Rolling Over in Bed Can Be a *****

Right after my stroke, rolling over in bed took horrendous effort when I was most tired.  When I rolled onto my sound side, my floppy hemiplegic arm would get stuck behind me.  It felt like a wrestler was pinning my upper body to the bed.  I had to remember to use my sound hand to pull my hemiplegic arm across my chest before I started to roll while pulling on the bed rail.

Seventeen years later rolling onto my sound side is still difficult.  One night when I wanted to roll over so I could sleep on my sound left side, my hand reached for the folding chair I placed next to my bed.  This chair is lower than my bed which makes it easier to lean down to tie my shoes.  With the help of the chair and a hemiplegic arm that now rolls with the rest of my body, I quickly fell asleep.  Once again serendipity made my life better.   

However, I have gotten good at rolling onto my hemiplegic right side to get out of bed.  My sound arm crosses over my chest as I swing my sound leg over my hemiplegic leg.  My sound hand reaches for the mattress as I hang both legs over the edge of the bed.  The weight of my legs dropping down helps pull my trunk and head up.  My sound hand pushes on the mattress to help me sit up.  homeafterstroke.blogspot.com

Escaping Frustration

My sound hand can place small objects between the index and middle fingers of my affected hand so this hand can hold objects still.  As an OT I know this is a weird grasp that has no name.            As a stroke survivor it makes me really happy.

The index and middle fingers of my affected hand can hold a toothbrush so my sound hand can squeeze toothpaste on the brush.  

The index and middle fingers of my affected hand can hold a cotton swab still while my sound hand cuts it in half.  This creates smaller pieces of cotton I put in my ears before I use hair spray on my short hair. 

I use my teeth to pull a rubber glove on my sound hand.  I do not want to touch shopping carts and transfer what my hand picked up to my car key, car door, and steering wheel.  When I get my groceries to my car, I use my teeth to pull the glove off inside out.  I do not want to leave a dirty glove in the cart so I place it between the index and middle fingers of my affected hand.  

I unlock  my car door and put the used glove in a cup in my car.

Then I put my groceries on my back seat.  

homeafterstroke.blogspot.com

Saved by the 80% Rule

Ironing aprons after the Spring Sale at my church reminded me of a pleasant childhood memory.  I remembered when my mom taught me to iron by having me iron handkerchiefs.  This was a simple task I did successfully the very first time.  However, it is easier to get wrinkles out of a handkerchief than an apron.  Fortunately these aprons do not have to be ironed perfectly because they will be stacked in a box until next year and will come out a little wrinkled anyway. 

This got me thinking about the 80% rule.  Business managers use the 80% rule to keep down costs.  Some tasks that are 80% correct do not affect the bottom line while others have to be closer to perfect.  The rule says you need to think about striving for perfection because the last 20% requires nearly as many resources as the first 80%.  Business managers are paid to decide when a company should spend extra resources to approach perfection.  I wish I had known about the 80% rule when I was married.  When my husband did not smooth out the bedspread perfectly I would have known  this is an acceptable business practice.

I do not know where I got the idea that ALL work has to be done perfectly ALL the time.  I used to be a perfectionist, but now I think perfection should be a conscious choice rather than a habit.  

I live alone so when I am exhausted or frustrated I use the 80% rule.  homeafterstroke.blogspot.com

I Got Goosebumps

The Code Breaker (1) is about Jennifer Doudna who is the 6th woman since 1901 to win a Nobel Prize in chemistry.  I got goosebumps when I learned using RNA to defeat a virus is ancient technology discovered by bacteria.  For hundreds of thousands of years viruses have created new variants and bacteria have repeatedly defeated them.  One of the amazing things RNA can do is chop the DNA of viruses into little pieces.  

