February 18, 2018

Do Not Go Gently Into That Good Night

An OT told me about a client in a nursing home who wanted to get off the toilet line.  The toilet line is for people who have to wait for two aides to transfer them on and off the toilet.  The client wanted to get off the toilet line so badly that it took her only 2 months to learn how to use her artificial leg again so she could walk into the bathroom.  This story breaks my heart twice.  First because it confirms my worst fears about nursing homes.  I can hear the staff telling this woman she would feel much safer in a wheelchair.  Second, I thought about how her fierce determination might have kept her at home longer.  Her story reminded me of Dylan Thomas's poem.

Do not go gently into that good night
Old age should burn and rave at close of day
Rage, rage against the dying of the light

My rage was triggered recently when someone tried to take away my independence.  Women at my breakfast club gave out small gifts before Christmas.  To make it easier to take the gifts home I put them in a bag that came with one of the gifts.  The photo shows the hook on the Christmas ornament that kept getting caught on the handle of the bag.  As I was struggling I saw a hand reach across the table.  The hand disappeared when the rage I felt showed on my face.  I should have said "I'm not a young child playing with a sharp knife so I expect you to ask 'may I help you?' instead of trying to grab this out of my hand."

When I say no to "grabbers" who want to do something simple like open a pillbox they always respond by saying it is so quick and easy for them to help.  Exactly!  Fortunately friends and family have done difficult things that allow me to live alone in my home.  One example is my friend Arlene who offered to take me into her home when I left the rehab hospital.  It took 3 months for me to sell my house with one bathroom on the 2nd floor and buy a one-story home.  I try not to think about where I would have ended up without the help I really need.

February 10, 2018

Retirement Is a Challenge

I did not appreciate a predictable routine until I lost it when I retired.  Having to decide what to do every minute of the day can be exhausting.  Two morning tasks make getting up a pleasure.  Starting my day without having to decide what to do when I am half awake is not a small thing.
I am not a morning person who wakes up the minute my feet touch the floor.

The first task is making a cup of coffee.  Initially my cooking skills were awful.  When I got home after rehab I ate frozen dinners heated up in the microwave.  After getting bored with the limited selection I got the courage to cook real food.  The challenge of learning how to cook one-handed and also keep track of the sequence of steps I needed to follow was exhausting.  So I cooked one dish and ate it, cooked the next dish and ate it, etc.  After three months of learning a new way to cook I got all the food on the plate at one time and sat down to eat a meal like a normal person.  Now I can make a cup of coffee without giving a moments thought about what I need to do.  Watching myself sail through a cooking task like I did before my stroke still gives me JOY.
And of course - I look forward to that cup of coffee.

The second morning task I enjoy is doing a crossword puzzle while I drink my coffee.  Puzzles in the newspaper are too easy so I bought a crossword puzzle-a-day calendar.  After Monday and Tuesday the puzzles get really hard.  I have no interest in remembering the first name of a golfer named Ballestero, the name of a punk rock subgenre, or which movie won an Oscar for best picture in 1972.  I get insanely hard answers from the backside of the puzzle which allows me to keep going.  This means I can finish the puzzle without being frustrated.

February 2, 2018

How I Know When I Need to Ask for Help

Reading instructions for how to submit a DNA sample triggered the thought process I use to decide if I need to ask for help.  My pre-stroke experience is not helpful because when I was able-bodied I had zero awareness of how I used both hands during many tasks.  So the first time I do a new task goes badly.  Yet I learned to never let my first attempt determine if I give up or keep trying.  I make a final decision to persevere or ask for help based on my learning curve -
how quickly I get better with each rehearsal.

Another strategy for deciding when to ask for help is how severe the consequences are if I fail.  I do not have to get up on a ladder to change the batteries in my smoke detectors to realize this could produce a very bad fall.  My friend John is glad to do this dangerous task for me.  And when I read the instructions for a DNA test I learned I would have to screw a tiny cap on a tiny tube so none of the blue fluid would leak out when I vigorously shake the contents.

I thought about the strategy I use to hold a tube of mascara while I remove the mascara wand.  But the cost of spilling the DNA test is high.  If I mess up I will have to pay $99 to buy another test kit. My friend Peggy was happy to do this tricky two-handed task for me.

