December 31, 2015

Cheating Safely Saves My Christmas

Christmas was stressful because a stroke took away my ability to push through my fatigue.  Unfortunately I have accumulated two large boxes of Christmas decorations over the years.  I was exhausted after putting up all my decorations.  So instead of packing and repacking to get every item back in my crowded boxes, I set aside nice items that I no longer feel an attachment to for my church's spring sale.  I raised money for charity and send nice decorations to families that I hope will love them.  
I kept items: 1) that are handmade like Santa made from a mop, 2) that remind me of a happy memory like sledding with my brothers or 3) can be arranged in a tableau like the reindeer (photo below). 
Stroke survivors are not the only people who need to let go.  A workshop at my church was called "Simplify the Holidays."  The flyer said "Do you find the holidays are filled with shoulds and to-do lists?  Are you struggling with maintaining old traditions that no longer have meaning in your family life?"  The choices I make can make holiday more enjoyable.    

December 27, 2015

Not Making Exercise Personal = Non-compliance

Even though I am an OT I stop doing a home exercise if I do not see what I hope to get from it.
I think non-compliance is more likely when exercise does not feel personal.  My OT had me slide a towel on the table with my hemiplegic hand.  That exercise was to help me........  what was that exercise for?  The hand can reach to pull up pants or sign a credit card slip.  Unlike the foot, the hand is so versatile it is hard to know what sliding the towel on the table would do for me.    

Here is another example of how confusing exercise can be.  My neighbor complained to me about OT.  Her OT had her put clothespins on a clothesline.  My neighbor said "I told that young girl I had a clothes dryer, but she made me use the clothespins anyway."  As an OT I knew her therapist was working on tip pinch.  However, I did not know my neighbor well enough to know why she needed a strong tip pinch in her non-dominant hand.  If one OT cannot tell what another OT's end game is how can clients understand the value of the exercises we prescribe? 

Linking a specific Activity of Daily Living (ADL) to a specific exercise motivates clients. 
Stretch shoulder = Don shirt.  When my shoulder was tight I laid on my back on the bed and stretched it while I rested after a shower.  Stretching my shoulder just before I dressed made it easier to get my arm in the sleeve when I donned a shirt. 
Leg lifts = Boardwalk. Before I walk on the boardwalk at Point Pleasant Beach, I hold onto the railing and do a few leg lifts to wake up the weak hip flexors and abdominals on my hemiplegic side.  Leg lifts keep me from stubbing my toe on the edge of boards that stick up.  

December 16, 2015

Pain is a Great Motivator

My PT made me realize the gluteus maximus (GM) muscle on my hemiplegic (paralyzed) side was as soft as unkneaded bread dough.  This buttock muscle is called a hip extensor because it extends the leg behind the body.  Only ballerinas and runners use the GM in this way. 

I am worried about this weak muscle because the GM helps other hip muscles keep the pelvis from wobbling as we swing our leg forward to take a step (1).  If the GM does not help stabilize the pelvis, low back muscles have to do it.  With my history of back pain, my GM has to get stronger.

I am also worried about the violent snapping of my hemiplegic knee when I walk.  For the past three months this knee has been painful and slightly swollen at the end of the day.  I recently learned the GM also slows the leg's forward motion when we swing our leg to take a step (1).  So the GM helps hamstring muscles (back of thigh) stop the knee from snapping into a fully straight position before we step onto that leg.  A recent x-ray shows I do not have arthritis in this knee yet.  I do not want knee replacement surgery so my GM needs to get stronger. 

To strengthen my GM my PT asked me to clench the two halves of my buttock together.  I could not feel where the muscle on my hemiplegic side was.  The inability to locate a muscle happened repeatedly after my stroke.  I had forgotten how depressing this is.  Thankfully, lots of repetition gave me sensory awareness so now I clench my buttock 12 times a day before I swallow 12 pills.

1. Wilson J, Ferris E, Heckler A, Taylor, C (2005). A structured review of the role of gluteus
     maximus in rehabilitation. New Zealand Journal of Physiotherapy, 33(3) 95-100.

December 2, 2015

Progress 11 Years After My Stroke

I started PT after injuring my back when I fell on my patio in October.  This is my first experience with precision PT.  Instead of having me do generic exercises like walk on the treadmill, my PT Tony evaluated the individual muscles of my back and hemiplegic (paralyzed) leg.  Here are two of the many things I learned 11 years post stroke.

#1.  Back spasms are a risk for me because abdominal muscles on my hemiplegic side are still very weak.  Stomach crunches I have been doing (photo) let me use many muscles to assist my stomach muscles. Tony had me slowly lift my bent leg while lying on my back and then lower my leg without touching my foot to the mat. I felt increased muscle tone in my abdominals for hours. Guess what I am doing every morning before I get out of bed. 
#2.  Tony taught me that I developed the bad habit of locking my hemiplegic knee so my leg muscles do not have to work.  Now I stand with both knees slightly bent during 4 activities of daily living (ADLs) - brushing my teeth, putting curlers in my hair, putting on make-up, and standing in line at the store.  Standing in line with both knees slightly bent was the hardest to do consistently.  Putting both hands on the handle of the shopping cart is a cue that makes me compliant.  Retraining the brain requires lots of repetition.  This new habit is not automatic yet, but I have become aware of when I lock this knee so I can tell it to stop.  

November 15, 2015

Tying Shoes One-handed

I shuddered when my OT put brown shoelaces on my beige shoes.  I had forgotten elastic shoelaces only come in black, brown, and white.  I want to wear the color-coordinated laces I paid for.  I refuse to wear shoes with Velcro straps that a 10 year old would be embarrassed to wear to school.  I was horrified when my PT suggested I wear jogging shoes.  It would upset me to give a professional presentation or go to a wedding with shoes that an able-bodied adult would not wear.

I pull the free end of the lace shown in photo #1 across the shoe and slip my index finger under the top horizontal lace (photo #2).  My index finger is pointing towards my body.  I use the tip of my index finger to drag the lace under the horizontal lace to make a loop.

