Taming the Beast Called Frustration

Frustration never stops appearing after a stroke.  For example, it is REALLY TEDIOUS to peel a hard-boiled egg one-handed (Grrr!!). Once again my frustration propelled me to find a solution. 

Step #1: Place a cold hard-boiled egg in warm water to make the shell expand and pull away from the egg.











Step # 2: Dry the egg with a paper towel.  Place the egg on a paper plate to catch the bits of shell as you repeatedly smack the egg against the counter.









Step #3: Remove the egg shell which comes away in small sheets.  Rinse the peeled egg with water to get rid of the small bits of shell.  Dry the peeled egg with a paper towel.



You do not have to grind your teeth while peeling Easter eggs.

Safety Precautions Rocket Me to Independence

Precautions that facilities use to keep people safe propelled me to independence.  In the rehab hospital I made the mistake of wheeling myself out to the patio when I was done with therapy for the day. The aide who was sent to find me said I could not sit outside alone.  When I pointed to people who were sitting alone she whirled my wheelchair around and took me back to my room.  The last time I was dragged inside I was probably three years old.  A psychologist brokered a compromise.  I could sit outside if I came back upstairs and wrote down where I was going on a clipboard. The psychologist said the staff were afraid I would wander off if they let me go outside. Did the aides tell anyone I had been reliably transporting myself to and from therapy for days? 

Safety precautions are good.  The problem is staff who rigidly apply precautions to everyone. 
Did anyone read my chart to learn I had a stroke in the brainstem instead of the brain?  I was treated like my roommate who was so confused she tried to use the TV remote as a telephone.  The staff attached a sensor to me at night to keep me from getting out of bed.  Every time I rolled onto my side I triggered a very loud alarm and had to wait for an aide to come shut it off.  When I finally complained a nurse said they would stop using the sensor if I signed a release form saying they were not liable if I fell out of bed.  How long they would have used it if I had not objected? 

When I toured an assisted living facility I was upset again by procedures designed to keep people safe.   While the director gave me a tour she said 3 or 4 times that "elderly people prefer to have a nurse give them their medication."   If the assisted living staff decided it would be safer if the nurse dispensed my pills, my day would revolve around visits to the nurse because I take pills four times a day.  I saw the nurse handing out pills in a snack area where people who did not want to go to breakfast where waiting.   I am not really living in an apartment if the nurse can open my door with a master key to give me my pills when I decide to sleep in.

Being treated like a senile 95 year old turned out to be a blessing in disguise.  I am not sad that I use a cane and leg brace and print checks with my non-dominant sound hand.  I am grateful that compensatory strategies make me independent enough to live in my own home.

Verbal Versus Procedural Knowledge

Stroke survivors with aphasia are frustrated.  Aphasia is the inability to understand the spoken word and/or to express oneself verbally.  Yet aphasic clients may retain another kind of knowledge called procedural knowledge.  This is the ability to learn, remember, and execute the steps of a task that often requires visual information.  We do not talk ourselves through the steps of tying shoelaces or cutting up a whole chicken.  We remember what the steps look like and what our hand is supposed to do.  Fortunately visual information is stored in a different location than language so it may be spared after a stroke produces aphasia.    

While STs help stroke survivors work on improving their verbal skills other therapists need to communicate immediately.  It is easy for PTs to communicate because everything they do is aimed at helping a stroke survivor walk.  PTs explain this goal without saying a word.  I went to PT and exercised, walked, and rested.  When I came down after lunch I exercised, walked, and rested.  This routine repeated every day I was in the rehab hospital so I did not need to ask why my PT
had me slide a towel on the floor with my hemiplegic (paralyzed) foot.

OTs have a harder time telling aphasic clients what we are doing because we work on so many different ADL goals.  It might help if the OT used pictures to show that a towel sliding exercise will make it easier to move the arm to put on a shirt so the client can join the family for dinner.  If clients want to go home to eat a home cooked meal I am pretty sure they are not picturing themselves eating in bed wearing sweaty pajamas while the family eats at the dinning room table.  Printing out clip art or photos may help aphasic clients understand what OT is doing to help them.

Salesmen do not close the deal unless they offer customers something they want.  Guessing what will motivate a client is risky.  Better to show an aphasic client a notebook with pictures of hugging a child, petting a cat, sitting on the patio, etc.  It would be ideal if the family could bring in photos of activities the client enjoys.  Good salesmen watch a customer's face to see what makes his or her face light up.

Hand Function Comes From My Gut, Part 2

When you reach forward for an object that is out of reach the shoulder blade helps by sliding forward (scapular protraction). Scapular muscles are attached to the rib cage.  Abdominals keep the rib cage still so scapular muscles have a steady home base.  With weak stomach muscles, my shoulder flexors relied on help from the long head of the biceps which crosses the shoulder joint.  I repeatedly got tendonitis.  My biceps tendon used to swell so badly it made a popping sound when it slipped out of its groove.

