December 28, 2016

Fatigue is a Deal Breaker

The fatigue I felt the first year after my stroke was unlike anything I had ever experienced.  I repeatedly felt a crushing fatigue I couldn't push through.  Using a timer to force myself to rest was annoying because the timer would go off at the worst time.  I tried to rest by watching TV, but that turned me into a zombie who couldn't stop clicking the remote because nothing good was on at the moment.  I tried reading and going on the Internet, but got so absorbed in these activities that I ended up being more tired.  When I did not rest I could barely hold my head up after dinner.

I found two strategies that work for me.  (1) Lying on top of the bedspread with a towel under my shoes and a small blanket covering me doesn't feel like I'm going back to bed.  I can lie down for fifteen minutes without having to get undressed.  (2) When I listen to a CD I can stop after a few tracks and come back to it later.  Instead of staring at the clock and resenting having to rest I enjoy the music.  Even seven years after my stroke I make sure to get enough rest when I have an outing planned for the day.  I don't want to start wishing I could go home a few minutes after I arrive.  A stroke survivor I met resents having to rest but I think preventing fatigue lets me do more rather than less.

December 23, 2016

Walking in the Dark

My love of being outside at night began when my mother decided I was old enough to sit on the front porch on cool summer evenings.  I loved watching the street lights sparkling through leaves on the trees and being a part of quiet conversations.  So when my brother suggested we see the Christmas lights at the Brookfield Zoo I was eager to go.
I did well while it was still dusk (photo on left).  When the sun went down (photo below) I had trouble seeing where vertical was.  My stroke hit the pons which is the bridge to the cerebellum where balance is controlled.  My cerebellum gets so little information from my inner ears that I need visual input to tell if I am vertical.  
As it got darker I started guessing by watching the dark outlines of people walking in front of me.  This made me lurch from side to side to correct the poor guesses I made.  This rocking motion wore me out and brought my walking to a halt.  Walking for years down well lit streets did not prepare me for the balance challenge that real darkness creates.

I am going to restrict myself to night time activities that require sitting --- like watching people skate.  I got to see children smile when their parents kept them from falling.  I got to watch funny interactions among dating couples who had unequal skating skills.  I got to look at Chicago's beautiful Michigan Avenue.  I got to breathe the crisp night air and appreciate my warm coat, mittens, and scarf.  I got to enjoy a fun evening with my brother.  I learned the hard way that walking requires problem solving as well as mobility.

December 16, 2016

Organizing My Purse is a Vital Shopping Strategy

Jupiter, Mars, Venus, and Mercury line up every 50 to 100 years.  This rare celestial event will happen before I go digging through my purse one-handed.  Organizing my purse eliminates frustration when I go shopping.  Every woman organizes her purse differently so this is not a
how-to post.  The examples are intended to help stroke survivors realize that a purse does not have to be a buzz kill.  Holiday shopping is supposed to be FUN.

My car key has its own compartment.  The green wrist coil makes it easy to retrieve quickly.  My house key is attached to a straight flexible coil that hooks on my purse.  I pull on this coil to make my house key slip out of its pocket.  I do not want to be an easy target because I am digging through my purse looking for a key.  

I can handle credit cards quickly because I keep them in a zippered compartment that holds ONLY a credit card, driver's license, ATM card, and library card.  While sitting in my car I get out the card I need and place it vertically so it stands out from the other cards that are horizontal.  Cards go back in this zippered compartment in a flash.  Less frequently used cards like my health insurance card are in another compartment.  I do not want to hear the people behind me in line moan because I am struggling with my credit cards.

December 4, 2016

Keeping My Christmas Spirit

This is a photo of the artificial Christmas tree I have put up every year since my stroke.  After I fell on my patio last October I looked for ways to reduce my risk for falling.  Denial finally faded so I could allow myself to picture what would have happened if I had broken my hip. 

I had already made myself safer by keeping furniture sliders under the lounge chair next to this window so I can move it out of my way.  This allowed me to place a folding chair next to the tree so I could sit down when decorating the bottom of the tree.  However, decorating this six foot tree is tiring.  I know 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 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.

I have held onto the decorations for my big tree so I still have options if I change my mind - probably denial still at work.