Photo #3 shows I used my thumb to push the lace through the 1st loop to create a 2nd loop.  You cannot see the 1st loop because my thumb is in it.  I take my thumb out of the 1st loop and yank the 2nd loop side to side to tighten the half slipknot.

With time the shoe lace stretches so I tuck in the free end of the lace so I will not trip over it.

Dutton, R. (2013)  My Last Degree: A Therapist Goes Home After a Stroke, 2nd ed., pp. 90-95.  Bangor, Maine: Booklocker.

November 2, 2015

Volunteers Save My Christmas

You may think I am crazy to decorate a Christmas tree after a stroke.  My siblings and I never fought when we decorated the tree.  As I relive those memories I become peaceful.  My mother is no longer here to play Christmas carols on the piano so I play Christmas CDs.  The tree also makes me feel peaceful every night for two months.  I sit on the couch, turn off the light on the end table, and become mesmerized by the lights on the tree. 

A friend puts this tree together.  I cannot ask John to put up a real tree because that would violate the "even my husband would groan" rule.  Transporting a real tree, trimming the trunk so it fits in the tree stand, and using trial and error to get the tree perfectly vertical is a lot of work.  I live alone so I cannot get down on the floor to water a real tree anyway.  It takes John 10 minutes to get the tree out of my shed and snap the four pieces together.  I do not get that great pine smell, but I do not have to vacuum up the needles a tree drops as you drag it out of the house.

Caution: Leaning over to hang decorations is a fall hazard.
The photo above has no furniture.  I slide an upholstered chair out of my way with Moving Men (see arrow pointing at orange disc).  My friend Peggy put them under the chair.  I leave them there all year long instead of putting them away after Christmas.  A TV stand on the other side of the tree has rollers so it slides out of my way.  This gives me room to stand up straight to decorate the top half of the tree and sit on a chair to decorate the bottom half.  When I am done I slide the furniture back in place.

October 31, 2015

Electrical Stimulation with NeuroMove

My hand was completely flaccid for three month after my stroke.  I did not get motion back until I started using an electrical stimulation device called NeuroMove.  Electrical stimulation strengthens muscles, but NeuroMove also has a biofeedback component.  I was able to watch a line on a monitor creep higher and higher as I thought about moving my hand.  That immediate feedback kept me focused and working hard even when I did not see movement.  When my muscle activity finally got above the threshold line, I got a few seconds of stimulation and was rewarded with a visible hand motion.  However, NeuroMove would not help me until I made a sincere attempt to recruit the muscles that open my hand.  Equally important, NeuroMove would not repeat the stimulation until I completely relaxed the muscles I just used.  Muscle re-education after a stroke includes learning to recruit AND relax muscles.

I tried other electrical stimulation devices that do not have a biofeedback component.  They stimulated my muscles at pre-set intervals or when I pushed a button.  I could not coordinate my efforts with those devices.  In the beginning it took me 20 seconds to figure out how to recruit a muscle and another 20 seconds to make that muscle relax.  NeuroMove patiently waited for me.  The other machines zapped me whether I was ready or not.  It was like trying to dance with a really bad partner who kept jerking me around the dance floor.  I finally gave up trying and daydreamed while devices without a biofeedback component worked my muscles. 

I could feel my hand when other people moved it, but did not have a clue about where the muscles were that I wanted to control.  Neuroplasticity allows stroke survivors to grow new connections in the brain, but that does not mean we can find them. The biofeedback component of NeuroMove helped me find connections I did not know I had.  NeuroMove stimulated muscles AND helped me retrain my brain.

October 27, 2015

The Garden Hose Won and My Back Lost

As the oldest daughter, I learned to pretend to be calm when bad things happened to my younger siblings, like my sister falling off her bike and shoving her two front teeth into her gums.  So I was surprised to hear myself crying hysterically while I talked to a 911 operator.  I had to crawl to the phone because my back muscles were spasming so badly I could not stand up.  Two days earlier I had fallen on my patio while wrestling with a garden hose.  I did not stand up straight after I connected the hose.  I think I tripped over the hose as I took a big step to regain my balance.  The black rectangle shows the small space I had to maneuver in.  When I am inside I prevent falls by clearing the space I have to work in.  Now I will transfer that strategy to outside.  A friend put that stiff garden hose on the curb for garbage collection.  I will buy a more flexible hose in the spring.

Five years ago a bone scan showed my lumber spine have osteoporosis I am glad the CT scan the ER doctor ordered did not find any fractures.  However, intense back spasms made it impossible for me to walk.  Fortunately, 36 hours of taking a muscle relaxant while in the hospital made it possible for me to return home with home health services.  Once I got home and wanted to do more than sit up in bed I noticed the muscle relaxant made me really tired.  When I stopped taking the medication my back got much stiffer.

My back is especially stiff in the morning.  I have to lie on a heating pad, do gentle leg lifts under the covers, and take an extra strength Tylenol so I can do more than hobble around the house.  After I sit for 30 minutes I have to lie down and do gentle back stretches.  My home health PT finally had me walk outdoors.  After walking about 6 car lengths, the hip muscles that I fell on started to burn.  The only thing that relieved this burning was taking the small steps I use when I walk on grass.  What a bummer.  Thank goodness I start out-patient PT soon.

October 17, 2015

Snow Strategies Are Here

It is October and I cannot believe I already have to use my first snow strategy.  I am paying for the frostbite I endured when I was growing up because girls were not allowed to wear pants to high school.  Imagine walking a mile in below freezing weather with bare knees because you are wearing a skirt and knee high socks.  I arrived at school with hard, white blotches of frostbite every cold winter day.  I think the repeated frostbite killed the oil glands in my skin.  The skin on my legs is extremely dry so I have to apply skin cream after every shower even though it is still 20 degrees above freezing.  

