April 26, 2016

My GPS is an Ideal Spouse

I am taking a road trip to present at an OT conference so I am getting ready to use my GPS. 
I need a GPS because this trip requires me to use five different Interstate highways.  Highways
in the Northeast are a maze of meandering roads that were mapped out before the age of cars.
A highway built on the open land in the rest of the U.S. can go on forever.  Interstate 80 that goes from New York to San Francisco is 2902 miles long.  With many different highways on this trip,
I need my GPS to tell me "turn right in 400 feet at Exit 29B to Monroe."  I feel confident when I
see a sign that says "Monroe Exit 29B" a few seconds later.

I call my GPS the ideal spouse because it never gets distracted and then blames me by saying "you should have turned left back there."  If I decide to make a detour the GPS obediently says "recalculating."  After the GPS says "drive 268 miles to Monroe" it stops talking for 266 miles.

April 16, 2016

Insight Into My Soul

I have wondered why I always get irritated when able-bodied people offer to help me.   These kind-hearted people see that they could do what I am doing in a few seconds.  What is invisible to them is the story I tell myself when I am slow or fail on my 1st attempt.  This morning I had an ah-ha experience.  I started to get angry when I was struggling to remove the paper wrapper from a straw.  Then I heard myself think "patience - you know you can do this if you keep trying."  This thought is based on the hundreds of times I have succeeded at this task.  When people try to help me I am afraid of the new story I will tell myself.  "I wish someone was always here to help me." And then "I may not find a kind person to help me so maybe I should stay home." If I live long enough I may need to go into a long-term care facility.  But I am not ready to be isolated so I have no choice but to do the hard work.

Bottom-Line: The stories we tell ourselves are powerful.

April 3, 2016

Carts Keep Me and My Stuff Safe

The photo shows I do not use a cart to transport objects a long distance in my small kitchen.  However, the cart saves me from making numerous consecutive turns.  For example, when I bring home groceries, the food that goes in the refrigerator is scattered in several shopping bags.  I collect cold items on my cart, push the cart to the refrigerator, and stand in front of the open refrigerator.  I use my sound arm to transfer objects from the cart to the refrigerator shelves - no turning and walking back to collect the next item and turning to face the refrigerator again.

How does standing still as I transfer objects keep me and my stuff safe?  1) Turning can be stressful for the knee when it is not done correctly. 
2) Turns increase the chance of a fall because turning is more difficult than walking in a straight line.  3) Maintaining my balance while turning is a challenge that distracts me when I carry an object.  It is aggravating to have only one hand to clean up a broken dish or food that I dropped.

If you have two good hands to carry a stack of plates, bowls, or pots, you can take fewer trips to put away dishes.  These stacks are too much weight for one hand.  So I use a cart to unload my dishwasher.  I transfer clean items to the cart and push the cart to various storage areas.  As I stand in front of a cabinet, I pick up and place dishware in the appropriate place.  I am not going to turn repeatedly to carry one dish at a time to where it belongs!

 A cart allows me to bring a meal to the table in one trip.  Here I am       3 months after my stroke serving myself a cold lunch.  When I got tired of eating frozen dinners heated in the microwave I started cooking.  It took 3 more months before I had a cooked dinner ready to transport to the table.  Initially I cooked one food, ate out of the pot, and then cooked the next food.  The day I put three kinds of cooked food on a plate was a triumph.  Now that I cook regularly the cart keeps me from burning my hand on a hot dish or spilling hot food while transporting it. 

Two final reasons to love carts - a three-tiered cart allows me to sort my dirty laundry by color while sitting instead of repeatedly leaning over and standing up.  This cart helps me safely transport dirty clothes to my 1st floor laundry room.  Laundry does not start with loading the washing machine!  I also use this cart to transport my large box of Christmas decorations to my couch from the closet where the box sits on an accessible shelf.

P.S.  I am sitting on a folding metal chair that stays out of the way when I store it behind an open door.

March 28, 2016

Astronauts & 1900's Women Get Surviving Stroke

Before I had a stroke I would have found my post "9 Things I Have to Do to Drive Independently" obsessively tedious.  I know of only two groups of able-bodied people who can understand what you have to do to thrive after a stroke.

Astronauts.  Astronauts understand the conscious attention stroke survivors have to pay to familiar tasks that able-bodied people do without thinking.  As I watched astronaut Scott Kelly demonstrate cooking and eating dinner on the International Space Station, I saw that he had a problem.  He repeatedly dropped food because his hand forgot you have to attach an object to a surface or it will float away.  To be fair, Scott was distracted by having to look towards the camera and explain what he was doing.  I am sure he performs better when he does not divide his attention.  I think he would understand why stroke survivors do not perform well when they try to multitask.  I also think the months of practice Scott did on Earth would help him understand how hard it is for stroke survivors to relearn to do even simple tasks.

Urban Housewives in 1900.  If women in 1900 could have read the nine things I do before I drive my car away from the curb, they would have said "welcome to my life."  They knew about spending lots of time getting ready to do a task.  For instance, before they could start doing laundry they had to do three chores.  1) They had to soak clothes the day before because cleaning agents were not very effective.  2) They had to hand carry 20 to 40 gallons of water from the sink to a large copper vat where the clothes were washed.  3)  They had to wait for the coal fire under the copper vat to heat up the water.  Only then could they start agitating the clothes by hand with a four foot long pole called a dolly stick. 

