August 16, 2016

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.

August 4, 2016

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) When I cannot fall asleep while I am lying in bed, I try tapping for insomnia.  This only works when I am ruminating about something that happened during the day or I am worried about something that will happen tomorrow.  I do not know if stimulating the energy lines in the body called meridians is real, but tapping makes me focus on my body and the affirmations I am thinking about.  (2) If I still cannot fall asleep, I get up and eat a banana.  It has 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 have the fortitude to get out of bed.  (3) 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.  I often fall asleep again.

July 25, 2016

Fixing Cars and Smart Phones is Easy

Can you imagine auto mechanics trying to fix cars if every car manufactured 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.  With repetition, those individual actions are rewired into groups that can be implemented more efficiently than thinking about each step separately.  Brain plasticity in humans is like cars and phones that rewire themselves after they leave the factory.

Researchers are finally responding to the complex issues of retraining the brain.  For example, the
SOPHIA project is testing a dynamic hand splint that has robotic assists and sensors that give subjects visual feedback about their hand movements while they play a very simple game on a computer.  These components (dynamic splints, robots, gloves with sensors, computer games) have been studied separately, but I think a more complex solution is needed.

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.  Stroke survivors can show therapists how small gains improve our 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. 

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 currently make it difficult for rehab professionals to tell stroke survivors what will happen to them in the long run, but therapists can talk about what they think is possible now.

July 16, 2016

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.

July 6, 2016

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.

June 26, 2016

Orthopedic Treatment 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.

June 16, 2016

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.

June 3, 2016

Adaptive Garderning After a Stroke

All anti-depressants do not come in a pill.  When I started gardening in my twenties, I discovered the joy of putting my hands in dirt and watching plants grow.  So I am very glad I found a way to garden after my stroke.  However, I do not remember the tricks I discovered last year so this spring I took photos at each stage and described ALL OF MY TRICKS.

At first I pulled plants loose from the soil when I pulled them out of their containers one-handed.  I learned to let the plants dry out a little.  The roots release more easily if the soil is dry.  The photo shows a child size spade that I slide down the sides of each container to loosen the roots.  

I use a big plastic pot that is lighter than clay and does not dry out quickly.  After I partially fill the pot, I put a ring on top of the dirt.  I made this ring out of a disposable plastic cutting board.  The ring keeps plants away from the rim, gives me something to lean the 1st row of plants against, and lets me see if I have filled the pot to the right level.  A small cup gives me good control when I fill the narrow space between the edge of the pot and the ring.  Then I arrange the flowers inside the ring, making sure the plants are touching each other so they will grow into a thick ball of foliage that prevents water evaporation.  Once I get the plants where I want them, I drop fistfuls of dirt in the small spaces between the plants.  I leave the ring in the pot until I am done.

Watering compresses the soil so the roots make good contact with the soil.  I use my hemiplegic (paralyzed) hand to hold the watering can still so it will not tip over as I fill it with the hose. 
I use the garden hose to wash off the dirt I have spilled on my concrete patio. 
I transfer the pot to a bench that sits next to the chair that I sit in to watch the sunset as I drink a cup coffee.  I also get to see beautiful flowers every time I come home.                            P.S. Rebecca, you only need five 4-packs.

May 26, 2016

All Clients Do Not Use Their Rehab Gains

The effects of OT treatment on hand use in stroke survivors was measured by an accelerometer worn on the wrist for 24 hours at home and the Action Research Arm Test (ARAT) (1).  ARAT evaluates the ability of the hand to touch the head and mouth, move a ball, pour water in a glass, and place a washer on a bolt.  Two clients had a significant increase in hand use as measured by wrist accelerometers and increased ARAT scores.  What breaks my heart is that four clients improved significantly on the ARAT, but accelerators showed they had little increase in wrist movement at home.  OTs increased manual skills, but four clients did not use it. 

