Meaningful Activities Make My Brain Ache

My presentation has been accepted for an OT conference.
I have presented at nine OT conferences and am determined to find a better way to carry the laptop I need for my Power Point presentation.  I cannot trust my hemiplegic hand to carry a tote bag.  I bought a child-size backpack which saves weight but creates problems.  I refused to go to a store to don a child's backpack with a cartoon character on it.  When a backpack arrived in the mail I realized the straps are too short.  This makes it difficult to put on and take off.  The straps are also slippery so they frequently slip off my hemiplegic shoulder.  This requires frequent stops because I have to put my cane down to push the strap back up where it belongs.  As the photo shows, this tiny backpack is barely big enough for the laptop and is too small for papers I collect at conferences.

Enter a new backpack - still child size, but the straps are longer and padded.  I rehearsed putting this backpack on and walking around to see if the strap stays on my hemiplegic shoulder.  The straps are great.  It is tall enough for me to put 8.5 by 11 inch papers inside.  My laptop slides easily to the bottom.  Yeh!


Bottom-Line: Participating in meaningful activities after a stroke requires detailed problem solving that makes my brain ache.
I was willing to do the work described above because presenting at conferences validates that what I have learned from having a stroke is valuable.  Unlike parents of young children who will eventually be able to stop packing a mountain of supplies to get out of the house, I will never be able to stop planning before I do a new activity.  Click on the "rehearsal" label below to see other examples of problem solving before participating in community activities.

Vindicated - Side Effects of Drugs Are Real

Unlike paralysis, fatigue is unpredictable.  The fatigue stroke survivors may experience means they have to break promises to do activities.  So I was not happy about the constant muscle ache I felt while taking a statin to lower my cholesterol.  Only about 20% of people experience this side effect, but when added to the fatigue associated with a stroke, it can be devastating. I finally got disgusted enough to tell my doctor that if he did not lower the dose of my statin I would stop taking it.  He cut my dose in half and the muscle ache and fatigue receded.

I was not imaging that statins affect muscles (1, 2, 3).  Researchers discovered statins interfere with a muscle's ability to store energy in small cells called mitochondria.  Statins can lower the level of enzymes that mitochondria need to perform their energy-storing function.

Good news: A lower dose of a stain maintained my lower cholesterol score while it increased the energy I need to have a life worth living.

1. Bouitbir J, et al., Opposite effects of statins on mitochondria of cardiac and skeletal muscles.
    Eur Heart J. 2012;33(11):1397-407.
2. Reynolds G. Can statins cut the benefits of exercise? NY Times. 2013;May 22.
3. Schirra T., et al. Stain-induced myopathy is associated with mitochondrial complexx III inhibition.
    Cell Metabolism. 2015;22:399-407.

Preventing Volunteer Burnout

If I live long enough I may have to go to a nursing home.  Using my volunteers wisely makes it more likely they will continue to help me so I can stay in my home.  I use 7 strategies to keep my volunteers from burning out (13 years and counting).

1. Prioritize.  I cut down on the number of requests by identifying what I need versus what I want.  I need someone to get on a ladder to change the batteries in my smoke detectors.  These detectors are connected to my electrical system that maintains an ear-splitting screech when the battery dies.

2. Build trust.  People do not need special training to know when they are being taken advantage of.  When I ask for help
I let my volunteers know I do everything I can before I contact them.  For example, when I asked Peggy to tape a bag shut so I could return a coat in the mail, I explained I had affixed the return label but did not trust my sound hand to tape the end of the bag securely.  People feel good about helping when they know they are really needed.  This strategy builds trust.

3. My husband would groan rule.  I cannot ask people to do things that would make a husband groan.  I cannot ask someone to buy a live tree, transport it, drag it into my house, use an axe to trim the base so the tree fits in the stand, and tighten and loosen the tree stand to reposition the tree until it is straight.  After having live trees my whole life
I bought an artificial one.  John takes it out of the box and snaps the four pieces together.

4. Let them choose WHAT to volunteer for.  I e-mail a request and let people choose things they want to do.  Peggy who loves to sews repaired the sleeve on my raincoat.  Barbara who is a computer technician volunteered to help me set up the Bluetooth system in my new car.  Parts of a task a volunteer hates will not get done.  Letting people choose what to do means I do not risk rejection because I have asked the wrong person.

5. Let them choose WHEN to volunteer.  After they volunteer I ask them when would be a good time for them.  Everyone has busy lives so it is less of a burden when I fit into their schedule.

6. Make a list and stick to it.  Before someone comes I make a list of the things I need done so my volunteer knows when he or she is done.  I stick to the list instead of looking around and saying "there is one more thing I need you to do."  This list also reminds me to get materials my volunteers need.  Before John comes to replace the batteries in my smoke detectors I buy 9-volt batteries.

7. 80% rule.  The 80% rule means some things can be mostly correct rather than perfect.  After my stroke I gave myself permission to not make everything perfect.  For example, I do not make multiple trips around my bed so the bedspread is perfectly straight.  The seam of my bedspread is supposed to be where the edge of the mattress is (see the black line).  I think it is only fair to extend the 80% rule to my volunteers. Nobody wants to hear they did not do it the way I used to do it.

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.