I wonder how much faster I would have progressed if my OTs had worked on abdominal strength.  I do not blame my OTs.  As an OT I do not know of a motor theory for treating stroke that links hand function to core muscles. 
Yet athletes who need superior arm strength, like weight lifters and javelin throwers, know how important abdominal strength is to upper extremity performance.  Stroke survivors exert this same kind of extreme effort when they lift their arm with paralyzed muscles.   Don't believe me?   Therapists use two hands to lift a paralyzed arm so even people with normal strength are challenged when lifting all that dead weight.

Strengthening my abdominals was not enough.  Connections in my brain that link arm and abdominal movements are damaged.  The moment I focus on lifting my arm to reach for the ceiling my right hip drops lower than my left hip.  I must switch my focus to my abdominals to get my right hip back up where it belongs.   I am not discouraged.  I have beat this kind of failure before.  My hand used to drop objects.  Concentrating fiercely on keeping my hand closed was not enough.  My brain had to build new connections that make my hand stay closed when I focus on an object.* 

* I have always known where my fingers are when a therapist moves them while my eyes are shut.  This traditional test of proprioception does not assess the automatic sensory awareness people need.  I cannot manipulate an object if I have to keep track of what my fingers are doing.

Reheating Food Safely

Warning: Using a microwave oven requires safety awareness.

You might wonder why a stroke survivor would use plastic wrap when it gives people with two good hands a run for their money. 
The problem with family or friends leaving a dish for a stroke survivor to heat up in the microwave is that the thumb knocks the lid off when you pick up a dish one-handed.  Heating uncovered food in the microwave makes a mess. 

When I take a hot dish out of the microwave my sound hand is protected by a hot mitt and my hot mitt is protected by plastic wrap.  Before I started using plastic wrap I had to wash my hot mitts repeatedly.  The mitt would get dirty when I slid my thumb into the dish so I could get a firm grip on the edge.

Go on-line to see the  "food wrap box."  It cuts the plastic wrap in one blow when I shut the lid.  Stretching the wrap over the dish is easy too.  I place the box next to the dish.  As I pull the plastic wrap out, the weight of the dish holds the food wrap box still.

Using plastic wrap also means I do not need a food strainer.  I use a hot mitt on my sound hand to hold he dish over the sink to let the water drain out.  See the arrow pointing at a flap of plastic wrap that is open?  I did not do this. The water did it for me.  I lose a couple of pieces of small food now and then, but keeping my sound hand safe while handling hot dishes is priceless.  For more cooking ideas see Cheap Devices That Prevent Cooking Spills.

Snow and Strokes Do Not Mix Well Together

I grew up in Chicago where the schools were closed only two times in twenty years for snow. In the twenty-five years I have lived in New Jersey I have been telling the wimps who complain about bad weather that in Chicago they throw a first grader out a first story window when it snows.  If you can see the top of the child's head school is open.  But I have never seen snow like this winter in New Jersey.  We have had a major snowstorm every week for six weeks.  When I saw big pile of snow blocking my car I panicked.  The photo does not do the pile justice -- it is eight feet long and three feet high.  The shadow you see on the far left is my car.

When I lived in the city, going to work involved digging my car out of the snow cave the snow plow created by pushing snow up against the side of my car.  Coming home from work meant finding or creating a snow cave big enough for my car.  Fortunately my trailer park has its own maintenance staff.  Our maintenance man uses a backhoe to move snow that has piled up.  See the snow piled on my lawn that Joe did not cart away.  Moving a big pile of heavy, wet,     ice-encrusted snow is too much even for an able-bodied caregiver.

Fall Hazards Are Subtle

Babies learning to walk do not get hurt when they fall because they are 18 inches (45 cm) tall.  When I fall I go crashing to the ground like a tree that has just been cut down.  Stroke survivors with impaired balance need procedures and equipment that prevent falls.  It's the small things we do not pay attention to that trip us up.  I do not fall because I crash into my sofa.  I fall when I do not lift my hemiplegic (paralyzed) leg high enough to stop my toe from catching the edge of a rug which lifts the rug up. The rugs in the photo keep the floor dry when people at church track in rain and snow.  I have fallen when my toes caught the edge of this type of rug.  I learned the hard way to look down to see where the edge of the rug is before I step onto it. 

Another procedure keeps me safe at bedtime.  I rely on my vision to tell me if I am vertical.  If I turn around after I darken a room by turning the lamp off I stumble badly.  I quickly learned to make sure I am turned to face the lighted room I am heading towards before I look down to find the light switch.  It's a relief to find the lit room as soon as I look up. 

