Friday, June 22, 2018

You're welcome.

   (3rd ed.,      2nd ed.,     Malaysian,    1st ed.,   Japanese,  Korean.)

Since the 2nd edition (2012) of Stronger After Stroke, I've been advocating basing survivor's recovery plan on the phase of recovery they're in. So, you might do "Recovery option Y" with someone who is 2 months after the stroke. 

But if you did the same with someone 3 days after the stroke, you could make the infarct (brain killed by the stroke) worse. 

2 months, good; 3 days, bad.

There was only one problem: Nobody had defined the timing of the phases. I was able to do so after considerable research of textbooks, articles, and expert opinion. So far as I know, my book is the first and only resource that actually specifically delineates post-stroke phases. (The book outlines two ways; a "one size fits all timeline", and a more nuanced perspective based on the fact that survivors are never on the same timeline.) The best place to learn about the post-stroke phases is the book. But you can get a thumbnail here.

Its nice to know clinical research has caught up (where y'all been?). This article (2016)(It references and article on which I'm a coauthor jus' sayin') puts it this way: Rehabilitation interventions targeting at improving a stroke patients' performance should be implemented according to the phase of neurological recovery.

Even the word phases instead of the classic stages is telling, because that is the exact term Stronger used since the 1st edition-- 2008 (although I had not yet defined the phases). 

Stronger has changed the conversation, not only among survivors and caregivers (although motivated survivors were the first adopters). More recently researchers, and scientific organizations, have come aboard. This is the way I put it in the 3rd edition:

There has been another phenomenon surrounding this book as well: plagiarism. Either word for word plagiarism, or as a sort of reverse engineering of the whole sections of the book. Even the title has been ripped off. Since the first edition the Journal of the American Academy of Neurology, University of Tennessee Medical Center, and Emerson Hospital, and many others have all called articles in print or on line “Stronger After Stroke.” 

The fact that this book has a big footprint is a good thing because I have only one hope for this book. 

I hope it helps.

Monday, June 18, 2018

Recovery shouldn't cost an arm and a leg.

I'm pretty scandalized by some of the stuff on the market that claims to help survivors. I'll not name names, but I will say, stuff that costs a lot can usually be done cheaper. And cheaper is good (hasn't the stroke cost you enough??). 

When you're about to buy something expensive, ask yourself this: Can I do basically the same thing without all the flashing lights, cool colors, and fetching website? You can do it cheaper, almost always. And by almost always, I mean always.

(Warning: self promotion!)

I have something on the market. Its cheap (sorry: inexpensive) and it'll do the same basic stuff that the expensive stuff will do. 

Sunday, May 20, 2018

Stem Cell Treatment for Stroke: Not yet proven to work.

I'm not a big fan stem cell treatment to help stroke recovery. 

Not yet anyway.

I think part of it is, bluntly, the surgery.  A hole is drilled through the skull and that's the least invasive part of the procedure. Through that hole, a long needle is directed (multiple times) to the area around the stroke (infarct) in the brain. Remember: the stroke kills part of the brain. After the stroke, that dead area "cavitates" literally forms an empty cave in the brain. But it doesn't remain empty it fills with cerebral spinal fluid, the fluid that flows in, through, and around the brain. Nature hates a vacuum, the cavitation caused by the stroke is a vacuum, which is filled with cerebral spinal fluid. That fluid-filled area is dead, and no amount of stem cells, or any other sort of treatment is going to bring those dead brain cells (neurons) back. 
Stem cells treatment aims to overcome the loss by injecting stem cells in the survivor's brain, just outside of the area that was killed. Those cells will then turn into brain cells (neurons). That's the idea, and it does hold tremendous promise. And they will get it right, one day. But that day ain't yet. 

A study that is often cited as a seminal stem cell/ stroke study is entitled Clinical Outcomes of Transplanted Modified Bone Marrow–Derived Mesenchymal Stem Cells in Stroke. This study, done at Stanford and one other site, enrolled a total of 18 patients. The study has 3 problems: 
1. No control group. 
2. A Lot of people screened, few qualified. 
3. The data (for the primary movement test they used, at least) appears underwhelming.

No control group

Everyone got the treatment. Not great. Because with no control, everyone doing the data collection knew that everyone got the treatment. Uncontrolled studies like this put tremendous pressure on the folks who are measuring progress. If the scores go down, the whole study looks bad, which can affect future funding. So there's a tendency to want to "cheat" the score up, either consciously or unconsciously.

A Lot of people screened. 
Few qualified. 
379 stroke survivors were considered (screened). And out of those 379, only got 18 the qualified. Why was the qualification ratio so low? It's hard to say. According to the data supplement available with the study, they had a lot of "exclusion criteria" things that might keep people from the study. But, it is a pretty basic list of exclusions for a stroke study. So why were so many people turned down? Maybe they weren't. Maybe potential participants refused be be enrolled. Why would they refuse? Let me explain...

In research you have to do what's called "informed consent." You have to tell the participant (or the less modern term "subject") every aspect of every aspect of the study that pertains to that participant. This is a federal and international law. Why is it so important to inform participants? Let's put it this way... the Nazis did not inform Jewish (and other) prisoners of the experiments the prisoners would be involved in. And, really, nobody wants be a Nazi. 