November 29, 2016

Mrs. Bobath was wrong - hand use comes from my gut

I was dismayed that my NDT certification course did not teach me hand function comes from my gut.  I learned this when a PT had me do abdominal exercises after my back spasms returned.
I was surprised to feel abdominal muscles on my paralyzed side burning from effort.  My ability to reach improved after my abdominals got stronger. 

When you reach for an object (shoulder flexion) the shoulder blade (scapula) helps the arm by sliding forward.  Scapular muscles are attached to the ribs so if weak abdominal muscles do not keep the ribs still, the scapular muscles have a wobbly home base. Having weak stomach muscles meant my shoulder and elbow muscles were overworked when scapular muscles could not do their job.  I repeatedly got tendonitis in the long head of the biceps because this elbow muscle assisted weak shoulder muscles.  My biceps tendon used to swell so badly that it made a popping sound when it slipped out of its groove.  Exercise sessions had to end with ice to reduce the swelling.

I wonder how much faster I would have progressed if my OTs had worked on abdominal strength.  I do not blame my OTs.  As an NDT certified OT I do not know of a motor theory that links hand function to core muscles.  However, athletes like weight lifters and javelin throwers who need superior arm strength know how important abdominal strength is to upper extremity performance.  Stroke survivors exert this same kind of extreme effort when they lift their arm with paralyzed muscles.  Don't believe me?  Therapists use two hands to lift a paralyzed arm.  Even they are challenged when lifting all that dead weight.

November 24, 2016

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 two sets of ten 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.  I open my hand to let go of the cart so my sound hand can 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!

November 18, 2016

Caregivers Readiness

Forty caregivers of stroke survivors reported they often felt abandoned (1).  This may sound surprising unless you understand that each round of therapists has to do initial evaluations of the client.  This does not leave much time for talking to the caregiver.  This lack of communication is a problem.  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)." 

This article reminded me that I was clueless when I was an OT.  It took having a stroke to teach me that caregivers are pummeled by a quadruple whammy.  They have to: 1) do the chores they have always done, 2) take on their partner's role, 3) be a therapist, and 4) be a case manager.  A wife may take out the garbage, take the car to have the oil changed, and change the batteries in the smoke detectors.  A husband may do laundry, cook, and go grocery shopping.  When they are therapists, caregivers may help with self-care like bathing, set up and supervise home exercises, and deal with a stroke survivor's bad moods.  As a case manager, caregivers have to schedule multiple doctor appointments, deal with insurance companies, and make multiple trips to the drug store to pick-up multiple drugs.  Many caregivers do this without professional psychological support or respite care.  Now I see caregivers as angels. 

(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.

November 8, 2016

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 learned to jack up the flavor of food with aromatics like onions and garlic.  Peeling garlic is a challenge even for able-bodied people.  I use the smooth side of meat pounder to smash the garlic open so I can remove the peel with
my sound hand.  This means my days of creating beautiful, thinly sliced garlic are over.  

I chop 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 hemiplegic hand so my sound hand can scoop up chopped food and slide it into a mixing bowl or pot.  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 garlic crusher on my cart and put my sound hand on the top arm.  Leaning on the top arm lets me press down with the strength of my whole arm.  I catch pieces of falling garlic by putting a piece of saran wrap** under the garlic crusher.  To get garlic clinging to the crusher into a bowl or pan, I place the crusher in my hemiplegic hand so my sound hand can use a knife to scrape off the garlic. 

Cleaning a garlic crusher is easy if it has a plastic grid that pushes the remnants out of the holes. I hold one arm of the garlic crusher in my hemiplegic hand and stabilize the 2nd arm against my stomach. Then my sound hand can use the tip of the knife to dig out remnants so they fall on the saran wrap.  I fold the saran wrap and put it in the garbage.

