"𝗜 𝗳𝗮𝗹𝗹 𝗼𝗳𝘁𝗲𝗻. 𝗪𝗵𝗮𝘁 𝗱𝗼 𝗜 𝗱𝗼?"

Bottom line: You can make your balance better, and have less falls (and have less fear of falling). But it takes a lot of work, because of course it does. And, don't work on the wrong thing. OK, New Bottom Line: It's hard work, and a fundamental mistake (BOOMER JOKE ALERT) may trip you up. 

Is it a balance problem?

The outside world sees the cause for unsteady walking as a balance problem. If somebody falls they go to therapy for balance training, because they lost their balance. 

But, you may say, I don't have bad balance. I know what upright is, but my muscles won't fire when I tell them to, so I fall! It's a muscle problem, not a balance problem. If that's the way you look at it, you're not wrong.

I'm going to say something pretty radical here, so make sure you check with the appropriate healthcare worker before buying into this... 

You may not have a balance problem. 

Balance problems come form a loss or deficit of one or more of the following:

1. Proprioception: the ability to imagine where your body is in space without looking at it. 
2. Eyesight: the ability to find "true north" and/or where the horizon is.
3. Vestibular sense:  the ability to sense movement, and know where your head and body are in space. When the vestibular system is not working it's the classic inner ear problem:  Meniere's disease, dizziness, vertigo.

Proprioception, Eyesight, Vestibular sense. Let's just call them: PEV

It's only a balance problem if you have a problem with one or more of PEV.

And a lot of survivors have problems with PEV, no doubt. But lets say you're a survivor that does not have these problems, why do clinicians and everybody else say you have balance problems? Because: From the outside it looks like you have poor balance. And you do lose your balance. So how is that not balance problem? In any case, you might say: Who cares what the cause is? Even if there's another cause, its a distinction without a difference. I'm still a fall risk.

It's important to know what is causing the "balance problems" because you don't want to bark up the wrong tree. And, it is true, there may be multiple trees. What's another tree? Muscles.

You may have fine PEV (unless you drink a lot, it which case you need another kind of rehab:) So its something else: Muscles. Maybe you know damned well where you are and what you need to do to retain your balance. But the stroke stops you from moving your muscles correctly to "catch" yourself. 

But again, so what? Well, here's the thing. PEV stuff has a "neoplastic model"—a way of changing the brain to lesson or fix the problem. And if you have problems with them, then focus on PEV.

But if you don't have balance problems related to PEV, but have muscles that won't cooperate, then the best recovery option is repetitive practice. 

I've been in stroke-specific research for a long time. And one of my fav quotes in clinical research is also one of the most obvious and most hilarious: Task-specific gait training improves gait post-stroke. (EBRSR)

Walking makes walking better. Hmmmm. Whoda thunk?

But what if you can't practice walking because you're afraid you'll fall? Here's some ideas (ASK A QUALIFIED HEALTHCARE WORKER ABOUT THESE SUGGESTIONS!)

Treadmills. Treadmills are never ending parallel bars. They expand the size of the gym with a very small footprint. Put a mirror in front of them and they become instantaneous feedback machines. They also provide an essential bit of quantifiable data: speed of gait. 

Recumbent, 4-limb bilateral trainer. Recumbent trainers do not have to break the bank. Inexpensive ones can be found for $350 or so. These are essential not only as a pre-ambulation device, but also because they develop cardiovascular and muscular strength. The thing is, fatigue leads to falls. And if your walking has been compromised by stroke, walking takes twice as much muscular and cardio strength as it takes someone who walks "normally."  "banking" both muscle and cardio strength are essential to doing the hard work of recovery.

Some sort of harnessing system for gait training. Stroke recovery works best with over-challenge. Challenge drives neuroplasticity and neuroplasticity drives recovery. It's impossible to over challenge with standard gait training (a gait belt and guarding). The fear of falling on the part of the survivor and the therapist runs headlong into the challenge that needs to be realized. If the survivor is harnessed, falls are impossible and challenge flourishes. Partial weight sported walking is but one option that requires harnessing. Speed intensive treadmill training (also known as speed dependent treadmill training) has shown stellar efficacy in increasing speed of gait. And speed is good. The usual suspect in this category is the LiteGait. Over ground systems may be a better option for some gyms. NeuroGym, Biodex and other companies make over ground systems that provide an inexpensive harnessing option.

One last important note:

Falls very often happen in four situations:

• Starting walking

• Stopping walking

• Turning

• Uneven surfaces

So if you find yourself in one of those four situations (and it may happen hundreds of times a day) stop, consider, and then go.

