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:

Kinesio Taping Reviewed

A subluxed shoulder is painful because the upper arm (humerus) has slipped out of the shoulder socket.  It felt like someone had punched my shoulder very hard.  Subluxation is rated by how many fingers you can fit in the space created by this abnormal shoulder separation.  I had a one finger subluxation so the hospital staff put a small lap tray that slid over one armrest of my wheelchair.  I made sure the staff put the tray on every day because I knew nerve damage can occur if nerves in the shoulder are stretched too much. 

The lap tray could not support my shoulder when I walked and did exercises while sitting on a mat table.  My shoulder ached constantly during these times until my OT bound it up with Kinesio tape. This wide tape provides support but is stretchy enough to allow movement.  I wore the tape 24 hours a day - even in the shower.  It eventually came loose and had to be replaced every third day.

Hanger and associates found stroke survivors who had their shoulder Kinesio taped had less shoulder pain (1).  The improvement got very close to statistical significance (p = 0.11) because some people were helped while others were not.  Kinesio tape was the only thing that made that my constant shoulder pain go away.  homeafterstroke.blogspot.com

1.  Hanger H, Whitewood P, Brown G, Ball M, Harper J, Cox R, Sainsbury R. A randomized controlled trial of strapping to prevent post-stroke shoulder pain. Clinical Rehabilitation. 2000;14(4):370-380.

Paratransit Skills

An article about community mobility skills (1) reminded me that OTs do not know if clients can use paratransit without knowing the demands of the systems available to them.  Here is a comparison of two systems I used.  One covers the state of New Jersey.  The other covers only my county.    

Language.  To qualify for the county service I only had to give my address and diagnosis during a brief phone conversation.  The state required a one hour in-person interview where I had to give specific examples to explain why I could not take public transportation.  Giving my diagnosis was not enough.  When making a reservation, both systems asked me what ambulatory device I used (e.g. cane, wheelchair) so they knew what type of vehicle to send.

Balance.  My balance is poor so I would fall if I was standing when the vehicle started moving.  Both services did not allow the drivers to start driving until I was seated and had my seat belt fastened.  Vehicles that carried wheelchairs had tie-downs which the drivers handled. 

Strength.  The county provides door-to-door service which means the driver provides physical assistance to go up and down stairs and carry packages.  The state provides curb-to-curb service.  This meant the driver stood by the vehicle while I got myself in and out of the house, on and off the vehicle, and transported packages.  Both services had vehicles with a wheelchair lift to get a client in and out of the vehicle.

Endurance.  I had to wait for the county service to pick up a few seniors that wanted to go to the senior center.  I had a short 2 mile ride with the seniors before I was dropped off at the grocery store.  The state service picked me up from 20 minutes before to 20 minutes after the time I requested (a 40 minute window).  The state may run long trips with multiple riders who have different destinations.  When I had to wait for other people to be picked up and dropped off, I might ride for an hour before reaching my destination.  With both services I had to be at the door so I could see the vehicle pull up which would wait only 5 minutes.  I bought a folding three-legged stool with a shoulder strap that hunters use so I could sit down if I got too tired in a store.  

Planning Ahead.  For the county a reservation had to be made 2 weeks in advance and they asked only for my name because they took me to only one destination.  For the state a reservation could be made 24 hours in advance and they asked for my paratransit identification number.  To remember the pick-up times at each end of my trip I wrote them on a calendar for the day of the trip.  The county service required only the name of the store because the person making the reservation was local and knew the area.  The state service required exact addresses and names of cross streets because the person making the reservation was miles away.  I got out a list of this detailed destination information before making a reservation.  Both services had a two bag limit.  This meant I had to plan multiple trips when I needed bulky objects like toilet paper.  I also had to plan repeated trips because paratransit took me to only one destination at a time - grocery store, drug store, doctor, dentist, out-patient therapy, etc.

Money Management.  The county service was free.  The state service required exact change.  They told me the cost of a one-way fare when I made a reservation.  Cost was based on what it would cost me to make that trip on public transportation (e.g. bus fare of $2.25).  I kept a supply of one dollar bills and coins.  homeafterstroke.blogspot.com

1. Dickerson A, Davis E.  Ckecklist of community mobility skills. OT Practice. 2020;October:13-16.

Feeling Embarrassed is a Luxury I Cannot Afford

At a patio dinner party I was the only person who wanted watermelon for dessert.  That meant I got the round end of the watermelon that rocked every time I touched it with a spoon.  Eating it was a slow process because the best I could do was get a thin slice each time.  My hostess tried to help me because she was so uncomfortable with my awkward attempts.  This is the first time my friend has seen what happens the first time I try a new task.  She does not know my performance will improve because I often discover solutions that make my 2nd attempt go better.  She does not know I can count on getting faster and smoother with repetition.  I refused to let her help me because I will never know if I can do a new task if I do not try.

