Toilet Training is a Disaster

OTs evaluate how clients get on and off the toilet.  However, aides are the ones who deal with dressing and undressing during toileting.  Aides have large caseloads so they speed up toilet time by doing everything for their clients.  This assistance masks safety issues.  

Small weight shifts while pulling my pants up threw me off balance.  I had to repeatedly twist my trunk so my sound could reach across the front of my body to get my underpants over the paralyzed hip and reach behind me to get my underpants over the paralyzed hip in back.  Continue to twist when I pull my pants up over my affected hip.  It took 2 weeks for my standing balance to improve enough for me to feel safe when I pulled my pants up without an aide in the bathroom. 

Toileting also requires repeated turning.  After I walk into the bathroom I have to turn 180 degrees to close the door at home or a doctor's office.  I am facing the door I just closed so I have to turn 180 degrees to walk to the toilet.  When I get to the toilet I have to turn 180 degrees so I can sit down.  I have to turn 180 degrees after I stand up so I can flush the toilet.  

OTs do not evaluate gait in the bathroom because ambulation is PT's domain.  PTs do not evaluate standing balance while twisting the trunk and repeatedly turning 180 degrees because toileting is OT's domain.  Yet needing 24 hour assistance for toileting can lead to a nursing home.  This is a severe consequence so OTs and PTs need to stop worrying about stepping on each others toes.  homeafterstroke.blogspot.com

Walking in Snow with a Cane

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

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














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

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

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

Reducing Spasticity Without Needles

Many stroke survivors suffer with painful muscle spasticity.  

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

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

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

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

ADLs Are Where the Repetitions Are

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

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

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

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

I Take My Brace Out of My Shoe Twice a Year

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

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

Teach Us to Turn in the Kitchen

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

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

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

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

The Gift That Keeps on Giving

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

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

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

Walking in a Barren Environment

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

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

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

Arm and Leg Synergies are Different and the Same

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

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

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

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

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

The Final Shoe Solution

Being forced to stay home during the covid-19 pandemic helped me remember why I work so hard to solve problems caused by my leg brace and shoes.  I would be severely depressed if I had lacked the confidence to walk safely in the community during the 16 years since my stroke.

Neither the white duct tape in the photo or double-sided tape have glue strong enough to stop my leg brace from pushing the shoe insert out of place.  When the shoe insert slides to one side my foot tilts so most of my weight is on the outside edge of my hemiplegic foot (ankle inversion).  Walking on a foot that is not flat is unsafe and tiring.  I am currently using T-Rex Ferousiously Strong double-sided mounting tape to see if it keeps the shoe insert in the center of the shoe.

Long socks that reach the knee prevent skin chafing as the brace rubs the top of the calf.  However, the only knee-high socks made for women are brightly colored socks used during soccer.
I cut the top off a man's white tube sock so it covers the top my calf.  I have washed them many times.  They fray eventually but hold together for a long time.  I am happy that what people see is black socks with black shoes and beige socks with beige shoes.


My THICK leg brace creates a leg-length discrepancy by making my hemiplegic leg longer than my sound leg.  Wearing 2 socks on my sound foot makes my sound leg a little longer.  The 2nd sock also keeps my foot from sliding inside the extra wide shoes
I need to accomodate my brace.  Having my sound foot slide inside my shoe makes walking tiring and puts strain on my hip and knee.  I wish I had known about this 2 sock solution before my sound knee needed joint replacement surgery.


The long sock I pull over the short ankle sock gets stretched out which makes it easier to don.  I bought permanent ink pens to mark the stretched sock in each pair.  A black pen works for white and beige socks.  The silver pen I use on black socks fades in the wash so I have to repeatedly mark them.

If you read this entire post you may understand why I do not think this is my last post about my shoes.   homeafterstroke.blogspot.com

Community Ambulation Falls Thru the Cracks

Stroke survivors have to figure out how to walk safely in the community.  Walking in PT gyms and on deserted sidewalks in my neighborhood did not prepare me for walking in community settings.  