You've had a 𝙢𝙖𝙨𝙨𝙞𝙫𝙚 stroke? Hold her beer!

Michelle Mack has been a celebrity among brain-obsessed ubernerds (like me hello ¯\_(ツ)_/¯) for two decades. She had her stroke before she was born. Not only that, but her stroke obliterated an entire hemisphere (and more) of her brain. In a case of she didn't know that she wasn't supposed to so she went ahead and did it anyway, Michelle has done quite well with a stroke so large it would have killed anyone else. 

A while ago I got in touch with Michelle Mack's mom, Carol Mack. Here's what I found out...

A Misdiagnosed Savant

Michelle was born in 1973 (47 as of 2020). Carol could tell something was wrong when Michelle was a baby: she couldn't roll over—a skill that is usually developed at four months old. Doctors didn't know what was wrong, and misdiagnosed her with a variety of syndromes. Carol pointed out that Michelle was traumatized by a lot of her medical treatment. "In her early years she—unknown to us—felt traumatized by all the doctor visits and lab work that was done on her," Carol told me in one of our conversations. "Because she rarely forgets anything, all of these memories remain with her." She barely forgets anything. With half a brain. This is a grand example of acquired savant syndrome. The brain injury itself unveils some hidden talent. Michelle is also amazing with dates. Carol told me that Michelle watched a lot of Wheel of Fortune. "She plays the game against the TV and wins every night."

Teach the Teachers

One of the things that Michelle asked me to remind the world was this: Teach the teachers to do not horrible to people like me. School was tough for Michelle. In school teachers and students ridiculed her and call her a behavior problem. In their defense, teachers were not particularly well trained for any sort of cognitive issues until quite recently. This was true with ADHD, dyslexia, as well as any sort of brain injury. I am dyslexic and I have ADHD, and even with those—relative to Michelle—mild issues, most (not all) teachers were pretty horrid back in the 60's and 70's. It wasn't until 1975 that congress mandated that schools provide kids with learning differences (trust me that's what they are) with "appropriate public education." Before that it was mostly just You're dumb, or you're lazy, but I suspect both. Sit down, shut up, and don't disturb the smart kids.

Finally: The Diagnosis

Michelle was misdiagnosed and sent into a schooling system that treated her badly. Then in 1997 something changed: Her brain was scanned. Here is the scan:  

This image looks like right side of Michelle's brain is gone. But this this image is taken in radiological convention. What is radiological convention? Imagine you've entered a patient's room. You are at the foot of the bed looking at them. That's radiological convention: As if you're standing at the foot of their bed.

In the cartoon below, you are person A.

The scan shows that the stroke took the left side of Michelle's brain. And for those of you that have had stroke on the left side of your brain, you know there's one really important function there: Language. Broca's area (thinking of words to say) and Wernicke's area (understanding words you hear) are both on the left side.

But what about Michelle? Did she lose language? Nope. Michelle could always talk. And her ability to speak has always been appropriate for her age. She would sometimes perseverate quite a bit (I want, I want, I want...), and was not able to be subjective; everything was black-and-white. A big day came when Michelle was sarcastic to Carol. Bottom line: No left hemisphere, spoke and understood language perfectly.

A North Star for folks with brain injury

Michelle Mack is an inspiration, straight up. I'm sure she doesn't feel like one, but she should. She's an inspiration for people with brain injury. But she's also a North Star for people like me. We all think we're dumb sometimes, but we're not. Our disabilities can reveal greatness.

Coda

When people have a brain injury—including stroke—during the first year of life its called cerebral palsy, or CP. Most cases of CP are in utero strokes. That's what happened to Michelle.  

Stroke survivors often describe their stroke as massive. But the term is pretty useless. What is generally meant is that the stroke was big; so big it was massive. But there is no scientific definition of how big a stroke has to be to be "massive". One thing I suggest to survivors is this: If you've had a stroke, there's an image. Get it. As painful as it may be to look at, get a copy of any post-stroke image of your brain.  This may actually be good news. You may imagine the infarct (the "dead zone") as much larger than it is.

Pete On a Podcast

I was interviewed on the Strokecast podcast by Super Survivor Bill Monroe. 

We talked about stroke recovery while touching on everything from Malcolm Gladwell, to the po

Get better movement without moving a muscle

Let me come straight to the point: There  are three ways to drive changes in your brain to help you move better. All three effect very similar parts of the brain. And here is something that warms my lazy heart: Two of them you don't have to move a muscle!