Here is a re-enactment of doing laundry in 1900 from the PBS TV series, The 1900 House.

March 15, 2016

9 Things I Must Do to Be Independent in Driving

Regaining independence in driving took more than being trained to drive one-handed by a certified OT driving instructor.  There were nine additional skills I had to master. I begin with two tasks that able-bodied people do before they pull away from the curb.

Safety.  (1) The seatbelt was always twisted when I pulled it across my body.  I learned I have to make sure the seat belt is completely straight when I pull it out.
Starting the Car.  (2) My left arm is my sound arm so I have to lean over to see the slot for the key.  I can pull the key out thru an opening in the steering wheel because this does not require the precise placement that inserting the key demands.

Access.  (3) Getting out keys for my house and car is harder than it sounds. (4) Getting out of my house has four challenges.  First, I must open the door and place my cane on the porch so my sound hand is free to close and lock the door.  Second, I have to step over a one inch high strip (arrows on left) as I step backwards to pull the front door closed. 
Third, I have to hold the screen door open while I close the front door.  I used my butt to hold the screen door open because it is a heavy wheelchair-width door.  However, I dented the screen so now I push against the storm window which I keep down all year.  Fourth, the photo on the right shows a shallow ledge built into the bottom of the screen door.  I have to keep the heel of my hemiplegic foot from getting stuck on that ledge as I step down onto my porch. People who hold the front door open are not preparing stroke survivors for the day we want to walk out the door by ourselves.      

Parking.  (5) I had to learn to parallel park to pass the on-the-road test.  (6) The spinner knob I use to control the steering wheel is made of a plastic that gets hotter than a regular steering wheel.        I cannot afford to burn my sound hand so I am glad I found sunshades I can put up in 10 seconds to cover the windshield.

Winter Issues.  Before I leave my house in the winter I have to
(7) don boots and (8) zip my coat

Car Maintenance.  (9) Before a mechanic works on my car he shoves the car seat back because I have short legs.  Before I drive away I grab the steering wheel with my hemiplegic hand to pull the seat forward while my sound hand presses down on the release bar.  The photo shows what OTs call a gross grasp, but it is a skill I need to be independent in car maintenance. 

March 3, 2016

Conclusions from Multiple Studies Can Be Flawed

The gold standard of medicine has been to find one treatment that makes everyone healthy.  To find this "holy grail" authors compare the results from a large number of studies (meta-analyses, systematic reviews, Cochran Reports).  Yet conclusions from multiple studies can be flawed when a disease varies widely as stroke does.  Here is two examples of what I am talking about.

Researchers are doing new clinical trials on drugs that did not help large numbers of people with cancer.  Now that researchers know how to identify different subtypes of cancer, they want to see if old studies had a poor match between the drug and the subtype of cancer in the sample.

Researchers in the Efficacy of Nitric Oxide Study (ENOS) studied the effects of nitric oxide (NO) on stroke outcomes (1).  ENOS looked at the records of over 4,000 stroke survivors in 23 countries. NO had no beneficial effect. The ENOS authors did a 2nd analysis with a subset of people with strokes that affected the front half of the brain (1).  Ninety days later the subjects who received NO had significantly better outcomes on the Mini-Mental State Exam (cognition), Barthel Index (ADLs), EuroQol Scale (quality of life), and Zung Depression Scale.

Bottom Line. Authors of meta-analyses, systematic reviews, and Cochran Reports need to take a more nuanced approach.  When deciding what helps people with a disease that varies widely, conclusions that ignore how samples differ across studies can dismiss beneficial treatment effects.

Example of a Nuanced Approach. The CAREX exoskeleton helped stroke survivors draw circles by providing two kinds of assistance (2).  High functioning stroke survivors who had strength but lacked control improved when they were given path assistance.  Low functioning stroke survivors who lacked strength improved when CAREX supported the arm so they had less weight to move.  

1. Woodhouse L, Scutt P, Krishnan K, Berge E, Gommans J, Ntaios G, Wardlaw J, Sprigg N, Bath
     P. Effects of hyperacute administration (within 6 hours) of transdermal glyceryl trinitrate, a nitric
     oxide donor, on outcome after stroke. Stroke. 2015;46:3194-3201.
2.  www.news-medical.net/news/20160218/motor-skill-training-using-exoskeleton-device-beneficial-to-people-suffering-from-post-stroke-weakness

February 25, 2016

A New Hand Evaluation for Stroke Survivors

Van Lew and associates (1) studied the reliability of a hand evaluation called Functional Upper Extremity Levels (FUEL).

