Are Sadness and Anger Bad?

The holiday season often evokes strong feelings.  I used to think positive emotions like joy and love are good while negative emotions like sadness and anger are bad.  Now I believe that how I react to my emotions is what is good or bad.  When I let moments of joy fly past me unnoticed because I am pre-occupied by internal mental chatter it is bad.  When I stop what I am doing and take a few seconds to appreciate when I am happy it is good.  When I rerun upsetting episodes in my head it is bad.  When I use anger to propel me towards a solution it is good.

When I was young I had the tremendous energy it takes to sustain emotional drama.  A stroke took away the energy I need to stay upset for a long time.  Being snubbed recently reminded me of how intense emotions can be.  I was upset the day I was snubbed.  By the next day -- not so much.        By the third day I remembered letting this person upset me gives her power.  By the fourth day I remembered I was upset for decades when I was young but can not remember most of what upset me.  Hence the irritating platitude -- this too shall pass.  

How I react to my emotions is a conscious choice, but I forget this again and again.  Fortunately, as I get older I remember this insight sooner and suffer less.  homeafterstroke.blogspot.com

Walking in Snow with a Cane

Warning: I do NOT use my cane to walk through snow.  I wait until a neighbor I pay shovels my walkway and digs out my car.  I must be able to see the ground to tell if there is an icy patch that could make the spikes of my Briggs Ice Cane/Crutch Attachment slip.  Checking the ground for ice slows me down, but it gets me to my car safely so I can drive.

The photo shows the attachment in the up position to keep it out of my way.  I bought it at a medical supply store near my home.  The advantage of buying it in a store instead of on-line was the saleswoman got out a screwdriver and fastened the device to my cane.  














To lower the prongs, I place the cane in my affected hand and my sound hand pushes the device down until I hear it snap into position.

The device makes my cane slightly heavier which slows me down which is not as bad thing.

I use a different cane during warm weather rather than take this device off and try to put it back in the same place each winter.  homeafterstroke.blogspot.com

Glad I was a Therapist Before I was a Professor

I am glad I worked as a therapist before I became a professor.  School creates a false sense of security.  If you do not know the answer, you can ask teachers what they think the right answer is.  Book learning is a good place to start, but it does not tell you what to do when some clients do not respond to treatment that works well for many clients.  Therapists are humbled when they have to say "I don't know" when information taught in school does not work.  Therapists have to generate their own solution and watch carefully to see if it helps.

In school you learn information in one unit and then move on to the next unit.  However, the right thing to do in the clinic is a moving target that keeps changing as the client improves.  I was reminded of this when my in-patient PT said I was getting better.  I complained that walking was not getting any easier.  She said she was helping me less.  I never thought to tell my clients this either.  homeafterstroke.blogspot.com

Keeping My Christmas Spirit

This is a photo of the artificial Christmas tree my friend John put together every year since my stroke.  Placing a small folding chair next to this big tree meant I could sit close and lean forward instead of leaning down to decorate the bottom half.  However, decorating this six foot tree is tiring.  Since fatigue is one of my triggers for falling I ordered a small table top tree.

I enjoy seeing the 3 kings, shepherd, and sheep visiting the Christ child.  I made these figures years ago when my hobby was needlecraft.  I also love the tiny pink and blue Christmas tree balls.  I am amazed by how happy small things make me.

After two years I gave my big tree and normal-sized decorations to my church for their annual sale that raises money for local charities.    homeafterstroke.blogspot.com

Hard to carry over skills acquired during exercise

  

The transition from exercise to functional tasks can be difficult.  Functional tasks require clients to divide their attention between thinking about what their body is doing and watching what objects are doing.  For example, I kept dropping a tube of toothpaste until I realized only my thumb and middle finger contact the tube of toothpaste.  The photo shows this precarious grasp.  Dropping an open tube produces a splatter of sticky toothpaste on the floor.  So I press the end of the tube against my stomach to hold it still while I watch my sound hand remove the cap.   

Fortunately I have a strategy for dealing with my negative emotions when I fail during functional tasks. The first time I try a new task, one or more steps are difficult or impossible for me to do.  This means I cannot finish what I started.  To help me persist in the face of failure I call my first attempt a rehearsal.  The purpose of a rehearsal is to discover solutions that will make my second attempt awesome.  Waiting until the next day also gives me time to think of new things I can try next time.    homeafterstroke.blogspot.com

Donning a Bra One-Handed

Women with small breasts have the last laugh.  I need a bra because my large breasts are closer to my waist than I thought was possible.  Being able to don a bra means I do not have to go to dinner at a friend's house and say "Could you fasten my bra when I get there."  Living alone makes social occasions a source of happiness I do not want to give up.

In sitting, I put the hook end in front of my stomach.  To keep the bra still, I fasten a clothes pin to the hook end and tuck the free end of the clothes pin under the elastic band of my underpants.  Then I flip the free end of the bra behind me until both ends are in front.          I hook the 1st hook, remove the clothes pin, and hook the remaining clasps.  It it not enough to rake the hooks over the clasps.  I have to press down on each clasp to make it slip under the hook.  I turn the bra around and put my arms* in the straps.  Then I lean over to get my breasts fully in the bra cups.   