After I put on my underwear and top I use my teeth to pull a disposable glove on my sound hand so I will not get skin cream in my hair and make-up.  I sit on the closed seat of my toilet and pump a line of skin cream on one thigh.  With my sound index finger I pick up skin cream and spread it on my calves and the front of both thighs.  I wish I could tell you how good this feels.  I let the skin cream soak in while I fix my hair and put on make-up.  No scratching dry skin through my pants.  The skin cream has the same subtle scent as my shower gel so there are no
                                                     competing odors.  Happy.  Happy.  Happy.

September 30, 2015

Bathing When I Travel

Caution.  This folding stool may not be safe if you are heavy or need physical assistance to stand up and sit down. 

Thank God I found a folding shower stool I can bring when I visit people who do not have a handicapped bathroom.  Thank God a luggage saleswoman suggested I transport the stool in a nylon garment bag because the stool is too wide for anything but the widest suitcase.  I bought this stool at a local medical supply house instead of buying it on-line.  I wanted to (a) see if I could open it myself and (b) feel how sturdy it felt when I sat on it.  After I'm done showering I drape a bath towel over the closed toilet lid, place the folded stool on the towel, and use the ends of the towel to wipe off the water.  I drape the towel over the folded stool and find a place in the bathroom to keep it out of people's way. 

Is a shower stool compensation for my bad balance?  Yes.  Does this make me sad?  No. 
This adaptive device has allowed me to travel to see family and friends, present at conferences,
go on vacation, and find shelter when the power goes out (e.g. hurricane Sandy).  

September 16, 2015

Walking in the Dark, Part 2

I went to a great concert with a friend.  The old auditorium was beautiful.  However, we had to walk four blocks to the car in the dark.  The street lighting was so poor in certain sections that I could barely see the sidewalk.  The darkness was intensified by the low light of a new moon.  Decreased light is a fall hazard for me because my stroke damaged the bridge to the cerebellum (pons) that controls balance.  I learned I stay vertical by using my vision when I toured a huge Christmas light display with my brother three years ago.  This experience gave me the foresight to prevent a fall by asking my friend if I could put my sound hand on her shoulder as we walked.  When I maintain physical contact with an object that is vertical I know I am vertical.

The four block walk to the car was a wake-up call.  I have let my walking endurance decline so my hemiplegic (paralyzed) leg tired quickly.  I started scuffing my toe because I did not lift my leg high enough.  My walking improved when I handed my cane to my friend.  My hemiplegic hand can usually hold onto my cane while I drag the rubber tip on the ground - but not tonight.

Bottom Line: Once again I learned that mobility in the community = motor control + problem solving.

September 4, 2015

Home Programs Are Like Dieting

Home programs for stroke survivors are like dieting.  Both are "shoulds" that make me feel guilty when I don't do them.  Even though I'm an OT being a good patient gets boring after a few weeks. Yet I'm doing home exercises 7 years after my stroke because each one is anchored to something I want.

Here is an exercise I've recently added to my home program that illustrates what I mean by anchored.  After I felt my OT massage a painful knot out of my shoulder I was determined to stop it from coming back.  The painful knot formed because I was using my shoulder to lift my arm instead of using my elbow to lift my hand.   My OT taught me how to keep my shoulder relaxed. 

I start with my arms down at my sides and raise both hands to the middle of my chest using only my elbows.  Now I'm putting less stress on my shoulder muscles when I lift my hand.  Avoiding pain is a powerful anchor.  I do this exercise three times before I take my pills with yogurt each day.  I set out the yogurt, spoon, and pills before I start.  I'm afraid I'll lose the sensation of what normal movement feels like if I stop to gather supplies.  An anchor that feels personal turns "I should" into "I want to."

August 31, 2015

Exhaustion is Not an Illusion

                                            This post is for caregivers as well as stroke survivors
People who have not experienced a catastrophe think they have lots of time to do what they want.  They also think they will always have lots of energy.  A stroke destroyed the illusion that I have time and energy to waste.  I cannot waste precious energy searching my entire house for an object.  For me, organization is a way to save time and energy rather than a perfectionist's goal that drives me crazy.   

Here are some examples of when I can get away with being disorganized.  I do not mind spending a few minutes searching through a box of Christmas decorations or looking for a hand tool in a small tool box.  I keep certain foods in the door of the refrigerator, but I do not mind if they slide around to different positions.  I have very few music CDs so I keep them in two shoe boxes - one for classical and one for everything else.  I do not buy much canned food so it would not be worth it to turn all the cans so every label faces the same direction. 

However, it is good to be super-organized when I own hundreds of things.  I am meticulous about saving computer files in separate folders like Finances and Photos so it is easy to retrieve a specific file.  I used to own at least a hundred fiction books.  To find books in my library, I alphabetized books by author.  To stop buying extra copies of a book when I went shopping,
I carried a folded sheet of book titles organized by author in my purse.  When I froze lots of vegetables and meat in an upright freezer, my food was meticulously organized so I did not
have to move lots of packages to find the one I wanted. 

Bottom Line: For me organization is a choice rather than a compulsion that makes me feel guilty.

August 25, 2015

Trapping Objects Stops Me from Growling at People

My frustration began in the hospital.  I did not ask an aide to hand me a wad of toilet paper because I did not want her there to watch me wipe myself.  Unfortunately, when my sound hand tore paper off the roll the paper kept unrolling.  If you have ever had a kitten or toddler who thinks it fun to unroll toilet paper until there is a pool of paper on the floor you know how aggravated I felt. My aggravation turned to RAGE when I saw piles of toilet paper on the floor several times a day for
3 months.  I was thrilled when my hemiplegic (paralyzed) arm got strong enough so my fist could press down on my thigh to trap a wad of toilet paper.  Finally, the roll stayed still as my sound hand tore the paper.