January 28, 2018

The Zipping Challenge is Not What You Think

Velcro tabs do not keep me warm.  When I sit, gaps form between the Velcro tabs which lets body heat escape.  So I learned to zip my winter coat.  I was surprised to learn the hardest part is NOT grabbing the zipper tab.  The step that requires skill only my sound hand has is holding the bottom of the coat with three fingers in a 3-jaw chuck grasp.

The photo on the right shows that holding the bottom of a coat requires two separate skills.  First, my index finger on the bottom of the coat must keep the two ends of the zipper perfectly aligned after they are joined.  Zippers do not work when they are not perfectly aligned.  Second, my thumb and middle finger must pinch the bottom of the coat to hold it still while my hemiplegic (paralysed) hand pulls the zipper tab up.  Some stroke survivors never recover this kind of individual finger control.

Task modification makes grasping the zipper easier.  Before zipping I: 1) don a rubber finger cot used to sort money to get better traction,
2) rehearse pinching my thumb and index finger together to wake up muscles so these two fingers can grab 3) the small piece of fabric attached to the zipper tab (see the white rectangle above).  The fabric is less slippery than the metal tab.

However, my hemiplegic hand can pull the zipper tab up only two inches.  Going higher requires bending my wrist into flexion.  This is how police force suspects to open their hand and drop a weapon.  After two inches, I switch so my hemiplegic hand is holding the bottom of the coat while my sound hand finishes the zipping. 

January 20, 2018

A Skill That Shapes My Stroke Experience

My friend Peggy has a skill I am grateful for.  For example, I told Peggy my days of searching for objects in my purse are over.  After a short pause she said oh right - "you need one hand to hold objects out of the way so your other hand can dig for what you want."  I told Peggy I cannot use the middle seat of her van because I cannot sit on the edge of the seat and slide my body into the vehicle.  After a short pause I heard Peggy say "oh" as in "I understand."  There is nothing for me to sit on when Peggy opens the sliding door because the short middle seat leaves room for people to walk to the back seat.  I would have to climb into the van with nothing to hold onto and then sit down on the seat.

Along with her caring heart, visual-motor skills make Peggy a God-sent when I ask for help.  She correctly guesses my dilemma because she sees a picture in her head and analyzes how I would have to move in that environment.  I am a visual-motor learner so it is a relief to talk to a person who has this same ability.  Without having a stroke, Peggy can see what will help me the most without my having to describe my problem in detail.

OTs call this type of analysis "person-environment fit."  Acquiring this skill as an OT changed the trajectory of my stroke experience.

January 11, 2018

Update on Urinary Incontinence

There is a stroke issue I have never shared with doctors, family, or friends - urinary incontinence.  After I feel the urge to urinate, I have 5 minutes to get to a toilet before I begin to slowly leak urine no matter how hard I squeeze my muscles.  I manage this problem by memorizing the location of every bathroom in the places I visit in the community.

What puzzled me is that I lose control only when I am 2 feet from the toilet.  I tried squeezing my muscles tightly as soon as I make the decision to go to the bathroom.  This strategy did not work during the final 2 feet.  Then I tried the opposite - thinking calming thoughts so I would not panic.  This also did not work.  Then I realized when I am talking to a person the urge to urinate goes away.  So I started picturing myself talking to an employee at the help desk located at the front of my grocery store.  There is NO WAY I am going to pee on myself in front of all the people entering the store.  To my surprise, creating this visual image gets me the last 2 feet to the toilet without fail.  What neurological pathway fires which allows a visual image to control a urinary sphincter muscle?

January 2, 2018

Snow Shoes for a Stroke Survivor

Since my stroke I am careful about venturing outside when it snows, but I am not trapped inside until spring comes either.  I never walk on snow covered concrete because slippery surfaces are a fall hazard.  Once streets and sidewalks are clear I wear boots over my shoes to protect them from the slush and give me better traction when it is icy.  Boots also help when my car is covered with snow.  Dragging snow off my car dumps snow on my boots instead of my shoes.  Boots I tried on at a shoe store would not fit over my leg brace.  My leg brace does not allow me to point my toes which is a pre-requisite for donning boots.  On-line I found the Neos overshoe with a Velvro opening that goes all the way down to my toes.  The Villager model is lightweight and designed for occasional use which is perfect for me.

A video at www.overshoesonline.com shows how to don this boot.  Warning #1: I do not put the boots on while standing as the video shows because I do not have good standing balance.  My boots go on safely while I am sitting.  A trick the video does not show is to make the ankle straps as long as I can before I put on the boots.  After I snap the straps closed I pull on the ends of the straps to make them tight.  Warning #2: The first set of boots I ordered was too big so they flopped around when I walked.  I walk more slowly with boots on, but that beats not being able to get to the grocery store or keep important appointments like a visit to the doctor.

December 27, 2017

Walking in Snow with a Cane

Bottom Line: I am not ready to go to an assisted living facility were the van will take me to Wal-Mart once a week.

Warning: I do NOT poke my cane through the snow.  I wait until a neighbor I pay shovels my walkway and digs out my car.  I must be able to see the ground to tell if there is an icy patch that could make the spikes slip.  Checking the ground for ice slows me down, but it gets me to my car safely so I can drive.

The photo on the left shows the Briggs Ice Cane/Crutch Attachment.  I bought it at a medical supply store near my home.  The advantage of buying it in a store instead of on-line is the saleswoman got out a screwdriver and fastened the device to my cane.  It stays out of my way in the up position.

To lower the prongs, I place the cane in my hemiplegic (paralyzed) hand which holds the cane while my sound hand pushes the device down until I hear it snap into position.

The device makes my cane slightly heavier which slows me down which is not as bad thing. 

I use another cane during warm weather rather than take this device off and put it back in the same place each winter.

December 18, 2017

Best Description of What a Therapist Does

Writing step-by-step instructions for therapists who treat stroke survivors would be like writing step-by-step instructions for how to make a basket during a basketball game.  The basket stays in the same position, but a player has to respond to players on the opposing team and make changes second by second.  Therapists face the same dilemma.  Haarman measured what therapists do when they walk stroke survivors (1).  Sensors on a stroke survivor's body found PTs used their hands to provide a corrective shift of only 2% of a client's body weight.  These tiny corrections lasted an average of 1.1 seconds.  Corrections were the therapist's response to what the client did.  Experienced therapists are able to make subtle, brief corrections because experience has taught them the bad things that can happen if the abnormal movements they detect get larger.

Unlike robots, human beings have their own agenda that can help or hinder a therapist.  I had clients who thought they were helping by standing up quickly while in a wheelchair and then launching themselves towards the bed.  I had fearful clients who pulled back the minute they felt me pull them forwards to do a transfer.  Add in day-to-day variables like fatigue and changes in muscle tone and differences in clients' body weight and height -- guidelines are the best that can be provided for this logistical challenge therapists solve every day.

Even though I was an OT, I could not feel these subtle, brief corrections after I had a stroke.  Stroke survivors know how fiercely we have to concentrate to tell every body part what to do when we are relearning a movement.  When my PT walked me, I did not have one brain cell left to pay attention to what she was doing.  This led me to complain to my PT that walking was not getting easier as the days passed.  She told me I was improving because she was gradually giving me less and less assistance.  I never thought to tell this to my clients either.

1.  Haarman JA, et al.  Manual physical assistance of therapists during gait training of stroke
     survivors: characteristics and predicting the timing. Journal of NeuroEngineering and 
     Rehabilitation.  2017:14(125).

December 11, 2017

Why I am so Stubborn About Refusing Help

I consistently refuse help for tasks I know I can do myself.  If a stranger offers to help I say "Thank you for offering but I can do it."  Refusing help from friends and family is even more important.  I do not want to be the friend or sister who repeatedly pulls the stroke card to get special treatment.  People do not need special training to know when they are being taken advantage of.  Because I am stubbornly independent, I never feel guilty about asking for help when I need it.

I recently asked a friend to pick me up early to go to a movie.  I cannot creep past the feet of able-bodied people who want to sit in the lower rows.  With peoples' feet clogging the aisle, I have no place to put my cane tip on the floor so I am at great risk for falling.  If we arrive shortly before the movie begins my friend and I have to climb up to the empty rows in the nose-bleed section.

I also do not want to be the stroke survivor who makes a mess that other people have to clean up.  On the rare occasion when I eat steak, I ask my brother or a friend to cut it up for me so it does not land on the floor.  Even my best rocker knife is too dull to cut through dense meat fiber.  The fierce downwards pressure a rocker knife requires quickly dulls the blade.

Knowing when to refuse and when to accept help takes thought.