March 19, 2018

2 Containers Keep Me from Swearing c*#xf!

Able-bodied people cannot feel my pain unless you remember the intense frustration you felt when looking for a parking space at a shopping mall a few days before Christmas or at a grocery store a few days before Thanksgiving.  Now imagine this happening twice a day every day for the rest of your life.  Fatigue is a big part of a stroke so I am cannot afford to let repeated frustration drain my precious energy.  Here are two examples of how I eliminate a lot of swearing and frustration.

Opening and refolding the bag inside a cereal box (arrow on left) is a two-handed task.  I would have to use my teeth and my sound hand while I am half awake before breakfast.  So I take the bag out off the box, cut one side open with scissors (arrow on right), and pour the cereal into the container.  Each morning my sound hand flips open the lid and pours.

I am not going to twist the end of the bread wrapper and struggle to attach the tie that holds the bag closed (arrow on left).  I fold the end of the bag under the loaf (arrow on right), put the loaf horizontal, and slide the loaf inside a bread-shaped container made by Rubbermaid.  When I turn the container upright, the weight of the bread keeps the folded end shut.  The next day my thumb flips the lid off, I put the container on its side, and slide the bread out of the container.  No swearing required.

March 11, 2018

I Am Passionate About Transporting Food

I am passionate about transporting food because paying an assisted living facility $60,000 a year is an expensive way to get 3 meals a day.  Meals on Wheels delivers a sandwich and a dinner meal to peoples' homes Monday to Friday so I would still need to prepare meals and buy groceries.

Transporting food begins with getting it into my house.  I make sure the cashier at the grocery store makes each shopping bag light.  I can safely carry two light bags from the car to the front porch.  However, I need my sound hand to hold onto the railing to climb the 4 stairs to my front door.
I was frightened when I started to fall backwards because I lifted my foot before I had hold of the railing.  The back of my head could have hit the concrete patio.  So I place the shopping bags on the 3rd step, hold onto the railing when I step up to the 2nd step, reach down to lift the bags to the top step, and hold onto the railing when I step up to the top step.  This process keeps me out of the emergency room - priceless.

Transporting food after it is prepared is a challenge.  I've dropped full glasses on the kitchen floor.  I live alone and had to clean up the mess with 1 hand.  So I "counter-hop" to get a glass to my kitchen table (on left).
I do not carry a glass across my carpeted living room when I want to drink while sitting on the couch to watch TV.  I place the glass on the far side of the kitchen counter, walk to the other side, pick up the glass, and take a step to place the glass on the end table.

Another food challenge is not making a mess a host has to clean up.  For example, filling a plate at a buffet brunch requires multiple strategies.  I have to set a plate on the table so my sound hand can serve the food.  A buffet table leaves only a small space for plates so one side of the plate hangs over the edge.  I place heavy food, like meatballs, on the side away from the edge to counteract the weight of light food, like salad.  I do not overload my plate and make a 2nd trip to transport a half-full glass.  Part of having a social life is not making people regret they invited you.
Rejecting help when I can do a task is not a matter of being ungrateful.  Unnecessary help
lowers the number of steps on my pedometer for the day.  Walking prevents a loss of endurance.
I live alone so there is no "Honey-do" at my house.  I must be able to walk until I get into bed.
Unnecessary help robs me of the opportunity to use problem solving skills to find solutions for each environment.  I cannot afford to let people feel good about helping me if it means gradually losing the skills I worked so hard to regain.  For me, maintaining skills by using them every day slows the decline that can send me to a nursing home.

March 3, 2018

American Stroke Association is Badly Misinformed

Presenters at a conference of the American Stroke Association (ASA) are badly informed.
They concluded that only 43.5% of stroke survivors received home health services and only 34.1% received out-patient therapy because of health insurance problems (1).  As a stroke survivor I was shocked to learn that clients get these services ONLY IF THEY ASK FOR THEM.

In the hospital clients are given a list of home health agencies in their county.  It is the client's responsibility to contact an agency and request services.  The agency then contacts their doctor who faxes a prescription to the agency.  Getting out-patient services is even harder.  Clients have to go on-line and ask friends if they know a good therapist.  Again they have to contact the agency who asks the doctor to fax a prescription.

After two strokes, a forearm fracture, and knee surgery I learned that doctors do not prescribe home health or out-patient services.  Nor did any doctor ask me how therapy was going after I requested it.

1. Many stroke survivors don't receive timely rehab.  Los Angeles, Jan. 24, 2018.  Scientific
    Conferences and Meetings, Presentation 26, Session 44.