Trapping makes me independent in 21 ADLs. Here are three more problems I solve by leaning on my fisted hemiplegic hand.   1) My fisted hand holds my checkbook open while my sound hand writes.  2) Trapping keeps credit card receipts flat when they curl up while I am signing them.  3) I open mail by trapping envelopes while standing at the kitchen table.  At first the letter opener pulled the envelope out from under my hemiplegic hand so I folded the non-slip placemat over the envelope (photo). The muscle that keeps my elbow straight (triceps) is stronger now so putting envelopes on top of the placemat creates enough friction to help me resist the force created by the letter opener. 

Being frustrated 30 times a day is exhausting for everyone.  Who would you rather live with - someone who is repeatedly frustrated or someone who feels smug all day?   I would not want to live with me if I had been grinding my teeth since my stroke in 2004.  Frustration gets progressively worse when I know I will have to bear it every day.  I  use any strategy that improves my mood and saves energy by lowering my frustration level.  Grrrrrr!

August 3, 2015

Handicapped Bathrooms Are Badly Designed

Handicapped bathrooms in hotels I have used since my stroke are poorly designed.  The most common error I have seen is placing the towel rack on a wall ten feet away from the tub across the extra large bathroom.  It may be dangerous for a companion to turn his or her back on a disabled person and walk away to retrieve a towel.  I solved this problem by dragging the luggage rack into the bathroom.  I placed my towel and bathrobe on the rack where I could reach them while sitting on my folding shower stool.  An inexpensive solution is to place hooks near the bathtub at wheelchair height.

I ran into 2 unique problems in one hotel handicapped bathroom. 1)  The shower curtain was so short and hung so far away from the tub that I could look down and see a four inch wide strip of the bathroom floor.  A wet floor is a Fall Hazard.  Before I got in the tub I did my best to soak up the water by putting a bath towel on the floor.  An inexpensive solution is to purchase longer shower curtains that can be tucked inside the bathtub.
2)  The removable shower head hanging down (photo on left) was almost impossible to use.  When I detached it to use in sitting, the shower head barely reached me because it was mounted so high on the wall.  I turned off the water while soaping up because letting the nozzle hang free made it to point outwards (photo on right).  I was not able to keep all the spray inside the tub.  A wet floor is a Fall Hazard.

The extra long shower hose did not compensate for the high wall mount the plumber used.  I do not see an easy fix for this problem. 

July 31, 2015

Canes Do More Than Help You Walk

1) Socializing. You know how people start talking to a dog and then realize they should talk to the human holding the leash?  Strangers also talk to stroke survivors who have pretty canes.  I have stopped counting the number of times strangers have said to me "That's a pretty cane."  This gives me a chance to smile and say "Thank you, I like it too."  Little girls cannot keep their eyes off my cane with purple flowers as I walk past.  Their too young to realize it is an ambulatory device instead of a toy or a fashion accessory.

2) Transporting. It is hard to transport small objects when my sound hand is busy handling the cane.  At first I put objects in a small paper gift bag.  I held my cane and the bag's string handles in my sound hand.  The bag would swing and repeatedly hit my cane so I did not feel safe when I was walking.  Paper gift bags also fall apart with repeated use.
I found an attractive small nylon bag at Barnes and Nobles bookstore.  To keep it from swinging I attached self-stick Velcro to my cane and the bag (see the white line in the photo).  The Velcro on the bag eventually comes lose so I use a stapler to attach it more firmly.

July 26, 2015

Smart Phones and Stroke, Part 2

Problem. I used a flip phone for years so I could call AAA if my car broke down, but a trip last year to see my brother showed me I need a smart phone.  When I got to my destination the temperature gauge showed my engine was very hot.  I knew the area so I drove to the local Toyota dealer which was closed because it was Sunday.  If I had a smart phone I would have learned that a taxi service was only two miles away.  I could have left my car at the dealer, had a taxi take me back to my hotel, and waited for my brother to arrive the next day.  My brother talked about loaner cars, but they do not have the modification that lets me control the gas pedal with my good left foot. 
I decided to buy a smart phone before I took my next long trip.

Training.  It is a good thing I bought an iPhone several months in advance.  This gave me time to attend free training sessions held by Verizon.  For example, there are multiple ways to delete items in Contacts, Messages, Calendar, Notes, and Photos.  To delete you touch a picture of a trash can at the bottom left or bottom right OR touch the word delete at the bottom right, bottom center,
top right, or right side of the screen.  To make the word delete appear, you may have to touch the word edit, pull an entry to the left, or scroll to the bottom of a file.  The chaos during staff meetings at Apple must be remarkable.  I also needed several months to learn how to use Google and Google maps because using them on an iPhone is different from using them on a computer.  I finally felt comfortable using Google Maps so I was thinking of leaving my Garmin GPS at home until I could not get cell phone reception in a small town near my home.

Outcome.  Going - IF I had used the Weather Channel app while I ate lunch on my 1st day of travel I would have seen an alert that said the rain storm had flash flood warnings.  Instead I got into my car.  The storm delivered such heavy rain that I could not see the car in front of me.  I could have waited out the storm in a McDonald's instead of on the side of the road.  Visiting - My brother and I texted repeatedly so we could meet at his boat and go out to dinner.  Texting with the Siri voice command on a iPhone is easier than texting one-handed on a flip phone.  Coming home - When a severe storm slammed onto my hotel, I used Google maps to change my route home, Google to locate new hotels, and the phone function to cancel old and make new hotel reservations.

Bottom Line.  A smart phone is an essential adaptive device for stroke survivors who travel.

July 16, 2015

A Brace Man Gives Me Confidence

When a stroke survivor said "I'm vertical for one more day" I remembered how hard it was to steer a wheelchair with one hand and one foot on linoleum.  I'm grateful that I'm not pushing a wheelchair across carpeting at home.  I'm also grateful that no one has to put a wheelchair in the trunk of their car when I go out.  My grandmother didn't know how to drive so she spent a lot of time at home, but American women my age grew up owning their own car.  I get depressed if I spend several days inside.  When my five year old leg brace needed to be replaced I was glad I have easy access to an orthotist.