** To see how I tear off a sheet of saran wrap with one hand
click on this post.

October 31, 2016

Brain Plasticity Will Blow Your Mind

New research on brain plasticity will blow your mind.  One amazing finding is that new stem cells are produced in the lateral ventricles of the adult brain (1).  What is even more amazing is how these stem cells migrate from the back of the brain to the olfactory bulb in the front of the brain (2).  Using time lapse imaging scientists have been able to watch stem cells latch onto a blood vessel highway and drag themselves to their destination.  First, brain chemicals push stem cells away from their birth place.  Additional chemicals stop the stem cells from getting off track along the way.  As the cells approach their destination more chemicals pull them in the right direction.  

Equally amazing is that new stem cells are produced in the hippocampus that is responsible for short-term memory (2).  Since learning is life-long, it is hard to believe that neuroscientists used to believe that remembering everything we learn can be crammed into the memory cells we were born with.  The adult brain grows thousands of new stem cells in the hippocampus every day (3).  Diffusion tensor imaging allowed scientists to see significant microstructure changes in the hippocampus after just two hours of training (4).

New technology confirms that nerve cells can sprout new branches.  For example, Marshall saw cortical regeneration for finger-thumb opposition (5).  A youtube video shows a neurite advancing towards other nerve cells and retreating.  New growth is called a neurite until it differentiates into an axon or a dentrite (6).  Researchers are still learning which chemicals support or hinder the neurogenesis seen in the video.  But they know that only repeated training makes new branches cluster together so they work efficiently as a group (7).  

I want to pull my hair out every time I hear someone say "The doctor told me there is a 6 month window for recovery after a stroke."

October 27, 2016

Researchers Dismiss Treatment If They Use the Wrong Outcome

I cannot die in peace until hand recovery is evaluated with tests that have a good basement.  Good basements detect changes before substantial recovery appears.  Researchers may find no significant improvement after treatment even though subjects report using their hemiplegic hand more at home.  When subjects report they use the hemiplegic hand to shower, it has been called subjective data.  Why is there a discrepancy between formal hand tests and subject report?  Do researchers find a lack of progress because they provided poor treatment or because they used tests loaded with difficult test items that were not a good match for the subjects they recruited?  The table below compares the Arm Motor Ability Test (AMAT) and the Test of Early Bilateral Hand Use (TEBHU).  The AMAT has many high level skills while the TEBHU (1) has five levels of hand use.  My hemiplegic hand cannot do any of the AMAT items listed below but it makes me independent during over 100 bimanual ADLs.  Not fair!
           AMAT                                      TEBHU
Finger mobility                                  Finger mobility                        
    Cut with knife                                    Cut with knife                        
    Button                                                Button                                    
    Draw line with pen & ruler                 Tie shoelaces                         
    Dial phone                                         
    Squeeze toothpaste on brush
    Wipe eyeglasses                                  
Wrist/forearm mobility                    Wrist/forearm mobility              
    Unscrew jar lid                                 Peel carrot
    Comb hair                                        Stir pot
    Scoop up beans                               Zip coat
    Turn door knob
    Take sandwich to mouth
    Take phone to ear

                                                         Reach for object and hold it still*
                                                              Reach for and hold carrot while sound hand peels   
                                                              Reach for and hold pot handle while sound hand stirs
                                                              Reach for/hold scraper while sound hand rakes up food

                                                         Hand-to-hand transfer and hold object still*
                                                              Put deodorant in hemi hand so sound hand can remove cap
                                                              Put t. paste tube in hemi hand so s. hand can remove cap
                                                              Put remote in hemi hand & carry so s. hand can use cane
                                                         Trap object on surface and hold it still*
                                                              Trap toilet paper on thigh so sound hand can tear paper    
                                                              Trap return stub for bill on table so s. hand can tear off stub
                                                              Trap envelope on table so s. hand can tear open envelop

*When I was able-bodied I did not know I used both hands for hundreds of tasks.  Many bimanual tasks are so brief or simple that they fall below the awareness of people who design hand evaluations.

1. Dutton R. My Last Degree: A Therapist Goes Home After a Stroke, 2nd ed. Bangor, Maine:
    Booklocker; 2013:55-65.

October 15, 2016

Why Should People Care What I Do?

People need to know why they should care about what I do.  So I do not start by talking about how to put on a bra with one hand.  First I write about clothes that do not fit because at my age my breasts are closer to my waist than I ever thought possible.  I write about how I would feel about saying "I'd love to come to dinner if you hook my bra when I get there."  I live alone so donning a bra enhances my social life.  Describing how a problem affects my life reveals what motivates me.

