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 5, 2015

Arm and Leg Synergies are Different and the Same

The hemiplegic (paralyzed) arm is dominated by the flexion synergy while the hemiplegic leg is dominated by the extension synergy. That means extensor muscles that straighten the knee and point the toes are strong while flexor muscles that bend the hip, knee, and ankle are weak.  Both synergies make it difficult to move a single joint.  When clients who are synergy bound want to move a limb we have to move all the joints in the limb whether we want to or not.  

Problem #1: 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 #2: Two trips to the emergency room after bad falls were enough for me.  My weak hip and knee do not lift my leg high enough to clear my toes as I take a step.  To make things worse my leg is mostly straight when I swing my leg to take a step because 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 prevents foot drop which prevents falls.  
Problem #3: The extension synergy makes my knee hyperextend (straighten) every time I take a step with my hemiplegic foot.  This abnormal movement can eventually damage my knee.  Unfortunately hamstring muscles on the back of my thigh (see pink line) are too weak to keep 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 it defers the need for knee surgery.

November 4, 2015

The Zipping Challenge is Not What You Think

Now that it is cold I need to zip my coat.  Velcro closures on my raincoat do not keep me warm.  When I sit, gaps form between the Velcro tabs which lets body heat escape.  I was surprised to learn the hardest part of zipping a coat is not grabbing the zipper tab.  The step that requires the most precise finger control is holding the bottom of the coat.  The 2nd photo below shows I am holding the bottom of the coat with three fingers in a 3-jaw chuck grasp.


Holding the bottom of a coat has to accomplish two things.  First, my bottom finger is keeping the joined tab and the zipper perfectly aligned.  ONLY IF you accomplish the 1st step do you get to proceed to the 2nd step which is holding the bottom of the coat still as the other hand pulls up the zipper tab.  Having a stroke does not stop zippers from being cantankerous.




Before zipping I use one remedial strategy.
To remember what I learned while doing finger exercises, I rehearse pinching my thumb and index finger together to wake up the muscles I need to zip.  I use 3 compensatory strategies.  (1) I don a rubber finger cot designed to sort money to get better traction.  (2)  My hemiplegic (paralyzed) thumb and finger grab a small piece of fabric that is attached to the zipper tab (see white rectangle above).  The fabric is less slippery than the metal tab.  (3) My hemiplegic hand can pull the zipper tab up only two inches.  Going higher requires wrist flexion which forces my hand to open.  After two inches I switch my hemiplegic hand to holding the bottom of the coat still while my sound hand finishes the zipping.  The 3rd photo shows you why I am not sad that I use a combination of remediating deficits and compensation.  I also hate being stared at when I stand next to a wall near a store exit so I will not get bumped by people as I zip my coat - another reason to speed things up with compensation + remediation.

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 27, 2015

The Flexion Synergy is Good and Bad

At first, an arm paralyzed by a stroke is limp (Brunnstrom Stage 1).  Stage 2 is exciting because stroke survivors see small limb movements.  In Stage 2 I could fling my hand onto my thigh, but my hand slid off because my arm muscles were too weak to hold it there.  Small movements turn into a synergy (Stage 3).  Synergy means muscles work together, but a stroke creates abnormal synergies that produce only one movement pattern.  This is bad because you cannot change where you place you hand.  The photo shows one version of the flexion synergy that affects the arm.  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.


An electrical stimulation device called NeuroMove that has a biofeedback component and a spring-loaded hand splint called SaeboFlex helped me modify Stage 3 to make it functional.  They helped me retrain my brain to open my hand a few inches so I could receive an object from my sound hand.  Hand-to-hand transfers let me hold an object close to my body so my sound hand can manipulate the object.  Hand-to-hand transfers made me independent in 18 Activities of Daily Living (ADLs).

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

I was stunned to learn my hand is useful without achieving Stage 5 (relative independence from synergy).  The Neurodevelopmental Treatment Approach (NDT) says the hand needs good shoulder control.  This is true if you want to swing a hammer without hitting your thumb.  Many ADLs do not require this kind of precision.  Why defer hand use when ADLs can make do with emerging arm and hand movements?  As an OT I knew that stroke survivors learn to walk using the extension synergy in the leg, but I was taught the flexion synergy in the arm was bad.  I had to have a stroke to see the flexion synergy in the arm in a more positive light. 

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 15, 2015

A Secret I Have Kept for 11 Years

There is a stroke issue I have never shared with doctors, family, or friends - urinary incontinence.
After I feel the urge to urinate, I have 5 minutes to get to a toilet before I begin to slowly leak urine no matter how hard I squeeze my muscles.  I did Kegel exercises that tighten the muscles of the pelvic floor, but they did not make the problem go away. So I managed this problem by memorizing the location of every bathroom in the places I visit in the community.  I do not shop or sit down for a performance until I know where the bathroom is.

Then I came across a blog post that takes a different approach to urinary incontinence - www.eastwestrehab.org/index.php/blog/entry/addendum_to_ot_practice_article/

The authors say "focusing on the [pelvic] floor does not take into account the floor's synergistic relationship with the adductor muscles."  This got my attention because I have weak hip adductor muscles
(see arrow in diagram).  The authors say "hip adductors attach to the pelvis ..... and strongly influence the urogenital muscles of the pelvic floor."  They suggest strengthening the adductor muscles by squeezing a ball between bent knees while lying on your back.

Bottom Line: I started doing the ball exercise and discovered 2 things.  The window I have to find a toilet has increased from 5 to 10 minutes. 
If I feel the urine start to flow I can stop it long enough to get to the toilet by picturing myself squeezing the ball between my knees.

I'm amazed by my ability to regain another skill 11 years after my stroke.

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.