Some High Tech Designers Don't Get It

There is lots of news about how technology can help disabled people recover the use of their affected hand.  Here is what drives me crazy.  Watch this video of a high tech rehab device and DO MORE than look at the flashy movement on the screen and the client's happy face. 
Look at what the woman's hand is doing.

1.  Do media reports and journal articles explain that using technology to manipulate objects on a computer screen is only the beginning?  The goal is to have people use their hands to manipulate objects - not just touch objects so the computer will make objects blow up or move.  To be fair, the technology in the video helped a woman move her arm so she could bring her hand to the exact location the task required.  HOWEVER, photos show that using an expensive $$ robotic arm is not the only way to show clients they have some hand function even when they have weak shoulder and elbow muscles.  Instead of grasping objects resting on a table, clients can rest objects in their lap or stand to reduce how far weak shoulder and elbow muscles have to move the arm, which is remarkably heavy.

2.  Cherry picking high level clients to demonstrate technology is misleading.  I am suspicious when I see stroke survivors begin by using a gross grasp to hold a cylinder-shaped Wii controller and end up grasping a small object between the tips of their thumb and index finger.  Where are the videos of stroke survivors who have trouble opening their hand after they make a fist?  A meta-analysis of 44 studies done on 1362 subjects found that robot-assisted therapy improved only arm movement (1). High functioning clients benefit from the fun aspects of computer games, but I think clients who have less recovery need technology the most.

3.  Proof-of-concept videos are misleading when they have able-bodied people demonstrate the product.  Able-bodied people move at a lightening speed that many stroke survivors never regain.  Speed requires effortless control of every joint.  I can tell my hand to open or close, but I cannot simultaneously tell all the joints in my arm what to do.

The Bottom Line:   Promotional material for technology is not always honest about the ton of work that many clients must do to close the gap between what the computer is doing to objects and what clients want their hand to do.  Technology has to be a good match for what people need.



1. Veerbeck J, Langbroek-Amersfoort A, Wegen E, Meskers C, Kwakkei G. Effects of robot-
    assisted therapy for the upper limb after stroke.  Neurorehabilitation and Neural Repair. Sept
    5, 2016, doi,10.1177/545068316666957.

Health Care Organizations Are Not Being Fully Truthful About Zika

A stroke killed part of my brain so I find the Zika virus very disturbing.

Babies who have Zika do not just have small heads.  Their heads are wide at the jaw and narrow at the top because they do not have a normal cortex to push the skull into its familiar oval shape.  The cortex is the wrinkly outer layer of the brain that controls functions like reasoning, language, and movement.  Research published in Cell Stem Cell found that zika attacks stem cells that are responsible for building the cortex.  The PBS show Spillover showed X-rays of a baby's skull with empty spaces where brain matter should be.  So babies with Zika have skulls that are unusually small AND half hollow.  Research also found that these babies have unusually large sacks of fluid in the brain called ventricles.  Everyone has ventricles, but normal people do not have lots of fluid where brain matter should be.  No amount of therapy can fix a massive loss of brain matter.  Caring for babies who have minimal cognitive and motor function will be devastating for years to come.

Mosquitoes that carry the Zika virus have been found in Florida and other southern U.S states.  This makes travel bans and delaying pregnancy for a few months useless.  Even worse, the majority of people infected with Zika do not feel ill so they do not know they should be tested before trying to have a child.  Before Congress went home for summer break, a Zika funding bill was not passed because other political agendas were attached to the bill.  Our Senators need to stop playing politics.  Developing a vaccine is the only thing that can save us from a plague that will last for as long as mosquitos exist.

P.S. A recent study published in Cell Stem Cell found that Zika attacks the brain cells of adult mice.  Maybe the ideologs in Washington will do the right thing if they find out they could end up with brain damage.

How I Learned to Turn My Head While Walking

I was able to look straight forward while I was in rehab because my PT had me walk in wide uncluttered spaces.  When I went home I learned that if I turned my head while walking outdoors, I stumbled or drifted in the direction my head was turned.  But I want to turn my head to look at a store window or talk to the person walking next to me.

Being afraid to look around while walking made me hold my head still.  This made my neck stiff.
I conquered each problem with its own strategy.  1) Every morning I slowly and gently move my head in circles while sitting.  This loosens my neck muscles while eliminating the possibility that I will fall.  2) I forced myself to look in store windows when I walk.  I began by turning my head for one second.  As I repeatedly turned my head to look at window displays my brain began to process this movement without losing the ability to monitor if I was drifting to the side.  These two strategies have eliminated the icky feeling I used to get when I turned my head while walking.  I will use them until I die because they allow me to participate in fun activities - window shopping and socializing while walking without slamming into friends and family.