The "warp speed" victory against covid-19 was possible because of 20 years of research.  The story began with journals refusing to publish Doudna's findings and ended with dozens of people in the U.S. and Europe working on RNA technology.  The drama began with years of legal battles about who understood RNA technology first and ended with universities waiving their patent royalties to help the world survive a pandemic.  Research began by studying molecules in test tubes and ended with creating vaccines for covid-19.  homeafterstroke.blogspot.com

1. Isaacson W.  The Code Breaker.  NY: Simon and Schuster; 2021.

New Strategy for Obnoxious Able-bodied People

While struggling to get my sound arm out of the sleeve of my coat today, I thought about able-bodied people who insist on helping me.  People who grab an object out of my hand make me angry.  The last time I was treated this way I was 18 months old.  Nothing I have said has stopped people who insist they can quickly do what I am trying to do.  They are uncomfortable watching me struggle so they assume I am frustrated.  But struggling makes me feel confident.

Let me give you an example.  Struggling to get my coat off reassures me that I will not go to bed with my coat on because I live alone.  Instead of feeling fear when I walk in my door, I relax because repeatedly wiggling my sound arm will get that arm out of its sleeve.  I know this because this strategy has never failed.  The next time an able-bodied person insists on helping me, I am going to try to explain they are stealing an opportunity for me to have faith in persistance.

P.S.  When people say "May I help you?"  I say "I've got it, but thank you for offering."  I do not want to make a kind person regret offering to help.  Knowing strangers are watching out for me when I am in the community makes me feel safe.  When I say "thank you for offering" they look me in the eye to see if I mean it.  Then they see the smile on my face.  homeafterastroke.blogspot.com

More Good and Bad News

The good news is exercise can help stroke survivors regain control of their body.  I have done exercises for 17 years after my stroke.  Pain helps me sustain my commitment to exercise.  When I fell I broke a forearm bone (ulna) near my hemiplegic elbow which caused arthritis.  This produces a sharp pain if I do not stretch.  Before I get out of bed, I repeatedly bend and straighten this elbow and rotate this forearm.  I also have a bad back that creates agony if I do not stretch every day.        I get up in the morning to go to the bathroom and go back to bed to stretch my back while my muscles are still warm.  Skipping 2 days makes me stiff and skipping 3 days produces pain.  

Preventing fatigue also motivates me to exercise.  A stroke can create crushing fatigue that I cannot push through.  After 2 days of walking indoors I feel tired when I walk in the community.      So at the end of each day I write that day's aerobic activity on a monthly calendar I keep on my kitchen table.  At breakfast I can see if I sat at home the day before and plan the current day's aerobic activity.  Examples include Fitbit data when I walk in my neighborhood and shopping that requires me to push a cart and repeatedly lift objects.

The bad news is I can no longer be trusted to do exercises that maintain strength.  1st, gradually losing strength does not raise red flags that compel me to act.  2nd, I have a life so I no longer want to organize my day around home exercises.  However, I repeatedly do a few reps that do not disrupt the activity I am doing.  It is hard to find an excuse for not doing these brief exercises. 

For example, I get up from the computer every 20 minutes to turn off an alarm on my iphone in the kitchen.  This alarm prompts me to do 3 brief exercises.  Before I stand up, I lean down so my hand almost touches the foor and straighten my fingers ONE time.  When I sit back up, I reach back to touch the back of my chair with both forearms THREE times.  This stretches a muscle that pulls my arm in front of my chest (pec major).  After I go to the kitchen to turn off the iphone alarm, I sit and open my hand THREE times.  

I also open my hand when I sit on my bed to use deoderant.        I open my hand ONCE before I take the cap off the bottle and ONCE after I put the cap back on.

homeafterstroke.blogspot.com

Why Should People Care What I Do?

People need to know why they should care about what I do.  So I do not start by describing how to put on a bra with one hand.  First I write about clothes that do not fit because at my age, my breasts are closer to my waist than I ever thought possible.  I write about how I would feel about saying "I'd love to come to dinner if you hook my bra when I get there."  I live alone so donning a bra gives me a social life.  Describing how a problem affects my life reveals what motivates me.

