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

Staying in My Home is Not Easy

The independent living facility I hope to go to has a heated underground garage.  Until I move, I need 5 snow strategies because I have to park my car on the street.  When snow is forecast my 1st strategy is to go grocery shopping.  When we get a dusting of snow I use my 2nd strategy.  I use a child-size shovel to push snow onto my lawn.  I sprinkle Ice Melt on my walkway and in front of my car.  The big container is heavy so I use a funnel to pour Ice Melt into a small container sitting in my bathroom sink.  My sound hand lifts the big container.  My affected forearm under the big container controls the degree of tilt.  

New Jersey often gets above freezing after a snow storm.  When the weather forecast says this will happen I use my 3rd strategy.  I wait a few days for the sun to free my snow-covered car.  However, the street has a low spot that captures water as the sun melts the snow.  I need a 4th strategy to cross this small pond.  I place a thick rubber matt over the water so I can to get to my car safely.  

When the weather forecast says New Jersey will stay below freezing after a snow storm I use my 5th strategy.  I pay two teenage boys to clean my car, walkway, and snow that the snowplow has pushed against the side of my car.  They also shovel snow in front of and behind my car so I have a clean parking space.  Old people in my neighborhood are nasty when someone takes the parking space in front of their house.  homeafterstroke.blogspot.com

The Only Cutting Board That Works Great

I had a 2nd stroke so I got serious about a low salt diet.  Unfortunately, food does not have much flavor without salt so I started adding aromatics like onions.  The standard cutting board for one-handed people shown on the right is not that helpful.  Impaling food on 1 nail allows the food to swivel.  Two raised edges on the left back corner holds food still ONLY if you push the knife towards the corner.  Food like peanut butter gets smeared on the raised edge.

A cutting board that works much better is the Swedish cutting Board (1). The part I use the most is the adjustable vise (see red knob) that can be taken apart to be washed.  The vise makes it easy to spread food on bread and slice a thin English muffin, a soft tomato, or a whole head of lettuce.  Instead of 2 nails, I impale meat on 9 prongs.  This small section lifts out of the cutting board so I can put it in the dishwasher.  See the empty space in Figure 7.8 below.



For safety I cut food by using my palm to push down on a large chef's knife.  This lets me keep the ends of my paralyzed fingers away from the blade (see arrow in Figure 7.8). 

This cutting board is more expensive than a regular board but I think it is worth every penny. It makes food preparation safer, faster, and less frustrating.  homeafterstroke.blogspot.com


1. Dutton, R. My Last Degree: A Therapist Goes Home After a Stroke, 2nd ed. 2013; Booklocker.

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

Home Programs Are Like Dieting

Home exercise programs are like dieting.  Both are "shoulds" that make me feel guilty when I do not do them.  As an OT I know exercise is important, but home exercises get boring after a few months.  I am still doing home exercises because each one is anchored to something I want.
For example, avoiding pain is a powerful anchor.

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 repeatedly using my shoulder (see photo) to lift my hand. 






I start with my arms down at my sides and raise both hands to the middle of my chest using only my elbows.  This put less stress on my shoulder muscles when I lift my hand.  I do this movement 3 times before I take my pills with yogurt each day.

I set out the yogurt, spoon, and pills before I start exercising.  I am afraid I will lose the sensation of what normal movement feels like if I stop to gather supplies.  An anchor turns "I should" into "I want to."
homeafterstroke.blogspot.com

Opening Cans With One Hand

I do not use lots of canned food because most are heavily salted.  However, I love to make homemade spaghetti sauce and chili which require some canned food.  I make a big batch and freeze it in individual food containers that can be heated in the microwave.  Since I cannot make food taste better with butter or cream sauces I add lots of veggies to these one pot recipes.

I use an electric can opener made by Krups that uncrimps the metal rather than cutting it.  This leaves a smooth edge so the top can be put back on if you want to use the contents later.  The photo on the right shows how a right-handed person holds it while the photo below shows how my left hand holds it so I can see what I am doing.

Short cans do not have the clearance I need so I put them on a food storage container.  Since I do not open cans that often I have trouble finding the exact angle the opener requires.  I have to try two to three times before my wrist remembers the correct angle.          I know when I get it right because the noise changes from a high pitched whine to a low pitched growl.  The only time this can opener has let me down is when a hurricane has cut my electricity.

Happiness is Biochemical

"Your brain is like Velcro for negative experiences and like Teflon for positive ones" (1, p. 41).
We briefly notice positive experiences, but they slip away the way a fried egg slides out of a Teflon-coated pan.  Our stone age brain is wired to immediately store negative experiences that may be threats in the future (1).  A brain scan study found the brain was activated faster when people saw fearful faces than when they saw neutral or happy faces (2).  24 hours later, they also remembered more fearful faces than neutral or happy faces when they saw the photos again. 