February 26, 2018

The Flexion Synergy Can Be Good

At first an arm paralyzed by a stroke is totally limp (Brunnstrom
Stage 1).  Stage 2 is exciting because stroke survivors see small limb movements.  In Stage 2 I could fling my hand onto my thigh, but my hand slid off because my arm muscles were too weak to hold it there.  In Stage 3 small movements turn into a synergy.  Synergy means muscles work together, but a stroke creates abnormal synergies that produce only one movement pattern.  This means you cannot change where you place you hand.  The photo shows one version of the flexion synergy.  There are many versions so your arm pattern may look different.  The flexion synergy is bad because to move one joint you have move the whole arm whether you want to or not.  This is exhausting.  When Stage 3 becomes full blown the hand is fisted and the arm is close to the body.

I was able to make Stage 3 functional with the help of an electrical stimulation device called NeuroMove which has a biofeedback component and a spring-loaded hand splint called SaeboFlex.  They helped me retrain my brain to open my hand a few inches so it could receive an object from my sound hand.  Hand-to-hand transfers let me hold an object CLOSE TO my body so my sound hand can manipulate the object. Hand-to-hand transfers made me independent in 18 Activities of Daily Living (ADLs) like taking the cap off a deoderant bottle.

Stage 4 brings more shoulder, elbow, and forearm motions that move the hand FARTHER AWAY from the body  My Stage 4 skills are: 1) keeping my hand open when I reach at waist height and 2) partially rotating my forearm to orient my hand to different positions objects require.  Bringing an open hand to an object is important because the non-dominant hand holds objects still for the dominant hand thousands of times in a life time.  My hand is still synergy bound which means I cannot open my hand unless I also move my arm.

Stage 5 means you can perform one movement of a single joint without moving any other joint (relative independence from synergy).  I was stunned to learn my hand is useful without achieving Stage 5.  As an OT I knew that stroke survivors learn to walk using the extension synergy in the leg, but I was taught the flexion synergy in the arm was bad.  I had to have a stroke to see the flexion synergy in the arm in a more positive light.

February 18, 2018

Do Not Go Gently Into That Good Night

An OT told me about a client in a nursing home who wanted to get off the toilet line.  The toilet line is for people who have to wait for two aides to transfer them on and off the toilet.  The client wanted to get off the toilet line so badly that it took her only 2 months to learn how to use her artificial leg again so she could walk into the bathroom.  This story breaks my heart for 2 reasons.  First because it confirms my worst fears about nursing homes.  I can hear the staff telling this woman she would feel much safer in a wheelchair.  Second, I thought about how her fierce determination might have kept her at home longer.  Her story reminded me of Dylan Thomas's poem.

Do not go gently into that good night
Old age should burn and rave at close of day
Rage, rage against the dying of the light

My rage was triggered recently when someone tried to take away my independence.  Women at my breakfast club gave out small gifts before Christmas.  To make it easier to take the gifts home I put them in a bag that came with one of the gifts.  The photo shows the hook on the Christmas ornament that kept getting caught on the handle of the bag.  As I was struggling I saw a hand reach across the table.  The hand disappeared when the rage I felt showed on my face.  I should have said "I'm not a young child playing with a sharp knife so I expect you to ask 'may I help you?' instead of trying to grab this out of my hand."

Most people respect my wishes when I say "I can handle it, but thanks for offering,"  When I say this to "grabbers" they insist doing something simple like opening a pillbox is quick and easy for them.  Exactly!  Fortunately friends and family have done difficult things that allow me to live alone in my home.  One example is my friend Arlene who took me into her home when I left the rehab hospital.  It took me 3 months to sell my house with one bathroom on the 2nd floor and buy a one-story home.  I try not to think about where I would have ended up without the help I really need.

February 10, 2018

Retirement Is a Challenge

I did not appreciate a predictable routine until I lost it when I retired.  Having to decide what to do every minute of the day can be exhausting.  Two morning tasks make getting up a pleasure.  Starting my day without having to decide what to do when I am half awake is not a small thing.
I am not a morning person who wakes up the minute my feet touch the floor.

The first task is making a cup of coffee.  Initially my cooking skills were awful.  When I got home after rehab I ate frozen dinners heated up in the microwave.  After getting bored with the limited selection I got the courage to cook real food.  The challenge of learning how to cook one-handed and also keep track of the sequence of steps I needed to follow was exhausting.  So I cooked one dish and ate it, cooked the next dish and ate it, etc.  After three months of learning a new way to cook I got all the food on the plate at one time and sat down to eat a meal like a normal person.  Now I can make a cup of coffee without giving a moments thought about what I need to do.  Watching myself sail through a cooking task like I did before my stroke still gives me JOY.
And of course - I look forward to that cup of coffee.