A few minutes later another friend at the dinner party asked me if I get embarrased.  I told her my plate is often too full to feel embarrased.  For example, able-bodied people stand up without any conscious awareness of what their body is doing.  When I stand up I have to make sure my center of gravity is over my feet before I straighten my legs.  If I lean too far backwards I fall back onto the couch or chair I was sitting on.  If I lean too far forwards I fall on the floor.  My stroke often forces me to concentrate so hard that I do not have the mental energy to worry about what other people are thinking.  homeafterastroke.blogspot.com

I Am Feeling Better

I still wake up at 2 a.m. to go to the bathroom and have trouble falling asleep unless I listen to a meditation CD.  However, since reading The Moth Snowstorm - Nature and Joy by Michael McCarthy I have not been waking up with a sense of dread.  This book inspired me to sit on my patio every day.  The 1st thing I notice is the smell of plants.  The sun and cool breeze on my face also feels wonderful.  I am entertained by bird drama.  One day I saw hawks flying slowly in circles while they looked for prey.  A few minutes after the hawks disappeared, I saw one small bird and then two and then a trio flying in a tight triangular formation.  The trio flew to the west and disappeared.  Then they flew back to the east and disappeared.  Finally they flew to the west and did not come back.  Another day I saw 6 tiny birds land on a telephone wire with a perfectly synchronized touch down.  It was like watching a miniature version of the elite air force flying squad the Blue Angels.  Bird TV is better than being aggravated by TV commercials for car insurance that repeat every 7 minutes.  

As I sat on my patio I noticed a shadow moving on my walkway.  The two photos below were taken 15 minutes apart.  Cocooning indoors for months made me completely forget I used to know time was not one momotonous unending event.  These images reminded me I used to see each day progress by seeing the angle of the sunlight change when I went outside. 

The sound of the wind in the trees behind my house helped me remember a happy childhood memory.  My parents rented a cabin in the woods for a summer vacation.  I enjoyed a gentle wind blowing in the trees that lulled me to sleep as I lounged on a screened-in porch after lunch.  

Being outdoors has helped me pay more attention to my surroundings.  Tuning out because I am listening to stories I create in my head has decreased.  I feel joy some of the time when good things happens when I am inside.  I am getting better.  homeafterastroke.blogspot.com

I Am Losing the Will to Live - Again

I lost my will to live after my stroke when I was kept inside for 3 months except when my home health PT took me for a walk outside.  I learned I cannot stay sane if all I do is stare at the outside world through a window.  I was imprinted on the natural world as a child because we did not have a TV until I was a teenager and the Internet had not been invented yet.  As soon as I got home from school I went ouside to play.  If only two children were available to play baseball, we invented rules for imaginary players on base.  If I was alone I played hopscotch, practiced throwing a basketball at the hoop, or rode my bike.  As an adult I went camping with friends, jogged outdoors in all seasons, tended a vegetable garden, and took vacations in national parks.  My most vivid vacation memory is riding a mule down into the Grand Canyon.

This hot, humid summer meant I lost the opportunity to walk around my neighborhood, sit on my patio to watch the clouds rolling out to sea, and feel a cool breeze on my face at the lake in Mercer County Park.  At sunset I missed watching pairs of birds racing each other down the middle my street at car height or playing "I can push you off the telephone wire if I land one inch from where you are sitting."  I realized how deep my depression is when my friend Janet talked about a book that describes about how we developed a relationship with nature for tens of thousands of years of human evolution.  The book is called The Moth Snowstorm by Michael McCarthy.  

Michael reminded me that nature can both stun and gradually soothe me until I fall silent.  I do not mean I just stop talking.  I mean nature can stop the constant chatter I create in my head but forget is there because it is so constant.  Covid has turned a lot of my internal chatter into catastrophic thinking which is depressing.  I need to find ways to get nature back in my life because I know it has a powerful effect on me.  homeafterastroke.blogspot.com

Cheap Equipment That Prevents Spills

Stroke survivors can prevent messes when they cook by using cheap objects instead of buying expensive adaptive devices from a medical catalogue.  For example, my hemiplegic (paralyzed) hand cannot reach up and hold the handle of a pot to keep the pot still when I stir food or flip food with a spatula.  So I slide pots off the burner onto a heat-resistant fabric hot pad before I stir or flip food.  Friction has always kept the pot still.  Now I use a cheap silicon hot pod to hold things still (see below).