*Putting bra on - affected arm goes in first.  Taking bra off - affected arm comes out last.

In the winter, I keep the bra straps from repeatedly slipping off the dry skin on my shoulders by putting a small dab of lotion on a Kleenex tissue.  Then I use a Q-tip swab to transfer the lotion to the top of each shoulder.  Aveeno lotion with oatmeal creates friction.  In summer when my skin is dewy with sweat, it is easier to turn the bra around if I shake a light coating of corn starch along the bottom elastic band before I don the bra.  homeafterstroke.blogspot.com

Achieving Long-Term Goals is Complicated

Achieving long-term goals is complicated for people who have a chronic condition like a stroke.
It took five OTs a year to transform my relationship with food.  My in-patient OT made sure I knew how to make myself presentable when I went to live with my friend Arlene after rehab.  I would have been embarrassed to sit at Arlene's dinner table with sweaty pajamas and greasy hair.  My 

in-patient OT also addressed cold food prep so I could prepare my breakfast and lunch while Arlene was at work.  My home health OT addressed advance cooking skills I would need when I returned to my home.  Two rounds of out-patient OT prepared my arm and hand to maneuver a shopping cart around numerous obstacles at a grocery store.  A fifth OT provided certified driver training so I no longer had to spend two hours with paratransit to go to and from the grocery store.

Progress towards long-term goals is difficult to achieve for two reasons.  First, institutional autonomy does not allow communication between staff who work at in-patient, home health, and out-patient agencies.  Only the client sees all the steps towards a long-term goal.  I kept the momentum going by telling my OT "the next thing I want to do is ...".  Second, in the 16 years since my stroke no doctor recommended out-patient OT or PT.  They gave me a prescription for therapy when I asked for it, but they never asked how it helped me.  I had to go on-line to find out-patient clinics near me and ask friends if they would recommend a therapist they had gone to.
homeafterstroke.blogspot.com

What I Did Not Know as an OT

A friend told me how disappointed she was after she wore a light backpack while walking on the boardwalk at the beach.  It has been six months since her shoulder surgery so she did not expect her shoulder to ache after this walk.  Her story reminded me of how I felt when I had setbacks in my recovery from a stroke and total knee replacement surgery.  Her story reminded me of when I told my therapist I was discouraged because of a setback.  My therapist tried to reassure me by saying lots of people have setbacks.  This made me realize that seeing a setback is not the same as experiencing one.  

What I did not know as an OT was that being able to deal with powerful emotions and negative thoughts is as important as dealing with the pain and fatigue created by physical challenges.  I no longer wonder why some people die soon after they have surgery to repair a broken hip.  Half of recovery is mental and emotional.  homeafterstroke.blogspot.com

The Flexion Synergy Can Be Good

In Stage 1 the arm is totally limp.  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.  When I was able-bodied I thought keeping my hand on my lap was effortless, but it requires shoulder and elbow strength.  Stage 3 is bad because an abnormal synergy produces only one movement pattern which dictates the one place you can put your hand.  

The photo shows the stab-yourself-in-the-stomach version of the flexion synergy.  There are many versions so your movement pattern may look different.  The flexion synergy is also 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 made 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 can receive an object from my sound hand.  Hand-to-hand transfers let my affected hand hold an object close to my body so my sound hand can manipulate the object.  Hand-to-hand transfers made me independent in over 30 bimanual tasks like taking the cap off a deoderant bottle.

Stage 4 brings shoulder, elbow, and forearm motions that move the hand farther away from the body.  Keeping a hand open while reaching for an object is a skill able-bodied people use thousands of times.  My emerging Stage 4 skills are: 1) keeping my hand open when I reach at waist height while standing and 2) partially rotating my forearm to orient my hand to the different positions objects require.  My hand is still synergy bound so I cannot open my hand unless I also move my shoulder.

Stage 5 means you can move one joint without moving all the other joints in a limb.  I was stunned to learn my hand is useful without achieving Stage 5.  As an OT I knew stroke survivors walk using the extension synergy in the leg, but I was taught the flexion synergy in the arm is bad.  I had to have a stroke to see the flexion synergy in the arm in a more positive light.  homeafterstroke.blogspot.com

Friends/Family Who Volunteer for Big Tasks

I am stunned by friends and family who volunteer to help me with big tasks.  After my stroke I had to move out of my house that had one bathroom on the 2nd floor and a washer and dryer in the basement.  A friend told me I could stay with her while I was looking for a one-story home.  When I was ready to move, my brothers 800 miles away called to tell me they were coming to pack up my house.  Two friends 1,000 miles away called to tell me they were coming to unpack my belongings.  Before I moved into my new home a friend told me she was going to take me to the grocery store so I could buy food to fill my empty kitchen.  I used to think people offering to help with a big task without being asked was something that only happened in movies.

Currently, a friend knows I hope to move to an independent living facility in Michigan to be closer to my brother.  While we were at a restaurant, she offered to drive me 800 miles and drop me off in Kalamazoo before she goes to see a friend who lives 90 miles away.  

