Things I Take for Granted

It has been 3 months since I visited a life-long friend in New Mexico.  I am still aware of how lucky I am to live at sea level in an area that gets lots of rain.  After suffering at an elevation of 7,200 feet in the dry New Mexico climate (5-10% humidity) I am repeatedly grateful for water.  Here a two examples. It rained lightly off and on during my first visit to Point Pleasant Beach after I got home.  Instead of watching pretty white clouds roll out to sea and feeling a cool ocean breeze on my face, I was thankful for moisture the rain put into the air I was breathing.

The first time I went to church after I got home I marveled at the trees I get to look at through a wall of windows.  I doubt that anyone has wondered if a prolonged drought in New Jersey would kill this species of tree.  These trees give me joy whether they are full of leaves or their bare branches are covered with snow.  Trees require lots of water, which is why you do not see trees in New Mexico.

When a psychologist in the rehab hospital asked me what I enjoyed doing I was surprised to hear myself say I was devastated because I would never see the Atlantic Ocean again.  One good thing about having a stroke is that it put me in touch with things that give me joy.  Water and the things it makes possible, like trees and flowers, consistently make me happy.  This is a primal need I did not know I had.

Reviewing the Fitbit Pedometer

A pedometer tracks the number of steps people take each day.  Since walking is my only form of exercise, a pedometer tells me about my physical activity.  I bought a Fitbit pedometer but cannot use it.  It has a soft rubbery holding case I cannot manipulate one-handed.  No matter how hard I tried I could not get the pedometer in the case.  At first I thought I would have a friend do this for me, but the battery has to be charged every week.  This involves taking the pedometer out of the case, inserting one end in a cable until tiny prongs (arrow) make contact, and putting the other end of the cable in a USB port.

The confusing return instructions are example of why this company is not user friendly.  They sent the return authorization number in one e-mail and the return instructions in a 2nd e-mail.  The return address in the 1st e-mail was different from the address in the 2nd e-mail.  I am not the only one who finds the Fitbit on-line-only support difficult.  The Fitbit on-line community has 135 pages of "how do I....?" questions.

The Fitbit One is designed to be clipped onto a pocket which is great for men who always have pants with pockets.  It can also be clipped on the center of a bra which is great for joggers wearing sports bras.  I do not want a lump showing under my clothes.

I have gone back to using my Digi-Walker SW-200.  I use half of a clothespin to hold the clip open until I get the pedometer on the waistband of my pants.  However, Fitbit did inspire me to create an Excel file that graphs my daily totals.  Every night before I go to bed I get visual feedback about how many times this month I have reached or exceeded my target.

Electrical Stimulation with NeuroMove

My hemiplegic hand was completely flaccid for three month after my stroke.  I did not get any motion back until I started using an electrical stimulation device called NeuroMove.  All such devices strengthen muscles, but NeuroMove is unique because it has a biofeedback component.
I watched 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 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 muscle I just used.  Muscle re-education after a stroke includes learning to both 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 never lost awareness of what my hand was doing when other people moved it, but I did not have a clue about where the muscles were that I wanted to control.  Research on neuroplasticity shows stroke survivors can 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 my muscles AND helped me retrain my brain.

The World's Tiniest Hand Splints

Problem #1.  When I drive for 30 or more minutes my paralyzed hand gets tight from the constant vibration.    Solution #1: To keep my hand open I use foam tubing designed to slip over the handle of eating utensils.  It has a 5/8 inch opening that runs down the center of the tube.  The fit is not tight enough to keep my fingers absolutely straight, but the foam traps body heat which relaxes my muscles.  My hand starts out stiff as the photo shows and ends flat on my thigh by the time I arrive at my destination.  The foam also provides traction so my hand does not slip off my thigh. 

Problem #2.  Pushing a heavy shopping cart makes my thumb bend severely.    Solution #2.    I slip a piece of foam over my thumb.  The foam keeps my thumbnail from digging into the side of my index finger.

Problem #3.  I have to grip a peanut butter jar tightly which makes my index finger and thumb bend sharply (see black line). 
A severely bent thumb means I am strengthening a bully who is already too strong!  I eat a peanut butter sandwich every day because Smart Balance peanut butter has omega-3 oil which lowers my high triglycerides (a bad fat in the blood).

Solution #3: I keep my thumb and index finger straight by donning rubber finger cots used to count money.  The finger cots give me traction that keeps my fingers straight as my sound hand uses a knife to dig peanut butter out of the jar.  I keep the finger cots in a shot glass for measuring liquor.  The shot glass sits on the windowsill in my kitchen.

These tiny splints are cheap, always nearby, and improve function during meaningful ADLs.