The image above is from researchers Robert M Hardwick, Svenja Caspers, Simon B Eickhoff, and Stephan P Swinnen. (Reference)

What moves your body? It always starts with the brain!

We all know that muscles move us. But the brain moves muscles. This  idea is lost on a lot of clinicians in rehab. They'll talk about muscle strength, range of motion, quality of movement, etc. etc. etc., but not talk about the brain. Why don't they talk about it? They can't see it. They can't measure it. And really, they can't help it. 

How do you get the brain to change to move better?

There's a bunch of ways to get the brain to rewire for better movement. 

1: Move. This is called repetitive practice. "We are we repeatedly do. Excellence, then, is not an act but a habit.” (Will Durant, paraphrasing Aristotle). The more you do a movement repetitively, the more the part of the brain that controls that movement is activated.* Note: No one else can do if for you, it has to be you doing the work. Musicians know it, athletes know it, dancers know it, martial artists know it, and now you know! More info here. 

2: Imagine a movement. This is called mental imagery, or mental practice. If you imagine doing a movement the way you did it prior to your brain injury, the part of the brain that controls that movement is activated.* More info here. 

3: Watch someone else do the movement. This is called action observation. If you watch someone do a movement, the part of the brain that you use to do that movement is activated.* Find instructions here. 

About this image:

This three-pane image above shows the parts of the brain activated during movement, action observation, and mental practice. 

There are differences. For instance, in action observation the part of the brain that is used for vision is activated because the observer is seeing someone else do the movement. But overall, there is a lot of overlay between the three activities!

*All three of these techniques will activate movement centers in the brain. If they are activated enough, that part of the brain gets bigger. How much is enough? I'll argue at least 1200 repetitions in a single-joint movement. All three also add more blood vessels, and more connections in the brain. 

tPA: 𝙎𝙩𝙞𝙡𝙡 Not Used Enough

I'm reading the book tPA for Stroke: The Story of a Controversial Drug* about the clot busting drug that's used in "block" (ischemic) strokes. It was published in 2011. 

The book tells the long, winding, political, and controversial path tissue plasminogen activator (tPA) took to get to market, and then be—somewhat at least—accepted as a treatment for ischemic (block) strokes. Is TPA still controversial? For some reason, yes.

Interesting Facts About TPA

•A study by the American Heart Association looked at data from 300,000+ ischemic stroke patients, TPA was administered to 3.3% of patients. 

⇒2.2% of patients at regular hospitals got tPA

⇒6.7% at hospitals with PrimaryStroke Center Certification. 

⇒Survivors are three times more likely to get tPA if at a certified stroke center.

•In 2019 the journal Stroke did a review of malpractice suits relating to treatment of stroke in hospitals

⇒Almost 30% of the cases were failure to treat with tPA.

⇒The average payout for pre-trail settlements was $1.8m. The average payout for court verdicts was almost $10m.

•A 2020 article in the Journal of the American Academy of Neurology found “Overall, about one-quarter of eligible patients with AIS (‘block stroke’) presenting within 2 hours of stroke onset failed to receive tPA treatment.”

⇒The article points out that women and minorities are undertreated with tPA because of course they are.

 

•Speaking of women: Another 2020 article in the Journal of the American Academy of Neurology found…

⇒Compared to men, women were 30% less likely get tPA.

⇒Sidenote: Women are also less likely to receive aggressive treatment when it comes to heart attack.

 

•Weird Science: tPA is never safe for hemorrhagic strokes. Except sometimes.

           ⇒There are multiple studies (1, 2, 3) showing that tPA can be used to increase longevity, decrease incrainial pressure (pressure on the brain inside the skull), and reduce injury to neurons from hydrocephaly (brain swelling). Note: t-PA in "bleed" stroke shows efficacy in ongoing clinical trials, not yet in clinical practice. The data we're waiting on is from the CLEAR III trial. 

   •Can tPA be given for a second stroke? Yes! About 25% of survivors will have a second stroke. So its important to know two things: 

⇒You should know the FAST test. Better yet, know A better version of the test.

⇒tPA is safe and just as effective for a second stroke. Or, if you want it more science-y: "Repeated use of IV-tPA was not associated with an increased risk of intracerebral hemorrhage or death in patients with recurrent acute ischemic stroke."  

 

•Is tPA effective and safe if you're over 80? Yes! 