I had to teach myself how to maneuver around carts and people in a grocery store, squeeze past closely placed chairs and tables in a restaurant, and deal with children in a shopping mall who do not look where they are going.  PTs do not know walking requires divided attention because they walk clients in wide empty spaces that provide no cognitive challenges.  Equally unfortunate, OTs who are trained to address cognitive issues do not assess community ambulation because walking is PTs domain.  So community ambulation falls through the cracks. homeafterstroke.blogspot.com

My Pain Got worse

My central pain became intolerable at night.  Central pain is constant pain created by brain damage.  Symptoms include pain caused by normally non-painful stimuli, constant burning, 

electric shock-like pain, and a stinging, tingling, or pins-and-needles sensation.  These abnormal sensations are usually localized to one body part, especially the hands or feet.  I have a constant burning sensation in my hemiplegic foot.  Three strategies give me relief.

Initially (1) taking Tylenol and (2) raising the sheet off of my foot helped me fall asleep.  In the photo I placed a ball outside the covers to show you what the ball under the covers looks like.  The ball keeps the covers off the end of my big toe all night long.  When these two strategies were not enough to help me fall sleep I added a 3rd strategy.

(3) Gel packs heated in a microwave oven.  WARNING: Gel packs heat up very quickly and are deceivingly cool at 1st touch.  I heat the gel pack for only 25 seconds on High because a stroke took away my ability to tell the difference between hot and cold in my leg. To safely remove the gel pack from the microwave and transport it to my bedroom, I put it on a stiff paper plate.  I place the gel pack NEXT to my foot. The gentle heat gradually extinguishes the burning sensation in my foot so I can fall asleep.

 Two sensations can cancel each other out.  This is why you rub a painful body part that has bumped into an object.  Ben Gay cream works because it has Capsaicin that produces a mild burning sensation that cancels the awareness of muscle pain.  homeafterstroke.blogspot.com

Another Thing I Did Not Know About Stroke

When I was an OT who specialized in stroke rehab I did not know the temperature of my hemiplegic foot could vary widely.  Two studies found a stroke survivor's hemiplegic leg may have atrophy of the superficial femoral artery which reduces blood flow (1, 2).  This may explain why my hemiplegic foot feels ice cold by bedtime in the winter.  However, poor leg circulation does not explain why my hemiplegic foot is hot and red by bedtime in the summer, even though I have air conditioning.  Sometimes my brain interprets this high heat as pain so then I walk barefoot after dinner with my quad cane.  The quad cane has four feet that force me to walk slowly which is irritating.  A stroke taught me things I did not learn from an advanced certification course or treating stroke survivors.  homeafterstroke.blogspot.com

1. Durant MJ, et al. Superficial femoral artery atrophy and reduced lower limb blood flow in
    subacute stroke survivors. Stroke. 2020(Feb);51:ATP484.
2. Ivey FM, et al.  Impaired leg vasodilatory function after stroke.  Stroke. 2010(Oct);41:2913-2917.

What Therapists Do Not Know About Falling

I recently heard a doctor on TV say elderly people should not look down when they walk.  He said using vision to prevent falls weakens the balance system.  Yet stroke survivors look down because even tiny obstacles can be dangerous.  Here is an example.  I had a terrible fall while walking on a slate walkway.  I fell after I stubbed my toe on the edge of a tile that was tilted up about an inch. Thank God I did not fall forward and smack my forehead on the slate sidewalk.  I instinctively dropped my cane and threw my sound arm forward to try to catch myself.  This sudden arm movement rotated my body slightly to the right so I fell on the grass.  I hit the ground so hard I had dirt and pieces of grass caught under my glasses after my face hit the lawn.

Therapists may not know how violently stroke survivors can fall.  Human subjects committees would not allow researchers to put test subjects on a tilt plate that can cause a sudden fall without first putting test subjects in a safety harness.  PTs have to be conservative when they walk stroke survivors because they cannot have anyone fall on their watch.  homeafterastroke.blogspot.com