Having a stroke taught me why therapists and clients have a different point of view.  Therapists must write goals for Activities of Daily Living (ADLs) because this is how they get insurance companies to pay for our care.  They must also think about deficits because how they treat one deficit, like muscle weakness, is different from how they treat another deficit, like visual neglect.  As a stroke survivor, improving dressing skills and grip strength are methods not goals.  

Therapists need to link functional goals to personal anchors.  An anchor is anything people want so much that they are willing to work hard to get it and keep it.  For example, "don pants so you can sit on the patio and feel the sun on your face" links a mundane ADL to a valued activity for a client who has been kept inside for three months.  Clients should tell OTs what they really want and stop worrying it may sound trivial to an able-bodied person who can take things for granted.  For me OT's motto of Living Life to Its Fullest means turning "I should" into "I want to."

October 3, 2016

OT Reduces Hospital Re-admissions

The IMPACT Act was designed to improve healthcare by linking Medicare reimbursement to valuable outcomes.  Currently, value is crudely defined by outcomes that can be measured across multiple settings with many different medical conditions.  A basic outcome is the number of clients readmitted to the hospital within 30 days of discharge.  Medicare has begun to financially penalize hospitals with higher-than-average readmissions rates.  Hospital CEOs are very interested in finding out how to prevent these penalties.

Rogers and associates looked at what reduced hospital readmission in 7,174 people over 65 with pneumonia, heart failure, or a heart attack (1).  PT did not reduce readmissions for the three conditions.  An acute illness does not warrant a long hospital stay, but elderly people are often at greater risk because they more likely to have poor strength and endurance.  A short course of PT may not be enough to reverse physical deconditioning.  In addition, PTs are not trained to address the cognitive issues that some elderly clients have which makes it harder for them to follow medical instructions after they are discharged.

However, the study found that OT was associated with fewer readmissions in all three conditions.
OTs evaluate both physical and cognitive skills and can assess the match between a client's abilities, social resources, and physical environment at home.  OTs can recommend solutions when there is a mismatch between abilities and resources BEFORE the client goes home.  For example, there may be a need to train the caregiver or reduce fall hazards by installing grab rails.  The easiest way to quickly grasp an OT's ability to positively affect hospital readmission rates is to read a case study (2).

My Conclusions.
1.  These findings apply only to clients with pneumonia, heart failure, or a heart attack.
2.  Lowering costs is of value to hospitals but what about valued outcomes for the clients?
3.  This is a good start towards using value as a guideline for giving the healthcare system
     financial incentives to produce better results.

1. Rogers A, Bai G, Lavin R, Anderson G.  Higher hospital spending on occupational therapy is
    associated with lower readmission rates. Medical Care Research and Review. 2016;1-19.
2. Renda M, Lee S, Keglovits M, Somerville E. The role of occupational therapy in reducing
    hospital admissions. OT Practice. 2016:August: CE5-CE6.

September 30, 2016

Braces Can Create a Leg Length Discrepancy

I acquired a leg length discrepancy from a brace so I was not surprised that a study found shoe inserts improved stroke survivors' gait.  Here is what Mohapatra and his associates found (1).  Eleven stroke survivors were given two weeks of PT, but people in the experimental group were also given a shoe insert for the sound leg.  The insert added height to the sound leg just as the brace did for the affected leg..  After two weeks the group who had shoe inserts walked significantly faster.  Their weight bearing was also more symmetrical.  

Every PT is taught how to check for leg length discrepancy.         Yet my in-patient PT did not check my leg length after I got my brace.  A simple way to check is to put your thumbs on the         two hip bone that stick out in front (anterior superior iliac spine) and look to see if your two thumbs are level.  If one leg is longer, one thumb will be higher. 

Three years after my stroke I saw a PT who was trained in myofascial release which addresses good body alignment.  Tracy put her thumbs on my hip bones and told me to buy a shoe insert at the store where I buy orthopedic shoes.  I could feel a difference the moment I stood up with shoe insert under my sound foot. Stroke survivors should be evaluated for leg length discrepancy after they get a brace and taught about shoe inserts so we know what to do the next time we buy a new pair of shoes.