Big Ballet

I love dance so I watched a mini-series called Big Ballet on the Ovation channel.  The show is about large women and men learning to perform the ballet Swan Lake.  My intuition told me watching overweight people struggle would help me with a dilemma in my stroke recovery.  Professional dancers who initially pooh-poohed this venture conceded the audience connected with the cast's performance.  The 1,500 people in the audience clapped enthusiastically. 

Who made this project possible?  Wayne Sleep choreographed the ballet.  He is a 5 foot 2 inch man who refused to leave professional ballet because he was too small.  Monica Loughman is a retired ballerina who trained the dancers.  Many of the cast had previous dance experience.  However, they had to work hard to gain strength, flexibility, and endurance, learn the steps in the ballet, and learn to express the emotions of characters in a classic story of love and betrayal. Watching a brave group of people triumph over fear of failure and rejection was thrilling because everyone has struggled with these emotions.

How does Big Ballet relate to my dilemma?  Occasionally I see people staring at me with a look of horror on their faces. They are imaging something that has nothing to do with me, but it is hard not to take their negative reaction personally.  I have thought of several nasty things to say but never followed through because this would intensify the negative feelings I have at that moment.  What I learned from watching large men and women dance is they can be graceful and feel proud of themselves.  The next time people stare I will try to remember the satisfaction I felt when I learned to push a garbage can to the curb.  If I turn the garbage can backwards so the wheels are in front, I can push it like a rolling walker.  This is not a small thing.  You cannot live alone in your home if garbage piles up.  I am not disabled.

Big Ballet reminded me that I also have prejudices.  I think the head of the Northern Ballet is an elitist  who believes the only thing this project accomplished was to besmirch the good name of ballet.  He was on screen for maybe two minutes so I know very little about him.  Yet every word that came out of his mouth was filtered through this judgment I made about him.  When people stare at me with horror, this ballet director will remind me I prejudge some people.  Picturing him will give me a chance to forgive myself which makes it is easier to forgive others.  This is a selfish strategy.  I do not want the time I have left to be high jacked by others peoples' disgust.

Wayne is right.  Everyone deserves to dance or have a personal connection with some form of art. 

I think art is powerful because it brings feelings to the surface, tells stories about the human condition, and creates community.  Technology has propelled human civilization forward ever since someone discovered how to make fire.  Yet art has stood the test of time because it addresses primal human needs.  

My 2nd Pet Peeve

To read about my first pet peeve click here.  My second pet peeve is long-handled reachers. 

Long-handled reachers are a pain because the long handle puts objects far from the hand, which makes objects extra heavy.  The long handle also means you have to pull your arm way back to deposit the object close to you.  When I purchased a new washer I was forced to use some type of reacher because the tub is so deep.  Standing on my tiptoes and leaning over while resting my hips on the edge of the washer does not allow me to reach the clothes far away from me (see white arrows).


I went shopping for a pair of long food tongs with Teflon coated tips designed for outdoor grilling.  The expensive pair was heavy.  The cheap pair made by Oneida is lighter, which makes it easier to pick up heavy damp clothes.  I keep the tongs in my laundry room so I will not be aggravated by searching for them in a kitchen drawer.  To keep the tongs from taking up so much room I lock them in the closed position by pulling on the metal circle with my hemiplegic hand.  You could also trap the tongs on top of the washer with your forearm while your sound hand pulls on the circle.  To open the tongs I push the circle back in.  One more aggravation gone from my life.  Cranky stroke survivors do not make good companions.  

My Blue Boat Home

I love to travel.  I have driven through 47 of the 50 states and lived in eight of them (Iowa, Illinois, Mississippi, Alabama, Louisiana, Massachusetts, Pennsylvania, and New Jersey).  Yet a recent trip to Sante Fe, New Mexico showed me a dry climate can suck every drop of water out of my body.  On the first day I saw wrinkles on my face that I had never seen before.  Two days later I developed a dry cough.  Two days and nights of dry coughing produced a thick fluid in my lungs and made my back muscles spasm.  Standing up and walking was misery.  Even though I drank several glasses of water a day I was so dehydrated that a layer of skin came away every time I ran a finger across my lips. 

I associate the pattern of dry cough - wet cough - back spasm with winter when sub-freezing temperatures make the air too cold to hold much water.  I did not know thin desert air (elevation 7,200 feet) that has 5 to 10% humidity can make me wish I were dead.

New Mexico is land of amazing panoramic views.  My photo does not do justice to the colors and grand scale.  To survive this beauty I had to buy a vaporizer to put warm moist air in my bedroom and take medicine for a cough and back pain.

