What I Did Not Know as an OT

A friend told me how disappointed she was after she wore a light backpack while walking on the boardwalk at the beach.  It has been six months since her shoulder surgery so she did not expect her shoulder to ache after this walk.  Her story reminded me of how I felt when I had setbacks in my recovery from a stroke and total knee replacement surgery.  Her story reminded me of when I told my therapist I was discouraged because of a setback.  My therapist tried to reassure me by saying lots of people have setbacks.  This made me realize that seeing a setback is not the same as experiencing one.  

What I did not know as an OT was that being able to deal with powerful emotions and negative thoughts is as important as dealing with the pain and fatigue created by physical challenges.  I no longer wonder why some people die soon after they have surgery to repair a broken hip.  Half of recovery is mental and emotional.  homeafterstroke.blogspot.com

Kalamazoo

After living alone for 18 years with a stroke I am tired of dealing with home and yard maintenence, parking my car on the street which forces me to deal with snow, struggling to get groceries up my front steps, and cooking one-handed.  In September I was going to visit an independent living site I like in Kalamazoo after the summer road repairs on I-80 were finished.  I like the information I got from the website and the sales rep, but independent living is too expensive to buy into sight unseen.  

When the delta variant sent covid cases soaring I canceled my visit.  I know the odds of catching break-thru covid are low after my 2 vaccine shots.  However, I am afraid to be alone 750 miles from home with covid.  I could be too sick to drive myself home.  Do Uber drivers deliver to the front desk of a hotel?  Would hotels allow me to quarantine with them?

Another sign that this is not a good time to visit is that the facility posted an activity schedule for May, June, and July, but not August.***  Kalamazoo county currently has twice as many new covid cases as my county which has 100,000 more people.  With the covid surge and potentially bad winter weather, my visit is delayed until spring.  homeafterstroke.blogspot.com

*** The activity schedule for September was finally published.  YEAH!  

The Final Shoe Solution

Being forced to stay home during the covid-19 pandemic helped me remember why I work so hard to solve problems caused by my leg brace and shoes.  I would be severely depressed if I had lacked the confidence to walk safely in the community during the 16 years since my stroke.

Neither the white duct tape in the photo or double-sided tape have glue strong enough to stop my leg brace from pushing the shoe insert out of place.  When the shoe insert slides to one side my foot tilts so most of my weight is on the outside edge of my hemiplegic foot (ankle inversion).  Walking on a foot that is not flat is unsafe and tiring.  I am currently using T-Rex Ferousiously Strong double-sided mounting tape to see if it keeps the shoe insert in the center of the shoe.

Long socks that reach the knee prevent skin chafing as the brace rubs the top of the calf.  However, the only knee-high socks made for women are brightly colored socks used during soccer.
I cut the top off a man's white tube sock so it covers the top my calf.  I have washed them many times.  They fray eventually but hold together for a long time.  I am happy that what people see is black socks with black shoes and beige socks with beige shoes.


My THICK leg brace creates a leg-length discrepancy by making my hemiplegic leg longer than my sound leg.  Wearing 2 socks on my sound foot makes my sound leg a little longer.  The 2nd sock also keeps my foot from sliding inside the extra wide shoes
I need to accomodate my brace.  Having my sound foot slide inside my shoe makes walking tiring and puts strain on my hip and knee.  I wish I had known about this 2 sock solution before my sound knee needed joint replacement surgery.


The long sock I pull over the short ankle sock gets stretched out which makes it easier to don.  I bought permanent ink pens to mark the stretched sock in each pair.  A black pen works for white and beige socks.  The silver pen I use on black socks fades in the wash so I have to repeatedly mark them.

If you read this entire post you may understand why I do not think this is my last post about my shoes.   homeafterstroke.blogspot.com

Community Ambulation Falls Thru the Cracks

Stroke survivors have to figure out how to walk safely in the community.  Walking in PT gyms and on deserted sidewalks in my neighborhood did not prepare me for walking in community settings.  