An even more delicious way to save money is to use the plastic lid from a peanut butter jar.  This lid catches spills when I measure spices or messy food like olive oil.  It is frustrating to stop to clean up a mess I just made on my counter top.  Using spices is a matter of life-and-death because I am on a low salt diet to help control my high blood pressure.  Low salt food tastes awful without lots of spices.  homeafterstroke.blogspot.com

I Am Really Angry

Strokes that affect blood vessels at the back of the brain are associated with significant diagnostic error (1).  This finding mirrors my stroke experience.  Sixteen years ago my brainstem stroke started when I repeated fell back on my bed while putting on eye make-up.  In the emergency room I was able to talk and sign my name so I was left alone and fell asleep.  When I woke up I called to find out if I could have something to eat because I did not have breakfast.  A staff member did a neuro check and looked concerned when I could not squeeze her hand with my right hand.            A neurologist was not on duty so it took a while before someone ordered brain scans.

Abedi's suggestion that hospitals should use artificial intelligence to improve diagnosis of these strokes really makes me angry.  Facilities do not need to buy expensive computer programs to diagnose a stroke in posterior blood vessels.  Health care professionals need to forget the old F.A.S.T. warning signs and learn the new B.E.F.A.S.T.  The B. and E. are signs of a posterior stroke like a brainstem stroke. 

B = Balance.  SUDDEN loss of balance/dizziness/coordination is not caused by an ear infection.  

E = Eyes.  SUDDEN difficulty seeing out of one or both eyes (e.g. blurred or double vision). 

F = Face.  Weakness of one side of the face that produces an uneven smile; facial numbness.

A = Arm.  Weakness of one arm (e.g. unable to raise both arms evenly).

S = Speech.  Slurred speech; trouble understanding speech, difficulty repeating simple phrases

T = Time lost = brain lost.  Call 911 immediately.  

homeafterastroke.blogspot.com

1.  Abedi A, et al. Using artificial intelligence for improving diagnosis in emergency departments: a practical framework. sagepub.com.  August 25, 2020. doi.org/10.1177/1756286420938962. 

Cheap Equipment That Reduces Frustration

A cheap seam ripper I bought at a sewing goods store got rid of a ton of frustration.  I open seals around the top of bottles by slipping the point of the seam ripper under the edge and ripping upwards or downwards.  Then I pull off the seal by grabbing the cut edge with my sound hand while I squeeze the bottle between my thighs.  Sometimes I grab the cut edge with my teeth as my sound hand holds the bottle.  No more trying to slice with the tip of a knife which shreds rather that cuts.  

I use the tip of the seam ripper to rip open the foil at the top of a pill bottle and dig out the cotton ball that fill half of the bottle.  Preventing decades of frustration is not a small thing - so much energy saved for better things. homeafterstroke.blogspot.com

Safety Precautions Rocket Me to Independence

I am divorced, was not able to have children, and have one brother who lives 800 miles away so I am more likely to end up in a nursing home than some stroke survivors.  Fortunately, precautions that facilities use to keep people safe propelled me to independence.  In the rehab hospital I made the mistake of wheeling myself out to the patio when I was done with therapy for the day. The aide who was sent to find me said I could not sit outside alone.  When I pointed to people who were sitting alone she whirled my wheelchair around and took me back to my room.  The last time I was dragged inside I was probably three years old.  A psychologist said the staff were afraid I would wander off if they let me go outside, but he brokered a compromise.  I could sit outside if I came back upstairs and wrote down where I was going on a clipboard. 

Safety precautions are good.  The problem is staff who rigidly apply precautions to everyone. 
Did anyone read my chart to learn I had a stroke in the back of my brain (brainstem) instead of the cortex where cognitive functions are located?  I was treated like my roommate who was so confused she tried to use the TV remote as a telephone.  The staff attached a sensor to me at night to keep me from getting out of bed.  Every time I rolled onto my side I triggered a very loud alarm and had to wait for an aide to come shut it off.  When I finally complained, a nurse said they would stop using the sensor if I signed a release form saying they were not liable if I fell out of bed.  How long they would have used it if I had not objected? 

