AFO: You can check out anytime you like, but can you ever leave?

I often get questions about ankle foot orthoses (AFOs), and how to get out of them. I'm not a big fan of AFOs because they encourage a sort of "learned nonuse." It's actually more like "learned disuse." (Learned disuse: You're not learning to not use the body part, but you learning to use body part incorrectly.) And keep in mind, every movement you make changes the way your brain is wired. So it's very easy to get used to an AFO. Let's put it this way:

It's easy to walk into an AFO. It's hard to walk out.

In any case, I get a lot of e-mails about this subject. Here's an example:

 

I wear a big brace on my right leg. I am paralyzed on the right side. I walk with a one-point cane. I walk with an open hinge (articulating) AFO.

 

They opened the hinges on my old brace several years ago. I walk around my apartment with the old one. But when I go out I use the bigger brace which isn't open at hinges.

 

I read on Deans' Stroke Musings that you recommend the Air Cast. Which one for stroke survivor do you like? They have a lot of different ones on their website. 

Here's my answer:

First of all, the disclaimer:

(Warning: ENDING THE USE OF AN AFO CAN LEAD TO FALLS AND INJURIES.

Never discontinue the use of an orthotic without first consulting the appropriate health care provider. Then call your doctor. Then have your doc talk to any other providers as needed. Then discuss it some more. Thank you.)

Wear a brace on the ankle that satisfies two things:

1. Keeps you safe

2. Challenges* you

*Challenge: Walking naturally challenges you to lift your foot. If you can lift your foot up and down to stay safe (not trip) then you might consider questioning an orthotic that helps lift the foot. 

Gradation would usually be something like this:

1. Rigid AFO

2. Articulating AFO (where the ankle joint moves just a little bit)

3. A stirrup (stabilizes both sides the ankle but allows the ankle to move up and down freely)

4. A high top shoe (like a basketball shoe)

5. Nothing

There are a wide variety of other options between a rigid AFO and barefoot. Here are some. Some help bring the ankle up during gait, others support the ankle. The stirrup is usually associated with one particular company: AirCast.

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Know a good doc or therapist?

I get this all the time:

"How does one go about looking for a neurologist or physiatrist or therapist who is familiar with the practices outlined in your book?"

You'll notice a link on the right column. Or you can click here. Either way, if you live in the USA,  you'll find resources to help find aggressive healthcare providers for your recovery team.

Then  next questions is "Where do I find an OT or PT or speech therapist who knows?" You find a resource for that too.

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NEWS FLASH: There's No Way to Prepare For Life After Stroke

Surprise!

A recent study seems to sum up much of the whirlwind shock of life post stroke. I can't say it any better, so let me quote the authors:

There are 3 phases in the continuum from acute care to inpatient rehabilitation to home: 3 phases of this trajectory: 
1. the stroke crisis
2. expectations for recovery
3. the crisis of discharge
Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory. As caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing. Survivors are often underprepared to take on even the basic tasks to meet the patients' needs on discharge

Conclusion: Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let alone the crisis of discharge and all of the new responsibilities with which they must deal.

STROKE CAREGIVERS HANDBOOK (free)

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Swallowing Trouble: Dysphagia

My son Jesse, swallowing.

Dysphagia:  difficulty swallowing.

Stroke is the leading cause of dysphagia.

Approximately 60% of stroke survivors develop dysphagia at some point after stroke. Dysphagia is the most frequent cause of pneumonia poststroke. It can also delay other parts of recovery. (It's hard to recover when you can't swallow.)

 The treatment for dysphagia may follow the same neuroplastic rules as every other form of post stroke recovery. For example, repetitive practice of wrist extension will change the brain to make wrist extension easier as time goes on. But repetitive practice of wrist extension has no downside. The worst thing that can happen is that you get tired. But if you repeatedly practice swallowing there may be a risk. What happens if you can't swallow whatever it is you're trying to swallow? You choke! You may aspirate. Aspiration involves having whatever you attempt to "swallow" go "down the wrong pipe". Instead of going down the esophagus to the stomach, the material goes down the trachea to the lungs. Once lodged and lungs it can cause pneumonia. Why does it cause pneumonia? Because the lungs hate having foreign matter inside. So the lungs try to fight the foreign matter. The lungs attempt to fight the foreign matter is the very definition of infection. An infection in the lungs is called pneumonia.

There is a tendency for clinicians to undertreat patients with dysphagia. These clinicians feared that there is a risk of aspirating.

So, if repetitive practice works, but repetitive practice of swallowing is dangerous, what can you do? If a particular skill is not used (in this case swallowing), the portion of the brain that controls that skill will shrink. As that portion of the brain shrinks, the skill gets even worse. As the skill gets worse, that portion shrinks further... and a downward spiral is initiated. If the dysphagia patient is not swallowing, or not swallowing enough, the portion of the brain dedicated to swallowing will get smaller, and the skill will suffer. 

The movements involved in swallowing have been traditionally viewed as reflexive in nature. But swallowing also follows the same basic "repetitive practice equals more movement" rule.  But what if the person can't yet swallow safely in order to practice swallowing?

There is emerging literature that electrical stimulation may initiate the neuroplastic process. Again, this is not only true for the hand and foot emerging research indicates that the same is true for swallowing. Electrical stimulation may provide the "X” factor that provides small amount of movement on which to build more robust movement. This same continuum of care (e-stim to repetitive practice) is used by clinicians in rehabilitation hospitals around the country to reestablish nominal movement. Although not functional swallowing, electrical stimulation provides early steps towards regaining the ability to swallow.

In terms of the repetitive practice itself, the generally accepted way of safely repeating swallowing is called the "The Frazier Water Protocol". 

For a bit more science-y perspective, click here.

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Bleed Vs. Block: Who Can Expect Better Recovery?

 

       Survivors who have a hemorrhagic (bleed) stroke average better recovery than survivors who have an ischemic (block) stroke. But bleed strokes usually have more disability to begin with. In other words, “bleeds”  start out lower but end up higher. The difference has to do with the different ways these types of stroke affect neurons:

“Block” stroke: neurons die because blood flow is blocked. No blood, no O_2.   No O_2, neurons die.
  

“Bleed” stroke: much of the damage comes from the compression on the brain by the buildup of blood in the skull. Once the compression is resolved there is less overall neuronal damage.

Bottom line: The effect of efforts towards recovery can be expected to be less for ischemic vs. hemorrhagic stroke. Rehab strategies that work well for bleed stroke will typically have less rehab potential for survivors with a block stroke.

This is one of my problems with books about survivors who've had a bleed stroke.  Some of the  books give the impression that they a) had more will, b) are smarter, c) have come up with a new and special technique. Again, on average, they start out lower but end up higher. So the recovery process is scary and arduous, but ultimately more fruitful. And it is more fruitful because there is less brain damage. 

Of course, the prime example of this fudging of the facts is Jill Bolte-Taylor's book My Stroke of Insight.  She had a bleed stroke on the left side of the brain.  Have a look at this video. Does anyone see any deficit in either the right arm/hand or in her speech?

Almost 90% of all stroke are blocks, not bleeds.

Want the science-y perspective?

"If 2 patients at the beginning of rehabilitation had the same basal neurological severity, same basal functional disability, same age, same sex, and same OAI, hemorrhagic patients showed better neurological and functional prognosis compared with ischemic ones."

And to be clear: Bleed strokes are terrible. You have a greater chance of dying from a bleed than a block. And recovery from any stroke is to be celebrated. 

But beware of inflated expectations suggestions by survivors of a bleed stroke. What they suggest may work for them but it is clear: their recovery will usually be higher given the same amount of effort.

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