This support gives me a big boost in confidance which helps me turn their efforts into a good outcome.  One of the ways I repay kind people is to work hard to succeed.  homeafterstroke.blogspot.com 

Motion Capture for Stroke Survivors

As a stroke survivor and an OT who specialized in stroke rehab, I am not impressed with most motion capture systems for stroke survivors.  First, these systems create the impression that you need a computer to see and analyze movement.  But analysts who watch ice skaking and diving demonstrate how accurate the human eye is when you know where to look.  Slow motion replays have proven that experts can detect if a skater's foot did not land correctly after a quadruple jump or divers bent their hips slightly just before they entered the water.  Second, most of these systems focus only on shoulder and elbow movements while the hand maintains a static grasp on a handle.  Hello - all the arm does is deliver the hand to the target.

The one system that impresses me is Amadeo.  It monitors each individual finger plus the thumb as the hand opens and closes.  It provides biofeedback to help clients learn what their muscles are doing before they see visible motion.  It can provide EMG stimulation if a client's muscles need assistance.  The forearm can be placed in different positions to help the hand adjust to different positions that objects assume in the real world.  It can be used in exercise mode or with video games.  You can see a demonstration of Amadeo at youtube.com/watch?v=GM9HjI2OIrA.            Of course, roll-out of this system is constrained by how many rehab centers can afford it.  homeafterstroke.blogspot.com

Organizing My Purse is a Vital Shopping Strategy

Trying to find something in my purse by digging around with one hand is awful.  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 my car key on a green wrist coil to make it easy to retrieve.  I grab the wrist coil instead of searching for the key.  I made the mistake of setting the key down to pick up an object on my car seat and then locking and shutting the door.  Seeing my car key on the dashboard was awful.  The AAA car service 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 to tell me I have my car key before I get out of my car.                                                                                                My house key is on a straight flexible coil that is hooked on my purse.  All I have to do is pull on the coil to make my house key slip out my purse.   

I can 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.    homeafterstroke.blogspot.com

Hand Use Able-bodied Adults Take for Granted

When my hand was flaccid I had to put objects in my mouth or squeeze them between my thighs to hold objects still.  When I was able-bodied I never noticed the dozens of times each day I reached out to hold an object still so the other hand could manipulate it.  For example, it is awful to be unable to open the milk after I get out cereal, a bowl, and a spoon.  After rehab, my affected hand can hold the milk container still so it does not spin around when I remove the cap. 

My affected right arm can reach for and hold a lint trap so my sound left hand can clean the lint trap.  . 

I am grateful that my OTs, NeuroMove, and Saeboflex helped me change my hand from completely flaccid to being useful every day. homeafterstroke.blogspot.com

Reducing Spasticity Without Needles

Many stroke survivors suffer with painful muscle spasticity.  

For example, the photo shows that spasticity can force stroke survivors to point their toes every time they straighten their knee to take a step.  Spasticity has been treated with Botox shots and repeatedly sticking needles into the painful area (needling).  

Researchers found a less painful way to treat spasticity (1).          Both the experimental group (n=25) and control group (n=25) got 30 minutes of exercise followed by 30 minutes of wearing a TENS unit that provided relaxing muscle stimulation.  The experimental group then had their ankles taped in the bent position to stop them from pointing their foot.  The tape was replaced every day.  Treatment was given 5 days a week for 6 weeks.

After treatment both groups showed reduced ankle spasticity and faster gait.  However, the group that also had their ankle taped improved significantly more (p < 0.05).  Creating a less painful way to treat a painful condition would be my preference.  homeafterstroke.blogspot.com

1. Tae-Sung In, Jin-Wae Jung, Kyoung-Sim Jung, Hwi-Young Cho. Effectiveness of transcutaneous electrical nerve stimulation with taping for stroke rehabilitation.  Biomed Research International. 2021; Article ID 9912094. doi:10.1155/2021/99112094.

Kalamazoo

After living alone for 18 years with a stroke I am tired of dealing with home and yard maintenence, parking my car on the street which forces me to deal with snow, struggling to get groceries up my front steps, and cooking one-handed.  In September I was going to visit an independent living site I like in Kalamazoo after the summer road repairs on I-80 were finished.  I like the information I got from the website and the sales rep, but independent living is too expensive to buy into sight unseen.  

When the delta variant sent covid cases soaring I canceled my visit.  I know the odds of catching break-thru covid are low after my 2 vaccine shots.  However, I am afraid to be alone 750 miles from home with covid.  I could be too sick to drive myself home.  Do Uber drivers deliver to the front desk of a hotel?  Would hotels allow me to quarantine with them?

Another sign that this is not a good time to visit is that the facility posted an activity schedule for May, June, and July, but not August.***  Kalamazoo county currently has twice as many new covid cases as my county which has 100,000 more people.  With the covid surge and potentially bad winter weather, my visit is delayed until spring.  homeafterstroke.blogspot.com

*** The activity schedule for September was finally published.  YEAH!  

ADLs Are Where the Repetitions Are

Brain plasticity is amazing, but rewiring the brain requires thousands of repetitions.   Activities of Daily Living (ADLs) are a great way to get those reps. The examples below show why three sets of ten each day cannot compete with ADLs.

1) Twice a day I open my affected hand to grasp a tube of toothpaste so my sound hand can remove the cap.  My affected hand opens again to hold the tube while my sound hand puts the cap back on.  In nine years I have opened my hand over 5000 times before brushing my teeth.