But it wasn't just the Nazis. Consider the U.S. Public Health Service Syphilis Study at Tuskegee, a horror show that withheld life saving treatment from African American men so  "scientists" could track the "natural progression" of syphilis.  That didn't end until 1972!

The upshot were a whole bunch of very strict rules when it came to human participants. We now have to tell any potential participant EVERYTHING that may affect them in the study. This process the process of explaining everything, is called informed consent.

OK, back to stem cell research and why I think they had a lot of people run out of Stanford as fast as they could.

During informed consent, the participants were probably shown the needles that would go into their brain. They'd probably also were informed that there would be some brain damage as the needle tore through brain tissue on the way to the target. 

The data appears underwhelming.
This study had one primary way of measuring movement: A test called the Fugl-Meyer. I did this test for 12 years straight, every day, often multiple times a day. I think I've done it more than anyone in the Galaxy.

Bottom line, there wasn't much of a change. Just over 11 points. Thats 11 points out of a possible 88. This is a relatively modest increase. It is true, modest increases may make a huge difference. But +12 points can be potentially garnered by being able to straighten the elbow a little more.

But the authors ride it for all its worth. This is unfortunate because scientists have a hard enough time explaining their science to the world without the added burden of  exaggeration.

“We did not expect to see significant recovery. We were quite startled by the remarkable recovery some of the patients showed.” I could get more points than that using intensive repetitive practice-- and without the pesky brain needles. And please! Stay away from the term significant! Significant means one thing in the world of scientific statistics, but to laymen reading your interview it means "a lot".

“She was what we call one of our miracle patients." There were only had 18 "patients." (sic) How many miracles were there? 

We all want something that works. But stem cell therapy isn't there yet. What is weird is that this study does have important findings that move the science forward. Establishing safety across multiple parameters (as this study did) is important. 

Please note that stem cell therapy for stroke recovery is not available in the US or Europe, except in clinical trials. However, I know a survivor who had a series of stem cell treatments for his stroke. This was over the years  2013- 2015 in Thailand and China. You can find info about this option here:

This survivor reports that he thinks the treatment cost ~16k USD.

Monday, April 9, 2018

Reduce Risk of Stroke: Vitamins and Coffee!

Two interesting articles outlining studies:

1.  Stroke is an indicator of damage to blood vessels. Vit D3 may reverse that damage.

2. More coffee drinking probably reduces risk of  stroke.

Tuesday, March 6, 2018

Stroke is a hellish cat...

Stroke is a hellish cat gnawing its way through different disparate parts of the brain. Let's see how!!

The average stroke kills less than 3% of the total number of neurons in the brain. And that is way worse than it sounds. That small area of infarct insidiously exports itself to all reaches of the brain.

The first part of this process happens when the area surrounding the dead area (the penumbra) is "dragged into" the damaged part of the brain. And this surrounding area is not usually re-incorporated into the brains function. Through a process known as "learned nonuse," a healthcare system hell-bent (a lot of hell in this post sorry) – not on recovery – but rather on getting survivors to no longer be a burden on the healthcare system. And the word "burden" is euphemistic – it means cash.

Because the focus is on getting rid of the patient, and not recovery, the area surrounding the stroke is not used. And it is usually not used for the rest of the person's life. But the insidious nature is of stroke is not yet fully realized.

Many different areas of the brain outside of the dead zone, and the penumbra, are dragged into the mayhem. A process known as diaschisis takes over, and exports the damage to outpost throughout the brain. Why does this happen? Because the entire brain is interconnected, when one system goes down (The part of the brain killed by the stroke) and all the other areas connected to that dead zone also become either less functional or non-functional. Look at it this way: the classic neuroscience way of putting the way the brain operates is this: "neurons that fire together wired together." That means one part of the brain, if it communicates with a completely different part of the brain, we'll both benefit. If one of those area dies (as in stroke) the undamaged other area will also become less functional. But diaschisis is not the end of the story. The insidious nature the rambling and insidious nature of stroke marches on…

The next issue has to do with the strokes affect on the survivors life. After their stroke, survivors will typically become less socially engaged, less employable, less mobile, etc. The bad news is that the brain is designed to be socially engaged, engaged in productive activity, and to explore new things. The upshot of a less engaged brain is this: the entire brain goes through a literal "pruning". In fact, neuroscientists call this process a "pruning of the dendritic arbor." Throughout the brain neurons no longer use for the daily skills they once were, disengage from each other. In a sort of bad neuroplasticity, the brain becomes less capable. But, you guessed it, we're not done yet…

The final, and one of the worst and most insidious effects of the stroke is this: through a series of direct communication and chemical reactions, the "reptilian brain" is dragged into the evil march of stroke. Areas like the hippocampus and limbic system – areas that are responsible for emotions, and mood regulation, are also wracked by the stroke.

It is heartening, and it certainly is a point of view that I have promoted over the years, that the average stroke is really small. And the stroke sits in a highly redundant, and highly changeable (plastic) environment. All of that seems like good news. You have a small area of death, surrounded by a large family of neurons willing to take over for those that are killed by the stroke.

But the more I learn about stroke the more I understand that the stroke is not just the stroke. Echos of that small area reverberate. The ripple effect of that small area wraps its tentacles around-- and through-- the entire brain. 

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