First Painless Car Inspection Ever

When I bought a new car I did not have to worry about a car inspection for four years.
I dreaded having to explain that I have a car with a devise that blocks the accelerator pedal on the right.  When I step on the 2nd accelerator pedal on the left, a metal arm pushes down on the real accelorator pedal.  Unfortunately, this puts the accelerator pedal to the left of the brake.  A lifetime of stepping on the left pedal to brake is a difficult habit to suppress.  The 1st man who insisted he could drive my modified car drove it into another car.

I was thrilled that the state inspection station now has a special line that allowed me to drive the car myself.  I did not hold up the line while dozens of people watched me lean down to pull on the ring that removes the entire device.  The brake test that required an abrupt stop on a pressure plate has been eliminated.  My trip through the inspection line ended peacefully with watching a technician put a new sticker on my windshield.

The Canary Died

When the canary died, miners knew there was poisonous gas that they could not smell.  Every morning I use a deodrant bottle to test if the muscles that make a fist are getting too strong.  For a long time my index finger was curved instead of straight when I opened my hand.  The day I had to pry my hand open so it could grasp the bottle was a red flag.  I worked too hard for 2 years to make this hand functional.  I do not want to go back to holding an object by putting it in my mouth or squeezing it between my thighs so my sound hand can manipulate the object.  I live alone so there is no "honey do" at my house.

My OT designed these exercises to remediate my specific weaknesses.  My first session was long, but I finally felt finger movement.  I was relieved that I got a positive result after years of neglect.

The arrow on the left points to a muscle that has forgotten how to straighten my thumb.
I need a vibrator to wake this muscle up.  Stroking the tendons of muscles that straighten my fingers wakes those muscles up as well.

I kept forgetting to do these exercises so I put an empty deodorant bottle in front of the TV screen.  It was amazing how quickly I learned to ignore that shape blocking a part of the TV screen.  An example of how good intentions are not enough.
So I put the vibrator next to the sink when I finish breakfast.
I tucked the cord under the sink to prevent a fall when I came back to prepare lunch.  This memory aid is so absurd that it worked.  I quickly got better at doing these exercises and they
do not take much time.

Drama is for young people who have more energy than they know what to do with

Stroke survivors and caregivers cannot afford to let repeated frustration drain their energy.
I learned how frustrating and tiring a.m. care can be when I did one task after the other after my stroke.  Here is why bathing leaves me feeling refreshed instead of exhausted and frustrated.

Washing.  I do not struggle to soap up a washcloth one-handed or chase a bar of soap after I drop it.  I pour shower gel on a nylon poof and knead it a few times to get it soapy.  To wash my sound arm, I use a gross grasp in my affected hand to hold the nylon poof.  I do not struggle to wring out a washcloth one-handed.  I hang the nylon poof on a suction-cup hook, hose it down, and let it air dry.  I use shampoo suds to wash my face.

Before I could hold the shower hose with my affected hand (see photo) I used my forearm to press the head of the shower hose against my stomach.  Water runs downhill.  This frees my sound hand to deal with the nooks and crannies.  If my husband was alive I would still want to bathe this private part of my body.

Drying.  My towel rack is next to the shower so I can reach it while sitting on my shower chair.  I drape the towel over one shoulder to dry my arms and trunk.  After I get out of the shower
I stand to dry my crotch with the towel draped over my shoulder.  My shoulder carries the weight of the towel so it is easy for my sound hand to manipulate the free end.  I do not huff and puff while holding up my affected leg to dry it.  I don a terrycloth bathrobe which dries my buttocks and thighs.  I let my calves air dry while I brush my teeth and comb my hair.

Dressing.  For the 1st year after my stroke, dressing was easier if I rested after bathing.  I laid on the bed in my bathrobe with a towel under my wet hair and listened to music on the radio.

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 because 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

I fell in the kitchen recently.  In 16 years most of my falls have occurred in this galley kitchen which requires lots of turning.  When I turn 180 degrees I begin by stepping backwards.  If I lean too far behind vertical I cannot always catch myself before I fall.  While I wait for a neurologist to clear me for knee replacement surgery I am using the time to figure out how to eliminate all falls in the kitchen.  I cannot afford to damage my new artificial knee during a fall or kneel on that knee while pushing myself up from the floor. 

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 degrees while cooking.  This new pattern has already become a habit.


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

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.