  ⇒Patients >80 years do better with IV tPA than without it

 ⇒tPA is effective in survivors of advanced age whether in large academic centers or in community hospitals

*The author, Justin Allen Zivin, MD, Ph.D., passed away in 2018 at age 71. He dedicated his career to identifying treatments for stroke, specifically the use of tissue plasminogen activator, or tPA... He encouraged the National Institute of Neurological Disorders and Stroke to change the paradigm for clinical stroke research, organizing a study that required a complete rethinking of how stroke care is managed.

This book was co-authored by John Galbraith Simmons.

F$#^R& The Plateau!

Three quick suggestions to continue breaking though plateaus: 

Change things up. Do not fall into what athletes call habituation; doing the same thing and expecting better movement. Work (within sane limits of safety) beyond your ability. In other words, the same old will get you more of the same old movement. New, done correctly, will get you new movement.

Let an athletic trainer help you be a better athlete. Explore the option of working with an athletic trainer (AT). (Note: In the USA an AT is a Masters degree. They understand what a stroke is, and safety concerns). The AT may help unleash your inner athlete. Therapists sometimes focus on reducing deficits. They have to: They're trying to get you safe, "functional," and back home. ATs tend to focus on better movement, and will look at survivors the way they look at any athlete. To them, you'll just be another athlete. A "low level athlete playing a higher stakes game."

If you don't work out, plan on weakness. Never underestimate the value of the hard work you are doing in the gym (home gym, place where you exercise/ meditate/ stretch, etc.). Survivors take twice as much energy as aged-matched couch potatoes to do every movement (i.e. dressing, walking bathing). So survivors need “banked” energy to live their life. On top of that, survivors need even more energy to do the hard work of recovery. 

SPACE TO RECOVER—THE HOME GYM

(Note: Having a place to work out at home is essential when COVID-19 makes it hard to attend therapy. Here is a free chapter from my book Stronger After Stroke that offers suggestion for an at-home stroke recovery gym.)

My kids in our home gym

Clearly, it’s easier to study at the library, do paperwork at your desk, and cook in the kitchen. Every stroke survivor also needs a space within his or her home dedicated to recovery. It should be a space where you can focus on recovering from your stroke. Like a library, it should only have the distractions you want; like a desk, it should be organized; like a kitchen, it should have all the recovery tools you need. Some stroke survivors prefer to pursue at least some of their recovery effort in a community gym. Even if one joins a community gym (see the section Space to Focus—The Community Gym, later in this chapter), there are great reasons for having a home gym as well. 

How Is It Done? 

Your home gym can be a basement, an extra bedroom, or a corner of a room. It does not have to be big and does not have to have any more equipment than you need.

It should have what is necessary to facilitate recovery. This may include exercise equipment, a TV, VCR, DVD player, a stereo, and inspirational art. Build your gym as a place of sanctuary and a place of work. Ideas for equipment include: 

Seven buck at Goodwill!

A treadmill 

A recumbent cycle 

An upper body ergometer (hand cycle) 

An exercise mat 

something used to maintain balance (sturdy chair, etc.) 

Weights 

Resistance bands 

Electrical stimulation devices 

Balls, decks of cards, or other “toys” 

A mirror

This list can be as long or as short as it needs to be. A small amount of simple equipment that is well thought out and well used is better than a lot of expensive equipment left in a corner. Doctors and therapists can help compile a list of needed equipment. 

What Precautions Should Be Taken? 

Be prudent when assembling the gym and think safety first. Any exercise or therapy equipment has inherent dangers. For instance, a treadmill provides a moving surface that may be inappropriate for some stroke survivors. Even something as simple as a ball can facilitate a loss of balance that can cause a fall. Consider installing grab-bars for any balance exercises you do. Make sure the floor is nonslip given the footwear you expect to use. Doctors will tell you if an exercise or therapy is safe, and therapists will explain how to do the exercise or therapy in the most effective way possible.

Stroke evaluations drop by nearly 40% during COVID-19 pandemic

The New England journal of medicine published an article on May 8th that said the number of people being evaluated in hospitals for stroke has dropped by 40% during the pandemic.

What Covid really looks like

Here is the study's visual description of that drop.

Click to make larger

Not only are they not being tested, stroke survivors don't even come into the hospital, or wait too long to see treatment. And in a situation where time is brain, that is not good.

You can find a layman's perspective of this study here.

Spasticity: Can ANYTHING be done?

What reduces spasticity?

Does anything eliminate spasticity?  

Below is an outline of various spasticity-reduction treatments.

Treatments that will permanently reduce or eliminate spasticity.