Mirelman and associates confirmed the relationship between mobility and cognition (1).  Older adults with a history of falls had significantly fewer falls six months after walking with virtual reality feedback that added a cognitive component.  While walking on a treadmill, experimental subjects could see their foot movements projected on a screen as they responded to simulated obstacles, distractors, and multiple pathways.  Control subjects who just walked on a treadmill for an equal amount of time did not experience a decrease in falls.  The awareness of and ability to respond to environmental challenges is an important part of being able to walk safely.

1.  Mirelman A, Rochester L, Maidan I, et al. Addition of a non-invasive virtual reality component to
     treadmill training to reduce fall risk in older adults (V-TIME): a randomized controlled trial.
     www.thelancet,com/journals/lancet/article/PIIS140-6736(16)31325-3/abstract.

New Hope for More Hand Recovery After Stroke

Problem.  PTs often make stroke survivors make 8 trips around the gym each day while OTs may
             treat the upper extremity for only 4 to 11 minutes out of a 47 minute treatment session (1).
             It is not surprising that repeated practice in PT produces quick leg recovery after a stroke. 
Problem.  Constraint therapy forced doctors to accept that recovery is possible years after a stroke
            BUT it is only for stroke survivors who already have some hand movement and who agree
            to an intense schedule of 2 to 6 hours of supervised therapy per day.

Harris and associates designed a self-administered hand therapy program for a larger range of stroke survivors with a less intensive approach (2).  One-hundred and three subjects with mild, moderate, and severe impairment on the upper extremity Fugl-Meyer test (UEFM) were recruited soon after they were admitted to a rehab hospital.  Subjects in the experimental group were given booklets and equipment graded to their level and asked to do exercises and functional tasks for
1 hour a day 6 days a week during breaks in the therapy schedule.  Subjects actually did an average of 3 hours spread over 4.8 days per week.  Subjects in the control group read and did homework about stroke and their health during breaks in the therapy schedule.  A site coordinator taught the program and then monitored each subject once a week. 

Experimental subjects did an average of 12 hours of self-administered hand therapy spread over 4 weeks while in a rehab hospital.  They were significantly better than control subjects at reaching for and grasping objects on the ARAT (P=0.031) and using their hand during functional tasks on the Chedoke (P<0.001).  A limitation for self-administered therapy is cognitive and language deficits.  Stroke survivors in this study were excluded if they had receptive aphasia or a score lower than 20 on the Mini Mental Status Examination (MMSE).  A score of 18 to 23 on the MMSE indicates a mild cognitive impairment.

A self-administered hand therapy program that required minimal therapist time and moderate client time to supplement in-patient OT produced significant gains in hand recovery for stroke survivors with minimal cognitive impairments.

1.  Berhardt J, Chan J, Nicola I, Collier J. Little therapy, little physical activity: rehabilitation within
     the first 14 days of organized stroke unit care. J Rehabil Med. 2007;39:43-48.

2. Harris JE, Eng JJ, Miller WC, Dawson AS. A self-administered graded repetitive arm
    supplementary program (GRASP) improves arm function during inpatient stroke rehabilitation.
    Stroke. 2009;40:2123-2128.

Solutions for My Extreme Sleep Deprivation

I have had insomnia off and on all my life, but my stroke brought this problem to a new level.  I had a stroke in the brainstem which contains the reticular formation that puts us to sleep and wakes us up. Since my stroke I have repeatedly had nights where I get only two hours of sleep per night.  In February I did not sleep for two days.  What FREAKED ME OUT was that I did not feel sleepy for
2 days so I got aggressive about addressing this problem.  If you want to read about what sleep deprivation does to your brain read Dean's posts.

Daytime routine.  I avoid caffeine after 10 in the morning and exercising and eating late at night.

Bedroom environment.  I sleep in a dark bedroom with no TV.  The alarm clock is placed where I cannot see it.  Sometimes I wake up and find I am sweating.  After my February freak out I lowered the room temperature because a lower body temperature tells the brain to sleep. 

Preparing for bed.  If I am sleepy at 10 p.m. I go to bed.  If I wake up in the middle of the night at least I have slept for 4 or 5 hours because I went to bed early.  If I am still wide awake at 10 p.m. I go to war. (1) I turn off the TV, wash my face and brush my teeth, and come back to the living room to listen to a calming CD (e.g. sounds of the ocean) for as long as it takes for me to feel sleepy.
(2) While I listen to the CD I assess my body.  If my knee hurts I take Tylenol.  If the constant burning in my foot bothers me I provide a competing sensation by taking a warm gel pack to bed. 

Back up plans.  (1) If I lay in bed and cannot fall asleep, I get up and eat a banana.  Bananas have tryptophan that helps the body make the melatonin that makes us sleepy.  This strategy works only when I realize how long I have been lying awake AND I have the fortitude to get out of bed. 
(2) If I wake up at 3 a.m. to go to the bathroom I do not wait to see if I will fall asleep again.
Before I get back into bed I start a calming CD at a low volume or turn on a fan for a low
background noise. This often helps me fall asleep again.

