Monday, June 10, 2019

Poor Sleep? Poor Recovery.

Getting decent sleep is essential to stroke recovery. This is not some loosey-goosey pseudo-scientific "pathway to happiness" that then somehow reflects back on your recovery. This has to do with the hardware of the brain.

Think of the brain is a big bucket of one thing. And that one thing it's neurons. You have about a hundred billion of them. Or at least you did prior to your stroke.

Neurons are very much like muscle fibers. If you want to build a muscle stronger, you stress it, usually with resistance training, until it micro tears. That micro tearing causes a form of pain called delayed onset muscle soreness (or DOMS). Once the muscle is micro torn, it triggers new and/ or bigger muscle fibers. That's how muscles grow.

Neurons Grow Like Muscles

Muscles grow when they're stressed (exercise) and neurons grow when they're stressed. How do you stress a neuron? By learning. And after stroke, you are learning. Its called motor learning. When you motor learn, you stress neurons. Neurons respond by triggering protein synthesis, which form new connects and voilĂ ! You've learned that movement.

Neurons use the synthesized protein to build new dendrites. Those dendrites then build new connections to other neurons. But the actual connectivity part is done while you're sleeping.  So literally, if you don't sleep you don't recover.

And we're not talking about drugged sleep. That's called sedation, and the brain does not learn new movement (or anything else) when you're sedated. And not taking anything that makes you tired is a high bar for stroke survivors. Consider spasticity meds. Those meds are downers (CNS depressants), and will interfere with what your brain needs to do to recover. The problem with sleeping pills and depressants generally is that the brain is not able to do the hard work it needs to do to consolidate what you learned while you're recovering.

So let's say you're in therapy. And every day your therapist is trying to help you relearn how to walk. In order for new neurons to take over for the ones that were killed by the stroke, you have to learn. Learning requires sleep. So you can work your butt off in rehab, and not have much to show for it, because you're not sleeping well.

Again the consolidation of what you learn during the day happens while you're sleeping at night.

Here are some suggestions to get to sleep...

Daytime Suggestions
·   Set an alarm to try to wake up at the same time every day.
·   Include meaningful activities in your daily schedule.
·   Get off the couch and limit TV watching.
·   Exercise every day. People with TBI who exercise regularly report fewer sleep problems.
·   Try to get outdoors for some sunlight during the daytime. If you live in an area with less sun in the wintertime, consider trying light box therapy.
·   Don't nap more than 20 minutes during the day.

Nighttime Suggestions
·   Try to go to bed at the same time every night and set your alarm for the next day.
·   Follow a bedtime routine. For example, put out your clothes for morning, brush your teeth and then read or listen to relaxing music for 10 minutes before turning out the light.
·   Avoid caffeine, nicotine, alcohol and sugar for five hours before bedtime.
·   Avoid eating prior to sleep to allow time to digest, but also do not go to bed hungry, as this can also wake you from sleep.
·   Do not exercise within two hours of bedtime but stretching or meditation may help with sleep.
·   Do not eat, read or watch TV while in bed.
·   Keep stress out of the bedroom. For example, do not work or pay bills there.
·   Create a restful atmosphere in the bedroom, protected from distractions, noise, extreme temperatures and light.
·   If you don't fall asleep in 30 minutes, get OOB and do something relaxing or boring until you feel sleepy.
·   Going to bed and getting up at the same time every day.
·   Removing electronic devices, such as televisions, computers or cellphones, from the bedroom.
·   Avoiding large meals, caffeine and alcohol before bedtime.
·   Making sure the sleep environment is quiet, dark and not too hot or too cold.

Steps to Better Sleep Hygiene:  Behavioral Changes
·   Regular risetime and bedtime—by doing this every day,you can help your internal clock by providing regular cues, thereby improving your sleep-wake cycle.  This should help in getting to sleep faster and reduce the number of nighttime awakenings.
·   Get plenty of bright natural light exposure, preferably in the morning along with exercise. This will give your internal clock a strong cue to run on time.
·   Avoid stimulants, such as caffeine and nicotine.  Avoid caffeine-containing drugs, drinks, and foods for eight hours before bedtime.  Avoid tobacco in the evening.
·   Avoid thoughts or discussions about topics that cause anxiety, anger, and frustration before bedtime. 
·   Institute and maintain a definite bedtime routine that is relaxing to help signal the body that sleep is to occur soon.  Examples might include: a bath, brushing teeth, a small glass of warm milk (4-6 oz.), or a light snack. This will help with getting to sleep and will reduce the need to awaken due to hunger.
·   Reserve the bedroom and especially the bed for sleeping. Avoid activities like reading and watching television in bed. Your body needs cues to associate the bed with sleeping and not other activities.
·   If you nap, try to do so at the same time every day and for no more than 1 hour, and ending by 3pm.
·   Don't spend more than 15 minutes trying to sleep—if you cannot sleep after 15 minutes get out of bed and engage in a quiet activity.  Ideally, the activity should be in low light and sedentary, for example, listening to soft relaxing music or meditating, not reading with a bright light or watching television.  Return to bed only when you are sleepy.