The neuroplastic model of spasticity reduction. I developed this one years ago. You can find an outline of it from my book here. It is the only non-surgical, permanent option on this list. Here is the emerging evidence for the "neuroplastic model of spasticity reduction."

• Motor learning therapy increased spastic muscle's contralesional cortical motor regions leading to decreased spasticity
• Intensive training in patients with increased muscle tone improves function without exacerbating spasticity 

Note: there is a lot of other clinical evidence that this model works, but it is typically wrapped up in research of other therapies that use a lot of repetitions.  Here are some of them:

• CIT reduces spasticity 2017
• CIT reduces spasticity 2013
• CIT reduces spasticity and increases functional use
• CIT increases strength and decreases spasticity

Dorsal root rhizotomy (or selective dorsal rhizotomy). The one "medical" thing that does reduce spasticity in a long-term way is the one that nobody ever talks about. It's neurosurgery— this is in children, but they do it in adults as well. For the right person, its perfect and permanent.   

Treatments that will temporarily reduce or eliminate spasticity.

Ice. If you ice the spastic muscle for about 20 to 30 minutes you'll get about 20 minutes to a half an hour of a reduction in spasticity. (Technical: It slows the monosynaptic reflex.)

Heat. Don't do it. It exacerbates spasticity (Technical: It speeds up the monosynaptic reflex.)

Weight-bearing. This is one that a lot of therapists love. Whether you're standing on the leg that's spastic, or putting weight through the upper extremity that spastic, there is a reduction in spasticity. That reduction will last until the next big volitional movement and the spasticity comes back. But it is a great short-term strategy that helps set the survivor up for treatments that are more permanent.  

Stretch. Always the first line of defense. There's a lot of good reasons to stretch, but it does absolutely nothing to reduce spasticity in the long-term. This was established by not one but two Cochrane reviews. It didn't even reduce contracture formation. 

Stretch and weight bearing have the same effect, but also give the same head fake; They work immediately, but stop working after the next big (effortful) movement. 

Botox (and other neurolytics). Back in the day there were a couple of formulations of Botox. Eventually you would become immune to one so they'd use the other one. You'd  become immune to the second formulation, and that was the last time it would be effective. Now they have so many formulations that you can be on Botox for the rest of your life. It's a Band-Aid. When it wears off, it's done. It's also an expensive, and often painful Band-Aid. Oh, and it gets in the way of my neuroplastic model.

Electrical stimulation (E-Stim). Typically this involves reciprocal inhibition of the spastic flexors. Put simply: You E-Stim the muscles opposite the powerful flexor muscles that cause the problem. Example: E-Stim the elbow extensors (triceps) to relax the elbow flexors (biceps, etc.). Various doses will provide a temporary reduction is spasticity.

Sorry not Sorry: Stroke Recovery is NOT Proximal to Distal.

There's an old saying among clinicians: Recovery from stroke is proximal to distal. That is, there is a predictable pattern of recovery: proximal (closer to the body) to distal (further from the body). 

Assuming this may hurt recovery.

The 'proximal to distal' crowd would say recovery in the arm/hand would be in this order:

• first to come back are the muscles in the shoulder and shoulder blades, 
• then progress to the elbow, 
• then to the forearm, 
• then to the wrist, 
• then the hand, 
• then the finger joints close to the hand, 
• then the finger joints furthest from the hand.…

But proximal to distal is not accurate any more than assuming that the sun circles the earth because it always rises in the east and sets in the west. Both are based on observation, but neither is based on what is actually happens. 

Here's what actually happens:

1.   You have a stroke; one side of your body is affected
2. The proximal muscles (i.e. shoulder) have bilateral innervation; both sides of your brain control the proximal muscles.
3.  Your shoulder comes back first not because of the "proximal to distal rule" but because your brain never ceded control over the shoulder muscles.
4.  The clinician sees the shoulder coming back before everything else and figures, "That's the proximal to distal rule!"

You might argue, "If the shoulder comes back first, then maybe the reason is wrong, but its a distinction without a difference. Survivors will still see proximal to distal return."

But what if the fingers are coming back first? Clinicians may not think to test the hand because the shoulder is not back. Or they may focus on shoulder control even though the hand can drive shoulder control if hand movement is recognized and encouraged.

In the lower extremity, the problem can be even worse. Proximal muscles would move the hip, and those are what are focused on. Meanwhile, an AFO (ankle brace) is routinely put on the survivor even though the ankle (a distal moment) may be coming back on its own.

And AFOs are easy to walk into, but hard to get rid of.