Fixing Cars and Smart Phones is Easy

Can you imagine auto mechanics trying to fix cars if every car has a slightly different electrical system?  Can you imagine Steve Jobs telling his staff to create a code that is slightly different for every iphone?  Yet millions of years of evolution has done this to the human brain.  The brain anatomy that is taught in schools is a general map - not a blue print for your brain.  Functional connectivity magnetic resonance imaging (fcMRI) can tell us which circuits are used during a task on a particular day, but the brain rewires itself in response to demands.  For example, the brain initially divides a complex task into small actions.  But with repetition, individual actions are rewired into groups that are implemented more efficiently than thinking about each step separately.
Brain plasticity is like cars and phones that rewire themselves after they leave the factory.

I had to decide how to deal with the current uncertainty in stroke rehab.  What has helped me recover is to stop asking how much recovery I will eventually get.  Focusing on short-term goals has been more helpful.  Therapists are required to write short-term goals that are individualized for each client, but do not share them.  Ask about the short-term goals your team is working on. 

However, setting short-term goals does not go far enough.  Therapists need to show stroke survivors how small gains can improve their lives.  As soon as I make a small gain, I try to discover what I can do with it at home and in the community.  Then I tell my therapist about what worked.
I have even brought materials from home to demonstrate what I can do with a new rehab gain. 
I NEVER WAIT until after I am discharged to begin asking what I am getting from therapy. 

Doctors and therapists would stop saying "all strokes are different" if they knew how it feels to be on the receiving end of this statement.  It sounds like an excuse that closes down a discussion of what is possible.  Individual differences in the way brains are wired and the varied location and size of strokes make it difficult for rehab professionals to tell stroke survivors what will happen in the long run, but therapists can talk about what they think is possible now.

Comparing a Garmin GPS to a Smart Phone GPS

I have two superb qualifications for comparing a Garmin GPS to an iphone GPS.  Since my stroke: (1) I cannot hold a map or an iphone in my right hemiplegic (paralyzed) hand and (2) I have driven 150,000+ miles through 15 states without a passenger to be my navigator. 

Both a Garmin Drive Smart 50 GPS and an iphone can be controlled with voice commands if you do not want to type and have a touch screen that lets your fingers move the map and zoom in and out.  However, an iphone GPS has problems with reliability, accuracy, spoken instructions, and road selection.

Reliability.  A Garmin GPS I have used for 11 years has always been able to connect with the GPS satellite overhead.  My iphone has repeatedly been unable to connect with a cell tower so I cannot use the GPS program.  These dead zones also make it impossible to pull up my maps history.  Who memorizes addresses any more?  When I am 400 miles from home this is unacceptable.

Accuracy.  In 11 years I have never been given wrong directions by a Garmin GPS.  My iphone occasionally gives me wrong directions.  For example, when I was driving on Route 138 East,
my phone said "stay on 138 West."  When I am 400 miles from home this is unacceptable.

Spoken instructions.  I have learned to ignore my Garmin when it gives me too much information.
If I know I have to drive 300 miles on a road, I do not need to be reminded to stay on that road every time I cross a major highway.  On the other hand, my iphone GPS has repeatedly not provided critical voice instructions.  For example, I saw a fork in the road but my iphone was silent.  Missing a major road change when I am 400 miles from home is unacceptable.  

Road Selection.  My Garmin Smart Drive 50 allows me to choose any route I want by touching the road I prefer.  This is important because suggested roads have the shortest travel time, but are not rated for the number of idiots on that road.  I am talking about people who drive 20+ miles per hour above the speed limit and who squeeze into a one car length opening only because I step on my brake to keep from hitting them.  By comparison, an iphone GPS chooses 2 or 3 alternate routes.
I do not ever want to drive Interstate 95 through Connecticut again.  A Garmin Smart Drive 50 GPS will make sure this never happens for as long as I live.

The 20 year old who scoffed at me for buying a Garmin GPS probably thinks senior citizens are not up on technology.  He had better be a homebody or be resigned to getting lost in Oklahoma.

An OT Student Asks for 5 Tips

An OT student contacted me by e-mail asking for 5 tips for rehab professionals.  Here are two.

1. Being an OT made me a glass is half full person.  OTs are paid to detect and treat deficits.  When therapists look at me I see them scanning my hemiplegic arm and leg for deficits rather than looking at what I am doing well.  Being a stroke survivor has turned me into a glass is half full person.  Being able to hold objects still so my sound hand can manipulate the object means I can handle over 100 objects even though I do not have individual finger movements.  My balance and leg strength improved enough to let me shower using a folding shower bench.  This means I can travel to visit family and friends who do not have a handicapped bathroom. 