Staying asleep
·     Minimize light and noise at bedtime and throughout the night. This will reduce stimulation and promote normal function of the body’s melatonin rhythm that helps to promote and maintain sleep. Ear plugs may be helpful if the environment is noisy. Avoid alcohol within 4-6 hours of bedtime.  When taken at bedtime, alcohol may help induce sleep but disrupts sleep later in the night. 
·     Avoid heavy exercise within 6 hours of bedtime.  Exercise increases the body temperature. Sleep onset normally occurs as the core body temperature is decreasing. Artificially increasing body temperature can therefore give the wrong cue to the brain and contribute to sleep disruption. 
·     Avoid heavy late night meals. They can interfere with the ability to fall and stay asleep. A light snack at bedtime, however, may promote sleep.  Good bedtime snacks include dairy products and carbohydrates. 
·     Assure the bedroom environment is right for sleep: comfortable bed, dark, quiet, and a cool temperature for sleeping. 
·     Avoid looking at the bedroom clock if you awaken. If necessary, face the clock to the wall. 
Moving in bed
·     Use satin sheets on the bed or pajamas to help with moving in bed can minimize the effects of stiffness/pain.
Waking to go to the bathroom
·     Decrease evening fluids (3-4 hours before bedtime) to lessen the chance of waking up to go to the bathroom.  Make sure that you drink plenty of fluids in the morning hours.  If you often get dizzy when you stand, sit on the side of the bed for a moment or two while flexing your leg muscles before you stand up.
·     Go to the bathroom immediately before retiring.
·     Add some stress-relieving exercise to each day. Walking counts!
·     Helpful Hints: 
·     Stress can keep you from getting enough sleep
·     Exercise can relieve stress and help you sleep well at night
·     So can mindfulness, meditation and deep, diaphragmatic breathing
·     7-9 hours is considered “enough” sleep for most adults
·     Plug your phone and other electronic devices in away from your bed. Helpful Hints:Scrolling and staying connected late at night could be sabotaging your sleep cycle
·     Choosing to get enough sleep at night over getting more work done could help you be more productive
·     Bright, blue screens may inhibit melatonin production – keeping you awake longer
·     Set a “bedtime” alarm for each person in the family.
·     Helpful Hints:
·     Going to bed and waking up at a consistent time can help you sleep better
·     To set your bed time, figure out your ideal wake time and count backwards from there
·     A nightly routine with time to wind down could help you stick to your bedtime
·     If you’ve tried everything and still can’t sleep well, you may have a sleep disorder – talk to your doctor to find out what to do
·     Start your morning with a healthy habit, like a walk around the block or a moment of gratitude.
Helpful Hints
·     Adding a positive activity to your morning routine could make it easier to get up if you’re a late snoozer
·     Sleeping past your alarm can make you groggier in the morning
·     Habit chaining may help establish new habits, like doing a few push-ups right after you brush your teeth
·     Add a 20-minute power nap to your afternoon.
·     Helpful Hints:
·     An afternoon nap can help you re-energize and power through the rest of the day
·     “Catching up on sleep” is a myth – sleeping in on the weekend may be sabotaging your weekday sleep cycle
·     It may take a few weeks to get used to your new sleep cycle, so stick with a consistent bedtime and take naps when you need to

Sunday, May 5, 2019

Stem Cells for Stroke: Expensive, Unproven and Unavailable.

I'm not a big fan stem cell treatment to help stroke recovery. 

Not yet anyway.

Part of the problem (bluntly) is the surgery.  A hole is drilled through the skull— and that's the least invasive part of the procedure. 
Through that hole, a long needle is directed (multiple times) to the area around the stroke (infarct) in the brain. 