I had to make several visits to have my brace adjusted so it's fortunate that I live only 20 miles from Wayne's office.  My brace has to reduce the stress on my joints as much possible when I walk.  I'm terrified of hip and knee replacement surgery if I abuse my hemiplegic leg.  I'd have to go off my blood thinner for surgery and could wake up with the worst type of stroke called locked-in syndrome.  People who have a brain stem stroke as I did can be totally paralyzed including being unable to blink or move their head as well as having all four limbs paralyzed.

When I heard myself telling Wayne that a lot of my confidence in the community comes from my brace I realized why I was uncharacteristically sad when I saw him.  The brace fitting process stirred up the fears I felt when I first stood on a leg I couldn't trust to hold me up.  Those terrifying memories are still there even though I haven't thought about them for years.  I've had enough bad falls to be glad my brace keeps my ankle from collapsing when I put weight on my hemiplegic foot.  Seeing an orthotist again helped me remember how lucky I am to have good health care.

July 2, 2015

Driving is More Than Stepping on the Gas

My motto is "I'm independent but I'm slow."  However, I'll bet anyone $100 that I can cover the front windshield of my car with auto shades faster than an able-bodied person.  An able-bodied person would lose because they use accordion style (folded) auto shades where one end falls out of position as soon as you reach for the other end.  I use the kind that look like a big pair of sunglasses.
The spinner knob on my steering wheel lets me drive one-handed, but it gets super hot so auto shades keep my sound hand from getting burned.  The wire rim on these auto shades lets able-bodied people twist them into a circle when they don't need them.  It takes two hands to close them into a circle so I leave them open and toss them between the passenger seat and the door.  

Warning: I make sure the auto shades are pushed back far enough so they don't obscure my side view mirror (see arrow in photo on left).  When I have passengers I tell them to thrown my auto shades in the back seat.  It takes me 8 seconds to put my auto shades up and 4 seconds to take them down and stow them (I timed it).  Sadly I'll never win any money because I feel and look so confident that no one would take my bet.  

June 30, 2015

Handicapped Parking Lowers Your Taxes

Employers gave my family time off when I first had my stroke, but they did not do this indefinitely.  Yet daytime visits to the doctor, therapy, and dentist that require waiting never end.  There are trips that cannot be put off, like going to the bank, grocery store, and pharmacy. There are trips that take extra time like trying on new clothes.  Driving stroke survivors everywhere makes it difficult for family to help us stay in our homes.  Providing transportation is a source of stress that wears a family down.  This puts a disabled person one step closer to a long-term care facility.

Long-term care costs $70,000 to $100,000 a year* so families spend their savings quickly.  Guess what happens when I exhaust all my financial assets?  I qualify for Medicaid and your taxes pay for my long-term care.  If I were 90 I would not feel so guilty because how much longer could I live?  But I am 70 so taxpayers could pay for my long-term care for decades.  Being trained by an OT who is certified in handicapped driving, passing the on-the-road test, modifying my car, and driving safely for twelve years has helped me save thousands of dollars by staying in my home.

Handicapped parking is more than being close to the door.  A wider parking space is also important.  It is difficult to open a car door without hitting the car next to you in a regular parking space.  Able-bodied people solve this problem by leaving the cart at the back of their vehicle and walking the bags to the open car door.  This is a fall hazard for me because I have poor balance.  The wide space lets me pull the cart up to my open car door to unload my bags. 

A wide parking space is important for another reason.  If I open my car door only two feet when I get in and out of the car, it is hard to maneuver a heavy leg brace that will not let me point my toes.  A wide parking space is especially important for someone in a wheelchair.  They need the car door to open widely so they can get in and out of the wheelchair that is sitting next to the car.   A van with a side lift that lowers a wheelchair to the ground needs even more space.

Bottom Line: You want disabled people to drive and use handicapped parking because it helps us stay out of expensive long-term care facilities.  The next time you borrow granny's handicapped parking tag remember -- you are making your taxes go up. 

*To see what long-term care costs in your state click on this survey.  Notice the column that shows how much inflation increased costs in a five year period.  

June 29, 2015

More About Cheap Equipment

Having a stroke often means losing income.  In addition, there are expenses that are not covered by health insurance.  So this post is not about cutting up a banana.  It is about saving money.
The last place I look for equipment is medical catalogues where things are always expensive.
I begin by looking for helpful objects in my home and in local stores like Bed Bath and Beyond.
To see previous examples of truly cheap equipment click here and click here.  In this post I talk about two pieces of cheap equipment I use to slice bananas for my cereal. 

#1 is a one dollar non-slip placemat I found at my grocery store that keeps the plate still as I slice.  It is far cheaper than Dycem.
#2 is the cheapest, thinnest paper plate I could find.  Since bananas are curved, I turn the plate so my knife is always perpendicular to the section of the banana I am slicing.  Because slices of banana roll around I turn the plate so my knife is always perpendicular to each slice as I cut it in half.

The thin paper plate bends easily so I can pour the sliced banana into my bowl.

Do you have a cheap solution you would like to share?

June 16, 2015

A Stroke Turned Me into a Lizard

I used to be a warm-blooded mammal who could regulate her body temperature - sweating when hot and generating body heat when cold.  A stroke turned me into a cold-blooded lizard whose body temperature is controlled by my environment.  There are many centers that control body temperature so I will never know what is out of whack.

In late May and early June temperatures fluctuated between 40 degrees (F) at night to 80 degrees during the day.  This is not normal spring weather for New Jersey.  If I forgot to switch from air conditioning (AC) to heat at bed time I would wake up shivering.  I was covered by an extra blanket, but the cold air around my head was enough to lower my body temperature.  When I got up to turn on the heat, my house was 62 degrees.  My Scottish ancestors lived 700 miles from the Artic Circle so I used to have a body that was genetically engineered for cold weather.  When it got to 80 degrees my body overreacted.  Sweat started pouring from my temple on the hemiplegic (paralyzed) side of my face, but not on the sound side.  I wiped off the sweat repeatedly so people would not see sweat streaming down my face.  My hemiplegic foot became red and hot.
It is scary to know my body could not cope with these drastic 24 hour fluctuations.