When I toured an assisted living facility I was upset again by procedures designed to keep people safe.  The director who gave me a tour said "elderly people prefer to have a nurse give them their medication."   If a nurse dispensed my pills, my day would revolve around visits to the nurse because I take pills three times a day.  I am not living in an apartment if the nurse can open my door with a master key to give me my pills if I sleep in.  homeafterstroke.blogspot.com

Some People Invade My Personal Space

I snapped at a dear friend when she offered to retie my loose shoelace.  Even though I said I could do it, she insisted on helping.  This made me angry because every doctor I have seen since my stroke reaches down to untie my shoes during a physical exam.  They do it quickly because they know it is not appropriate for a male doctor to undress a female patient.  I do not know how old I was when I decided my clothing is a part of my personal space, but it was a long time ago.

Telling my friend I could do it as fast with one hand as she could do it with two hands was not a deterrent.  She said "I could tie your shoe at least once so you won't have to."  My strategy to handle this more gracefully next time will be to say "Can you tie a shoelace that has only one free end?"  homeafterstroke.blogspot.com

Writing Aids I Cannot Live Without

The long boring weekends in the rehab hospital drove me crazy.  When my recreational therapist gave me an opportunity to practice writing with my sound, non-dominant left hand I jumped at her offer.  My friend Arlene did not volunteer to write checks to pay my bills for the rest of her life.  Kathy helped by bringing me clear Dycem and crossword puzzles she had enlarged on a Xerox machine to make the spaces bigger.  Clear Dycem is thin and slightly sticky so it holds the paper still as I write.  Solving crossword puzzles was more fun than writing letters of the alphabet over and over like I did as a young child in school.

When I got home I found clear Dycem at www.pattersonmedical.com but was shocked at the price.   However, I splurge on a small roll of clear Dycem which costs $55 + shipping and handling because it is a writing aid I cannot live without.  I have pieces of it every where I sit down to take phone messages, pay bills, do crossword puzzles, write reminders on Post-It Notes, etc.  I make it last longer by washing it.  A small roll (8 inches x 2 yards) lasts almost two years. 

I also splurge on gel pens that cost $15 a box.  Gel pens are more forgiving that ball point pens that must be held at a precise angle to make the ink flow.  homeafterstroke.blogspot.com 

Nails Do Not Stop Growing After a Stroke

         CAUTION: CLIPPING NAILS REQUIRES GOOD SENSATION AND COORDINATION

I live alone so I have to cut my nails.  I cut the nails on my sound hand by using an adapted nail clipper.  The end of the large nail clipper has a square handle which is comfortable for my palm to press on.  The long handle also gives me good leverage when I push down.      I returned the small nail clipper.  The V-shaped end dug into my palm when I pushed down.  The short handle meant I had to press hard to get enough force to cut my nail.

The large nail clipper has emery boards held by pegs that are tightened by hand.  I use these emery boards to remove sharp points at the corners of my nails. This is safer than trying to get the clipper into these tight spaces.  The clipper came with four emery boards, but replacing them is a challenge.  All the stores near my home sell only wide, thick boards (see pink board) that do not fit in the clipper.  The Internet sells long emery boards except for this link.

My sound hand uses a regular nail clipper to cut nails on my affected hand.  Spasticity in my affected hand makes my fingers curl.  To straighten them, I prop them one-at-a-time on a the edge of an opened drawer.  The open drawer allows my sound hand to get low enough to get a good cutting angle.  I put a piece of non-slip shelf liner under the finger to keep it from slipping, but the shelf liner got in the way when I photographed my hand.


Bottom Line: I cringed when I learned the large nail clipper costs $37.50, but nails do not stop growing so I do not have a choice.  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.

I Cannot Use Salt to Make Food Tasty

I had a 2nd stroke two years after my 1st stroke so I got serious about lowering my blood pressure with a low salt diet.  Low salt food tastes terrible so I jacked up the flavor with onions and garlic.  Peeling garlic is a challenge.  I use the smooth side of meat pounder to smash the garlic open so I can remove the peel with my sound hand.  Then I chop the garlic with a large kitchen knife. Rocking the knife over the garlic creates a mix of small and medium size pieces.  I place a food scraper in my affected hand so my sound hand can scoop up chopped food and dump it in a mixing bowl or pot.  Notice that the fingertips of my affected hand are not touching each other or the food scraper.

But sometimes I want small uniform pieces of garlic that are evenly distributed in a dish.  I spice up turkey burgers by stirring crushed garlic into an egg before adding it to the raw meat so I will not bite into a big hunk of garlic.  However, a garlic crusher takes lots of hand strength to squeeze the two arms of the crusher together.