Remember: the stroke kills part of the brain. After the stroke, that dead area "cavitates"— literally forms an empty cave in the brain. Nature hates a vacuum and the cavitation is a vacuum. So it doesn't remain empty— it fills with cerebral spinal fluid (the fluid that flows in, through, and around the brain). That fluid-filled area is dead, and no amount of stem cells, or any other sort of treatment is going to bring those dead brain cells (neurons) back. 

Stem cells treatment aims to overcome the loss by injecting stem cells in the survivor's brain, just outside of the area that was killed. 

Those cells will then turn into brain cells (neurons). That's the idea, and it does hold tremendous promise. And they will get it right, one day. But that day ain't yet. 

A study that is often cited as a seminal stem cell/ stroke study is entitled Clinical Outcomes of Transplanted Modified Bone Marrow–Derived Mesenchymal Stem Cells in Stroke. This study, done at Stanford and one other site, enrolled a total of 18 patients. 

The study has 3 problems: 
1. No control group. 
2. A Lot of people screened, few qualified. 
3. The data (for the primary movement test they used, at least) appears underwhelming.

No control group. 
Everyone got the treatment. Not great. Because with no control, everyone doing the data collection knew that everyone got the treatment. Uncontrolled studies like this put tremendous pressure on the folks who are measuring progress. If the scores go down, the whole study looks bad, which can affect future funding. So there's a tendency to want to "cheat" the score up, either consciously or unconsciously.

A Lot of people screened. Few qualified. 
379 stroke survivors were considered (screened). And out of those 379, only got 18 the qualified. Why was the qualification ratio so low? It's hard to say. According to the data supplement available with the study, they had a lot of "exclusion criteria"— things that might keep people from the study. But, it is a pretty basic list of exclusions for a stroke study. So why were so many people turned down? Maybe they weren't. Maybe potential participants refused be be enrolled. Why would they refuse? Let me explain...

In research you have to do what's called "informed consent." You have to tell the participant (or the less modern term "subject") every aspect of every aspect of the study that pertains to that participant. This is a federal and international law. Why is it so important to inform participants? Let's put it this way... the Nazis did not inform Jewish (and other) prisoners of the experiments the prisoners would be involved in. And, really, nobody wants be a Nazi. 

But it wasn't just the Nazis. Consider the U.S. Public Health Service Syphilis Study at Tuskegee, a horror show that withheld life saving treatment from African American men so  "scientists" could track the "natural progression" of syphilis.  That didn't end until 1972!

The upshot were a whole bunch of very strict rules when it came to human participants. We now have to tell any potential participant EVERYTHING that may affect them in the study. This process— the process of explaining everything, again, is called informed consent.

OK, back to stem cell research and why I think they had a lot of people run out of Stanford as fast as they could.

During informed consent, the participants were probably shown the needles that would go into their brain. They'd probably also were informed that there would be some brain damage as the needle tore through brain tissue on the way to the target. 

The data appears underwhelming.
This study had one primary way of measuring movement: A test called the Fugl-Meyer. I did this test for 12 years straight, every day, often multiple times a day. I think I've done it more than anyone in the Galaxy.

Bottom line, there wasn't much of a change. Just over 11 points. That's 11 points out of a possible 88. This is a relatively modest increase. It is true, modest increases may make a huge difference. But 11 or 12 points can be potentially garnered by being able to straighten the elbow a little more.

But the authors ride it for all its worth. This is unfortunate because scientists have a hard enough time explaining their science to the world without the added burden of  exaggeration.

We did not expect to see significant recovery. We were quite startled by the remarkable recovery some of the patients showed.” I could get more points than that using intensive repetitive practice-- and without the pesky brain needles. And please! Stay away from the term significant! Significant means one thing in the world of scientific statistics, but to laymen reading your interview it means "a lot".

She was what we call one of our miracle patients." [sic] There were only had 18 "patients." How many miracles were there? 

We all want something that works. But stem cell therapy isn't there yet. What is weird is that this study does have important findings that move the science forward. Establishing safety across multiple parameters (as this study did) is important. 

Please note that stem cell therapy for stroke recovery is not available in the US or Europe, except in clinical trials. However, I know a survivor who had a series of stem cell treatments for his stroke. This was over the years  2013- 2015 in Thailand and China. You can find info about this option here:

This survivor reports that he thinks the treatment cost ~16k USD.

Monday, March 25, 2019

Don't let PERFECT be the enemy of BETTER

There's a perspective most clinicians have that is false, and that can hurt your recovery. Bluntly, their perspective is: There is a right and a wrong way to move. And stroke survivors move wrong. 