Bottom Line: Poor temperature control is another invisible deficit I have to manage.

June 5, 2015

Cheap Equipment That Prevents Cooking Spills

Stroke survivors can prevent messes when they cook by using objects that are lying around the house instead of buying  "adaptive devices" from an expensive medical catalogue.  For example, my hemiplegic hand can't reach up and hold the handle to keep the pot still when I stir food or flip it with a spatula.  You can buy expensive devices that hold a pot still on the stove OR you can use friction.  I slide pots off the burner onto a heat-resistant fabric hot pad before I stir or flip food.  In seven years I've never had a pot move.

An even more delicious way to keep money in my pocket is to use the plastic lid from a peanut butter jar.  This lid catches spills I make when measuring spices or messy food like olive oil.  I don't have to stop cooking to clean up a mess I've just made on my counter top.  Using spices is a matter of life-and-death because I'm on a low salt diet to help control my high blood pressure.  Low salt food tastes awful without lots of spices.  I'm glad I found a cheap way to prevent another stroke.

May 31, 2015

Getting to See My Family

I am going on a ten day trip to see my brother Mark.  We have not seen each other for two years because the horrific snow storms last winter made it too difficult to travel at Christmas.  He is looking forward to showing me his new boat and doing fun things together in Michigan.  We keep in touch via telephone, but I am looking forward to seeing him in person and giving him a big hug. 

My brother was four years old when I left home for college.  My memories of him were about helping take care of him.  We did not really get to know each other until we were both adults.  I was surprised to learn that our personalities are amazingly alike and we like many of the same things.
I have seen families drift apart after both parents die so I do not take his friendship for granted.  

I will be traveling with a GPS device.  Since my stroke I cannot hold a map or written directions while driving because I cannot let go of the spinner knob on the steering wheel (see arrow) that lets me steer one-handed.  I am glad my GPS device gives specific directions, like "turn right at Exit 29B to Monroe."  It is reassuring to see a sign that says "Monroe Exit 29B" a few seconds later 

May 26, 2015

Smart Phones and Stroke, Part 1

Part 1 is about how a stroke limits what I can do with a smart phone and how I feel about it. 

I do not have to worry about falling while staring at my smart phone as I walk.  My one good hand is busy controlling the cane I walk with due to my poor balance.

My sitting balance is not as good this guy on the boat.  I do not have to worry about missing a whale because I cannot stop staring at my smart phone. 

I use my one good hand to hold the spinner knob that controls the steering wheel.  Letting go of the spinner knob to use my phone would be a new definition of hands-free driving.

I can use my smart phone to ignore people.  However, after my stroke visiting with others is such a treat that I have never done it.  Years ago I read a science fiction book about a time when people interacted only as 3-D holograms.  Anyone who craved face-to-face human contact was considered mentally ill.    I remember thinking I would be dead before technology made this future happen.  Then I saw eight twenty-somethings playing with their smart phones after they finished eating in a restaurant.  The zone of silence was eerie. 

I am still learning how to take photos with my smart phone.  The touch screen is so sensitive that the phone takes seven copies of the same picture before I can take my thumb off the button.  My four other fingers struggle to cradle the phone.  I am learning to put less pressure on the screen and remove my thumb more quickly, but I still love my camera that is perfect for a stroke survivor.

May 17, 2015

Walking in a Barren Environment

All my PTs work in a barren environment that does not make them aware of the cognitive demands I have to deal with while walking.  In-patient and out-patient PTs walked me in gyms that have 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.  This gave me the luxury of concentrating fiercely on my hemiplegic leg.  Home health PTs walked me around the block in the middle of the day when nobody was outside.  Walking in wide empty spaces did not prepare me for tasks that require me to think while I am walking.

My fantasy is that home health PTs will meet clients in the community in the middle of the day.
At a restaurant they will help stroke survivors walk sideways between tables and go down stairs that have a railing only on the hemiplegic 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.  At church - get into a pew and turn around to sit on the toilet regardless of which side the grab bar is on.  A PT cannot be with me every time I try a new activity.  However, PTs can make clients safer by helping us understand that walking requires problem solving as well as physical mobility.  After you rehearse dealing with barriers in the community go home to rest and plan a real outing.

Football coaches do not stop after they 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 strategy as they move so coaches have them play football with their teammates.  Athletes and musicians also have rehearsals to make the transition from exercise to function.  Why are stroke survivors not getting the same kind of help?

May 5, 2015

Resting Splints Revisited

When I joined the staff of a nursing home as their first OT I opened a stroke survivor's hand after her fingernails grew into her palm because the nursing staff did not know how to inhibit her high muscle tone.  I remember that visual image when I read that stroke survivors get no benefit from wearing resting splints.  This conclusion is based on studies that looked only at hard plastic splints which are static (does not move).  After my spasticity broke two hard plastic splints, I bought a dynamic (moves) resting splint called SaeboStretch.  It bends when my muscle tone increases and goes back to its original shape when my muscles relax. 

Andringa studied a dynamic resting hand splint made by Ultraflex in Pottstown, Pennsylvania (1).  Six stroke survivors wore the dynamic Ultraflex splint for six hours during the day for six months.  Subjects reported significantly less pain at 3 and 6 months (p< 0.05).  Passive wrist extension
did not increase significantly at 3 months but was significantly greater at 6 months (p< 0.05). Subjects wore the Ultraflex splint during the day so forced disuse may have slowed recovery.  

One of Andringa's subjects illustrated the ultimate challenge of hand splinting.  He stopped wearing the splint after 4 months because it did not meet his expectations of what he thought the splint would do (1).  When clients are not told what they can expect when they wear a hand splint they are free to imagine the outcome.  Read the rationales for splinting in Are Resting Splints a Waste of Money?