I had to teach myself how to maneuver around carts and people in a grocery store, squeeze past closely placed chairs and tables in a restaurant, and deal with children in a shopping mall who do not look where they are going.  PTs do not know walking requires divided attention because they walk clients in wide empty spaces that provide no cognitive challenges.  Equally unfortunate, OTs who are trained to address cognitive issues do not assess community ambulation because walking is PTs domain.  So community ambulation falls through the cracks. homeafterstroke.blogspot.com

Happiness is Biochemical

"Your brain is like Velcro for negative experiences and like Teflon for positive ones" (1, p. 41).
We briefly notice positive experiences, but they slip away the way a fried egg slides out of a Teflon-coated pan.  Our stone age brain is wired to immediately store negative experiences that may be threats in the future (1).  A brain scan study found the brain was activated faster when people saw fearful faces than when they saw neutral or happy faces (2).  24 hours later, they also remembered more fearful faces than neutral or happy faces when they saw the photos again. 

Surprisingly, being happy does not require a positive attitude.  It requires action.  Here is a simple action that can change the brain.  Take 5 seconds to enjoy a happy moment (1).  I try to notice happy events I did not plan, like when I got the parking spot close to the entrance of a crowded grocery store the day before Christmas.  I sat still for 5 seconds, enjoying this treat before I got out of my car.  Lately I have been enjoying a shower.  I have been standing still for 5 seconds after I get out of the shower to enjoy this luxurious feeling.  When you pay attention to brief moments of happiness, the brain releases dopamine which builds a richly detailed positive memory.  For me, noticing brief episodes of happiness has a cumulative effect that affects how I feel at the end of the day.  homeafterstroke.blogspot.com

1. Hanson R, Mendius R. Buddha's Brain. Oakland, CA: New Harbinger Publications; 2009.
2. Yang E, Zald D, Blake R. Fearful expressions gain preferential access to awareness during
    continuous flash suppression. Emotion. 2007;5:227-250

Feeling Embarrassed is a Luxury I Cannot Afford

At a patio dinner party I was the only person who wanted watermelon for dessert.  That meant I got the round end of the watermelon that rocked every time I touched it with a spoon.  Eating it was a slow process because the best I could do was get a thin slice each time.  My hostess tried to help me because she was so uncomfortable with my awkward attempts.  This is the first time my friend has seen what happens the first time I try a new task.  She does not know my performance will improve because I often discover solutions that make my 2nd attempt go better.  She does not know I can count on getting faster and smoother with repetition.  I refused to let her help me because I will never know if I can do a new task if I do not try.

A few minutes later another friend at the dinner party asked me if I get embarrased.  I told her my plate is often too full to feel embarrased.  For example, able-bodied people stand up without any conscious awareness of what their body is doing.  When I stand up I have to make sure my center of gravity is over my feet before I straighten my legs.  If I lean too far backwards I fall back onto the couch or chair I was sitting on.  If I lean too far forwards I fall on the floor.  My stroke often forces me to concentrate so hard that I do not have the mental energy to worry about what other people are thinking.  homeafterastroke.blogspot.com

I Am Feeling Better

I still wake up at 2 a.m. to go to the bathroom and have trouble falling asleep unless I listen to a meditation CD.  However, since reading The Moth Snowstorm - Nature and Joy by Michael McCarthy I have not been waking up with a sense of dread.  This book inspired me to sit on my patio every day.  The 1st thing I notice is the smell of plants.  The sun and cool breeze on my face also feels wonderful.  I am entertained by bird drama.  One day I saw hawks flying slowly in circles while they looked for prey.  A few minutes after the hawks disappeared, I saw one small bird and then two and then a trio flying in a tight triangular formation.  The trio flew to the west and disappeared.  Then they flew back to the east and disappeared.  Finally they flew to the west and did not come back.  Another day I saw 6 tiny birds land on a telephone wire with a perfectly synchronized touch down.  It was like watching a miniature version of the elite air force flying squad the Blue Angels.  Bird TV is better than being aggravated by TV commercials for car insurance that repeat every 7 minutes.  

As I sat on my patio I noticed a shadow moving on my walkway.  The two photos below were taken 15 minutes apart.  Cocooning indoors for months made me completely forget I used to know time was not one momotonous unending event.  These images reminded me I used to see each day progress by seeing the angle of the sunlight change when I went outside. 