I rest the bottom arm of the crusher on my cart as I grasp it with my sound hand.  Leaning on the top arm lets me press down with my whole arm.  I catch pieces of flying garlic with a piece of saran wrap.  To get garlic clinging to the crusher into a bowl or pan, I place the crusher in my affected hand so my sound hand can use a knife to scrape off the garlic.  homeafterstroke.blogspot.com

Handicapped Parking

Handicapped parking is more than being close to the door of a store.  The wider handicapped space is very helpful.  It is difficult to load purchases in the car because a regular parking space leaves very little room to open the car door.  Able-bodied people solve this problem by leaving their shopping cart at the back of their vehicle and walking the bags to the open car door.  I have poor balance so walking with a bag in my sound hand instead of a cane is a fall hazard for me.  The wider space lets me pull the cart up to my open car door to unload my bags.

A regular size parking space is difficult for another reason.  It is hard to get in and out of a car when I can open my car door only two feet.  This small opening makes it hard for me to maneuver a heavy leg brace that will not let me point my toes.  A wide handicapped parking space is especially important for someone in a wheelchair.  They need the car door to open widely so they can slide from their wheelchair onto the car seat.  homeafterstroke.blogspot.com

Stroke Survivors Need to Talk

Research with over 1,000 stroke survivors in the UK found that one in five choose to keep their fears to themselves (1).  Major fears included having another stroke, never getting better, and being sent to a long-term care facility.  Reasons for remaining silent included not wanting to worry others and not wanting to sound stupid.

I rarely discuss my stroke issues with family or friends for two reasons.  First, the challenges a stroke creates never ends.  I do not want to see able-bodied peoples' reaction to a litany of complaints that never end.  Second, after trying to explain a few problems to able-bodied people
I found they do not understand the emotional and physical toll a stroke creates.  In contrast, a stroke survivor recently thanked me for a presentation I gave.  I showed him a simple way to hold a toothbrush still while appying toothpaste with his sound hand.  He thanked me enthusiastically because he knew how irritating it would be to clean up sticky toothpaste when a toothbrush falls over every day until he dies.  He gets me and I get him.  Thank God reading stroke survivors blogs showed me that we can get better after rehab ends and my concerns are not stupid.  homeafterstroke.blogspot.com

1.  https://thiis.co.uk/research-reveals-the-often-silent-fears-and-concerns-putting-stroke-survivors-recoveries-at-risk/

Adaptive Garderning After a Stroke

Anti-depressants do not just come in a pill.  I am glad I found a way to garden after my stroke because it makes me happy.  I get to enjoy beautiful flowers every time I come home.  However, each year I forget the tricks I discovered so I took photos and described the steps.

At first I pulled plants out of their containers one-handed.  The moist dirt balls broke apart.  I learned to let the plants dry out a little.  The photo shows a child size spade I slide down the sides of each container to loosen the roots.  


I use a big plastic pot that is lighter than clay.  After I partially fill the pot, I put a ring on top of the dirt.  I made this ring out of a disposable plastic cutting board.  The ring keeps plants away from the rim and gives me something to lean the 1st row of plants against.  A small cup helps me fill the narrow space between the ring and the edge of the pot.  I make sure the plants are touching each other so they grow into a thick ball that prevents water evaporation.  I drop fistfuls of dirt in the small spaces between the plants.  Then I pull out the ring.

I use my hemiplegic (paralyzed) hand to hold the watering can still so it will not tip over as I fill it with the hose.  I use the garden hose to wash off the dirt I have spilled on my concrete patio. 

I lower the pot onto a bench and carefully slide it next to the chair I sit in to watch the sunset and drink a cup of coffee.                                                                                                                        P.S. Rebecca you only need four 4-packs.  homeafterstroke.blogspot.com

Do Not Go Gently Into That Good Night

An OT told me about a client in a nursing home who wanted to get off the toilet line.  The toilet line is for people who have to wait for two aides to transfer them on and off the toilet.  The client wanted to get off the toilet line so badly it took her only 2 months to learn how to use her artificial leg again so she could walk into the bathroom.  This story confirms my worst fears about nursing homes.        I can hear the staff telling this woman she would feel much safer in a wheelchair.  Her story reminded me of Dylan Thomas's poem.

Do not go gently into that good night
Old age should burn and rave at close of day
Rage, rage against the dying of the light

My rage was triggered recently when someone tried to take away my independence.  Women at my breakfast club give small gifts for Christmas.  To make it easier to take the gifts home, I put them in the bag that came with one of the gifts.  The photo shows the hook on the Christmas ornament that kept getting caught on the handle of the bag.  As I was struggling I saw a hand reach across the table.  The hand disappeared when the rage I felt showed on my face.  I should have said "I'm not a young child playing with a sharp knife" so say "may I help you?' homeafterstroke.blogspot.com

Cooking is Therapy for My Hand

Cooking is therapy for the hand because many tasks have to be done with both hands.
Below are a few examples of kitchen tasks that force me to use my hemiplegic hand.