 1. Andringa A, Ingrid G, Van de Port, Meijer J. Tolerance and effectiveness of a new dynamic
    hand-wrist orthosis in chronic stroke patients. NeuroRehabilitation. 2013;33(2):225-231.

April 30, 2015

Asking For Help Can Be Difficult

It was hard to ask for help after I had a stroke.  I was an OT who helped others and a divorcee who knew how to take care of herself.  When an independent person suddenly feels helpless it is easy to fall into a pattern of complaining or criticizing.  I knew my reaction to feeling helpless would influence how others would treat me.  It is easier for me to be gracious about accepting help when I know I have done everything I can for myself.

I learned a kind way to respond to people who are uncomfortable watching me work so hard.  When I was in rehab I overheard another patient say "I think I can do it myself, but thank you for offering."  I use this gracious way of responding to kind-hearted people who take a risk of being rebuffed when they offer to help.  Sometimes this polite refusal is not enough so I invoke the
my-spouse-would-groan rule.  I cannot ask someone to do something for me that would have made my husband groan.  John puts the four pieces of my artificial Christmas tree together, but I cannot ask him to do all the prep that goes with putting up a real tree (shaping the trunk to fit the stand, etc.).  I ask Peggy to tighten the knobs on my kitchen cabinets that keep getting loose, but I cannot ask her to scrub my kitchen floor. 

Volunteers do simple tasks that keep me in my home.  I can hire people to clean my house.
I cannot get a home health agency to send an aide to change the batteries in my smoke alarms when they start chirping.  If I live long enough, living alone at home will wear me down.  I foresee the day when I will be glad to pay other people to take care of me.  When I am 94 years old I will not be so cautious about asking for help.  If my requests for help exhausted people they might think "how much longer can she live?"   But I am 69 so I have to be careful about wearing out my support system.

April 26, 2015

A Physiatrist Has My Back

When I was an OT I did not realize stroke survivors deal with challenges for years after treatment ends.  Eleven years after my stroke I am grateful I still have access to a physiatrist (doctor who specializes in rehabilitation medicine).  (1) Dr. Terry, a physiatrist, has a deep understanding of my situation.  He listened attentively when I expressed concern about the increasing tightness in my hemiplegic (paralyzed) hand.  Instead of ignoring my concern he talked about when muscle tightness helps or interferes with function.  I did not have to explain why I wanted to go back to OT.  A physiatrist is one of the reasons I do not go downhill when a new challenge appears.

Here are four more reasons to see a physiatrist.  (2)  Regular in-patient meetings mean the staff have to think clearly about my case in order to present it to the physiatrist and to each other.
(3)  Physiatrists know how hard clients work to become independent.  Dr. Terry is one of the few doctors who does not try to undress me like I am a child.  After he asked to see my hemiplegic foot he hesitated for a moment.  This gave me a chance to take off my leg brace.  (4)  He asks about my personal life because he sees me as more than a paralyzed arm and leg.  (5) He knows the buzz words insurance company adjustors are looking for.  He has never given my insurance company an excuse to deny coverage for services he has ordered. 

Kinoshita compared outcomes for stroke survivors whose care was coordinated by a physiatrist versus other types of physicians (1).  The study found that stroke survivors whose care was coordinated by a physiatrist had significantly more frequent regular conferencing (see #2 above), had significantly higher scores on the Functional Independence Measure (p< .005), and were more likely to be discharged to their home (p< .005).  This is a huge advantage.

1. Kinoshita S, Kakuda W, Momosaki R, Yamada N, Sugawara H, Watanabe S, Abo M. Clinical
    management provided by board-certified physiatrists in early rehabilitation is a significant
    determinant of functional improvement in acute stroke patients.  Journal of Stroke &
    Cerebrovascular Diseases. 2015;24(5):1019-1024.

April 14, 2015

Chedoke Arm and Hand Activity Inventory

The Chedoke is a bimanual hand test that captures additional data because it lets clients decide if they want their affected hand to hold the jar or turn the lid (1).  Yet OTs who used the Chedoke wondered why they needed another ADL test (2).  One OT said "So am I really that worried about exactly how much effort the other one [hand] is putting in [to complete the task]?"  To be fair, insurance companies want therapists to document improved independence regardless of whether it comes from recovery or compensation.  Yet ignoring whether the affected hand does any work during a task defeats the purpose of working on recovery.  Clients deserve a test that gives us credit for transferring what we gained from exercise.

Unfortunately, OTs who gave the Chedoke to stroke survivors concluded it has too many high level tasks for clients with severe motor impairments (2, 3). The Chedoke includes high level tasks that have been a part of hand evaluations for years such as buttoning, zipping, and cutting with a knife and fork.  This is disappointing because many advances target clients who do not regain function with traditional treatment.  How can researchers test the efficacy of new treatments if they use tests with poor basements that do not test when hand movement emerges?

After a stroke I discovered easier bimanual ADL tasks that show hand movements can be functional much earlier than clients think is possible.  Level 3 on the Test of Bilateral Hand Use (TEBHU) is being able to reach out and hold an object still as the other hand manipulates the object (4).  Able-bodied adults do this dozens of time a day but take this skill for granted which is why it never appears on hand evaluations.  Levels 1 & 2 on the TEBHU evaluate hand simple movements able-bodied adults never use.  For example, the sound hand places a deodorant bottle in the affected hand which then places the bottle on the thigh and holds it still so the sound hand can remove the cap.  Hand-to-hand transfers done close to the body are easier than opening the hand as clients struggle to lift a heavy arm to table top height.

Bottom-Line: See easy bimanual tasks in the Hand Evaluation page at the top of my blog. 

April 3, 2015

Garbage Can Send You to a Nursing Home

I live alone so I cannot stay in my home if stinky garbage piles up on my patio.  People would call the health department.  After my stroke a neighbor took my garbage to the curb for a few months.  However, I do not want neighbors to think if they help me for a short while they have volunteered for life.  Paying a nursing home $8,000 a month is a really expensive way to get rid of garbage (Genworth Survey of Long-Term Care).  Here are adaptive devices that make me independent.