A stroke taught me therapists and clients have a different point of view.  When I was an OT, I wrote goals for Activities of Daily Living (ADLs) because this was one way I got insurance companies to pay for patient care.  I also thought about deficits because how I treated one deficit, like weakness, was different from how I treated another deficit, like visual neglect.   As a stroke survivor I think strength and dressing are skills that help me participate in valued activities.    

A valued activity is anything people want so much that they are willing to work hard to get it and keep it.  I wanted to don pants so I could sit on the patio and feel the sun on my face.  This statement links a mundane ADL to a valued activity that meant a lot to me when I was kept inside for three months.  OTs need to help clients think about what they really want and stop worrying it may sound trivial to an able-bodied person.  Living life to its fullest means turning "I should" into     "I want to."    homeafterstroke.blogspot.com

The Good Part and the Bad Part

The good part about retirement is that you can do a task tomorrow.  The bad part about retirement is that you can do a task tomorrow.  When you are at work, the demands of the job often dictate what you should do when.  You walk in the door and may not have to think about what to do next until you go home.  The biggest challenge of retirement for me was having to make decisions about what to do all day long.

One part of the solution for me is having a morning routine - make coffee, do a crossword puzzle, go on the internet, fix breakfast, brush my teeth.  This means I do not have to think until I am awake.  My 2nd strategy was to make To-Do lists.  However, they made me feel guilty because I did so few tasks on the list.  Next I tried doing what ever I FEEL like doing.  Unless I have a planned outing, I realized it does not matter if I do laundry in the morning, afternoon, or evening.  Using emotions instead of logic to guide my choices works better for me.  It does not matter why I want to do something.  Doing what makes me happy helps maintain my momentum.  

Some days I am busy until dinner time.  Some days I have a 2 to 3 hour gap with nothing to do.  But every day is not a mind-numbing chore from morning to night.

Adverity Can Be a Blessing in Diguise

I learned to drive in Chicago, Illinois.  People in Chicago have to handle multiple snow storms and daytime temperatures that may stay below zero.  I learned what to do when storms coat street surfaces with snow or black ice which is hard to see.  If my car started to turn sideways when my tires slid, I learned to take my foot off the gas pedal and slowly straighten my car before I gently applied the brakes.  I learned to go to the grocery store before the storm so I did not need to go out during the storm.  I am glad I learned these painful lessons while I was able-bodied.

Now I live in New Jersey where winters are usually milder.  Many people here do not wear mittens and hats or zip up their coats because it often stays above 32 degress F in the winter.  When it snows, I know to stay home and avoid people who do not know how to drive in dangerous road conditions.  homeafterstroke.blogspot,com  

Finally - Real Help for Caregivers

As an OT, I sat through discharge meetings where caregivers were silent.  Some may have been too stunned to ask questions.  Others may have thought problems would disappear because the stroke survivor would completely recover (1).  Reality may not set in until caregivers struggle to get a family member inside his or her home.  I learned how intense demands are on caregivers after I went home alone after a stroke.  After 17 years, I know how many caregiver tasks have to be done to keep a stroke survivor out of a long-term care facility. 

I was excited when I read about a caregiver questionaire that is given before a stroke survivor is discharged from rehab (2).  Before the client goes home, staff ask caregivers what they were thinking as they answered each question.  This creates an opportunity to change what caregivers know and encourage them to ask for help before they get into trouble.  A dialogue is so much better than handouts.   homeafterstroke.blogspot.com

1.  Lutz B et al. Improving stroke caregiver readiness for transition from inpatient rehabilitation
        to home. The Gerontologist. 2016; Vol 00:No.00,1-10. doi10.1093/geront/gnw135.                    2. Camicia M, Lutz B, Harvath T, Joseph, J.  Using the Preparedness Assessment for the                    Transition Home After Stroke Instrument to identify stroke caregiver concerns predischarge:            Uncertainty, anticipation, and cues to action.  Rehabil Nurs. 2021 Jan-Feb 46(1):33-42.