Spenco shoe inserts come in four different shoe sizes in full versus 3/4 length and thick versus thin.  A shoe insert can be a low tech, relatively cheap way (e.g. $30) to improve gait.

1.  Mohapatra, S., Eviota, A., Ringquist, K., Muthukrishnan, S., & Aruin, A. Compelled body weight shift technique to facilitate rehabilitation of individuals with acute stroke. International Scholarly Research Network. ISRN Rehabilitation Volume. 2012;  article ID 328018:7 pages.       

September 27, 2016

Bathing Does Not Have to Be Exhausting

As an OT I had my clients practice a single ADL skill in isolation, but I never watched a client do a whole morning routine.  I did not know how tiring bathing, grooming, and dressing can be until I did all of them one after the other as a stroke survivor.  Self-care is not supposed to be so exhausting that all I can do is watch TV and become a zombie who cannot stop clicking the TV remote. 

I want to be independent so I can close the shower curtain and take as much time as I want to enjoy the feeling of warm water cascading over my body while I sit on my shower chair.  I want to leave the shower feeling refreshed - not exhausted and frustrated.

Washing.  Using shower gel and a nylon poof means I do not have to struggle one-handed to soap up a washcloth or chase a bar of soap after I drop it.  I pour shower gel on the nylon poof and knead it a few times to get it soapy.  To wash my sound arm I need only a gross grasp to hold the nylon poof.  Instead of struggling to wring out a washcloth one-handed I hang the nylon poof on a suction hook and hose it down the way you rinse a car and then let it air dry.  I use shampoo suds to wash my face
OT helped me regain the ability to open my hemiplegic hand and use a gross grasp to hold the head of the shower hose close to my crotch.  This leaves my sound hand free to deal with the nooks and crannies that running water does not reach.  Even if my husband were still alive I would want to bathe this private part of my body myself.  It may look like a pathetic amount of hand function to an able-bodied person, but it keeps me from feeling embarrassed which is priceless.

Drying.  My towel rack is close enough to the shower that I can reach it while sitting on my shower chair.  I drape the towel over one shoulder to dry my arms and trunk.  After I get out of the shower I don a terrycloth bathrobe which dries my buttocks and thighs.  This means I do not have to twist around to dry these hard-to-reach places.  While standing I dry my crotch with the towel draped over my shoulder.  It is easier for my sound hand to manipulate the free end when it does not have to deal with the full weight of the towel.  Keeping the towel draped over my shoulder makes it easy to put the towel on the towel rack.  Letting my calves air dry while I brush my teeth means I do not have to huff and puff while holding up my leg to dry it.  In the summer when evaporation is not as effective, I air dry my calves while lying on the bed and listening to music.  I put a towel under my calves to keep my bedspread from getting wet.

September 1, 2016

The Non-Dominant Hand Cries Out

The non-dominant hand cries out to be recognized as a full partner.  Unlike leg movements that often do the same motion (e.g. walking), the two hands have different roles.  I had to have a stroke to learn what a non-dominant hand does all day.  Adaptive devices like rocker knives draw a veil over the staggering number of times we use our non-dominant hand.  If you want to know what your non-dominant hand is doing when it is not texting read the list below.  DH = dominant hand.

        Hold shampoo bottle, toothpaste tube, and deodorant bottle so DH can open them
        Hold hair dryer so DH can run a brush through hair to style it
        Hold waistband of pants so DH can help pull pants up, zip, and put belt through belt loops
        Hold fork in meat so DH can maneuver knife to cut it
        Hold bottle of water or soda can so DH can open it
        Hold bottom of jacket or coat so DH can zip it
        Hold every bottle of medicine you have so DH can open them
        Hold objects you are carrying so DH can turn door knob to open a door

        Open refrigerator door so DH can put food in and take food out
        Hold milk container so DH can take cap off
        Hold pots, pans, and mixing bowls still so DH can stir the food
        Hold one handle of baking dish as DH holds other handle to place dish in oven
        Hold bottles of olive oil, soy sauce, vinegar, etc. so DH can take off caps
        Hold spice jars so DH can remove lids
        Hold banana, cucumber, carrot, and other food you want the DH to peel
        Hold onion, garlic, cilantro, and other food you want DH to chop
        Hold zip-lock bag and other food storage containers so SH can open them
        Hold folded-over edge of frozen food bag so DH can put on a food clip

I need two hands to open purchases that range from make-up to meat. People who can't use their hemiplegic hand resort to what I call the "Honey do" strategy.  Stroke survivors who are one-handed experience task disruption every time they get to the step in a task that requires two hands.