The photo shows me holding a Cuisinart container with my hemiplegic hand while my sound hand scrapes out the food that always sticks to the side of the container. 

Two more examples - One hand holds a pot still while the other hand stirs the food.  One hand opens the refrigerator door and the other hand takes food off a shelf.

A stroke taught me a palmar grasp is useful.  In the photo the ends of my fingers are not touching the object or each other.  Why wait until tip pinch emerges when a palmar grasp lets
able-bodied adults to do ADLs that have to be done thousands
of times?



I am not the only one who thinks cooking is therapy for the hand.  OTs at Samuel Merritt University had stroke survivors prepare lunch and clean up (1).  The group that was helped to use both hands during cooking used their hemiplegic hand more often at home than the group who received constraint-induced therapy.  Transferring skills to a new setting is more likely to happen when the practice task closely resembles the target task.    homeafterstroke.blogspot.com

1.  Hayner, K., Gibson, G., & Giles, G. (2010).  Comparison of constraint-induced movement
     therapy and bilateral treatment of equal intensity in people with chronic upper-extremity
     dysfunction after cerebrovascular accident.  American Journal of Occupational Therapy, 64(4),
     528-539.

Dysarthria is More Than Slurred Speech

I had a stroke in the pons which contains the bridge to the cerebellum which controls coordination.  Poor coordination of my lips, cheeks, and tongue made my speech severely slurred (dysarthria).  The good news is that I never lost the ability to understand what people were saying.  The bad news is that people could not understand me. 

Not being able to control my breathing made speaking difficult.  To speak you have to let your breath out slowly.  At first I would exhale explosively in one big gasp.  I had to take extra breaths to finish even one sentence.            I gradually regained the ability to say more before running out of breath.  It is still tiring to speak in a group because I have to take deep breaths to be heard.  Thankfully people never have trouble understanding me on the telephone.  I speak into an ear bud so I never have to raise my voice which requires more air.

My dysarthria has never fully disappeared.  When I am tired my speech is still somewhat slurred.  homeafterstroke.blogspot.com

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 increased above the threshold line, I got a few seconds of stimulation and was rewarded with a visible hand motion.  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.  This added feature is important because stroke survivors have trouble both recruiting and relaxing muscles.

I tried other electrical stimulation devices that 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 up to 60 seconds to make that muscle relax.  Devices without a biofeedback component zapped me whether I was ready or not.  It was like dancing with a really bad partner who kept jerking me around the dance floor.  NeuroMove patiently waited for me.

Neuroplasticity helps stroke survivors 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.
homeafterstroke.blogspot.com

When I Cannot Finish What I Started

If I were still married, asking my husband to fix me breakfast would have been a disaster.  Harley got up at 6 a.m. every day we were married.  His routine was to go to a convenience store like 7-11 to get a cup of coffee and sweet roll and come home to putter in the garage.  On Sundays I slept in and he went to a flea market.  If he made breakfast for me after my stroke, one of us would have had to change life-long habits.  Repeated frustration can turn into resentment.

It does not matter if I can get out a box of cereal, a bowl, and a spoon.  My hemiplegic hand has to reach out to grab the handle of the milk container to stop it from moving when my sound hand pulls off the cap.  Even if my husband opened the container the 1st time, prying the cap off one-handed could make the container tip over.

 If I cannot open the milk container I cannot finish what I started

Caregiver Disconnect

Forty caregivers of stroke survivors reported they often felt abandoned (1).  This may sound surprising unless you know therapists usually do not talk to caregivers.  Lutz found that "during rehabilitation many of these caregivers still hoped and expected that the stroke survivor would return to pre-stroke function (p. 8)."  Caregivers reported not knowing how to help when their loved one went home.  One caregiver said when her husband struggled with a task she helped by doing it for him.  This solution produces muscle weakness and mental decline which increases the caregiver's burden.

As an OT I was oblious to the stress that caregivers experience.  They have to: 1) take on their partner's chores, 2) be a therapist, and 3) be a case manager.  A wife may take out the garbage and change the batteries in smoke detectors.  A husband may clean toilets, do laundry, and cook.  When caregivers are therapists, they may help with self-care like bathing, set up home exercises, and deal with a stroke survivor's bad moods.  When caregivers are case managers, they schedule doctor and therapy appointments, arrange transportation, deal with insurance companies, and make multiple trips to the drug store to pick-up medication.  Many caregivers do this without professional psychological support or respite care.  Now I see that caregivers are angels.   homeafterstroke.blogspot.com

(1).  Lutz B et al. Improving stroke caregiver readiness for transition from inpatient rehabilitation
        to home. The Gerontologist. 2016; Vol 00:No.00,1-10. doi10.1093/geront/gnw135.