2)  Shopping is therapy for my hand.  I open my affected hand to let go of the cart to reach for items with my sound hand.  My affected  hand opens a 2nd time when I grab the cart to move on. My affected hand opens a 3rd time so I can empty the cart in the check-out lane and again to load food into my car.  Pick uping 30 items + empty cart + load car means I open my hand 60 + 2 + 2 = 64 times.  64 x 2 visits a week x 9 years means I have opened my hemiplegic hand 59,904 times in the grocery store.

3)  The distance I have walked at the grocery store is huge.  I step away from the shopping cart and bend down or reach up to get items I want.  The curves I make to detour around people and other carts require more steps than walking in a straight line.  According to my pedometer I walk 2,000+ steps each time I visit the grocery store.  2,000 x 2 visits a week x nine years = 1,872,000 steps!
homeafterstroke.blogspot.com

Are You Disabled?

A physical deficit may be permanent but feeling disabled can change depending on the expectations and resources of a specific environment (1).  Let me give you an example.  I heard people in the hospital say they cannot wait to eat a home-cooked meal.  But there is a catch.  At home people may be dismayed if "pop-pop" shows up for a meal when he needs a shower and a shave, is dressed in his pajamas, and has bed head.  I do not think dietary staff who deliver our meals expect patients to look good.  Resources can also be different in different situations.      In the hospital, aides help people with A.M. care and the dietary department cooks.  At home, the person who cooks and assists someone with an impairment may be the same person.  You may feel more disabled at home because your family has different expectations and resources than the hospital.  

Whether you are disabled also depends an whether you think independence should always be the goal.  Phalen says no one is truly independent (1).  Many people do not cut their hair, change the oil in their car, or prepare their tax returns.  However, able-bodied people help each other by dividing up a list of tasks.  Stroke survivors who have only one good hand may not be able to finish what they started unless they get help for specific steps during a task.  Repeatedly waiting for help during a task can get on your nerves.  My thumb leans on the independence side of the scale.  homeafterstroke.blogspot.com

1. Phalen SK. Constructions of disability: A call for critical reflexivity in occupational therapy. Canadian Journal of Occupational Therapy. 2011;78, 164-172. doi:10.2182/cjot.2011.1.78.3.4.

Practical Guide to Giving Assistance

Activities of daily living (ADLs) evaluations divide assistance into mimimal, moderate, and maximal.  The Functional Independence Measure defines these levels by the percentage of a task a client can do independently like 25 - 49%.  OTs can guesstimate these percentages because they see hundreds of clients which helps them judge a client's performance.  Caregivers need a more practical way to know how much to help.

Minimal assistance = you can multitask because your loved one can do a lot, but stay near by.      Moderate assistance = sit or stand in front of loved one because they will need repeated help.  Maximum assistance = look for ways for your loved one to help you ( e.g. have them put their arm around you to help you scoot them to the front edge of the wheelchair before you stand them up).

OTs have an incentive to keep their hands in their lap - every time they help it lowers a client's ADL score.  Caregivers have different incentives for waiting to see how much their loved one can do.  Caregivers need energy to do chores their loved one usually does, like cleaning toilets and mowing the lawn.  Caregivers also need energy to make doctor and therapy appointments, arrange transportation, deal with health insurance bills, pick up medications, set up home exercises, and deal with a loved one's difficult emotions. 

When therapists say a client needs assistance, caregivers need to think about asking for help before they get into trouble.  Nurses gave caregivers a preparedness questionnaire before discharge from rehab and asked them what they were thinking as they answered each question (1).  A dialogue is much better than a handout.  homeafterstroke.blogspot.com

1. Carmicia M, Lutz B, Harvath T, Joseph J.  Using the Preparedness Assessment for the Transition Home After Stroke Instrument to identify stroke caregiver concerns predischarge: Uncertainty, anticipation, and cues to action.  Rehabilil Nurs.  2021;Jan-Feb 46(1);33-42.  

I Take My Brace Out of My Shoe Twice a Year

Putting my foot in my brace and then putting my brace in my shoe with one hand is insanely difficult.  Instead I leave my brace in my shoe except twice a year when I transfer it between my black shoes for winter and my tan shoes for summer.

My sound hand grasps the tongue of the shoe and I let the weight of the brace swing the shoe up in the air.  I hook my hemiplegic elbow behind my knee to help lift my hemiplegic leg so I can put my toes partway in the brace.  Finally I put the shoe down on the floor and press downwards to slide my foot in the rest of the way.  No swearing required.  homeafterstroke.blogspot.com

Reheating Food Safely

Warning: Using a microwave requires safety awareness

The problem with family or friends leaving a dish for a stroke survivor to heat up in the microwave is that the thumb knocks the lid off when you pick up a dish one-handed.  Heating uncovered food in the microwave makes a mess. 

When I take a hot dish out of the microwave my sound hand is protected by a hot mitt and my hot mitt is protected by plastic wrap on the contaner.  You might wonder why a stroke survivor would use plastic wrap when it gives people with two good hands a run for their money.  Before I started using plastic wrap I had to wash my hot mitts repeatedly.  The mitt would get dirty when I slid my thumb into the dish so I could get a firm grip on the edge.

Go on-line to see the  "food wrap box."  It cuts the plastic wrap in one blow when I shut the lid.  Stretching the wrap over the dish is easy too.  I place the box next to the dish.  As I pull the plastic wrap out, the weight of the dish holds the food wrap box still.

Using plastic wrap also means I do not need a food strainer.
I use a hot mitt on my sound hand to hold he dish over the sink to let the water drain out.  The arrow is pointing at a flap of plastic wrap that is open.  I did not do this.  The water did it for me.
I lose a couple of pieces of small food now and then, but keeping my sound hand safe while handling hot dishes is priceless.
homeafterstroke.blogspot.com

I Am Angry

An article in Stroke magazine made me angry.  The authors said they could predict independent walking three months after a stroke based on early status after the stroke (1).  These predictors included younger age, good leg strength, good sitting, continence, no cognitive impairment, no neglect, and independence in activities of daily living. 

What made me angry is that the authors recommended these data be used to decide who should get rehab and who should go straight to residential care (1).  Data that describe groups of people cannot accurately predict which group a specific individual will end up in.  For example, data that says a chemotherapy treatment is 80% effective does not tell you if a client if will be in the 80% that will be cured or in the 20% that will die.  

There is no such thing as a perfect prediction because unaccounted for variables can change an outcome.  For example, years ago I went to the nursing floor and found two nurses transferring my client from a wheelchair to the bed.  When I asked why I could transfer him with minimum assistance but he needed two nurses to do it he said "therapists make you do things for yourself and nurses do things for you".  He did not show the least bit of embarassment when he said this.    I wondered which rationale he applied to his wife.  

To withhold care because of early status is *****!   It it fairer and more accurate to make decisions based on the amount, speed, and consistency of improvement.  homeafterstroke.blogspot.com

1. Preston E, Ada L, Stanton R, Mahendran N, Dean C.  Prediction of independent walking in people who are nonambulatory early after stroke: A systematic review.  Stroke. 2021 July. doi: 10.1161/STROKEAHA.120.03245.

Staying Safe When I Do Laundry

I do laundry with the help of 2 cheap pieces of equipment I bought at Walmart.  My washing machine is so deep that to reach all the clean clothes, I have to dive into the machine with my hips resting on the rim and my feet dangling in the air.  So I use tongs designed to handle food to reach the bottom while I keep my feet on the floor.  To keep frustration from ruining my success, I keep these tongs in the laundry room where I can grab them without hunting for them.

My dryer is so deep I have to lean down and stick my head in the dryer to reach all the dry clothes.  To prevent a fall I put a cheap folding metal chair in front of the dryer.  Sitting an a chair when I reach for clothes in the back eliminates a fall hazard.  I keep this chair folded and propped against the laundry wall.  

I try not to feel smug because I did not buy high-priced adaptive equipment from a medical catalogue.  homeafterstroke.blogspot.com

Teach Us to Turn in the Kitchen

Having PTs walk me in straight lines in the PT gym and walk around the block after I went home did not prepare me for the problem solving I need do while walking.  In the hospital I was in a wheelchair, but after I got home I had to teach myself to safely turn 180 degrees while standing with the support of a cane to shut the bathroom door and turn again to flush the toilet.  

Here is another example.  The photo shows the turns I take to prepare a glass of iced tea and a bowl of cereal with a sliced banana for breakfast.  Turning away from a counter is a fall hazard because it is done by stepping backwards.  I have impaired balance so my inner ear does not tell me how far away from vertical I have stepped.  After I fell and broke my forearm while turning I got scared.  Now I use itsy bitsy baby steps to backup and turn before taking normal size steps in the new forward direction.

Research on this topic is emerging.  Chen trained stroke survivors on a straight OR a turning-based treadmill (1). Subjects walked on a round treadmill that turned underneath them as they walked in one place while holding onto parallel bars.  Subjects who learned to to accommodate the constant change created by the round treadmill were significantly better at turning while walking on level ground.  Not being able to sahomeafterstroke.blogspot.comfely turn while being distracted by a purposeful activity has serious implications. 

1. Chen, I, Yang, Y, Chan, R, Wang, R. Turning-based treadmill training improves turning
    performance and gait symmetry after stroke. Neurorehabilitation and Neural Repair. 2014;28
    (1):45-55.

The Gift That Keeps on Giving

In the hospital my PT had me reach down with my sound hand to pick up cones sitting on a stool and stand up to place the cones on a shelf at head height.  I saw the value of this exercise when I started to wobble less as I reached down to pull up my pants at the toilet. I could not go home if I needed 24 hour assistance for toileting.  When Michelle did not have me squat in the morning,
I asked to do it in the afternoon.  After I went home activity analysis helped me identify how squatting keeps me safe during dozens of tasks.  Activity analysis is the gift that keeps on giving because it tells me WHY I WORKED SO HARD.

   I bend my knees and hips when I reach down to:
* Pull up my underwear and pants after toileting
* Pick up my cane after it has fallen on the floor for the thousandth time
* Get clothing out of the bottom drawer of the dresser
* Get shoes from the floor of the closet
* Get a milk carton sitting on the bottom shelf of the refrigerator
* Get a box of cereal from the bottom shelf of a kitchen cabinet
* Get a heavy pot from the bottom shelf of a kitchen cabinet
* Get a box of dishwasher detergent from under the sink
* Take a heavy book from bottom shelf of book case
* Plug a cord into a low electrical outlet 
* Pull clothes out of the dryer
* Use a garden hose to fill a watering can that is sitting on the ground
* Empty a waste basket
* Pickup a bag of garbage to take it to the outdoor garbage can
* Pick up purchases sitting on the floor of my car

P.S. Reaching down by bending at the waist with straight legs is hard on my arthritic low back.
homeafterstroke.blogspot.com

Task Modification Never Ends

A stroke can make you stop trying when you cannot finish what you started.  For example, curbside delivery at the library is great.  I select a pick-up time on-line and a staff member brings the books out to my car.  However, I am frustrated when I get the books home.  Transporting heavy or multiple books from my car to the house with a plastic shopping bag is difficult.  The bag slips down my forearm to my wrist and falls to the ground.  I tried tucking the books in my affected armpit, squeezing them close to my chest, and walking very slowly to my front steps.  This was a nerve racking trip.

Thankfully an L.L. Bean canvas tote came to my rescue.  The stiff

canvas handles stay flat and separated.  This allows me to grab one handle to keep the tote from slipping off my forarm as I walk.  Success every time is great!    homeafterstroke.blogspot.com

Qualifying for Disability Benefits

I was surprised to learn that having a stroke was not enough to establish my need for paratransit.  When I had an interview with paratransit services they asked me to give examples of why I could not take a regular bus.  My sound hand 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.  Being one-handed meant I could not demonstrate or help OT students perform bimanual therapeutic techniques.  The physiatrist who filled out his section of the SSD application form was able to document my inability to perform functional tasks because he heard therapists talk about me in team meetings.  Neurologists do not evaluate or document the loss of independence that is needed to qualify for disability benefits.  homeafterstroke.blogspot.com

Walking in the Dark

I need light to see if I am standing upright because a stroke stole my ability to feel where vertical is.  Unfortunately, my electricity goes out one or two times a year so I have learned to be afraid of the dark.  Instead of moving to a long-term care facility I put flashlights every place I sit (couch, computer, kitchen table).  My leg brace allows me to carry a flashlight in my sound so I can walk to a phone to report the outage.  However, when I get up to go to the bathroom in the middle of the night I am barefoot.  I need a quadcane in my sound hand instead of a flashlight.  A friend showed me her Energizer Folding Lantern.  It has a large handle so I can carry my quadcane and the lantern in my sound hand.  Thanks to a silvery lining this lantern is bright enough to light the few feet I need to walk to my on-suite bathroom.  

This lantern opens like a clam shell when I need to replace the batteries.  I need a big screwdriver to remove 2 screws (see small white circles) to open the battery compartment.  Searching for a screwdriver is maddening so I bought a screwdriver just for the lantern.

I keep the lantern, screwdriver, and replacement batteries next to my bed on an 8 inch wide rolling cart I found at Target.  It is the Household Essentials 3 shelf utility cart.  Before I get into bed, I place the cart where I can pull it close to me without getting up.  The lantern is on the middle shelf so I can turn it on while lying in bed.  In the dark I slide my fingers along the edge of the shelf until I feel the lantern handle.  This tells me where the on-switch is.   homeafterstroke.blogspot.com

Tricks for Stretching a Tight Hemiplegic Hand

I am haunted by a client who had her fingernails grow into her palm because the nurses could not open her tight hemiplegic (paralyzed) hand.  Here are tricks that make opening a tight hand easier. Trick # 1.  Using force makes spastic muscles fight harder. The instant you feel resistance slow down so movement is barely visible.  Patience pays off. 
Trick # 2.  Try not to touch the client's palm.  This may stimulate the hand to close.
 
Trick # 3.  To open the hand, start by bending the wrist slightly 1st.  This is how police get people to open their hand to drop a weapon.  Bending the wrist relaxes tendons that cross over the wrist before they go to the ends of your fingers.
Caution: Aim for a small amount of wrist flexion (see angle in photo).  As the tendons relax, the fingers will open slightly so you do not have to pull on fingers curled in a tight fist. 

Trick # 4.   A fist will relax even further if you straighten the thumb.  The thumb has half the muscles in the hand so it is a bully.  The trick is to wrap several fingers around the base of the client's thumb rather than pulling with the bony ends of your fingers.

 

Caution:  Overstretching the fingers can damage muscles  needed for active movement later on (lumbricals and interossei).  Always keep the fingers in a straight line with the palm.              DO NOT straighten the fingers like in the photo on the left.  

When stretching the wrist, it is better to aim for partial finger extension so muscles will relax instead of fight you.  I can get my wrist all the way back now, but I always keep my fingers in line with my palm (see green arrows).  homeafterstroke.blogspot.com

Walking in a Barren Environment

Walking in wide, empty spaces did not prepare me for tasks that force me to stop concentrating fiercely on my hemiplegic leg while I am walking.  In-patient PTs walked me in gyms with equipment and people sitting around the periphery.  When two clients who are walking approach each other the PTs look at each other and decide who will stand still while the other person moves first.  Home health PTs walked me around the block in the middle of the day when nobody was outside.  PTs work in a barren environment that does not make them aware of cognitive demands.

