Pain Scales

Getting clearance for knee surgery has been repeatedly delayed.  I used some of my time to document my pain levels.  Pain is rated on a 10 point scale.  Dividing pain into mild, moderate,
and severe is not enough to identify 10 different levels.  Noting whether pain was intermittent or constant helped.  It also helped to document when pain disrupted my ability to do Activities of Daily Living (ADLs) and how much pain reliever I took.  At the upper range of pain, documenting emotional distress added further refinement.  Here are the 10 levels of pain I have experienced over a lifetime.

1.  I have to think to recall if I had mild / intermittent pain during the day
2 . I am spontaneously aware of mild / intermittent pain throughout the day
3.  Mild / Constant pain.  1000 mg Tylenol at bedtime.  Must do some ADL tasks differently
     (e.g. walk down stairs backwards)
4.  Severe but brief pain made me afraid I could not finish an ADL task (e.g. thought about leaving
     filled cart in grocery store and going home).
5.  Moderate / Intermittent pain.  Added 500 mg Tylenol in a.m. because I ache before I get up
6.  Moderate / Constant pain makes me achy and exhausted by the end of the day.
     Worried about what 9 months of Tylenol is doing to my liver.
7.  I cannot tolerate constant moderate pain much longer.  Irritable!! 
     Need 2 attempts to do some ADL tasks (e.g. stand up).
8.  Severe pain makes me say "Ow that hurts" but I am able to remain still.
9.  Severe pain makes me Yell "OW" and I move or collapse involuntarily.
10. Excruciating pain: Not able to make any sound because I cannot exhale or inhale.

Handicapped Parking

My handicapped parking tag was missing when I got my car back from the auto repair shop.
It was not in the pocket on the driver's side door or under the seats or on the floor.  I know where handicapped parking is for every store I visit so I am REALLY IRRITATED when I keep forgetting to look for an empty spot in regular parking.  I am irritated I have to go to the Department of Motor Vehicles (DMV)  and sign a letter in front of a DMV employee to get a replacement hang tag.

Handicapped parking is more than being close to the door of a store.  The wider handicapped space is very helpful.  It is difficult to load purchases in the car because a regular parking space leaves very little room to open the car door.  Able-bodied people solve this problem by leaving their shopping cart at the back of their vehicle and walking the bags to the open car door.  I have poor balance so walking with a bag in my sound hand instead of a cane is a fall hazard for me.  The wider space lets me pull the cart up to my open car door to unload my bags.

A regular size parking space is difficult for another reason.  It is hard to get in and out of a car when I can open my car door only two feet.  This small opening makes it hard for me to maneuver a heavy leg brace that will not let me point my toes.  A wide handicapped parking space is especially important for someone in a wheelchair.  They need the car door to open widely so they can slide from their wheelchair onto the car seat.

Qualifying for Disability Benefits

I was surprised to learn that having a stroke was not enough to establish my need for disability benefits.  When I had an interview with paratransit services they asked me to give examples of why I could not take a bus.  My sound hand is not free because it has to manage a cane and my hemiplegic hand cannot insert money in the fare box.  If I do not sit down quickly, the lurching movement of the bus would make me fall because I have poor balance.

Approval for social security disability (SSD) also required explaining how specific deficits interfered with my ability to do specific job related tasks.  I could not demonstrate and help occupational students perform bimanual therapeutic techniques correctly.  The doctor who filled out his section of the SSD application form was the physiatrist who managed my care in the rehab hospital.  He knew a great deal about my inability to perform functional tasks because he heard therapists talk about me in team meetings.  Other kinds of doctors including neurologists do not evaluate or document the loss of independence that is needed to qualify for disability benefits.

Brain Plasticity Will Blow Your Mind

New research on brain plasticity will blow your mind.  For example, every day new stem cells are produced in the lateral ventricles of the adult brain (1).   Using time lapse imaging scientists have  watched those new stem cells latch onto a blood vessel highway and drag themselves to their destination (2).  Brain chemicals push stem cells away from their birth place.  As the cells approach their destination more chemicals pull them in the right direction - amazing!