Another Cheap Solution

Here is another example of how stroke survivors can use cheap every day items to solve problens instead of ordering equipment from an expensive medical catalogue. I love my kitchen garbage can except for 1 thing.   As it gets full, the weight of the garbage pulls the liner down.  The notch (see arrow) does not keep the liner in place.  Garbage can get caught between the liner and the can - yuk. 

Recently I saw 2 metal clips resting on my counter that I forgot to put away.  I thought the clips might hold the liner in place.  Voila - the tiny black clips next to the hinge do the job.  I am so happy.  Serendipity saved me again.  Having a master's degree in OT is not enough.

I had to do in-store shopping to find a kitchen garbage can I can use.  I discovered I cannot use a garbage can that opens by stepping on a pedal.  This mechanism requires me to slowly step on the pedal so the lid does not fly open.  My balance is not good enough to do this.  I learned garbage cans with openings in the lid that swing open when touched are small so the edges can get spattered with food - another yuk.

A model made by Hefty has a lid that hangs over the side (see arrows).  I lift the lid with the back of my hemiplegic fist so my sound hand is free to dump the garbage.  homeafterstroke.blogspot.com

Reading One-Handed

After my stroke I still enjoy reading, but holding a book one-handed is tiring and frustrating.
I am glad I found a book holder that works for every size book.  The clear plastic page holders (see black arrow) move in and out so they adjust to thin and thick books.

The easel arm is also adjustable.  I release the lock (white arrow) and tilt the book holder so it is more horizontal or more vertical.  This gives me a good reading angle regardless of the size of the book or the resting surface I am using.

I found this Actto book holder at amazon.

homeafterstroke.blogspot.com

Working Smarter Instead of Harder

I get reader's fatigue when they read my long procedural posts like Bathing Can Be Exhausting,
I Am the Queen of Velcro, Applying Make-up One-handed, and Things You Don't Learn in Driving Rehab.  However, modifying even 1 or 2 steps makes life easier which reduces frustration.  The good news is repetition turns long adapted procedures into a routine I do not have to think about.  Repetition is a gift that keeps on giving.    homeafterstroke.blogspot.com

Eyedrops After Cataract Surgery

People who do not have someone to put drops in their eyes four times a day need help.  Task modification helped me succeed after my recent cataract surgery.  It is easy to drop a tiny 5 ml bottle.  It is also difficult to squeeze the stiff sides of a tiny bottle.  I am glad I found the Autosqueeze Eye Drop Bottle.  The big wings are easy to hold and require only a gentle squeeze.

Before I lie down on my bed I gather two bottles of eye drops and a Kleenex tissue.  I put a pillow on my chest (not stomach) and put my sound elbow on the pillow.  This support makes my hand remain steady instead of bobbing around as I hold the bottle in the air.  To stop myself from blinking I distract myself by looking through the opening formed by my thumb and index finger instead of the bottle.  I try to get the drop in the inner corner of my eye.

When I put the cap back on I need to stop my hand from bobbing up and down and accidentally touching the tip of the bottle.  I keep my hand still by pressing my elbow firmly against the pillow.  homeafterstroke.blogspot.com

Pain Scales

My knee surgery has been delayed.  I used some of my time to document pain levels.  Dividing pain into mild, moderate, and severe is not enough to identify 10 different levels.  Noting whether pain was intermittent or constant was helpful.  It helped to document when pain disrupted my Activities of Daily Living (ADLs) and how much pain reliever I took.  At 6-10, emotional distress added further refinement.  Here are the 10 levels of pain I have experienced over a lifetime.

1.  Have to think to recall if I had Mild  Intermittent pain during the day.
2 . Spontaneously aware of Mild  Intermittent pain throughout the day.
3.  Mild  Constant pain.  650 mg Tylenol at bedtime.  Must do some ADL tasks differently
     (e.g. walk down stairs backwards).
4.  Moderate  Intermittent pain.  Added 650 mg Tylenol in a.m. because I ache before I get up.
5.  Moderate  Constant pain makes me achy and exhausted by the end of the day.
     Worried about what 9 months of Tylenol is doing to my liver.
6.  I cannot tolerate Constant  Moderate pain much longer.  Irritable!! 
     Need 2 attempts to do some ADL tasks (e.g. stand up).
7.  Severe pain makes me afraid I cannot finish a task (e.g. thought about leaving loaded cart in

     the grocery store and going home).