Thank God I live on a planet that has tons of water.  However, now I know I need to check the humidity as well as temperature before I travel.  I took a deep breathe when I got back home and saw the Atlantic Ocean.

Except from a hymn called My Blue Boat Home

I've been sailing all my life now
Never harbor or port have I known
The wide universe is the ocean I travel
And the earth is my blue boat home.  

Adaptive Gardening Comes in Many Forms

Spring is here and I am dreaming about seeing colorful flowers as I walk up to the front door of my house.  To be honest, adapted gardening did not initially make me happy.  The first year I did it I was repeatedly frustrated because it is difficult to handle delicate plants with one hand.  The second year was enjoyable because I had made all the mistakes the year before.  I have gradually learned to look at my first attempt to do familiar activities as a rehearsal rather than a failure.    

I garden in a pot placed on a bench.  I have a big pot that will not dry out if I forget to water it every day.  I used to traumatize each plant I pulled out of the store's container one-handed until I learned to let the plants dry out a little before I transplanted them. The roots break loose from the container more easily if the soil is dry.  After I fill the pot with soil, I put a plastic ring I made from a used disposable cutting board on top of the dirt.  The ring gives me something to lean the 1st row of plants against.  It also lets me create an outer ring of dirt to keep the plants away from the pot so the heat from the sun will not burn them.  After the pot is planted I remove the plastic ring.   

Joanne Murphy is a stroke survivor who is more ambitious.  Here is a photo showing how she uses old milk crates to do raised gardening.  Read more by clicking on Joanne's inside garden.

Are Resting Hand Splints a Waste of Money?

Studies of resting hand splints make me cringe when researchers ask the wrong questions.  Studies done by Lannin (1) and Burge (2) asked if resting hand splints improve functional hand use.  A resting splint that places the hand in one static position does not retrain the brain.  So it is not surprising that Lannin (1) and Burge (2) found resting hand splints produced no significant improvement on hand function tests, like the Motor Assessment Scale.
                           
Lannin (1) also concluded "splinting has little or no effect on the loss of range of motion" (p. 113) because subjects who did and did not wear a resting splint lost some wrist range of motion (ROM).  Unfortunately, Lannin told therapists who were treating subjects with a resting night splint to stop all passive stretching and restrict active hand exercises to 10 minutes a day.  This is like telling people to stop taking aspirin to bring down their fever while they are taking an antibiotic.

I asked a different question.  What would happen if I continue to do passive stretching and active hand exercises, but stop wearing my resting splint at night?  After a month of not wearing my resting splint it felt like my thumb was getting tighter.  I resumed wearing my resting splint and the next morning I woke up with a ferocious ache in my thumb. 

A study by Burge confirmed my personal experience.  Eight of his subjects who did not wear a resting splint lost ROM while no one who wore a splint lost ROM (2).  However, this group difference did not achieve a probability value (P) of 0.10 or less.  Burge's  P value of 0.128 was
not statistically significant, but the difference between the two groups suggests Lannin's conclusion that splints do not affect ROM is premature.

When I was a young therapist, degrees of ROM were numbers I wrote in a client's chart.  As a client a loss of ROM is terrifying because spasticity that gets out of control hurts.  Botox shots hurt because a doctor uses the end of the needle to dig around in the muscle to find the best spot.  Only surgery can reverse contractures created by permanent shortening of a spastic muscle.
I do not want these bad things to happen to me.  While I wait for more studies on resting splints the potential consequences are too severe.  That is why I wear my night splint even when I travel.

1.  Lannin, N, Cusick, A, McCluskey, A, Herbert, R. Effects of splinting on wrist contracture after stroke. Stroke. 2009;38:111-116.
2.  Burge E, Kupper D, Finckh A, Ryerson, S, Schnider A, Leemann B. Neutral functional realignment orthosis prevents hand pain in patients acute stroke: A randomized trial. Archives of Physical Medicine and Rehabilitation. 2008;89(10):1857-1862.

Taming the Beast Called Frustration

Frustration never stops appearing after a stroke.  For example, it is REALLY TEDIOUS to peel a hard-boiled egg one-handed (Grrr!!). Once again my frustration propelled me to find a solution.  You do not have to grind your teeth while peeling Easter eggs.

Step #1: Place a cold hard-boiled egg in warm water to make the shell expand and pull away from the egg.











Step # 2: Dry the egg with a paper towel.  Place the egg on a paper plate to catch the bits of shell as you repeatedly smack the egg against the counter.









Step #3: Remove the egg shell which comes away in small sheets.  Rinse the peeled egg with water to get rid of the small bits of shell.  Dry the peeled egg with a paper towel.