Further, they'll say, if you move the wrong way, its bad for your body, and brain. 

"You'll hurt your brain."
They'll contend that since you're moving wrong, the brain will "ingrain" that movement. The brain will learn that bad movement, become satisfied with that movement, and that will become your movement strategy forevermore.

"You'll hurt your body."
They'll say that, because you're moving wrong, and the human body is designed to move right, you'll cause orthopedic (bone/ muscle/ ligament/ etc.) damage.

Both of the above are only true if you completely discount two fundamental aspects of human motor behavior:

a. For 250 thousand years humans have learned to move the same way: Move, self correct, move again better, self correct, move again better... but if you are discouraged from moving, where is the opportunity to self correct?

b. The injury to the brain makes the whole move, self correct process slower than clinicians can deal with for 2 reasons: 1. Therapy has limited amount time with the survivor. This is a bigger problem in the USA than many other countries, but everywhere its a problem. 2. Many therapists have a lot of experience with brain injured patients, to be sure. But the frustration, fatigue, depression, changes in the brain, emotional issues, etc., etc. is something therapists can attempt empathize with. But they don't really understand unless they've lived it. There are therapists who have lived in both worlds. I've met quite a few of them. They know. Here's one

The upshot of a and b is that the clinician— through word and deed— assumes that the survivor will never learn to move "right." And so, "you'll hurt your brain" and, "you'll hurt your body."

So the question clinicians are trying to answer is "How can I best coach them to move right?" Instead the question should be is, "How can I get them to move better?" Better is always achievable. (Clinicians, look at it this way: Chip away at their present AROMs. If the have 20° of elbow extension, go for 30°.)

In some ways, stroke survivors have the same dilemma as high level athletes. Both athletes and survivors are trying to push through a ceiling in their ability to move. And just like a an athlete, the survivor's progress will be slow and very (very) incremental. 

And that's OK, because its not about "right". 

Its about better.

Tuesday, March 12, 2019

Early Walking After Stroke is Good, No it Isn't

There has been a debate for many years about early rehab. Should stroke rehab in the first 1-7 days be intensive? Intensive is a buzzword that means "hard"; more repetitions, more weight, longer distances, etc. Some people suggest you should do a lot very early after a stroke, some suggest (I'm in this camp) that you should wait until the subacute phase.

Within this "early-more-better" argument is a sub-category: Walking. The survivor should walk within 24 hours of their stroke, they say.

I've written about this before. Note that the following link has clickable links so you can have a look at the actual article yourself. Here.

Here's the bottom line: Early is not better. Introduce intensity during the subacute phase, not the acute phase. 

Bottom line: If you have the survivor get intensive during the... 
  • acute phase (1st 7 days), you can make the infarct (stroke) worse
  • hyperacute phase (1st 6 hours), you can kill them.
There was a long, large study that was done on walking very early after stroke. Note their bottom line for walking early: Fewer patients in the very early mobilisation group had a favourable outcome than those in the usual care group.

Want to know whats going on early after stroke in the survivors brain? Have a look at this.

Friday, March 1, 2019

Don't waste your $$: There's No School like Old School Stroke Recovery

There are a lot of virtual reality/ gaming stroke recovery systems out there. And a ton of folks that try to convince you that, because its a gaming glove, or VR, or even a robot... its just better. Because, haven't you heard? New is better.

Except its not. Motor learning-- the kind of learning stroke survivors have to do to recover-- has been going on in humans forever. So the stuff that always worked to move better, still works. 

Don't take my word for it. In this article the authors looked at the difference in motor learning after stroke in 2 groups:
1. Virtual Realty training with the Nintendo Wii system
2.  Playing cards, bingo, Jenga, or a game with a ball

After collecting the data on the two groups, this was their conclusion:

The type of task used in motor rehabilitation post-stroke might be less relevant, as long as it is intensive enough and task-specific. 

Other studies (see below) say the same thing: Normal activities work as well as machines, as long as its as long as it is intensive enough and task-specific."

32. Lo AC, Guarino PD, Richards LG, et al. Robot-assisted therapy for long-term upper-limb impairment after stroke. N Engl J Med. 2010;362:1772–83.[PMC free article] [PubMed]
33. Duncan PW, Sullivan KJ, Behrman AL, et al. Body-weight-supported treadmill rehabilitation after stroke. N Engl J Med. 2011;364:2026–36.[PMC free article] [PubMed]

Blog Archive