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

I Just Want to Cry

Doman (1) studied the effects of OT treatment on hand use in stroke survivors.  Increased use of the hand was measured by an accelerometer worn on the wrist for 24 hours at home and the Action Research Arm Test (ARAT).  ARAT evaluates the ability of the hand to touch the head and mouth, move objects like a ball and marbles, 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 movement of their hemiplegic arm 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.

May 4, 2016

Grateful My PT Taught Me to Squat

I did NOT do this
I am glad my in-patient PT made me squat while reaching down with my sound hand to pick up plastic cones sitting on a low stool and place the cones on a shelf at head height.  She did NOT have me squat deeply like the body builder in the photo.  She had me
do a partial squat while leaning over to reach close to the floor. 

At first I loved squats because I felt safer when both feet were on the floor than when I had to repeatedly stand on one foot while walking.  When I learned how useful squats are I asked my PT to let me do them every day.  The list below shows the value of this basic skill I took for granted as an able-bodied person.  I have used this skill thousands of times in the 12 years since my stroke.
NOTE: Reaching for objects overhead is dangerous when I drop the objects on my head.

  A partial squat makes me more stable when I lean down to:
* Pull up my underwear up after toileting
* Pick up my cane after it has fallen on the floor for the thousandth time! 
* Get clothing out of the bottom drawer of the dresser
* Get shoes from the floor of the closet
* Get a milk carton sitting on the bottom shelf of the refrigerator
* Get a box of cereal from the bottom shelf of a kitchen cabinet
* Get a pot from the bottom shelf of a kitchen cabinet
* Place and remove dishes from the bottom rack of dishwasher
* Get a box of dishwashing detergent from under the sink
* Pull bed linen straight when making the bed
* Take a book from bottom of book shelf
* Plug a cord into a low electrical outlet 
* Pull clothes out of the dryer
* Fill a watering can with the garden hose
* Empty a waste basket
* Pickup a large bag of garbage I kicked down my stairs to put the bag in the garbage can
* Pick up purchases sitting in the trunk or on the floor of my car

April 26, 2016

My GPS is an Ideal Spouse

I am taking a road trip to present at an OT conference so I am getting ready to use my GPS. 
I need a GPS because this trip requires me to use five different Interstate highways.  Highways
in the Northeast are a maze of meandering roads that were mapped out before the age of cars.
A highway built on the open land in the rest of the U.S. can go on forever.  Interstate 80 that goes from New York to San Francisco is 2902 miles long.  With many different highways on this trip,
I need my GPS to tell me "turn right in 400 feet at Exit 29B to Monroe."  I feel confident when I
see a sign that says "Monroe Exit 29B" a few seconds later.

I call my GPS the ideal spouse because it never gets distracted and then blames me by saying "you should have turned left back there."  If I decide to make a detour the GPS obediently says "recalculating."  After the GPS says "drive 268 miles to Monroe" it stops talking for 266 miles.

April 16, 2016

Teach Us to Turn in the Kitchen

Walking in straight lines in the PT gym and walking around the block at home did not prepare me for the problem solving I need do while walking.  After I got home from rehab I had to teach myself to safely turn 180 degrees after shutting the bathroom door and again when flushing the toilet.  

Here is another example.  The photo shows the turns I take to prepare a glass of iced tea and a bowl of cereal with a sliced banana for breakfast.  After I fell and broke my forearm while turning I got scared.  I learned to take itsy bitsy baby steps until I complete a turn before taking normal size steps in the new forward direction. 

Help is emerging.  Chen trained stroke survivors on a straight OR a turning-based treadmill (1). Clients on a round treadmill held onto parallel bars while they walked in one place as the treadmill turned underneath them.  Subjects who trained on the turning-based treadmill were significantly better at turning.  Turning away from a counter is done by stepping backwards as you turn so feedback about how far away from vertical you have stepped is crucial.  Balance information from the inner ears is important when vision cannot help.  Paradoxically, the turning-based treadmill group also walked significantly faster in a straight line.  Perhaps walking on the turning treadmill forced clients to be more vigilant about where to place each foot so walking in a straight line was easy by comparison.  PTs and OTs need to incorporate these findings into clinical practice.  