I am not saying therapists should take time during crammed treatment sessions to formally test assets. Yet clinical observation of assets could have a positive effect on expected outcomes.  These observations would balance focusing on low level skills that give clients a low score on a formal test.  If I could treat clients again I would make a short list of tasks a client will be able to do because he or she gained a skill.  I would show my clients that list and ask them which task they want to try to turn from a gain into an asset.  I have never waited until discharge to make the transition from deficit to asset. 

2.  I am NDT certified so I was surprised to learn that a psychological strategy is one of the most important reasons I have succeeded.  My first attempt at a new task or skill usually goes badly.  I am always surprised at how much better I do on my second attempt.  This pattern repeated so many times that I renamed my first attempt a rehearsal.  The purpose of a rehearsal is not to be perfect.  Musicians do not rehearse a new piece of music to make themselves feel bad about the mistakes they make.  The purpose of a rehearsal is to discover what to change to make the second attempt awesome.  I still get upset when a new activity does not go well the first time, but I quickly calm down by reminding myself that this is a rehearsal.

During the early part of recovery clients are often highly motivated because they have high expectations for success.  When a condition does not improve quickly the "honeymoon" phase ends.  The concept of a rehearsal has helped me stay motivated during the long slog that a stroke can require.  I also recommend the concept of rehearsal to OT students.  Instead of cringing when your supervisor watches you perform an unfamiliar procedure, it would help you to stop thinking about your supervisor catching your mistakes and start thinking of your supervisor as someone who is going to tell you how to make your second attempt awesome.

Repetitions Done Incorrectly Can Hurt Stroke Survivors

I was rushing through my exercises and realized I was not waiting for my hand to relax between repetitions.  There is a rationale for doing repetitions without resting.  Unless you are lifting a massive amount of weight, a muscle uses only some of its fibers at first.  If you do not stop to rest, those fibers fatigue so the muscle recruits additional fibers.  This is a good way to strengthen people with orthopedic conditions like a broken hip.  However, exercising this way can impede recovery after a stroke.

As an OT, I watched stroke survivors struggle to relax a muscle on their paralyzed side after they used it.  For example, being able to make a fist and then not being able to open their hand or relax the hand enough so it does not have to be pried open.  It took biofeedback from a NeuroMove device to show me that relaxing a muscle is possible.  I learned to empty my mind and take deep, slow breathes.  In the beginning, I used to stare at the monitor for at least a minute - watching the line showing my muscle activity slowly decline.  The makers of NeuroMove programmed the device to not give me another electrical stimulation until my muscle activity returned to baseline - brilliant!

Bottom Line: Stroke survivors can risk repeatedly using a spastic muscle IF they devote time and effort to learn how to make that muscle relax.  Stroke survivors cannot retrain their brain if therapists insist that they do repetitions without relaxing in between each contraction.

Accepting that a Chronic Disease Never Goes Away Is Not Enough

Accepting that a chronic disease will never go away is not enough.  I am in danger of losing what I have worked so hard for when problems become worse.  I repeatedly have to decide if I am willing to go into battle or I am going to give up and let myself slip into decline.  Stopping regression takes more than good intentions.  It requires the willingness to act again and again without having therapists around to help.  I think a problem is solved and then it's not.  Here is one example.

Several months ago my central pain suddenly became intolerable at night.  Central pain is constant pain created by damage to the central nervous system (e.g. the brain).  Symptoms include constant burning, pain caused by normally non-painful stimuli, shooting or electric shock-like pain, muscle cramps, stinging, tingling, and a pins-and-needles sensation.  These abnormal sensations can be widely distributed but are usually localized to one body part, especially the hands or feet.
I have a constant burning sensation in my hemiplegic foot.

(1) Taking Tylenol and (2) raising the sheet off of my foot used to help me fall asleep.  In the photo I placed a ball outside the covers to show you what the ball under the covers looks like.  The ball creates friction so it stays put and keeps the covers off the end of my big toe all night long.  When these two strategies were not enough to help me sleep I added a 3rd strategy.

(3) Gel packs are heated in a microwave oven.  WARNING: Gel packs heat up very quickly and are deceivingly cool at 1st touch.  I heat the gel pack for 25 seconds on High because a stroke took away my ability to tell the difference between hot and cold in my hemiplegic leg. To safely remove the gel pack from the microwave and transport it to my bedroom, I put it on a stiff paper plate.  I place the gel pack NEXT to my hemiplegic foot rather than under or on top of my foot. The gentle heat gradually extinguishes the burning sensation in my foot so I can fall asleep.

Neurologists have known about the extinction phenomenon for decades.  Two sensations can sometimes cancel each other out.  This is why you rub a painful body part that has bumped into an object.  Ben Gay cream works because it has Capsaicin which produces a mild burning sensation that cancels the awareness of muscle pain.