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"

Does "X" aid recovery after stroke?

What works and what doesn't work to help recover after stroke? Research has revealed three broad categories:
1. It works
2. It doesn't work
3. We don't know yet

There is tons we don't know about stroke recovery. Stroke recovery is a million different puzzle pieces, with no picture on the front of the box to help out. But there are some resources to help answer some of the questions (at least)...

There is one website that answers, in layman's terms, what works and what doesn't work. Although the list is far from complete, it's a start. Thank you Canada!

 

stroke blog

stroke blogs

Video games+Tennis balls+ Anger=Recovery

A great article in the British newspaper The Telegraph. The article is by a stroke survivor who recovered well after an ischemic (block) stroke. He's hit on some very core ideas. Here are the most important points (comments in red are mine):

• "...nobody in the hospital was going to tell me how to get better ..."
• "I had to get out of hospital and cure myself."
• "...found that major strides had been made in America in treating stroke victims." (USA! USA! USA!)
• "Research there showed that damaged neural pathways could be re-routed" (Taub! Taub! Taub!)
• "The key was speed. After three or four weeks, the brain seemed to start a permanent shut-down on these pathways." Not true. But the guy is a "High Master" which I think is a principal. He can be forgiven.
• "I decided to bounce a tennis ball 2,000 times a day off the kitchen floor, missed catches not counting." Obsessive repetitive practice. I love it.
• "The first day it took four hours to reach the target." Ambitious repetitive practice.
• "...wrote out the alphabet, one line per letter, for two hours a day." Brilliant, I think the British say.
• "I vowed to (type) 10 pages a day, typing out my corrections on my latest book with one finger. The first 10 pages took three days." I love this guy.
• "I decided to recite the poems of Andrew Marvell for two hours a day..." Fighting aphasia by using something meaningful. This guy may have missed his calling: neuroscience.
• "I marched up and down the stripes on the lawn for two hours a day." Very Monty Python.
• To reestablish I coordination he used "a computer game flying a virtual F15 jet - or, in my case, crashing it thousands of times on the runway before finally landing it - after 40 hours' "flying" time." I think this is great. The idea of doing something fun to recover. When else in the middle of somebody's career are they allowed to play 40 hours of any game?
• "I came close to giving up the grind of rehab. But by choosing tasks like writing the alphabet or counting how many times I could walk down the lawn without crossing a stripe, I could monitor my own progress." Okay, two things: close to giving up. But not giving up. And second: being able to "monitor progress" is essential to recovery because if you don't monitor things closely how do you know if you are getting any better?
• "The difference between success and failure was...a deep anger that I was not offered more help to start with" You know, even Gandhi was not against anger. He just said you should use it wisely because it's very powerful. I'd say using anger to recover from stroke is using anger wisely. 
•  Gandhi on Anger  "I have learned through bitter experience the one supreme lesson to conserve my anger, and as heat conserved is transmuted into energy, even so our anger controlled can be transmuted into a power which can move the world." 

Bravo High Master of stroke recovery!

Find the article here.

Stroke Recovery. Are You Up for the Challenge?

Keeping it challenging...

Whatever is practiced, it must be challenging. In research, an 80-percent threshold is generally used. For instance, if a stroke survivor can successfully turn the pages in a magazine 80 percent of the time, the challenge can be increased by turning the pages of a newspaper. Since turning pages of newspaper requires increased excursion of the shoulder and elbow, the increased AROM will "trickle down" to easier tasks such as turning pages in books and magazines, card flipping and laundry folding.

What is usually done

Compensation (learning to "get by" with the "good" side). As "Dean's" puts it: Compensation being doing whatever is necessary to accomplish a goal. Recovery is using the muscles as intended to accomplish the same goal. Insurance wants you to use compensation whenever possible because it is faster and cheaper. 

Faster and cheaper

Faster and cheaper is good because its faster and cheaper. You could go to a State University. Or you could get a degree from a degree mill. You could make a a salad, but you could get the same amount of calories from a pop tart. But even as fast and cheap as they are, you'll still feel gypped.

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AFO: You can check out anytime you like, but can you ever leave?

I often get questions about ankle foot orthoses (AFOs), and how to get out of them. I'm not a big fan of AFOs because they encourage a sort of "learned nonuse." It's actually more like "learned disuse." (Learned disuse: You're not learning to not use the body part, but you learning to use body part incorrectly.) And keep in mind, every movement you make changes the way your brain is wired. So it's very easy to get used to an AFO. Let's put it this way:

It's easy to walk into an AFO. It's hard to walk out.

In any case, I get a lot of e-mails about this subject. Here's an example:
 
I wear a big brace on my right leg. I am paralyzed on the right side. I walk with a one-point cane. I walk with an open hinge (articulating) AFO.
 
They opened the hinges on my old brace several years ago. I walk around my apartment with the old one. But when I go out I use the bigger brace which isn't open at hinges.
 
I read on Deans' Stroke Musings that you recommend the Air Cast. Which one for stroke survivor do you like? They have a lot of different ones on their website.

Here's my answer:

First of all, the disclaimer:

(Warning: ENDING THE USE OF AN AFO CAN LEAD TO FALLS AND INJURIES.

Never discontinue the use of an orthotic without first consulting the appropriate health care provider. Then call your doctor. Then have your doc talk to any other providers as needed. Then discuss it some more. Thank you.)

Wear a brace on the ankle that satisfies two things:
1. Keeps you safe
2. Challenges* you

*Challenge: Walking naturally challenges you to lift your foot. If you can lift your foot up and down to stay safe (not trip) then you might consider questioning an orthotic that helps lift the foot.

Gradation would usually be something like this:
1. Rigid AFO
2. Articulating AFO (where the ankle joint moves just a little bit)
3. A stirrup (stabilizes both sides the ankle but allows the ankle to move up and down freely)
4. A high top shoe (like a basketball shoe)
5. Nothing

Often the manufacturers are the best people to ask specific questions. One of the advertisers on this blog X-STRAP (see link on the sidebar) has a variety of products. Some help bring the ankle up during gait, others support the ankle. The stirrup is usually associated with one particular company: AirCast.

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Know a good doc or therapist?

I get this all the time:

"How does one go about looking for a neurologist or physiatrist or therapist who is familiar with the practices outlined in your book?"

You'll notice a link on the right column. Or you can click here. Either way, if you live in the USA,  you'll find resources to help find aggressive healthcare providers for your recovery team.

Then  next questions is "Where do I find an OT or PT or speech therapist who knows?" You find a resource for that too.

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NEWS FLASH: There's No Way to Prepare For Life After Stroke

Surprise!

A recent study seems to sum up much of the whirlwind shock of life post stroke. I can't say it any better, so let me quote the authors:

There are 3 phases in the continuum from acute care to inpatient rehabilitation to home: 3 phases of this trajectory: 
1. the stroke crisis
2. expectations for recovery
3. the crisis of discharge
Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory. As caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing. Survivors are often underprepared to take on even the basic tasks to meet the patients' needs on discharge

Conclusion: Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let alone the crisis of discharge and all of the new responsibilities with which they must deal.

STROKE CAREGIVERS HANDBOOK (free)

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