It is hard to believe neuroscientists used to believe everything we learn in life can be crammed into the memory cells we were born with.  Thank God the adult brain grows thousands of new memory cells every night (3). 

Many imaging studies have proven the adult brain can recover.  For example, Marshall saw regeneration of cells that control finger-thumb opposition in stroke survivors (4). 

1. Carreira, B., Carvalho, C., & Araujo, I. (2012). Regulation of injury-induced neurogenesis by    
   nitric oxide. Stem Cell International, article ID 895659, 15 pages.
2. Bozoyan, L., Khlghatyan, J., & Saghatelyan, A.  (2012). Astrocytes control the development of    
    the migration-promoting vascular scaffold in the postnatal brain via VEGF signaling, J. Neurosci,
    32, 1687-1704.
3. http://www.ruor.uottowa.ca/fr/bitstream/handle/10393/23287/Ceizar_Maheen_2012_thesis
4. Marshall, R., Perera, G., Krakauer, J., Constantine, R., & DeLaPaz, R. (2000). Evolution of
    cortical activation during recovery from corticospinal tract infartion. Stroke, 31, 656-661.

A Wakeup Call

This post illustrates how staying in your home after a stroke requires problem solving for life.

I fell in the kitchen recently.  In 16 years most of my falls have occurred in this galley kitchen which requires lots of turning.  I do not fall when I turn 90 degrees because I take tiny steps.  But when I turn 180 degrees I begin by taking a normal size step backwards.  If I lean too far behind vertical I cannot always catch myself before I fall.  I cannot afford to fall after knee replacement surgery or kneel on that knee as I push myself up from the floor.  While I wait to see a neurologist to be cleared for surgery I am using the time to learn how to eliminate falls in the kitchen.


Before I started cooking I moved the objects in the photo (see arrows) to create a narrower space.  When I see an obstacle in my peripheral vision, my brain tells my legs to slow down so I have time to think about what I am doing.
I am now taking tiny steps when I turn 180 and 90 degrees.  This new pattern has already become a habit.

Good Intentions Do Not Last for Weeks

Two friends who had total knee replacements looked intense when they talked about the pain when PTs stretched their knee after surgery.  Future pain motivated me to do 8 knee stretches my surgeon gave me.  BUT I know from not doing home programs after a stroke that good intentions do not last for weeks.  Anchoring exercises to tasks I already do helps me succeed.  I do the
8 exercises throughout the day instead of organizing each day's agenda around 30 minutes of exercise.  Daily activities are memory aids that eliminate my need to think.  See 3 examples below.

While lying down I am supposed to bend my knee by sliding my heel up to my buttock.  Since my knee is stiff when I wake up,
I do this exercise under the covers before I get out of bed.

While standing I am supposed to do hamstring curls.  Now I stop at my front door every time I come back from the kitchen after turning off the alarm that makes me get up from my computer every 20 minutes.  I hold onto the doorknob.

While sitting I am supposed to stretch my knee by hooking a strap around my foot.  I do this at night when I am watching TV.

Organizing My Purse is a Vital Shopping Strategy

Jupiter, Mars, Venus, and Mercury line up every 50 to 100 years.  This is how low the chances are of me trying to find something in my purse by digging around with one hand.  Organizing my purse reduces frustration when I go shopping.  Every woman organizes her purse differently so my examples are intended to help stroke survivors realize a purse does not have to be a buzz kill.

I put a round green wrist coil on my car key to make it easy to retrieve.  I grab the wrist coil instead of searching for the key.  I learned to put the flexible coil on my wrist while reaching for an object in the car.  I made the mistake of setting the key down and then locking and shutting the door.  Seeing my car key on the dashboard was agony.  AAA car service came an unlocked my car after I waited for an hour.  When I made this mistake a 2nd time I knew I needed the sensory cue of the coil around my wrist.                                                                                      My house key is on a straight flexible coil that is hooked on my purse.  I pull on the coil to make my house key slip out of its pocket.   

