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

Gifts for Stroke Survivors: A list compiled with the help of the stellar Young Stroke Survivors Facebook group!

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The most important gift you can give a survivor is your time.  Often months and years later, the thing survivors remember

most is the company they received. A phone call, a visit, a text.... seems so simple but not to the stroke survivor whose mobility is limited. Social interactions will also help the survivor recover.

For survivors with children, organizing play dates for their kids can be a big help!

Gift that survivors often cherish include

• The gift of Food and Drink!
• Chocolates or any other delicious food. However, be aware that stroke can often affect the ability to swallow so yummy food will be a tease!
• Survivors often worry about their family eating well. Friends can organize and help by over dinner for my husband/ wife and kids every night.   
• Clothes
  
  • New comfy pajamas
  • Comfortable snugly sweat pants (elastic waist!)
  • Shoelaces that you don't have to tie like the Yankz! Sure Lace System
  • Slippers
    
  • baseball cap to wear (to cover unwashed hair)
  • sweats with the person's favorite team logo
  • Comfy therapy clothes
  The gift of help
  Survivors will certainly appreciate the little services you can provide. These include...
  
  • A manicure/pedicure (A trip to the hair salon for a cut, color and pedi is often a favorite post-stroke gift. Survivors often feel so much better after a trip to the salon)
  • Massage of the affected with a hand/body cream
  • Hair styling
  • Clean clothes
   Useful gifts
  • A journal for all the millions of thoughts that buzz around the survivor's head... great stress management
  • Stuffed animals, especially ones that remind the survivor of their own pets
  • A "grabber" to pull tray over, pick up the phone, or pull the tv over. Survivors are sometime left alone for extended periods.
  • Video games
  • Dry shampoo and leave in conditioner
  • a new toothbrush
  • Electric shaver for face or legs. Survivors are often afraid to use a razor
  • Flowers
  • A fluffy comforter
  • Books and for survivors with trouble reading, books on tape. Or, read to the survivor!
  • Photos of loved ones. A photo album with lots of pictures, where they were taken etc. (Survivors often forgot a lot!) Positive sayings in there as well as written prayers and messages from other friends
  • An attractive medical ID bracelet that fits with the person's personality (jewelry-style, paracord, beaded, Velcro (like Road ID).
  Music
  Music gets its own category because music helps recovery, especially during the acute phase (~the first 7 days after stroke)

Flaccid or spastic; what strategy works best?

Here's a recently email question I got....

Hi there,

I recently read your article about spasticity located here. 

The article seems to focus on therapies and treatments for patients who still have some motor control over muscles -- i.e. the brain is still in the loop.  Would the same treatments apply to a patient with little or no muscle control over muscles. i.e. muscles remain mostly flaccid post stroke.  Or is there little in the way of physical therapy that can be applied in this situation?

Specific patient is currently being treated with ativan and tizanidine, with the resulting effect that their ability to remain active is significantly deteriorated due to drowsiness.

Thanks,
(Name withheld)

Muscles hate to be overstretched, so if the brain is not online (as is often true after stroke) the muscles rely on the spinal cord to take over the job of protecting the muscles from being overstretched. But the spinal cord is a dumb brain. It can only tell muscles to tighten. The bottom line is: once the spinal cord takes over you end up with tight spastic muscles.

There is emerging research that suggests that if you can reestablish brain control over spastic muscles, the spinal cord will get it out of the way, and spasticity will decline.

So, as you can see the question, above, is a bit confusing because the writer asks, "Will the same treatments apply… in muscles that remained mostly flaccid post stroke?"

When the muscle is flaccid, there is no brain control over the muscle. If that's the case early in recovery (the first few weeks) you may find that the survivor becomes spastic or regains voluntary movement through the arc of recovery. But if the survivor is flaccid for more than a few weeks, the only thing that may have potential is electrical stimulation.  

(Note: because tizanidine -trade name Zanaflex- in particular is used specifically for spasticity, the person you are talking about is spastic. In that case they would have voluntary control into flexion - i.e. if you passively stretch the fingers to "open" the hand, they can squeeze your hand. If this is true, then I'd follow this strategy. It is a common misconception that everyone who is spastic has no control over their muscles. If they can squeeze, have them squeeze over and over and over and over... Tough to do when "their ability to remain active is significantly deteriorated due to drowsiness.")

If you want to see all this blog's entries on spasticity click here.