Stroke survivors need to walk sideways between tables at a restaurant and go down stairs that have a railing only on their affected side.  At a store - walk in circles around racks of clothing and stop for people who are not watching where they are going.  At a hair salon - sit down in the chair without tripping over the big metal footrest.  Using a public toilet - turn around to sit on the toilet regardless of which side the grab bar is on.   Clients and family members need to understand that walking requires problem solving as well as physical mobility.  

Football coaches do more than have players throw and catch footballs and do foot agility drills.  Football players eventually have to stop concentrating on their body and start thinking about their opponents' strategy as they move.  Athletes and musicians have rehearsals to make the transition from practice to function.  Why are stroke survivors not getting the same kind of help?  homeafterstroke.blogspot.com

Rolling Over in Bed Can Be a *****

Right after my stroke, rolling over in bed took horrendous effort when I was most tired.  When I rolled onto my sound side, my floppy hemiplegic arm would get stuck behind me.  It felt like a wrestler was pinning my upper body to the bed.  I had to remember to use my sound hand to pull my hemiplegic arm across my chest before I started to roll while pulling on the bed rail.

Seventeen years later rolling onto my sound side is still difficult.  One night when I wanted to roll over so I could sleep on my sound left side, my hand reached for the folding chair I placed next to my bed.  This chair is lower than my bed which makes it easier to lean down to tie my shoes.  With the help of the chair and a hemiplegic arm that now rolls with the rest of my body, I quickly fell asleep.  Once again serendipity made my life better.   

However, I have gotten good at rolling onto my hemiplegic right side to get out of bed.  My sound arm crosses over my chest as I swing my sound leg over my hemiplegic leg.  My sound hand reaches for the mattress as I hang both legs over the edge of the bed.  The weight of my legs dropping down helps pull my trunk and head up.  My sound hand pushes on the mattress to help me sit up.  homeafterstroke.blogspot.com

The Whacky Grasp That has No Name

My sound hand can place small objects between the index and middle fingers of my affected hand so this hand can hold objects still.  As an OT I know this is a weird grasp that has no name.            As a stroke survivor it makes me really happy.

The index and middle fingers of my affected hand can hold a toothbrush so my sound hand can squeeze toothpaste on the brush.  

The index and middle fingers of my affected hand can hold a cotton swab still while my sound hand cuts it in half.  This creates smaller pieces of cotton I put in my ears before I use hair spray on my short hair. 

I use my teeth to pull a rubber glove on my sound hand.  I do not want to touch shopping carts and transfer what my hand picked up to my car key, car door, and steering wheel.  When I get my groceries to my car, I use my teeth to pull the glove off inside out.  I do not want to leave a dirty glove in the cart so I place it between the index and middle fingers of my affected hand.  

I unlock  my car door and put the used glove in a cup in my car.

Then I put my groceries on my back seat.  

homeafterstroke.blogspot.com

Saved by the 80% Rule

Ironing aprons after the Spring Sale at my church reminded me of a pleasant childhood memory.  I remembered when my mom taught me to iron by having me iron handkerchiefs.  This was a simple task I did successfully the very first time.  However, it is easier to get wrinkles out of a handkerchief than an apron.  Fortunately these aprons do not have to be ironed perfectly because they will be stacked in a box until next year and will come out a little wrinkled anyway. 

This got me thinking about the 80% rule.  Business managers use the 80% rule to keep down costs.  Some tasks that are 80% correct do not affect the bottom line while others have to be closer to perfect.  The rule says you need to think about striving for perfection because the last 20% requires nearly as many resources as the first 80%.  Business managers are paid to decide when a company should spend extra resources to approach perfection.  I wish I had known about the 80% rule when I was married.  When my husband did not smooth out the bedspread perfectly I would have known  this is an acceptable business practice.

I do not know where I got the idea that ALL work has to be done perfectly ALL the time.  I used to be a perfectionist, but now I think perfection should be a conscious choice rather than a habit.  

I live alone so when I am exhausted or frustrated I use the 80% rule.  homeafterstroke.blogspot.com

Arm and Leg Synergies are Different and the Same

The affected arm is dominated by the flexion synergy while the affected leg is dominated by the extension synergy. This means muscles that straighten the knee and point the toes are strong while muscles that bend the hip, knee, and ankle are weak.  I also cannot move a single joint. 

To point my toes I have to straighten my whole leg (photo on left).  To bend my ankle I have to bend my hip and knee (photo on right).  All this unwanted movement is exhausting.

 Problem: My weak hip and knee flexors do not always lift my leg high enough to clear my toes as I take a step.  The extension synergy forces my toes to point.  The photo on the left shows me stubbing my toes.                                                                                                                                                      Solution: I faithfully wear my leg brace because it lifts my toes up which prevents falls.  

Problem: The extension synergy makes my affected knee snap into a fully straightened position every time I take a step.  This abnormal movement will eventually damage my knee.  Muscles on the back of my thigh (see pink line) are too weak to stop my knee from snapping into this dangerous position.