Surprisingly, being happy does not require a positive attitude.  It requires action.  Here is a simple action that can change the brain.  Take 5 seconds to enjoy a happy moment (1).  I try to notice happy events I did not plan, like when I got the parking spot close to the entrance of a crowded grocery store the day before Christmas.  I sat still for 5 seconds, enjoying this treat before I got out of my car.  Lately I have been enjoying a shower.  I have been standing still for 5 seconds after I get out of the shower to enjoy this luxurious feeling.  When you pay attention to brief moments of happiness, the brain releases dopamine which builds a richly detailed positive memory.  For me, noticing brief episodes of happiness has a cumulative effect that affects how I feel at the end of the day.  homeafterstroke.blogspot.com

1. Hanson R, Mendius R. Buddha's Brain. Oakland, CA: New Harbinger Publications; 2009.
2. Yang E, Zald D, Blake R. Fearful expressions gain preferential access to awareness during
    continuous flash suppression. Emotion. 2007;5:227-250

Fatigue is a Deal Breaker

The fatigue I felt for the first year after my stroke was unlike anything I had ever experienced.  

I repeatedly felt a crushing fatigue that I could not push through.  When I did not rest, I could barely hold my head up after dinner.  Using a timer to force myself to rest was annoying because it would go off at the worst time.  Watching TV turned me into a zombie who could not stop clicking the remote because nothing good was on at the moment.  I tried reading and going on the Internet, but I got so absorbed in these activities that sitting for long periods made me tired.  I found two strategies that work for me. 

(1) Brief rests before the fatigue overwhelms me.  Lying on top of the bedspread with a towel under my shoes does not feel like I am going back to bed.  I lie down for fifteen minutes without having to get undressed.  (2)  Energy conservation.  For example, I divided doing dishes into 3 steps.  

Step 1: Empty dishwasher - rest 5 minutes.  Step 2: Take clean dishes to the appropriate cabinet with a cart.  I did not have to repeatedlty carry heavy stacks of dishes from the dishwasher to each cabinet - rest 5 minutes.  Step 3: Load dishwasher.  I have a double sink so I use one sink as a staging area to hold dirty dishes until I need to wash them.    

GOOD NEWS: My crushing fatigue faded after the first year!    homeafterstroke.blogspot.com

The Only Magic Bullet I Have Found

Sometimes stroke survivors tune people out, but not necessarily for the reason you think.  When I am struggling with a task, I start talking to myself.  For example, when I heard my toe scuffing the floor because I did not lift my leg high enough in the 1st year I silently said "knee up, knee up."  If someone was talking to me at that moment I did not hear what that person said.  I cannot listen to other people when I am talking to myself.  If you want me to process new information or I want to participate in a discussion, I need to sit down.
 
Avoiding multitasking is a magic bullet because it has an immediate effect.  By not dividing my attention, I  focus all my energy on the part of my brain I need to use right now.  When I take a hot dish out of the the oven I stop talking to guests.  I need to monitor my hemiplegic hand to make sure it maintains a firm grip on the 400 degree handle.  When I drive during rush hour I turn off the radio.  I need to respond quickly to aggressive, unpredictable, impatient drivers.

I am not saying stroke survivors can never multitask.  However, it can take many repetitions before a task becomes so automatic that I can simultaneously pay attention to a second task. 
homeafterstroke.blogspot.com

Constraint Therapy is Good and Bad

Constraint therapy involves 1 or more hours of therapy per week that focuses exclusively on the hemiplegic hand.  Clients also have to wear a mitt on the sound hand for 3+ hours at home each day to force the hemiplegic hand to work.  Constraint therapy is good because it challenged long held beliefs that clients cannot recover function years after a stroke.

Constraint therapy is bad because it is appropriate for a limited pool of clients.  1) Stroke survivors must already be able to straighten their fingers 10 degrees and their wrist 20 degrees.  2) It can be a problem for women who's husbands are not willing to do chores at home while wives constrain their sound hand all day.

Current research offers an alternative.  Clients can use their sound hand to guide the affected hand while making lunch, eating, and cleaning up (1).  Stroke survivors who were helped to use their hemiplegic hand during for 90 or 180 minutes improved as much as subjects who received constraint therapy for the same amount of time (2).  homeafterstroke.blogspot.com   

1. Hayner K, Gibson G, Giles G. Comparison of constraint-induced therapy and bilateral treatment
    of equal intensity in people with chronic upper-extremity dysfunction after cardiovascular    
    accident.  American Journal of Occupational Therapy. 2010;64(4):528-539.
2.  Sterr A, Oneill D, Dean P, Herron K.  CI therapy is beneficial to patients with chronic low-
     functioning hemiparesis after stroke. Front. Neurol. 2014;5: