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.

December 3, 2017

The Kindness of Strangers and Friends

My recent 2,000 mile trip reminded me of the kindness of strangers.  For example, loading luggage in my car before I check out of a hotel can be difficult.  At one hotel I could not get the empty luggage cart back through the heavy outside door near my handicapped parking space.  I went inside and asked an employee at the front desk for help.  He was happy to retrieve it for me.

I ordered a single serving cereal pack for breakfast and was not able to break the seal.  I asked a woman passing by my table if she would be willing to open it for me.  The glue was so strong it took a person with two good hands three tries to peel back the top.  At another hotel I went to get coffee at the buffet breakfast.  I was challenged by a coffee urn with a control lever two feet above the table.  I have one trustworthy hand that can control a lever OR hold a cup of coffee directly under the spout.  If a trucker had not been willing to help me, I would have splashed coffee all over the table.

Before I left for my trip, my good friends Peggy and John put a plastic carpet protector under my computer chair which helps the chair roll.  For me, wrestling with this heavy, awkward object is a fall hazard.  After I returned from my trip Peggy invited me to a brunch.  I was able to get up two steep steps in the hallway of her house because John had placed a secure hand hold on the door jamb.  Without this assistive device, I would need physical assistance because these steep steps are a balance challenge. 

I know when to ask for help because I had a stroke in my neck in a small structure called the pons.  The pons is part of the brainstem that carries movement commands from the brain to the spinal cord.  The pons does not control cognitive functions.

When I see that trying to be independent will make more work for other people I am not shy about asking for help.  The kindness of others is an important part of my stroke recovery.

November 27, 2017

Are Sadness and Anger Bad?

The holiday season often evokes strong feelings.  I used to think emotions like joy and love are good while emotions like sadness and anger are bad.  Now I believe that how I react to my emotions is what is good or bad.  It is bad when I let moments of joy fly past me unnoticed because I am pre-occupied by internal mental chatter.  It is good when I stop what I am doing and take a few seconds to appreciate when I am happy.  It is bad when I rerun upsetting episodes in my head.
It is good when I use anger to propel me towards a solution.

IF I could go back and tell my younger self to stop reliving memories that upset me, I doubt it would make any difference.  1st when I was young I had the tremendous energy it takes to sustain emotional drama.  A stroke took away the energy I need to stay upset for a long time.  2nd being snubbed recently reminded me of how intense emotions can be.  I was upset the day I was snubbed.  By the next day -- not so much.  By the third day I remembered that letting this person upset me gives her power.  By the fourth day I remembered I was upset for decades when I was younger but can not remember most of what upset me.  Hence the irritating platitude -- this too shall pass.  My heart does not get to choose which emotions I experience, but how I react to those emotions is a conscious choice.  Of course, I forget this again and again.  Fortunately, as I get older I remember this insight sooner and suffer less.

November 21, 2017

Still Disappointed

A recent study on robotics leaves me disappointed once again.  Years of research on new technology for stroke survivors has not gotten past facilitating ARM movements.  As a stroke survivor I want to use the hand at the end of my arm.

Part of the problem is that the wrist and fingers can perform 29 different movements.  Even worse, which of the 29 movements are needed depends on what each object demands.  Researchers
do not study simple movements that make a hand functional but require only a few degrees of freedom.  These hand movements are so easy and brief that able-bodied people are not aware of them.  Simpler hand movements would make it easier to program a robot, teach research subjects the task, and analyze data.  To break through this brick wall, read the page at the top of my blog called Hand Evaluations.

November 12, 2017

Doctors Do Not Prescribe Therapy After a Stroke

I have never had a doctor refuse to give me a prescription for therapy, but I have always had to ask for it.  I think neurologists, orthopedic surgeons, and general practitioners do not order therapy for stroke survivors for two reasons.  1. They have not kept up with advances in rehab for strokes.  You would think at least a neurologist would stay current.  But they diagnose dozens of neurological conditions and cannot keep up with all the advances in dozens of fields.  Not staying current may mean a doctor still thinks recovery after a stroke is possible only for a short while so there is no point in ordering therapy months or years after onset.

2.  The next time doctors they see me I am not cured.  They do not see the value of small gains.  The photo on left shows how I raised my hemiplegic arm so I could lean my hand on the counter to prevent falls when manipulating objects at a sink.  This was a valuable skill to prevent falls when I had poor balance.  The photo on the right illustrates how weak hip muscles did not keep my knee in good alignment.  Before a round of PT, my knee swerved left or right instead of staying in the middle when I bent my knee.  I was willing to do strengthening exercises at home to avoid knee replacement surgery.