Garbage. I use Hefty Ultimate garbage bags.  They have an elastic drawstring built into the top of the bag which grips the top of the garbage can in my kitchen.  I place the full garbage bag on the seat of a kitchen chair so I do not have to lean down to tie a knot in the drawstring with my teeth and sound hand.  Once the bag is tightly sealed I drag it across the floor and kick it down my front steps without any spills.  I put the bag in a rolling garbage can to take the garbage to the curb.  I learned not to push the garbage can by tilting the can and rolling it on the wheels.  The first time I did this I almost fell when the garbage can got away from me.  By putting the wheels in front (see arrow) I can push it like a rolling walker.  CAUTION: I used to drag a cane in my hemiplegic hand so I could walk back to the house.  Now my balance is good enough to walk back without a cane.

Recycling. My town recycles glass, metal, and plastic containers.  The short yellow container I was given is too heavy and awkward for me to carry to the curb.  The photo shows the Devault Plant Dolly.  Six casters under the dolly make it roll smoothly.  To pull the dolly back to the house, I threaded a long strap through the central hole that is designed to let plants drain.

March 29, 2015

Memory Aids Have to Be in My Face

When I forgot to pick up a friend I felt guilty.  She blamed herself because she thought she had remembered the wrong date.  This painful experience taught me that memory aids have to be in my face.  I can repeatedly ignore reminders that are sitting in an out of the way place.  

1.  The current month sits on my kitchen table where I eat breakfast.  I use 1 colored tab to mark the next important an date and move it when the event is over.                                     2.  I fold the page for each month in half and put them in a napkin holder.  Pieces of paper are stuffed in their respective month.  The arrow is pointing to a month with a postcard from my dentist reminding me to make an appointment.  I got that postcard six weeks ago.  If I had put the postcard on my kitchen counter, who knows where it would be now.    
3.  I keep sticky Post-It notes and a pen every where I sit so I can write notes and stick them on my shirt.  If I leave the note on my shirt too long it falls off when I walk.  When that happens I stop what I am doing and do what is written on the note.

A word of caution about memory aids.  What helps one person remember does not make a bit of sense to another person.  The memory aids I use are only examples that may help you discover memory aids that work for you.  Negotiate with your family to find a prominent place you can put your memory aids.  It may require others to adjust to a few changes, but they will benefit from your improved memory.

March 26, 2015

Arthritis + Stroke = Modified Joint Protection

Five years ago an x-ray showed early signs of arthritis in my sound thumb.  I did not worry about it until this thumb started to ache.  I have overused my sound hand for 11 years and need it to last for another 20 years.  Below are examples of joint protection principles for the thumbs of stroke survivors.  I had to modify these principles which were written for two-handed people with arthritis.

1. Use Stronger Joints.  Pouring from a full milk container forces me to squeeze the sides of the container tightly so it will not slip out of my hand.  Squeezing tightly makes my thumb ache.  So I pour milk two-handed.  The arrow is pointing at my hemiplegic (paralyzed) hand.  The muscles of my hemiplegic shoulder, elbow, and wrist are doing the heavy lifting while my sound hand makes sure the spout is aimed correctly.  I appreciate not feeling pain every morning when I prepare cereal for breakfast.

2.  Minimize Force.  I cannot swallow pills with liquids so every day I open a container of yogurt.  Manufacturers put strong glue on the lid to maintain a tight seal.  Opening the lid makes my thumb ache because I have to grip the tab so tightly.  My hemiplegic thumb cannot help my sound thumb on this task.  I reduce the force I exert by wearing a rubber finger cot
used for counting money.  Greater traction means my thumb can pinch less forcefully.
I cannot avoid using my sound thumb to open the top of a sock to get it on my foot. The photo on the left shows my thumb and index finger stretched far apart.  This makes my thumb ache.  Now I open the sock barely enough to get the sock over my toes.  Other fingers do the hard work of pulling the sock up the rest of the way.

3.  Avoid Static Positions.  Holding a book for a long time with my sound hand makes my thumb ache. So I place my Actto bookrest on a laptop desk covered with non-slip shelf liner.  An arrow in the photo points at a clear colored tab that adjusts the angle (i.e. more vertical or more horizontal).  With the bookrest sitting on my laptop desk I can reach behind and easily release and reclamp this tab with one hand.

The photo on the right has an arrow pointing at a clear colored plastic arm that holds the book open.  There is enough friction to fight the weight of the open book but I can easily reposition the plastic arms (e.g. far out for a big book and close in for a thin book).  I have loved to read all my life so I am glad an assistive device lets me enjoy this activity without pain.

March 15, 2015

Reviewing Adapted Knives

When I eat out I order soft food that can be cut with a fork, like fish and pasta.  At home I have rocker knives that let me press down on the food to hold it still while a rocking motion cuts the food.  The photo shows two rocker knives.  The long knife in the photo on the right is the most commonly used one.  However, the photo below shows that this rocker knife does not fit in my purse.
I use an across-the-body purse because straps slide off my shoulder. This was OK when I was able-bodied because I had a free hand to keep pushing the strap back up.  I found a small purse called the Terrace Shoulder Pouch at  Putting the purse in front of my body keeps it out of the way when I reach forward with my cane.  I have larger over-the-shoulder bags, but they stick out so far I look like a pregnant walrus.  A smaller knife is on the left in photo above.  I think it looks like an assassin's weapon so I use it at home to cut vegetables.   

I love the Verti-Grip Professional Knife from It is held vertically so my whole arm can press down as I rock the blade side-to-side.  The rocker knife shown above is held horizontally so I create downwards pressure only with my index finger. The VertiGrip's sharp blade cuts though steak and pork chops.  It is only six inches long so it fits completely inside my purse.  It has a protective cover that slides off easily so I put the VertiGrip in a small zip-lock bag to protect the inside of my purse.  The Verti-Grip costs $17.95 + S&H, but I think it is worth it.