8.  Severe pain makes me say "Ow that hurts" but I am able to remain still.
9.  Severe pain makes me Yell "OW" and I jerk involuntarily.
10. Excruciating pain: Not able to make any sound because I cannot exhale or inhale.
        homeafterstroke.blogspot.com

Handicapped Bathrooms Are Badly Designed

Handicapped bathrooms in hotels I have stayed at since my stroke are poorly designed.  

The most common error is placing the towel rack on a wall ten feet away from the tub.  It may be dangerous for a companion to turn his or her back on a disabled person and walk across the room to retrieve a towel.  I solve this problem by dragging the luggage rack into the bathroom.  I place my towel and bathrobe on the rack where I can reach them while sitting on my folding shower stool.  In a regular room I place my towel and robe on the lid of the toilet seat which is often super close to the tub. In a handicpped bethroom the toilet is far from the tub to make room for a wheelchair.

I ran into two unique problems at one hotel.
1) The shower curtain was so short and hung on a rod that was so far away from the edge of the tub I could see a speckled beige bathroom tile floor when I looked down.  A wet floor is a Fall Hazard.  Before I got in the tub I put a bath towel on the floor to soak up the water that fell through this gap as I showered.  A cheap solution is to purchase longer shower curtains that can be tucked inside the bathtub.

2) When I detached the shower hose to use in sitting, I had to turn off the water while soaping up because letting the nozzle hang free let it point outwards to spray water on the floor (photo on left).  A wet floor is a Fall Hazard.  

These negative experiences taught me to stop asking for a handicapped bathroom when I travel.  homeafterstroke.blogspot.com

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

Tiny Habits

Fogg explains how to make my life easier after a stroke (1).  He says Behavior = Motivation + Ability + Prompt (MAP).  Motivation is unreliable because it comes in waves that vary from day to day, morning to evening, and even minute to minute.  Motivation also fails because it is usually attached to outcomes like saving $500.  An outcome is not a behavior I promise to do.  Finally, motivation can be highjacked by the "go big or go home" philosophy.   

A is for ability which is how much skill the task requires.  Stroke survivors and caregivers can find ways to make a task easier by reading blogs and books written by stroke survivors (see About Me page and my Blog List on the right side bar).  Although I am an OT sometimes I need help solving a problem.  However, an OT or PT evaluation never identifies all my concerns.  I start every new round of therapy by walking in the door with a list of problems I want them to solve.

P is for prompt.  Prompts like to-do lists and calendar alerts on my iphone are SO easy to ignore.  Fogg and I believe in the power of established routines to trigger a new behavior.  The tricky part of using an established behavior to prompt a new behavior is finding what Fogg calls the trailing edge of an old behavior.  For example, I kept forgetting to put drops in my eye after eating breakfast.
I did not succeed until I discovered the last thing I do after breakfast is rinse my cereal bowl.
Now I rinse the bowl and think about using eyedrops to rinse my eye after my recent cataract surgery.  "After breakfast" was too vague.   homeafterastroke.blogspot.com

1.  Fogg BJ.  Tiny Habits.  New York: Houghton Mifflin Harcourt; 2020.

Applying Make-up One-Handed

Applying eye liner requires the ability to close one eye while you keep the other open.  I can only blink (close both eyes at once).  So I use mascara instead of eye liner to give my eyes more definition.  My affected hand can squeeze tubular shaped objects between my index and middle finger so my sound hand can open the mascara in the photo.  But I had to change to a non-irritating brand of mascara that comes with a funky handle.   

I kept dropping the curved top of the mascara.  This left dark stains on my rug.  I used too much carpet cleaner which left white spots (see black circle).    So I put a bandaide that has texture around the top of the mascara to give me better traction.  I have stopped dropping the mascara.

My balance is too poor for me to lean over to be close to a bathroom mirror.  Years ago I put florescent lights on the mirror over my dresser and put a mirror on my dresser.  Leaning my sound elbow on the edge of the tall dresser gives me control when applying eye make-up.  A food container keeps make-up organized.  A small round container holds vertical objects upright.  It does not fall because it is clipped to the square container with a metal binder clip (white circle) from an office supply store.

A piece of non-slip shelf liner stops eye shadow and face powder from sliding when I sweep side-to-side.  I did not know age would rob my lips of pink color.  They are now the same color as my face.  It is easy to apply lip gloss with a hint of color because I do not have to draw a precise outline like I do with lipstick.  Now I see lips on my face when I look in the mirror.
homeafterstroke.blogspot.com