If these procedures sound trivial, let me tell you about a stroke survivor who could have ended up in a long-term care facility because of a bad fall.  He has impaired balance so the hospital staff gave him a long-handled reacher so he would not lean over to pick up objects on the floor.  But using a reacher at home was frustrating.  If he was downstairs the reacher was upstairs.  If he was at one end of the house the reacher was at the other end of the house.  This repeated aggravation tempted him to reach down to pick up something even though he knew it was not safe.  He fell and broke his sound wrist.  When he finally got back home he bought three more reachers.  A reacher is always close because he has two reachers per floor with one at each end of the house.

I learned not to let subtle fall hazards lull me into a false sense of security because they do not make me fall every time I encounter them.  Are there hazards in your home you are not paying attention to, like a poorly lit front porch or extension cords snaking across a room?

Hand Function Comes From My Gut

I learned hand function comes from my gut when a PT had me do abdominal exercises after back spasms returned  (Back Pain + Stroke = Disaster).  I was surprised to feel abdominal muscles on my paralyzed side burning from effort while I felt only a gentle contraction on my sound side. 
I was amazed to discover the arms need strong stomach muscles.  When I lift an arm, abdominal and back muscles must work to keep my trunk still so I will not fall over as the weight of my arm moves far from my body.  After doing the exercise below for awhile it got easier to lift my hemiplegic arm to get my hand to an object.

My PT taught me to do leg lifts with knees bent.  I decided to intensify the workout.  I clasp my hands together, lift both arms over head, and do a partial sit-up by lifting my head and twisting to the left until my right shoulder blade lifts off the bed.  I do 10 reps to the left and 10 to the right.  Before I move I press my low back against the mattress and take a deep breath.  As I move I slowly let my breath out through pursed lips.  Holding my breath would increase my blood pressure. 

But there is a catch - I had to do the exercise correctly to feel abdominal muscles on my paralyzed side burn for months.  Dean cites a study that found stroke survivors who received real-time video feedback about how they did abdominal exercises improved their walking significantly more than clients who did not get feedback.  My PT had superb clinical observation skills and the ability to teach.  Instead of telling me how many reps to do and walking away she stayed and gave me verbal feedback on what I was doing wrong. 

A 2nd catch is consistently doing a new exercise.  After getting up to go to the bathroom I get back in bed to do back and hand exercises while my muscles are still toasty warm.  So I added this abdominal exercise to my morning routine.  You would not be able to see what I am doing because I do it under the covers.

I Would Go Stark Raving Mad

My hemiplegic hand helps my sound hand do over 100 different tasks.  However, I am often slow or do a modified version of the task.  Despite my self-confidence, dozens of people have offered to do a manual task for me.  A few have even taken an object out of my hand.  Able-bodied people know it is easy for them to quickly manipulate an object -- so why should I do it if they are there?  My response when people offer to help when I do not need it is "I can do it myself, but thank you for offering."   When I say this I always make sure to smile and look them in the eye.  This is a nice way to acknowledge their good heart without embarrassing them when I reject their help.

Yet nine years after my stroke I see that this small group of insistent people will always be there. 
After I use the "thank you " response I am going to try a second-tier response to more forcefully rebuff these people.  I am going to say "If I lived in a facility that took me to Wal-Mart once a week
I would go stark raving mad.  Do not take away the independence that keeps me in my home."  

I honestly do not know how handicapped children ever become independent adults. 

Getting Early Recovery

PTs do not start gait training by asking clients to lift their hemiplegic (paralyzed) leg in the air and then move their ankle and toes.  Yet classic hand evaluations like the Fugl-Meyer Assessment tell OTs to ask stroke survivors to sit and lift their hemiplegic arm up to table top height to pick up an object resting on the table. There is a problem with evaluating early hand function this way.  When a stroke survivor struggles to lift a paralyzed arm, high muscle tone can cascade down the arm and make the hand too tight to open to grasp an object.  



Hand-to-hand transfers can promote early hand use because the hemiplegic hand is held close to the body as it opens to accept an object from the sound hand.  Notice how small the shoulder angle is when objects are close to the body.  This angle is similar to the angle PTs expect from the hip when clients walk.  Finally letting the thigh take some of the weight of the bottle promotes early success.  The hemiplegic hand only has to keep the bottle still as the sound hand takes the cap off and puts it back on.  Modifying tasks so clients can succeed is a good way to change everyone's expectation of what is possible.  On the first day in rehab I walked the full length of the PT gym with the help of three people.  I did not dismiss this early attempt because it was a modified version of my end goal.  See Small Motions Make My Hand Useful for more ways to use hand-to-hand transfers.