Wednesday, December 23, 2020

"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. Eyesightthe 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. NeuroGymBiodex 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.

Sunday, December 13, 2020

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 sheunknown to usfelt 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 thoserelative to Michellemild 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.

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.

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