Everyone Struggles With Acceptance

Awful circumstances force people to admit that total control is an illusion.  When this happens people get angry, sad, frustrated, etc.  You do not have to have a stroke to struggle with accepting you cannot control everything that happens to you and the people you love.

As a stroke survivor my goal is not to achieve total acceptance.  Even after 13 years there are still new challenges that make me angry or sad.  My goal is to reduce the amount of time I am angry or sad.  Here is what I try to remember when acceptance flies out the window.  Cognitive therapy says the one thing we have control over is our thoughts.  Thinking an event caused my feelings is incorrect.  When my emotional response to a situation makes me suffer, I eventually remember that how I choose to interpret what happened to me affects how I feel about it.

However, cognitive strategies are not necessary when I have a meaningful goal that gives me a sense of purpose and a list of things to do.  I am happy right now because it is a busy time for me as the Treasurer of my Home Owners Association.  I am happy because my presentation has been accepted for the Illinois Occupational Therapy Association annual convention.  I am busy working on my Power Point presentation.  This also means I can visit my family in Illinois before I go home to New Jersey.  If only acceptance of the life I have was always so easy.

Good and Bad News About Hand Recovery

I do not have a high level of hand recovery so I look for studies that do not cherry-pick high functioning stroke survivors to test the efficacy of rehab.  Many studies with positive results start with stroke survivors who already have beginning finger and thumb movement.  To decide how excited to get I look at the outcome measures as well as the statistical differences before and after treatment.  Looking at test scores is a good way to decide if research results apply to someone like you.

Franck and his associates studied stroke survivors with no spontaneous hand recovery (1).
Group 1 was taught to keep the affected arm/hand in an "optimal condition" and what to do when discomfort occurred.  Before rehab, the highest score on the Fugl-Meyer test was a 9 out of 66 which can be achieved with arm movements like reaching.  After 6 weeks of rehab for 4.5 hours per week, the highest Fugl-Meyer score was a 20 which can be achieved with NO hand or wrist movement.  After rehab, object manipulation on the Action Research Arm Test (ARAT) improved from 0 to 1 out of 57 for the highest functioning subject.  This is the bad news.

Group 2 had a very small amount of spontaneous hand recovery.  Before rehab Group 2 had ARAT scores for object manipulation ranging from 1 to 9 out of 57(1). They were given "high-intensity" therapy for 6 hours per week for 6 weeks to use their hand during functional tasks.  After rehab, the highest Fugl-Meyer score improved from 25 to 54 out of 66.  This dramatic improvement can ONLY be achieved with hand and wrist movements.  After rehab, the highest ARAT score improved from 9 to 42 out of 57.  This dramatic improvement can ONLY be achieved by gaining the ability to pick up objects like a ball.  Turning a tiny bit of spontaneous recovery into the ability to manipulate objects is the good news.

1. Franck J, Johannes R, Smeets E, Seelen H. Changes in arm-hand function and arm-hand skill
    performance in patients after stroke during and after rehabilitation. PLOS One. 6/21/2017.
    doi.org/10.11371/journal.pone.0179453

Garbage Never Stops Being a Challenge

Bottom-Line: I live alone so paying an assisted living facility $5,000 a month is a very expensive way to get someone to handle my garbage.

As my 1st post on garbage explains, managing garbage after a stroke is a challenge.  Replacing the cracked garbage can I keep in my kitchen has taken a lot of thought.  I cannot buy a garbage can that opens by stepping on a pedal.  This mechanism requires the ability to slowly step on the pedal so the lid will not fling open.  My balance is not good enough to do this.  I do not want a garbage can with a lid that swings opens or springs open when you touch the top of the lid.
They have smaller openings whose edges can get spattered with food.

One step-on model made by Hefty has a lid that hangs over the rim (see arrows in photo on left).  This lets me lift the lid with the back of my hemiplegic wrist (see photo on right).  This leaves my sound hand free to carefully dump the garbage.

There are 3 things I do not like about this new can.
1.  I can lift the lid from only one side. With my old can I could lift the lid from both sides or the front.
2.  The removable garbage can liner is a much tighter fit to get around the rim (see white plastic). This mismatch is ironic because the liner is made for this size can and the garbage can and liner are made by the same manufacturer (Hefty).  3.  I do not like the black color.  My old garbage can was a light green which matched my kitchen decor.

Writing Aids I Cannot Live Without

The long boring weekends in the rehab hospital drove me crazy.  When Kathy, my recreational therapist, gave me an opportunity to practice writing with my sound, non-dominant left hand I jumped at her offer.  My friend Arlene did not volunteer to write checks to pay my bills for the rest of her life.  Kathy helped by bringing me clear Dycem and crossword puzzles she had enlarged on a Xerox machine to make the spaces bigger.  Clear Dycem is thin and slightly sticky so it holds the paper still as I write.  Solving crossword puzzles was more fun than writing letters of the alphabet over and over like I did as a young child in school.

When I got home I found clear Dycem at www.pattersonmedical.com but was shocked at the price.   However, I splurge on a small roll of clear Dycem which costs $55 + shipping and handling because it is a writing aid I cannot live without.  I have pieces of it every where I sit down to take phone messages, pay bills, do crossword puzzles, write reminders on Post-It Notes, etc.  I make it last longer by washing it.  A small roll (8 inches x 2 yards) lasts almost two years. 

I keep a small piece of clear Dycem in my purse (see arrow) to hold credit card slips still when I sign them.  As you can see, this dirty piece of Dycem is well used.  I also splurge on gel pens that cost $15 a box.  Gel pens are more forgiving that ball point pens that must be held at a precise angle to make the ink flow.                                                                                                                                                                                                                                   When I eat at restaurants that have tables with slippery surfaces this small piece of clear Dycem stops my plate from sliding as I cut food.  I appreciate not having to whip out a big brightly colored Dycem placemat to announce to everyone in the restaurant that I am disabled.

Reviewing Virtual Reality Rehab

Between September 2011 and May 2017 Dean published 173 posts about the use of virtual reality to provide rehab for stroke survivors.  The results for the hand are depressing.  For six years research focused on a subject's ability to touch an object on the screen so the computer can move the object or make it disappear.  Enjoying these quick reactions is not enough to justify the cost of this expensive equipment.  It was a good place to start 6 years ago, but stroke survivors want to manipulate objects with their hand.

There is a glimmer of hope.  Gauthier (1) used video games that make stroke survivors do more than use their shoulder and elbow to reach forward and side to side.  These games require forearm and wrist motions.  This may not sound exciting but these motions orient our hand to the many different positions objects rest in. The photo shows the forearm is halfway between palm up and palm down so the hand can pick up a glass.  Cocking the wrist means the rim of the glass is not pointed at the ceiling but at the person's mouth.

Unfortunately, Gauthier selected stroke survivors who already had a few degrees of active forearm and wrist movement.  How can subjects make the leap from just reaching to turning their hand palm up to catch a parachute on a video screen?  My OT gave me exercises that helped me regain forearm and wrist motions.  These small motions make me more independent.  For example, I can turn my hand halfway between palm up and palm down to grab my cane so my sound hand can catch the door before the person in front of me lets it slam shut.  I picture stroke survivors practicing forearm and wrist motions and then immediately trying to turn their hand palm up so they can turn over a card on the computer screen.
Fun + lots of repetition is good.

1. Gauthier L, et al. Video game rehabilitation for outpatient stroke (VIGoROUS): protocol for a multi-center comparative effectiveness trial of in-home gamified constraint-induced movement therapy for rehabilitation of chronic upper extremity hemiparesis. BMC Neurology. 2017;17-109. doi:10.1186/s12883-017-0888-0.

A Great Why Deserves a Great How

I love a TV commercial where a father stands outside a gym after a basketball game and says he missed his son's winning shot because he was outside smoking a cigarette.  He decides to wear a skin patch to stop smoking.  The slogan for this TV ad is "a great why deserves a great how."
This commercial reminded me that the how-tos I know as an OT are not enough to be successful.

As the fear of being home-bound faded over 13 years of living with a stroke my walking endurance declined.  However, I live alone and cannot fold a wheelchair or lift it into the trunk of my car.  So I tried to improve by setting a goal of a specific number of steps on my pedometer.  I was frustrated when my data showed I walked less after I set this goal.  When my iphone played an annoying sound I turned it off and thought "I will walk tomorrow."  Then I remembered the calf muscle pump.

The heart is not strong enough to pump the blood out of the legs.  Blood pooling in the legs can form a blood clot which can break off and go to the brain to cause a stroke.  This made me think about what is happening when I sit at the computer, etc.  However, when calf muscles contract they squeeze the veins which helps push the blood upwards (see diagram below).  Between heart beats when the heart rests blood drops down inside the veins, but valves snap shut and blood is trapped at higher and higher levels.  This repeats until all the blood in the legs goes back to the heart.

I have met or exceeded my walking target every day for three weeks.  Having a concrete image of what is happening in my legs right this minute is the great why I needed to change my behavior.

Review of Paratransit

Clients do not know if they can use paratransit without knowing the demands of a system.  Here is a comparison of two systems I used.  One service covers the state of New Jersey and the other covers my county.  I needed paratransit because trips must be made repeatedly to stay at home - bank, grocery store, drug store, doctor, dentist, out-patient therapy, post office, clothing store, etc.  Paratransit kept me out of long-term care until I regained the ability to drive.

Language.  To qualify for the county service I had to give my address and diagnosis during a phone conversation.  The state required a one hour in-person interview where I had to explain why I could not take public transportation.  For example, my balance is poor so I would fall if I was standing when the vehicle started moving.  When making a reservation, both systems required me to tell them what ambulatory device I used so they knew what type of vehicle to send.

Planning Ahead.  For the county a reservation had to be made 2 weeks in advance and they asked only for my name.  For the state a reservation had to be made 24 hours in advance and they asked for my paratransit identification number.  To remember the pick-up times for a trip I wrote them on a calendar that sat on the table where I ate breakfast.  The county required only the name of the store because the person making the reservation was local and knew the area.  The state required exact addresses and names of cross streets because the person making the reservation was miles away.  I got out a list of these destination details before making a reservation.  Both services had a two bag limit.  This meant I had to plan multiple trips when I needed bulky objects like toilet paper.

Money Management.  The county service was free.  The state service required exact change.  They told me the cost of a one-way fare when I made a reservation.  Cost was based on what it would cost me to make that trip on public transportation (e.g. bus fare of $2.25).  I kept a small supply of one dollar bills and coins.

Strength.  The county provided door-to-door service which meant the driver provided physical assistance to go up and down stairs or a ramp and carry packages.  The state provided curb-to-curb service,  This meant the driver stood by the vehicle while I got myself in and out of the house and transported packages.  Both services had vehicles with a wheelchair lift to get a client in and out of the vehicle. 

Time Management.  The county service picked me up close to the time of my reservation.  The state picked me up within 40 minutes of the time I requested.  I had to plan an extra 80 minutes into every trip in case I had to wait the maximum time at both ends of my trip.

Endurance.  The county sent a vehicle to my neighborhood to take people over 65 to the senior center.  That meant I had a short 2 mile ride with the seniors before I was dropped off at the grocery store.  The state runs long trips with multiple destinations.  When I had to wait for other people to be picked up and dropped off, I might ride for an hour before reaching my destination.  Even more tiring was the 40 minutes I might have to stand before I was picked up at the store. 
I had to be at the door so I could see the vehicle which waited only 5 minutes.  I bought a folding three-legged stool with a shoulder strap that hunters use so I could sit down if I got too tired.

Balance.  Both services did not allow the drivers to start driving until I was seated and had my seat belt fastened.  Vehicles that carried wheelchairs had tie-downs which the drivers handled.

Bottom-Line.  Different paratransit services require different physical and cognitive skills. 
A generic test like the Transportation Skills Assessment Tool is not enough to assess a good person-environment fit.

Some People Feel Compelled to Help

I snapped at a dear friend when she offered to retie my loose shoelace.  Even though I said I could do it, she insisted on helping.  This made me angry because every doctor I have seen since my stroke reaches down to untie my shoes during a physical exam.  They do this quickly because they know it is inappropriate for a male doctor to undress a female patient.  I do not know how old I was when I decided my clothing is a part of my personal space, but it was a long time ago.

I have yet to convince people they cannot tie my shoelaces. Telling my friend I could do it as fast with one hand as she could do it with two hands was not a deterrent.  She said "I could tie your shoe at least once so you won't have to."  My strategy to handle this more gracefully next time will be to point and say "Can you tie a shoelace that has only one free end?"  

P.S.  The strategy above works.  Able-bodied people no longer get upset when I will not let them help me tie my shoe.

Surgery is Dangerous for Me

Since knee surgery my standing balance is worse.  I have repeatedly stumbled backwards because I cannot feel when I am leaning too far behind vertical.  Losing my balance was the first symptom of my two brainstem strokes.
My strokes were caused by narrowing of the vertebral artery that supplies blood to the pons.  The pons in the brainstem is the bridge to the cerebellum which controls balance.

There is a chance that bending my neck back to put a breathing tube down my throat during surgery put a kink in the vertebral artery in my neck.  If a 15 minute meniscal repair surgery impaired my balance, I do not want to see what happens after a longer knee replacement surgery.   

Bottom-Line: I am serious about the exercises I got from my latest PT.

Rolling Discharge While I am Still in Therapy

When I am in therapy I do a rolling discharge.  I never wait until I am discharged to start doing exercises at home because there are often problems transferring exercises to a new environment.

The 1st challenge is modifying how I exercise at home because I do not have the right equipment.  For example, my PT had me lie on my stomach on an 8 foot wide mat table and bend my knee.    I need strong knee flexors to stop the joint-damaging SNAP my knee makes when I straighten it to swing my leg forward to take a step.  However, my single bed at home is narrow.  I tried lying on my back close to one edge, rolling onto my stomach which moves me to the other edge, and carefully inching my way back to the center by pushing with my elbows.  This was scary and stressful for my hemiplegic arm.

My soft bed also does not provide a firm surface to push off of.  I tried folding a yoga mat to create a firmer surface under my belly, but it was a nightmare to position with one hand.

The 2nd challenge is establishing a consistent routine that saves me from muscle atrophy after I  worked so hard in therapy.  A reliable memory aid helps me follow through on my good intentions.  I reach under the bed covers to remove the ball that keeps the covers off my hyper-sensitive big toe.  Instead of rolling the ball into its corner, now I roll it towards my leg brace.  After I don my brace the ball reminds me to go to the bathroom, stand while I hold onto the grab bar next to my bathtub, and bend my knee.  I can do 8 repetitions before my weak hamstrings poop out.

Bottom-Line:  Figuring out how to do exercises at home can take creativity and persistence.  Starting this process before therapy ends means I can ask my therapist for suggestions.