My New Computer Needs Duct Tape

My new computer has only one 2.0 port because this type of port is being phased out.  But I have multiple devices with cords that need a 2.0 port to backup my iphone data, down load photos from my camera, and update my Garmin GPS.  Initially I had to pull the flash drive that backups 25 years of data out of the side of the computer when I used another device.  Pete, my computer technician, recommended a USB hub.  Yet using one hand to put devices in and pull them out made this light weight hub move.  Pete used duct tape to hold the USB hub still.  He experimented with different locations for the tape to ensure the hub stays still.  The tape blocks 2 of the ports, but 5 ports are still accessible (see 3 arrows)
- so much repeated frustration avoided.

Duct tape also holds my internet router still.  When my internet connection goes down the Verizon technician asks me to pull out the power plug (see arrow).  However, pulling the plug out with one hand made the surge protector lift off the table.  Pete experimented until he discovered that taping the cord to my desk would hold the surge protector still without blocking the cooling vent.


P.S. I have white duct tape that matches the color of my table which makes me happy.
I never thought about the color of adaptive devices when I was an OT.  As a stroke survivor I cringe every time I see red Dycem.

I Love My New SaeboStretch Splint

I love my new SaeboStretch resting splint I wear at night.  The new elastic straps do not cut into my skin the way the old plastic straps did.  This version uses a new kind of "Velcro" that does not have spiky hooks that scratch my bare thigh.  Yet this softer "Velcro" holds better.  Notice that there are now two finger straps and two thumb straps.  The cover zips off so it can be washed.  However, all OTs do not agree about the efficacy of resting night splints.
                         
Lannin (1) concluded "splinting has little or no effect on the loss of range of motion" (p. 113) because both subjects who did and subjects who did not wear a resting splint lost some wrist range of motion (ROM).  Unfortunately, Lannin told therapists to stop all passive stretching and restrict active hand exercises to 10 minutes a day.  So we do not know if a resting splint is a useful addition to standard therapy.

I wondered what would happen if I continued to do passive stretching and active hand exercises, but stopped wearing my resting splint at night.  After a month of not wearing this splint I could feel my thumb getting tighter.  I resumed wearing my splint and the next morning I woke up with a wicked ache in my thumb.  My thumb is still tight by bed time so my splint has not eliminated spasticity.  Yet I believe it has prevented a contracture which is permanent shortening of a muscle.

Losing ROM after a stroke is terrifying because spasticity hurts.  Botox shots to control spasticity also hurt because a doctor uses a needle to dig around in the muscle to find the best spot.  The consequences for me are too severe if researchers are wrong about resting splints.

1.  Lannin N, Cusick A, McCluskey A, Herbert R. Effects of splinting on wrist contracture after  
     stroke. Stroke. 2009;38:111-116.

Are Shoulder Exercises Really Worth the Effort?

Shortly after my stroke the only shoulder exercise I could do was move a skate board on a table after my hand was strapped to the device.  This was depressing, but I eventually learned even minimal shoulder motion is valuable.  It has helped me avoid humiliation, eliminate frustration, reduce pain, prevent falls, and increase my independence.

In the hospital an aide put me in sidelie in bed and washed every inch of skin my mother washed when I had a dirty diaper.  This was humiliating so I was motivated to find a way to preserve my dignity when I got permission to take showers.  Long before I had the hand function you see in the photo I was able to use my shoulder to move my forearm so it could trap the shower head against my stomach.  Water would then run down to the crotch area.  This left my sound hand free to deal with the nooks and crannies.  Pressing my arm against my body meant I did not have to choose between smelling clean and being humiliated.

rToilet paper in the hospital showed me the value of having enough strength in my shoulder to place my fist on my thigh and  enough strength in my elbow to keep my hand from slipping off.  Unrolling toilet paper with one hand would make FEET of paper unroll and pile up on the floor.  If you have seen a toddler or cat do this at home you know how it quickly stops being funny.  Being able to trap a wad of paper on my knee while my sound hand tore the paper eliminated repeated frustration.

My next challenge came when spasticity made my shoulder stiff.  This made donning a pullover top uncomfortable.  Lifting a paralyzed arm overhead in sitting to do shoulder range of motion exercises is difficult because an arm is unbelievably heavy.  After a shower I laid on the bed and clasped my hands so my palms were facing each other.  As soon as I got my upper arm past vertical I snoozed while gravity slowly pulled my arm over my head.  Doing this before dressing made my shoulder happy.


When I began to do activities of daily living in standing another problem cropped up.  I was stunned to learn that brushing my teeth and reaching for a curler and putting it in my hair made me repeatedly sway side to side and lean behind vertical.  This lack of stability is a fall hazard.  My solution was to raise my arm and place my curled hand on a piece of blue dycem.  I was not putting much weight on my hand but if I felt my hand come off the sink while I was distracted by what my sound hand was doing, I knew to stop and reposition my hand to prevent a fall.


I live alone so I am glad SaeboFlex exercises helped me gain enough shoulder and elbow strength to lean on an extended arm.  At first my arm was too weak to keep  envelopes from sliding as the opener applied pressure.  So I folded a placemat around the envelopes.  Later I was able to lean hard enough on objects to hold them still as my sound hand cut open the packaging.  Objects in the photo vary from make-up to meat.

Teach Us to Turn in the Kitchen

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

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

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

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

My New Computer

Not having a working computer can be traumatic for disabled people who want to interact with the outside world.  I do not want to know how hysterical I would have been if I had not had a smart phone to at least be able to Google and get e-mail during this painful transition.