      Hold cord out of the way so you won't trip when DH uses the vacuum cleaner
      Hold lint trap of clothes dryer so DH can clean it
      Hold up shirt, pants, dress, etc. so DH can put clothes on hangers
      Hold corner of clean piece of laundry so DH can fold it

Pay Bills
        Hold wallet open so DH can take out money to pay cashier
        Hold envelope so DH can pull bill out and put return slip into the envelope
        Hold checkbook register open so DH can write check information
        Hold sheet of return stamps so DH can remove stamps and put them on envelope
        Hold several sheets of a bill in a neat stack so DH can staple them together
        Hold file folder open so DH can file away paid bills

August 31, 2016

Cooking is Therapy for My Hand

Cooking is good 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.

I am not the only one who thinks cooking is good therapy for the hand.  OTs at Samuel Merritt University developed a treatment program for stroke survivors that includes preparing lunch and cleaning up the kitchen (1).  The group that was helped to use both hands during cooking activities used their hemiplegic hand more often at home than the group who received constraint-induced therapy.  Cognitive research shows that transferring skills to a new setting is more likely to happen when the practice task closely resembles the target task.

The photo shows me holding a Cuisinart container with one hand while the other 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.  

The photo gives you an idea of how many times I had to sit down to squeeze jars and bottles between my thighs to remove the cap when my hemiplegic hand was flaccid.  Now I reach out and hold the container still with my hemiplegic hand while my sound hand turns the lid.   

A stroke taught me many Activities of Daily Living (ADLs) use a palmar grasp which is holding an object with the sides of the fingers.  In the photo my fingertips are not in contact with the object or with each other.  Why wait to use your hand until tip pinch emerges when a palmar grasp allows able-bodied adults to do many ADLs that need to be done thousands of times?

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),

August 25, 2016

How I Learned to Turn My Head While Walking

I was able to look straight forward while I was in rehab because my PT had me walk in wide uncluttered spaces.  When I went home I learned that if I turned my head while walking outdoors, I stumbled or drifted in the direction my head was turned.  But I want to turn my head to look at a store window or talk to the person walking next to me.

Being afraid to look around while walking made me hold my head still.  This made my neck stiff.
I conquered each problem with its own strategy.  1) Every morning I slowly and gently move my head in circles while sitting.  This loosens my neck muscles while eliminating the possibility that I will fall.  2) I forced myself to look in store windows when I walk.  I began by turning my head for one second.  As I repeatedly turned my head to look at window displays my brain began to process this movement without losing the ability to monitor if I was drifting to the side.  These two strategies have eliminated the icky feeling I used to get when I turned my head while walking.  I will use them until I die because they allow me to participate in fun activities - window shopping and socializing while walking without slamming into friends and family.

Mirelman and associates confirmed the relationship between mobility and cognition (1).  Older adults with a history of falls had significantly fewer falls six months after walking with virtual reality feedback that added a cognitive component.  While walking on a treadmill, experimental subjects could see their foot movements projected on a screen as they responded to simulated obstacles, distractors, and multiple pathways.  Control subjects who just walked on a treadmill for an equal amount of time did not experience a decrease in falls.  The awareness of and ability to respond to environmental challenges is an important part of being able to walk safely.

1.  Mirelman A, Rochester L, Maidan I, et al. Addition of a non-invasive virtual reality component to
     treadmill training to reduce fall risk in older adults (V-TIME): a randomized controlled trial.