I handle credit cards quickly because I keep them in a zippered compartment that holds ONLY a driver's license, one credit card, an ATM card, and a library card.  While sitting in the parking lot I place the card I need vertically so it stands out from the other cards which are horizontal.  Cards go back in this zippered compartment in a flash.  Less frequently used cards like my health insurance card are in another compartment.  I do not want to hear the people behind me in line moan because I am struggling to find my credit card.

I Don't Need to Panic

The electricity goes out at least 2 times a year where I live.  Since my stroke I rely on my vision to tell me if I am vertical.  So I put a flashlight in every room next to a heavy piece of furniture.  After I  lower myself to the floor I can scoot to a flashlight while on my buttocks and pull myself up on the furniture.  Fortunately, the electricity has always come on before it gets totally dark. 

However, in 2012 high winds from Hurricane Sandy knocked trees down that landed on power lines and cut my power for a week.  I went to live with a friend.  One night Barbara brought out two battery operated lanterns.  These devices can light a work area - something I would need if I had to live without power for a week.  I asked her to let me try to replace the batteries.  I could manage one of the two lanterns with one hand.

I bought this lantern and ignored it until the electricity went off 3 times in a row a few days ago.  The batteries are 7 years old so I decided to rehearse replacing them.  I had forgotten how to get to the batteries.  I panicked but then relaxed because I had already done this at Barbara's house.
I began pulling on parts of the lantern and felt something move.  The photo shows what I rediscovered.  I got out my heavy toolbox to get a flat head screwdriver to turn 2 buttons to loosen the cover over the batteries.   Now I have the lantern, batteries, and screwdriver sitting side by side in my bedroom.  Rehearsal turns back the clock to when I could respond quickly to a challenge.

Long-handled Bath Sponges Are My Pet Peeve

Not being allowed to shower and wash my hair for two weeks after my stroke was misery I will never forget.  As an American I have always had access to copious amounts of clean water.
I took the pleasure of warm water streaming down my body for granted.  Showering is a simple pleasure I do not want ruined by aggravation.  Feeling clean always lifts my spirits.

After my stroke I was given a long-handled bath sponge.  I learned this device has three flaws.
1)  When I used the bath sponge to wash my back, I had to grab the middle of the long handle which was cumbersome.  I had to be careful not to stab myself in the head with the end of the handle as my hand moved up and down.  2)  The sponge is soft so the feet of people with a hip replacement will not be tickled.  I want a textured surface for the itchy places on my back.
3)  The long straight handle made it difficult to store the bath sponge which stays wet for 24 hours.
I lost track of how many times it slid off my hospital nightstand and bathroom sink.


When I got home I ordered the Buff-Puff sponge and replaceable sponge heads.  It has a short curved handle that makes it easy to hang up to dry on a suction hook.

Making a Bed One-handed

I love the feel of clean sheets so I was motivated to learn to make a bed.  Putting a fitted bottom sheet on the bed is easy to do one-handed.  I slip my sound palm into the corner.  Then I shove my hand and the fabric down under the mattress.

It is harder to put flat linens on the bed with one hand.  First I have to make several trips around the bed to make sure the top sheet and blanket hang down equally on both sides.  Then I lift a corner of the mattress with my sound hand, hold the corner up in the air with my hemiplegic forearm, and use my sound hand to tuck the flat linens under the mattress.  When a queen-size mattress got too heavy for me to hold in the air I switched to a single mattress.

I cheat by letting the pillow sit on top of the bedspread.  Leaning over to neatly tuck the bedspread under the pillow is too much of a balance challenge for me.  I also cheat by not making multiple trips so the bedspread hangs down evenly.  The black line at the edge of the mattress shows the bedspread is crooked.

In 16 years I have never thought I should go to a long-term care facility because my bed looks like it was made by a child.