I have used Microsoft software programs for years so I know up-dates involve finding the changes programmers have made.  For example, save a file and close a file used to be next to each other on the Quick Access bar.  Office 2016 puts them almost as far apart as the screen allows - save file on the far left side and close file on the far right side.  Shutting off the computer with Windows 10 now takes three mouse clicks instead of two.  Making basic functions that are used thousands of times more difficult is irritating.  Every year there are fewer old people who saw many versions of Microsoft products and know many of the "updates" are cosmetic changes rather than a leap in new functions.  Microsoft is counting on young people thinking the $70 they pay each year for Office 365 is worth it.

I got five books from my library.  The best one is Teach Yourself Visually Microsoft Office 2016 by Elaine Marmel.  It has illustrations of Microsoft screen pages.  The author has trained hundreds of employees who create Microsoft documents so she has lots of feedback about what is confusing.

Keeping My Christmas Spirit

This is a photo of the artificial Christmas tree I put up every year since my stroke.  After I fell on my patio I looked for ways to reduce my risk for falling.  When denial faded I was able to let myself think about what would have happened if I had broken my hip. 

I had already made myself safe by keeping furniture sliders under the big reclining lounge chair next to this window so I can slide it out of my way.  Moving the chair allowed me to place a folding chair next to the tree so I could sit down when decorating the bottom half.  However, decorating this six foot tree is tiring. Fatigue is one of my triggers for falling so I ordered a small table top tree.




I am happy  the figures of the magi and shepherd visiting the Christ child create a Christmas tableau in front of the small tree.  I made these figures years ago when my hobby was needlecraft.  I also love the tiny Christmas tree balls.  I am always amazed by how happy small things make me.

After two years I gave the decorations for my big tree to my church for the annual sale that raises money for local charities.

ADLs Are Where the Repetitions Are

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

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






2)  I have to turn 14 times to prepare cereal with a sliced banana.  I have made this same breakfast for nine years so I have made over 45,000 turns.  Add making a sandwich for lunch and preparing a hot meal for dinner and the number of turns I have made in the kitchen are in the hundreds of thousands.

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

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

Snow Shoes for a Stroke Survivor

Since my stroke I am careful about venturing outside when it snows, but I am not trapped inside until spring comes either.  I never walk on snow covered concrete because slippery surfaces are a fall hazard.  Once streets and sidewalks are clear I wear boots over my shoes to protect them from the slush and give me better traction when it is icy.  Boots also help when my car is covered with snow.  Dragging snow off my car dumps snow on my boots instead of my shoes.  Boots I tried on at a shoe store would not fit over my leg brace.  My leg brace does not allow me to point my toes which is a pre-requisite for donning boots.  On-line I found the Neos overshoe with a Velvro opening that goes all the way down to my toes.  The Villager model is lightweight and designed for occasional use which is perfect for me.

A video at www.overshoesonline.com shows how to don this boot.  Warning #1: I do not put the boots on while standing as the video shows because I do not have good standing balance.  My boots go on safely while I am sitting.  A trick the video does not show is to make the ankle straps as long as I can before I put on the boots.  After I snap the straps closed I pull on the ends of the straps to make them tight.  Warning #2: The first set of boots I ordered was too big so they flopped around when I walked.  I walk more slowly with boots on, but that beats not being able to get to the grocery store or keep important appointments like a visit to the doctor.

Freaked Out by Snow

I have driven in 47 of the 50 states.  Traveling by car makes me happy because it lets me change plans when I travel, but a freak snow storm only brought fear.  When I left to get blood pressure medicine there were only a few flakes of snow that did not stick to the ground.  By the time I came out of the pharmacy icy slush was covered by snow.  I decided to go home by a well traveled road but traffic quickly came to a stop when an accident with a bus blocked both lanes.  The police diverted all traffic to a narrow side road that meandered through fields with no homes.  Several people got stuck as their cars slipped on a low hill.  Thank God learning to drive in snowy Chicago taught me to keep my car rolling slowly in snow.  I felt fear as I carefully went around them on this deserted two-lane road.  If I had gotten stuck there were no cross streets to tell a 911 operator or the AAA towing company my exact location.

It took an hour to get home so two inches of snow had accumulated in my parking spot.  Snow storms begin in January so I was not wearing my snow boots with the grippy rubber soles.  I had a cell phone, but if I fell I did not know how long it would take the police who were dealing with many accidents to come help me.  It was 2 p.m. so all my neighbors were at work.  To manuever around my car and get up the brick path to my front door, I took tiny steps the way able-bodied people do when they shuffle across ice.  The evening news told stories about people being stuck in their car for hours.  What a nightmare.

Distracted by Another Set Back

About a month ago I suddenly felt excruciating pain in my sound knee that made me collapse back onto the couch. After that I could get up safely only by placing my sound hand on furniture to push myself up to standing and wait for the pain to subside before I start walking. Now the only way I can get out of my house is to go down the stairs backwards very slowly. This decline brought back scary memories of being confined to a wheelchair when I was in the rehab hospital.

I saw my doctor who ordered an x-ray of my knee. I have osteoarthritis and small bone spurs.  The pain is pretty intense at the end of the day whenever my pedometer says I take over 1,000 steps so I managed my pain by sitting a lot.  Switching from Tylenol to Aleve has reduced the pain so I feel ready to go to PT.  I need help to increase safety when standing up and increase my walking endurance to communty distances.