Unfortunately, using wrist accelerometers requires special knowledge of math formulas and interpreting complex histograms.  A more practical way to encourage carry-over is to talk about hand use at home.  For example, the Motor Activity Log-14 (MAL-14) is an interview that asks about hemiplegic hand use at home during 14 activities of daily living tasks (2).  Clients' self-rating* of Quality of Movement (QOM) on the MAL-14 and wrist accelerometer readings had a good correlation (e.g. both improved).  QOM ratings* and accelerometer readings correlated 0.7 on a scale of 0 to 1.0 at baseline and 0.9 for changes from baseline to discharge (2). 

OTs see lots of Level 2 behavior*, but moving very slowly or with difficulty is unacceptable when
I want to complete a task at home or I am tired.  So my OT wanted to move on as soon as she saw that a therapeutic task was becoming easy for me.  I asked her to let me do more repetitions because  I was just beginning to experience flow.  Flow is a term psychologists use to describe a task that is enjoyable. To get carry-over at home, therapists may need to aim for at least Level 3.

Unfortunately, many tasks on the MAL-14 are high level, like writing and buttoning.  Asking about QOM on easier tasks could be done. See my posts Getting Hand Use Earlier Than You Think is Possible and Cooking is Therapy for My Hand.

*  0 = Weaker arm was not used at all, 1 = Weaker arm moved during task but was not helpful,
    2 = Weaker arm was of some use but needed help from stronger arm OR moved very slowly or
           with difficulty,
    3 = Weaker arm was useful but was slow or required only some effort,
    4 = Movements of weaker arm were almost normal but were not quite as fast or accurate  
    as normal, 5 = Weaker arm was normal.

1. Doman CA, Waddell KJ, Bailey RR, Moore, JL, Lang CE. Changes in upper-extremity functional
    capacity and daily performance during outpatient occupational therapy for people with stroke.
    American Journal of Occupational Therapy. 2016;70(3):290040p1-290040p11.
2. Uswatte G, Taub E, Morris D, Vignolo M, McCulloch K. Reliability and validity of the upper-
    extremity Motor Activity Log-14 for measuring real-world arm use. Stroke. 2005;36:2493-2496.

May 17, 2016

Getting Hand Use Earlier than Stroke Survivors Think is Possible

Current hand tests begin by asking clients to pick up small objects from a table.  If hand-to-hand transfers were added to adult hand tests, stroke survivors would see that their hemiplegic (paralyzed) hand can be useful earlier than they think is possible.  After an electrical stimulation device called NeuroMove helped me regain a little finger extension, I learned that those small movements done close to the body can make a hand functional.  If you pick up an object with your sound hand and open your hemiplegic hand 2-3 inches to receive the object from your sound hand
you may be able to do the tasks shown below.  This simple skill allows me to do 18 ADL tasks.  
Example #1- Using a shower hose to spray water at the crotch does not take care of the nooks and crannies.  After a hand-to-hand transfer, my hemiplegic hand holds the shower hose close to my body which frees my sound hand to do its job.  This little bit of hand movement means my mother, a nurse's aide in the Intensive Care Unit, and I are the only people who have washed my bottom.  Having my privacy invaded in such a personal way taught me to be grateful for hand-to-hand transfers.  
Example # 2 - When my hand was flaccid, I used to squeeze a deodorant bottle between my thighs so my sound hand could remove the cap.  Now my hemiplegic hand can open to receive a deodorant bottle from my sound hand during a hand-to-hand transfer and hold the bottle still while it is resting on my thigh.  The two black lines show how little shoulder movement is needed when ADLs are done close to the body.

Example # 3 -  There used to be teeth marks on the cap of my toothpaste tube.  Now my hemiplegic hand can open to receive a tube of toothpaste from my sound hand which then removes the cap.  The end of the tube is propped against my stomach because this new tube is heavy.  I do not want to drop the tube and splatter sticky toothpaste on the floor.  I live alone so I have to clean up every mess I make.