What They Got Right
To prove the efficacy of treatment approaches, researchers need tests that are sensitive enough to detect both emerging movement and small improvements.  Hand tests traditionally begin by asking clients to reach out, pick up an object sitting on a table, and release the object by placing it back on the table.  Many stroke survivors cannot do this.  The FUEL provides sensitivity by describing
3 levels of skill below the starting level of traditional tests.
         Level 1 = Dependent Stabilizer.  The sound hand places the affected hand on an object.  The weight of the hand stabilizes the object so the sound can manipulate the object.  Level 2 = Independent Stabilizer.  The affected hand places itself on the object (e.g. hand holding down wad of toilet paper so other hand can tear paper).  Level 3 = Gross Assist.  Affected hand holds an object with a gross grasp.  No functional release is present.

What They Missed
One task did not have good inter-rater reliability.  When scoring a grooming task, 70% of OTs scored the subject as Level 3 while 30% of OTs scored the subject as Level 4.  The authors attributed this finding to a video that "did not have the clarity of other videos."  However, when a subject does not exhibit ALL the skills of a level it can be difficult for raters to agree.
          An alternative explanation may be that reach, grasp, and release do not emerge together - a combination Level 4 requires to give full credit.  Before reaching, a hand-to-hand transfer can be done close to the body.  The affected hand has to open a few inches to accept a small object from the sound hand and relax to release the object so the sound hand does not have to tug on the object.  Ignoring hand-to-hand transfers is not a small omission on a test of hand function.

1. Van Lew S, Geller D, Feld-Glasman R, et al. Development and preliminary reliability of the
    Functional Upper Extremity Levels (FUEL). American Journal of Occupational Therapy,
    690650010p1-6906350010p.5 (online only).

February 14, 2016

Nails Do Not Stop Growing After a Stroke


I live alone so I have to cut my nails.  I cut the nails on my sound hand by operating an adapted nail clipper with my affected hand.        I returned the small nail clipper shown on the bottom.  The pointed end (see V-shape) dug into my palm when I pushed down.  The short handle also meant I had to press hard to get enough force to cut my nail.  I use the larger nail clipper shown on top.  The end of the handle is square which is more comfortable.  The longer handle gives me better leverage when I push down.

Notice the emery boards in the large nail clipper held by pegs that are tightened by hand.  I use these emery boards often to remove sharp points at the corners of my nails. This is safer than trying to get the clipper into these tight spaces.  The clipper came with four emery boards, but replacing them will be a challenge.  All the stores near my home sell only wide, thick boards (pink board) that do not fit in the clipper.  The Internet sells short 4 inch emery boards except for this link.

My sound hand cuts nails on my affected hand with a regular nail clipper.  Spasticity in my affected hand makes my fingers curl.  To straighten them, I prop them one-at-a-time on a the edge of an opened drawer.  The open drawer allows my sound hand to get low enough to get a good cutting angle.  I put a piece of non-slip shelf liner under the finger to keep it from slipping, but the shelf liner got in the way when I photographed my hand.

Bottom Line: I cringed when I learned the large nail clipper costs $37.50, but nails do not stop growing so I do not have a choice.

February 3, 2016

Update on Applying Make-up One-Handed

Applying eye liner requires the ability to close one eye while you keep the other open.  I can only blink (close both eyes at once).  So I use mascara to give my eyes more definition.  My affected hand can squeeze tubular shaped objects between my index and middle finger so my sound hand can open the mascara.  Then I had to change to a non-irritating brand of mascara that comes with a funky handle.  Rehab never ends! 
I kept dropping the curved top of the mascara.  This left dark stains on my rug.  I used too much carpet cleaner which left white spots (see black circle).     I put a bandaide that has texture around the top of the mascara to give me better traction. I have stopped dropping the mascara.
My balance is not good enough for me to lean close to the bathroom mirror.  Years ago I attached florescent lights to the mirror hanging over my dresser.  I have a mirror on my dresser with clear Dycem under it to keep it from moving.  Leaning my sound elbow on the edge of my tall dresser gives me good control when applying eye make-up.  A food container keeps make-up organized so it does not spread out on my dresser.  A small round container holds vertical objects upright.  It does not fall over because it is clipped to the square container with a small metal binder clip (see white circle) I got at an office supply store. 
A piece of non-slip shelf liner stops eye shadow and face powder from sliding when I open the container and sweep the brush side-to-side.  I did not know age would rob my lips of the pink color that keeps them from being the same color as my face. It is easy to apply lip gloss with a hint of color because I do not have to draw a precise outline like I do with lipstick.  Now I see lips on the bottom half of my face when I look in the mirror.

January 26, 2016

Outcomes That Stroke Patients Prefer

PROSPER stands for Patient-centered Research into Outcomes Stroke Patients prefer and Effectiveness Research.  A current PROSPER study is being conducted at Duke University in North Carolina.  A brief description of the study says the following outcomes will be measured in stroke survivors.  Primary outcomes: 1) death, 2) days at home after stroke, and 3) quality of life as measured by fatigue, depression, and "medication taking behaviors."  Secondary outcome: readmission.

A "patient investigator" in this study said "healthcare providers often measure our recovery with functional status...what these metrics cannot quantify is the tremendous loss felt by the driven career woman, the supermom and superwife or the free-willed adults that we all used to be."

Bottom Line: It is hard to see how measuring the absence of deficits such as depression and fatigue will capture the outcomes stroke survivors prefer.