1. Chen, I, Yang, Y, Chan, R, Wang, R. Turning-based treadmill training improves turning
    performance and gait symmetry after stroke. Neurorehabilitation and Neural Repair. 2014;28

April 3, 2016

Carts Keep Me and My Stuff Safe

The photo shows I do not use a cart to transport objects a long distance in my small kitchen.  However, the cart saves me from making numerous consecutive turns.  For example, when I bring home groceries, the food that goes in the refrigerator is scattered in several shopping bags.  I collect cold items on my cart, push the cart to the refrigerator, and stand in front of the open refrigerator.  I use my sound arm to transfer objects from the cart to the refrigerator shelves - no turning and walking back to collect the next item and turning to face the refrigerator again.

How does standing still as I transfer objects keep me and my stuff safe?  1) Turning can be stressful for the knee when it is not done correctly. 
2) Turns increase the chance of a fall because turning is more difficult than walking in a straight line.  3) Maintaining my balance while turning is a challenge that distracts me when I carry an object.  It is aggravating to have only one hand to clean up a broken dish or food that I dropped.

If you have two good hands to carry a stack of plates, bowls, or pots, you can take fewer trips to put away dishes.  These stacks are too much weight for one hand.  So I use a cart to unload my dishwasher.  I transfer clean items to the cart and push the cart to various storage areas.  As I stand in front of a cabinet, I pick up and place dishware in the appropriate place.  I am not going to turn repeatedly to carry one dish at a time to where it belongs!

 A cart allows me to bring a meal to the table in one trip.  Here I am       3 months after my stroke serving myself a cold lunch.  When I got tired of eating frozen dinners heated in the microwave I started cooking.  It took 3 more months before I had a cooked dinner ready to transport to the table.  Initially I cooked one food, ate out of the pot, and then cooked the next food.  The day I put three kinds of cooked food on a plate was a triumph.  Now that I cook regularly the cart keeps me from burning my hand on a hot dish or spilling hot food while transporting it. 

Two final reasons to love carts - a three-tiered cart allows me to sort my dirty laundry by color while sitting instead of repeatedly leaning over and standing up.  This cart helps me safely transport dirty clothes to my 1st floor laundry room.  Laundry does not start with loading the washing machine!  I also use this cart to transport my large box of Christmas decorations to my couch from the closet where the box sits on an accessible shelf.

P.S.  I am sitting on a folding metal chair that stays out of the way when I store it behind an open door.

March 28, 2016

Astronauts & 1900's Women Get Surviving Stroke

Before I had a stroke I would have found my post "9 Things I Have to Do to Drive Independently" obsessively tedious.  I know of only two groups of able-bodied people who can understand what you have to do to thrive after a stroke.

Astronauts.  Astronauts understand the conscious attention stroke survivors have to pay to familiar tasks that able-bodied people do without thinking.  As I watched astronaut Scott Kelly demonstrate cooking and eating dinner on the International Space Station, I saw that he had a problem.  He repeatedly dropped food because his hand forgot you have to attach an object to a surface or it will float away.  To be fair, Scott was distracted by having to look towards the camera and explain what he was doing.  I am sure he performs better when he does not divide his attention.  I think he would understand why stroke survivors do not perform well when they try to multitask.  I also think the months of practice Scott did on Earth would help him understand how hard it is for stroke survivors to relearn to do even simple tasks.

Urban Housewives in 1900.  If women in 1900 could have read the nine things I do before I drive my car away from the curb, they would have said "welcome to my life."  They knew about spending lots of time getting ready to do a task.  For instance, before they could start doing laundry they had to do three chores.  1) They had to soak clothes the day before because cleaning agents were not very effective.  2) They had to hand carry 20 to 40 gallons of water from the sink to a large copper vat where the clothes were washed.  3)  They had to wait for the coal fire under the copper vat to heat up the water.  Only then could they start agitating the clothes by hand with a four foot long pole called a dolly stick. 

Here is a re-enactment of doing laundry in 1900 from the PBS TV series, The 1900 House.