August 4, 2016

Solutions for My Extreme Sleep Deprivation

I have had insomnia off and on all my life, but my stroke brought this problem to a new level.  I had a stroke in the brainstem which contains the reticular formation that puts us to sleep and wakes us up. Since my stroke I have repeatedly had nights where I get only two hours of sleep per night.  In February I did not sleep for two days.  What FREAKED ME OUT was that I did not feel sleepy for
2 days so I got aggressive about addressing this problem.  If you want to read about what sleep deprivation does to your brain read Dean's posts.

Daytime routine.  I avoid caffeine after 10 in the morning and exercising and eating late at night.

Bedroom environment.  I sleep in a dark bedroom with no TV.  The alarm clock is placed where I cannot see it.  Sometimes I wake up and find I am sweating.  After my February freak out I lowered the room temperature because a lower body temperature tells the brain to sleep. 

Preparing for bed.  If I am sleepy at 10 p.m. I go to bed.  If I wake up in the middle of the night at least I have slept for 4 or 5 hours because I went to bed early.  If I am still wide awake at 10 p.m. I go to war. (1) I turn off the TV, wash my face and brush my teeth, and come back to the living room to listen to a calming CD (e.g. sounds of the ocean) for as long as it takes for me to feel sleepy.
(2) While I listen to the CD I assess my body.  If my knee hurts I take Tylenol.  If the constant burning in my foot bothers me I provide a competing sensation by taking a warm gel pack to bed. 

Back up plans.  (1) If I lay in bed and cannot fall asleep, I get up and eat a banana.  Bananas have tryptophan that helps the body make the melatonin that makes us sleepy.  This strategy works only when I realize how long I have been lying awake AND I have the fortitude to get out of bed. 
(2) If I wake up at 3 a.m. to go to the bathroom I do not wait to see if I will fall asleep again.
Before I get back into bed I start a calming CD at a low volume or turn on a fan for a low
background noise. This often helps me fall asleep again.

July 25, 2016

Fixing Cars and Smart Phones is Easy

Can you imagine auto mechanics trying to fix cars if every car has a slightly different electrical system?  Can you imagine Steve Jobs telling his staff to create a code that is slightly different for every iphone?  Yet millions of years of evolution has done this to the human brain.  The brain anatomy that is taught in schools is a general map - not a blue print for your brain.  Functional connectivity magnetic resonance imaging (fcMRI) can tell us which circuits are used during a task on a particular day, but the brain rewires itself in response to demands.  For example, the brain initially divides a complex task into small actions.  But with repetition, individual actions are rewired into groups that are implemented more efficiently than thinking about each step separately.
Brain plasticity is like cars and phones that rewire themselves after they leave the factory.

I had to decide how to deal with the current uncertainty in stroke rehab.  What has helped me recover is to stop asking how much recovery I will eventually get.  Focusing on short-term goals has been more helpful.  Therapists are required to write short-term goals that are individualized for each client, but do not share them.  Ask about the short-term goals your team is working on. 

However, setting short-term goals does not go far enough.  Therapists need to show stroke survivors how small gains can improve their lives.  As soon as I make a small gain, I try to discover what I can do with it at home and in the community.  Then I tell my therapist about what worked.
I have even brought materials from home to demonstrate what I can do with a new rehab gain. 
I NEVER WAIT until after I am discharged to begin asking what I am getting from therapy. 

Doctors and therapists would stop saying "all strokes are different" if they knew how it feels to be on the receiving end of this statement.  It sounds like an excuse that closes down a discussion of what is possible.  Individual differences in the way brains are wired and the varied location and size of strokes make it difficult for rehab professionals to tell stroke survivors what will happen in the long run, but therapists can talk about what they think is possible now.

July 15, 2016

11 Things I Must Do to Drive Independently

This post illustrates that recovery after a stroke is a series of challenges that go on and on.

Regaining independence in driving took more than having an OT teach me how to drive with
one hand and foot.  If you cannot do tasks 1-8, you need stand-by assistance every time you drive.

Keys.  (1) Click on Getting out keys for my house and car to see why this is harder than it sounds.