Solution: My leg brace keeps my knee slightly bent (see green line) when I take a step.  I faithfully wear my leg brace because I do not want to have knee surgery.  homeafterstroke.blogspot.com

New Strategy for Obnoxious Able-bodied People

While struggling to get my sound arm out of the sleeve of my coat today, I thought about able-bodied people who insist on helping me.  People who grab an object out of my hand make me angry.  The last time I was treated this way I was 18 months old.  Nothing I have said has stopped people who insist they can quickly do what I am trying to do.  They are uncomfortable watching me struggle so they assume I am frustrated.  But struggling gives me confidence.

Let me give you an example.  I have never gone to bed with my coat on because I live alone.  Instead of feeling fear when I walk in my door, I relax because I know repeatedly wiggling my sound arm will get that arm out of its sleeve.  I know this because this strategy has never failed.  The next time an able-bodied person insists on helping me, I am going to tell then they are stealing an opportunity for me to have faith in persistance.  homeafterastroke.blogspot.com

More Good and Bad News

The good news is exercise can help stroke survivors regain control of their body.  I have done exercises for 17 years after my stroke.  Pain motivates me to exercise.  When I fell I broke a forearm bone (ulna) near my hemiplegic elbow which caused arthritis.  This produces a sharp pain if I do not stretch.  Before I get out of bed, I repeatedly bend and straighten this elbow and rotate this forearm.  I also have a bad back that creates agony if I do not stretch every day.  I get up in the morning to go to the bathroom and go back to bed to stretch my back while my muscles are still warm.  Skipping 2 days makes me stiff and skipping 3 days produces pain.  

Preventing fatigue also motivates me to exercise.  A stroke can create crushing fatigue that I cannot push through.  After 2 days of walking indoors I feel tired when I walk in the community.      So at the end of each day I write that day's aerobic activity on a monthly calendar I keep on my kitchen table.  At breakfast I can see if I sat at home the day before and plan the current day's aerobic activity.  Examples include Fitbit data when I walk in my neighborhood and shopping that requires me to push a cart and repeatedly lift objects.

The bad news is I can no longer be trusted to do exercises that maintain strength.  1st, gradually losing strength does not raise red flags that compel me to act.  2nd, I have a life so I no longer want to organize my day around home exercises.  However, I repeatedly do a few reps that do not disrupt the activity I am doing.  It is hard to find an excuse for not doing these brief exercises. 

For example, I get up from the computer every 20 minutes to turn off an alarm on my iphone in the kitchen.  This alarm prompts me to do 3 brief exercises.  Before I stand up, I lean down so my hand almost touches the foor and straighten my fingers ONE time.  When I sit back up, I reach back to touch the back of my chair with both forearms ONE time.  This stretches the muscle that pulls my arm across the front of my chest (pec major).  After I go to the kitchen to turn off the iphone alarm, I sit and open my hand THREE times.  

I also open my hand when I sit on my bed to use deoderant.        I open my hand ONCE before I take the cap off the bottle and ONCE after I put the cap back on.

homeafterstroke.blogspot.com

The Zipping Challenge is Not What You Think

Velcro tabs do not keep me warm.  When I sit in the car, gaps form between the Velcro tabs which lets body heat escape.  Connecting the two halves of the zipper are relatively easy.  My right affected hand only needs a gross grasp to hold the female end of the zipper still while my left sound hand inserts the male end in its slot.                                                                            Challenge #1.  Zipper teeth do not mesh together if they are not perfectly aligned.  Only my sound hand can keep the two sides of the zipper perfectly aligned after they are joined so I can zip my coat  (see next 2 photos). 

Arrows show my sound index finger pushing up on the bottom of my coat to keep the zipper joined.  My sound thumb and middle finger pinch the bottom of the coat to hold it still as I  zip.  My affected hand pulls on the fabric zipper tab (white rectangle).     

After I broke my forearm I lost the tip pinch needed to grasp the fabric tab on the end of the zipper.  I attached one end of a tiny carabiner in the hole of the metal zipper tab (S-biner, size 2 from Home Depot).          I insert my hemiplegic index finger in the other hole of the carabiner and pull the zipper up a few inches.  The top photo shows my current coat has a zipper ring so I no longer need a carabiner.

Challenge #2.  My affected hand can pull the zipper tab up only two inches.  Going higher forces my wrist to bend due to the flexion synergy.  After two inches I switch hand positions.  My affected palm presses against my stomach to keep the bottom of the coat still while my sound hand finishes the zipping.  I unhook the carabiner and put it in my coat pocket so it is not visible at front of my neck.  homeafterstroke.blogspot.com

How I Feel Less Guilty About Asking For Help

I live alone so I am both a stroke survivor and a caregiver.   I use 7 strategies to keep my volunteers from burning out (18 years) and feel less guilty about asking for help.

1. Prioritize.  I cut down 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.

2. Build trust.  People do not need special training to know 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.  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 ax 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.  So I bought an artificial tree.  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 router for my internet service.  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, the seam of my bedspread is supposed to be where the edge of the mattress is (see the black line).
It is only fair to extend the 80% rule to my volunteers.  Nobody wants to hear that they did not do it the way I used to do it.
homeafterstroke.blogspot.com