most other forms of acquired brain injury, stroke involves just one part of the brain. So if a survivor is, say, 2 years post-stroke and they can’t open their hand and then, later they can, that is not a reflection of muscular strength. It is a clear indication of a change in the brain. The muscles have been there all along. Muscle strengthening is the easy part. 

Clinicians often sweat the fact that survivors have limited energy for therapy. But does it need to be very strenuous to be beneficial? No! The ability to open the hand (or lift the foot or straighten the elbow or move the mouth) can be done while sitting in a comfy chair. Each attempt should be focused and deliberate. The very ends of the movement should be the point of focus. Each attest is measured as a success if it is just beyond the previous attempt.

An Open Letter to "Payers" Regarding Stroke recovery: You're Doing it Wrong

Dear Insurance Providers, 

I'm sure you want to help stroke survivors. A survivor that is home in the pursuit of happiness is healthier and cheaper. 

But there's a problem... The systems that insurance companies and Medicare ("payers") have developed is a hodgepodge based on a patchwork of incorrect assumptions and old science.

The following are some recommendations to better align insurance regulations with the aspirations of survivors.

1. Make immediate screening for TPA mandatory, even in the most rural hospitals.

2. Where a survivor goes for therapy matters. Unfortunately, the decision determining where the lion's share of recovery will take place is made within the first few days post-stroke— way too soon. Given the emerging healing in the brain acutely there is simply no way for any clinician to predict where that survivor is going to be, functionally, in a week, let alone a month – or several months out. 

There are some who believe that future movement can be predicted within the first week post stroke. However, those predictions are accurate only because they force a self-fulfilling prophecy. Based on the algorithmic prognosis, survivors are put in less than optimal rehabilitation settings. Thus, they do not reach the highest level of recovery  providing justification for the original in-hospital prediction.

Instead of forcing therapists to make this decision in the first few days, wait until day 14. By then the resolution of the penumbra will have revealed true future potential-- at least in ischemic strokes. Hemorrhagic strokes take even longer to predict.

3.  Clinicians are forced to discharge survivors once they have plateaued. However, given the massive potential brain plasticity, it is now known that plateau is a slowing, not an ending, of recovery. Given the potential for recovery into the chronic phase of stroke, complete disengagement from therapy is a mistake. I would strongly suggest maintenance visits with therapist, introduction to well-trained stroke specific exercises at local gyms and workout facilities, as well as distance (i.e. phone calls) with therapist.

Sincerely,

Peter G. Levine

Stinking after droke

As stated before, I'm not a big fan of drinking after stroke. I found some interesting statements here about the issue:

The effects of alcohol may put you at further risk after a stroke, and you will need to review your drinking and consider cutting down, especially if you were a heavy drinker beforehand.There are a number of factors you need to consider – talk to your GP for more advice: 

• Following a stroke you may be more vulnerable to alcohol and its negative effects such as sleep disturbance, poor balance and impaired speech. 
• Alcohol may worsen mood swings and depression, which are common after a stroke. It may affect your memory and thinking, making you forgetful and less able to make sound judgements. 
• If you are out after dark, you should remember that alcohol can reduce night vision by 25 per cent and slow down reaction times by 10-30 per cent. 
• Alcohol acts on the kidneys, creating excessive amounts of urine, which may make you dehydrated. If you are suffering from headaches, the dehydrating effect of alcohol is likely to make them worse. 
• Alcoholic drinks are high in calories that have no nutritional value. If you are less active than before your stroke, you will need to reduce your calorie intake (especially these ‘empty’ calories) to avoid becoming overweight. Alcohol may make it harder for your body to absorb essential nutrients such as vitamin B1 and calcium. If you are less active and not absorbing calcium properly, your bones may become weakened. 
• Drinking alcohol may be harmful when taking medicines that are sometimes needed after a stroke. Ask your GP or pharmacist about whether you may drink at all and if so, what the sensible limits are for you. You may be advised to stop drinking for the first month or two after starting a new medicine so that your body can get used to its effects. 
• If you are taking blood-thinning medications such as warfarin, it may be important to establish a routine of what you eat and drink. If you do drink you should ask at your anticoagulant clinic about your alcohol intake and how much you can safely drink on a regular basis.

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Therapists are not like oncologists.

Therapists are not like oncologists.

Imagine an oncologist who has no idea what the latest treatment is. Imagine now that they are trying to cover their butts. "You have cancer, but I have something that works in my patients." "Something that works in your patients?" Even in your distress something seems odd about that statement. "Does it work in all patients or just in yours?" Its one of those questions you think twice about asking an MD because it smacks of sarcasm and hints a possible incompetence. But it is exactly the most rational question.

Of course, of an oncologist you'd not have to ask this question because oncologists are required by law to use the most effective treatment. If they do not do the latest and greatest they can get sued. Into oblivion.

People die of cancer. People generally don't die of bad therapy.

Now imagine your therapists says this... "You've had a stroke but I have something that works in my patients." "Does it work in all patients or just in yours?" There are 2 possible answers:

1. I have a lot of clinical experience, and in my experience it works.

2. Actually, its not ME saying it works in MY patients, but the research says it works in patients with your sequalae (symptoms).

I feel safer with #2.

#1 could have an unspoken "...but I've never really collected data or analyzed data or compared it to a control group or blinded myself during your measurement, or done anything else that science does to make sure that my data is "clean"."

"Does it work in all patients or just in yours?" is really the question, "Is there research that says it works?"

Encourage therapists to have a look at their diploma. It'll say, clear as day "Associate's of applied SCIENCE," "Bachelors of SCIENCE," "Masters of SCIENCE," and so on. The the notion that they base treatment solely on clinical experience is dangerous. One of the biggest determinants of recovery is the therapist sitting in front of you. Do yourself a favor, and do them a favor: Call them on the evidence.