The sound of the wind in the trees behind my house helped me remember a happy childhood memory.  My parents rented a cabin in the woods for a summer vacation.  I enjoyed a gentle wind blowing in the trees that lulled me to sleep as I lounged on a screened-in porch after lunch.  

Being outdoors has helped me pay more attention to my surroundings.  Tuning out because I am listening to stories I create in my head has decreased.  I feel joy some of the time when good things happens when I am inside.  I am getting better.  homeafterastroke.blogspot.com

I Am Losing the Will to Live - Again

I lost my will to live after my stroke when I was kept inside for 3 months except when my home health PT took me for a walk outside.  I learned I cannot stay sane if all I do is stare at the outside world through a window.  I was imprinted on the natural world as a child because we did not have a TV until I was a teenager and the Internet had not been invented yet.  As soon as I got home from school I went ouside to play.  If only two children were available to play baseball, we invented rules for imaginary players on base.  If I was alone I played hopscotch, practiced throwing a basketball at the hoop, or rode my bike.  As an adult I went camping with friends, jogged outdoors in all seasons, tended a vegetable garden, and took vacations in national parks.  My most vivid vacation memory is riding a mule down into the Grand Canyon.

This hot, humid summer meant I lost the opportunity to walk around my neighborhood, sit on my patio to watch the clouds rolling out to sea, and feel a cool breeze on my face at the lake in Mercer County Park.  At sunset I missed watching pairs of birds racing each other down the middle my street at car height or playing "I can push you off the telephone wire if I land one inch from where you are sitting."  I realized how deep my depression is when my friend Janet talked about a book that describes about how we developed a relationship with nature for tens of thousands of years of human evolution.  The book is called The Moth Snowstorm by Michael McCarthy.  

Michael reminded me that nature can both stun and gradually soothe me until I fall silent.  I do not mean I just stop talking.  I mean nature can stop the constant chatter I create in my head but forget is there because it is so constant.  Covid has turned a lot of my internal chatter into catastrophic thinking which is depressing.  I need to find ways to get nature back in my life because I know it has a powerful effect on me.  homeafterastroke.blogspot.com

Stroke Survivors Need to Talk

Research with over 1,000 stroke survivors in the UK found that one in five choose to keep their fears to themselves (1).  Major fears included having another stroke, never getting better, and being sent to a long-term care facility.  Reasons for remaining silent included not wanting to worry others and not wanting to sound stupid.

I rarely discuss my stroke issues with family or friends for two reasons.  First, the challenges a stroke creates never ends.  I do not want to see able-bodied peoples' reaction to a litany of complaints that never end.  Second, after trying to explain a few problems to able-bodied people
I found they do not understand the emotional and physical toll a stroke creates.  In contrast, a stroke survivor recently thanked me for a presentation I gave.  I showed him a simple way to hold a toothbrush still while appying toothpaste with his sound hand.  He thanked me enthusiastically because he knew how irritating it would be to clean up sticky toothpaste when a toothbrush falls over every day until he dies.  He gets me and I get him.  Thank God reading stroke survivors blogs showed me that we can get better after rehab ends and my concerns are not stupid.  homeafterstroke.blogspot.com

1.  https://thiis.co.uk/research-reveals-the-often-silent-fears-and-concerns-putting-stroke-survivors-recoveries-at-risk/

Adaptive Garderning After a Stroke

Anti-depressants do not just come in a pill.  I am glad I found a way to garden after my stroke because it makes me happy.  I get to enjoy beautiful flowers every time I come home.  However, each year I forget the tricks I discovered so I took photos and described the steps.

At first I pulled plants out of their containers one-handed.  The moist dirt balls broke apart.  I learned to let the plants dry out a little.  The photo shows a child size spade I slide down the sides of each container to loosen the roots.  


I use a big plastic pot that is lighter than clay.  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 and gives me something to lean the 1st row of plants against.  A small cup helps me fill the narrow space between the ring and the edge of the pot.  I make sure the plants are touching each other so they grow into a thick ball that prevents water evaporation.  I drop fistfuls of dirt in the small spaces between the plants.  Then I pull out the ring.

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 lower the pot onto a bench and carefully slide it next to the chair I sit in to watch the sunset and drink a cup of coffee.                                                                                                                        P.S. Rebecca you only need four 4-packs.  homeafterstroke.blogspot.com