Falls. Bad.

Here is your challenge: 

In the comments section, write everything that this survivor could do better in order to get up the stairs more safely. 

We all know that falls are bad. 

Falls can kill you. For survivors, falls are especially bad. Stroke affects balance, coordination, strength, and any number of other things that can lead to an increased risk of falls. On top of that, survivors tend to fall towards their affected side. In the affected side tends to be more osteoporotic. So have at it. This is good place to start as anywhere. What is this gentleman doing wrong? How do you do differently? What can you suggest?

Young Survivors: You may look great AND struggle.

A couple of bits of bad news for younger stroke survivors. First, a look at this video (on the right side of the site).

My interpretation: Young people who have insomnia are at a much higher risk of stroke. And by much higher I mean more than 8 times the risk. 

That's valuable information. But. There's a not-so-subtle intimation in this video that a lot of young stroke survivors complain about. Namely, that young people are out doing drugs (and other bad things) which keep them awake. 

The second bit of bad news

There's a new article out with a not-so-subtle name "Poor Long-Term Functional Outcome After Stroke Among Adults Aged 18 to 50 Years." Its bottom lines may come as some surprise to clinicians: many young survivors stroke survivors struggle with everyday tasks. 

After 10 years, 1 in 8 patients (12.9%) was not able to function independently. 

When interviewed the author's seem to suggest that, young survivors often don't show severe outward signs of problems related to stroke. For instance, they would struggle much less with walking than older survivor. But that does not mean that these everyday tasks are not problems. One author Frank-Erik de Leeuw, Ph.D., put it this way "Even if patients seem relatively well recovered with respect to motor function, there may still be immense 'invisible' damage that leads to loss of independence." 

I've heard this before from young survivors. People will come up to then say "You look great!" And they think to themselves, "I don't feel great." 

 One interesting note: Almost all the popular press has reported that this article suggests that "one-third" of young stroke survivors are having problems. I've read the article. It's one in eight. I'm not great at math. I'm pretty sure that's not one third.

Institute of Neurological Recovery. B-level scam.

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Anyone looking online for a magic bullet to help reverse stroke will end up with the same group of scams. There's the neuroaid scam. The wheatgrass scam. The Neuro-IFRAH scam.

There's two kinds of "stroke recovery" scams:

A-level scams: I sell you a "treatment." Does it work? Who cares!? I'm Selling! A-level scams tend to not last very long. If it doesn't work and it's harmless, the public will soon lose interest. And if the "treatment" hurts people the scammer will be sued into oblivion.

B-level scams: I sell you a "treatment." I really really really really believe it works. But I have no legit whatchamacallit... science... science behind the "treatment." How do I prove it works? A video! And a lot of stories from a lot of people that really like it a lot! 

What's so fun about all the B-level scams is that they're so easy to investigate. Really, this inter-web thing is great!

(I Think B-level scammers think we don't have access to the interweb!)

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Institute of Neurological Recovery 

Up until now my favorite scam has been neuroaid. And not just because my blog entry on neuroaid is the most read blog entry in SAS-blog evah! No, neuroaid was my fav because their conflict of interest was so obvious (the people on their scientific advisory board were also doing the research).

But my new fav is the Institute of Neurological Recovery. Although I feel a bit lame here because so many before me have pointed this scam out. Here as well. Hilarious radio commercial here.

Basically the scam is, you come in-- even years past your stroke-- they give you a shot (1st shot ~ $6,800- info from a recent patient) and you're better (video here) (another here). And they have research. Check out their "research" page. See the first 3 links? They all point to articles whose lead author is one Dr. Tobinick.

Dr. Tobinick owns the Institute of Neurological Recovery. Done!

Where's the challenge in that? They're not even trying! They even suck at obfuscation! Does the injection work? I don't know! But neither do they!

BTW, their "big" study involved looking at charts of patients and, based on no standardized tests said, "Yeah, all these people got better."

In some ways, B-level scams are worse. B-level scammers are often clinicians, and clinicians should treat using things that have scientific evidence specific to that treatment. Occasionally there are treatments that are missed by science, but shortly there reaches this critical mass of interest in the treatment. Once that critical mass is met, researchers get very interested, and they investigate. So, a good indication that a scam is a scam is that only the folks involved in the scam have investigated. So the scam is never investigated with anything close to science because, they're scammers, not scientists.

B-level scammers posture as scientists. But they're not scientist. The first thing a scientist would do when they say "my thing works" is to recuse themselves from the testing. It's called blinding. It's science 101. You want to make sure whoever is doing the testing is unaware which group (control/expiremental/different dosages, etc etc) the participants are in. Otherwise there's a clear conflict of interest. Otherwise, they'll say "My thing works great! I just tested my thing! And my thing works great!"

P.S. The Institute of Neurological Recovery has tried this before, with Alzheimers. Here is an article on it. My fav line? "Edward Tobinick ... has been active in laser hair removal prior to developing an interest in the use of etanercept for CNS indications. The hair removal clinic at which Tobinick is medical director, the Institute of Laser Medicine, is in the same building as the Institute for Neurological Research..."

EXTRY! PT HELPS SURVIVORS RECOVER!

So here is a bit of good news: PT helps survivors recover. Which you woulda thought had already been proven, but here's some funny: Very little has been proven with rehab vis-à-vis stroke. And then there is the little problem of a pretty long tradition of clinicians in rehab deeply believing in therapies that, once examined in the light of well run research, looked very meh. And speaking of such...

This article reviewing the effectiveness of PT on stroke recovery is a gem (and not just because it references more than 10 articles on which I'm a co-author!). It doesn't just comment broadly on PT post-stroke, it nuances it. Some things work, some things don't. Guess what goes in the "doesn't work bin?" Guess. Here's a hint, this blog has said this for a long time... Like here. And here. Thats right...

NDT!

As the authors put it:

NDT has an unfavorable effect on length of stay, motor function (synergy), muscle strength of the arm, walking speed, spatiotemporal gait pattern functions like stride length, muscle tone, range of motion, balance, walking ability, arm-hand activities, and basic ADL. Insufficient evidence was found for NDT benefiting muscle strength of the leg, grip strength, muscle tone, brain activity, walking ability. 

But. The overall message of this article bodes well for PT and for survivors. Namely: There is strong evidence for PT interventions... in all phases poststroke.

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