The second morning task I enjoy is doing a crossword puzzle while I drink my coffee.  Puzzles in the newspaper are too easy so I bought a crossword puzzle-a-day calendar.  After Monday and Tuesday the puzzles get really hard.  I have no interest in remembering the first name of a golfer named Ballestero, the name of a punk rock subgenre, or which movie won an Oscar for best picture in 1972.  I get insanely hard answers from the backside of the puzzle which allows me to keep going.  This means I can finish the puzzle without being frustrated.

February 2, 2018

How I Know When I Need to Ask for Help

Reading instructions for how to submit a DNA sample triggered the thought process I use to decide if I need to ask for help.  My pre-stroke experience is not helpful because when I was able-bodied I had zero awareness of how I used both hands during many tasks.  So the first time I do a new task goes badly.  Yet I learned to never let my first attempt determine if I give up or keep trying.  I make a final decision to persevere or ask for help based on my learning curve -
how quickly I get better with each rehearsal.

Another strategy for deciding when to ask for help is how severe the consequences are if I fail.  I do not have to get up on a ladder to change the batteries in my smoke detectors to realize this could produce a very bad fall.  My friend John is glad to do this dangerous task for me.  And when I read the instructions for a DNA test I learned I would have to screw a tiny cap on a tiny tube so none of the blue fluid would leak out when I vigorously shake the contents.

I thought about the strategy I use to hold a tube of mascara while I remove the mascara wand.  But the cost of spilling the DNA test is high.  If I mess up I will have to pay $99 to buy another test kit. My friend Peggy was happy to do this tricky two-handed task for me.

January 28, 2018

The Zipping Challenge is Not What You Think

Velcro tabs do not keep me warm.  When I sit, gaps form between the Velcro tabs which lets body heat escape.  So I learned to zip my winter coat.  I was surprised to learn the hardest part is NOT grabbing the zipper tab.  The fabric tab attached to the metal tab (see white rectangle) and a rubber cot on my thumb that is used to count money makes pulling the zipper up easier.  The step that requires skill only my sound hand has is holding the bottom of the coat with 3 fingers.

The photo on the right shows that holding the bottom of a coat requires two separate skills.  First, my index finger on the bottom of the coat must push upwards to keep the two ends of the zipper perfectly aligned after they are joined.  Zippers do not work when they are not perfectly aligned.  Second, my thumb and middle finger must pinch the bottom of the coat to hold it still while my hemiplegic (paralysed) hand pulls the zipper tab up.  Some stroke survivors never recover this kind of individual finger control.

Task modifications described above make grasping the zipper tab easier. However, my hemiplegic hand can pull the zipper tab up only two inches.  Going higher forces my wrist to bend into flexion which makes my hand open.  Wrist flexion is how police force suspects to open their hand and drop a weapon.  After two inches, I switch so my hemiplegic hand is holding the bottom of the coat while my sound hand finishes the zipping.

January 20, 2018

A Skill That Shapes My Stroke Experience

My friend Peggy has a skill I am grateful for.  For example, I told Peggy my days of searching for objects in my purse are over.  After a short pause she said oh right - "you need one hand to hold objects out of the way so your other hand can dig for what you want."  I told Peggy I cannot use the middle seat of her van because I cannot sit on the edge of the seat and slide my body into the vehicle.  After a short pause I heard Peggy say "oh" as in "I understand."  There is nothing for me to sit on when Peggy opens the sliding door because the short middle seat leaves room for people to walk to the back seat.  I would have to climb into the van with nothing to hold onto.

Along with her caring heart, visual-motor skills make Peggy a God-sent when I ask for help.  She correctly guesses my dilemma because she sees a picture in her head and analyzes how I would have to move in that environment.  I am a visual-motor learner so it is a relief to talk to a person who has this same ability.  Without having a stroke, Peggy can see what will help me the most without my having to describe my problem in detail.

OTs call this type of analysis "person-environment fit."  Acquiring this skill as an OT changed the trajectory of my stroke experience.

January 11, 2018

Update on Urinary Incontinence

There is a stroke issue I have never shared with doctors, family, or friends - urinary incontinence.  After I feel the urge to urinate, I have 5 minutes to get to a toilet before I begin to slowly leak urine no matter how hard I squeeze my muscles.  I manage this problem by memorizing the location of every bathroom in the places I visit in the community.

What puzzled me is that I lose control only when I am 2 feet from the toilet.  I tried squeezing my muscles tightly as soon as I make the decision to go to the bathroom.  This strategy did not work during the final 2 feet.  Then I tried the opposite - thinking calming thoughts so I would not panic.  This also did not work.  Then I realized when I am talking to a person the urge to urinate goes away.  So I started picturing myself talking to an employee at the help desk located at the front of my grocery store.  There is NO WAY I am going to pee on myself in front of all the people entering the store.  To my surprise, creating this visual image gets me the last 2 feet to the toilet without fail.  What neurological pathway fires which allows a visual image to control a urinary sphincter muscle?