Exiting.  (2) It takes multiple strategies to get out of my house without falling.  I begin by opening the door and placing my cane on the porch so my sound hand is free to close and lock the door.  I come back inside and check my balance before I take a step backwards over a one inch high strip (see arrows on right).  This fall hazard is weather stripping that keeps air from getting under the door.
Finally, I have to hold the screen door open while I close the front door.  The photo on the right shows a shallow ledge at the bottom of the screen door.  I have to keep the heel of my hemiplegic foot from getting stuck on that ledge as I step down onto my porch.  Initially I used my butt to hold the screen door open because it is a heavy wheelchair-width door.  But I dented the screen so now I push against the storm window which I keep down all year.  People who hold the front door open are not preparing stroke survivors for the day we need to walk out the door by ourselves.

Safety. (3) The seatbelt was always twisted when I used my left hand to push it across my chest.  I learned I have to make sure the seat belt is completely straight when I pull it out.  Right handed drivers have the unfair advantage of being able to pull the strap across their chest.

Starting the car.  (4) My left arm is my sound arm so I have to lean over to see the slot for the key to the right of the steering wheel.  I pull the key out through the steering wheel (see pink wrist band) because this does not require the precise placement that inserting the key demands.

Parking.  (5) Stores may have pull-in parking, but I have to parallel park on the street where I live.
I am glad my OT set up traffic cones and let me repeatedly practice parallel parking.
(6) The spinner knob I use to control the steering wheel is made of a plastic that gets hotter than a regular steering wheel.  I cannot drive if I burn my sound hand so I am glad I found sunshades that I can put up in 10 seconds with one hand to cover the windshield.

Winter Issues.  Before I leave my house in the winter I have to (7) zip my coat and (8) don boots.

- # 9-11 are intermittent tasks that are easier for people who want to help to fit into their schedule  -

Getting Gas.  (9) It is illegal for drivers in New Jersey and Washington state to pump their own gas.  In the other 48 states, drivers must be able to handle the gas pump.  This task begins with getting out a credit card (see photo #2) and opening the gas cap on your car.  I have driven in
15 states since my stroke so I know the procedures for using the gas pump vary considerably.
I make sure I get a pump that is in the shade so sun glare will not obscure the instructions that light up.  This task requires good balance while turning repeatedly

Car Maintenance.  (10) A dirty windshield obscures my vision, especially at night.  Cleaning the gunk that accumulates on the inside of the windshield is difficult one-handed.  A reacher called the Invisible Glass Cleaner allows me to clean all the way down to the dashboard.  It costs $15 but cleans much better than the Handy EZ Windshield Wiper. 

(11) Before a mechanic works on my car he shoves the car seat back because I have short legs.  Before I drive away I grab the steering wheel with my hemiplegic hand to pull the seat forward while my sound hand presses down on the release bar.  The photo shows a gross grasp, but it is a skill I need to be independent in car maintenance.

July 6, 2016

The Only Magic Bullet I've Found

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.  When I hear my hemiplegic foot scuffing the floor because I am not lifting my leg high enough I start silently saying "knee up, knee up."  If someone is talking to me at that moment I do not hear what that person is saying.  I cannot listen to someone while I am talking myself through a task that able-bodied people do without any thought.  For a stroke survivor multitasking can be walking and talking at the same time.
After twelve years of living with a stroke the only magic bullet I have found is to stop multitasking.  If you want me to process new information or I want to participate in a discussion, I need to sit down.  Eliminating multitasking is a magic bullet because it has an immediate effect.  By not dividing my attention, I can focus all my energy on the part of my brain I need right now.  

I do not feel bad about not multitasking. This strategy keeps me safe and improves my performance. When I take a hot dish out of the the oven I stop talking to guests.  I need to make sure my hemiplegic (paralyzed) hand 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 takes many repetitions before a task becomes so automatic that I can pay attention to a second task.  After a month of winter I can zip my coat  AND  talk to friends as we get up to leave a restaurant.

July 1, 2016

Is It Rehearal or Exercise? - Labels Matter

The labels we use can affect our behavior.  The word rehearsal implies I am getting ready to do something I want.  The word rehearsal stops me from feeling like I am exercising for no good reason.  Here are three examples.  (1) I live alone so I warm up my voice before I make the first telephone call of the day.  I sing the alphabet song and practice saying letters that are hard for me like the letter  "s."  (2) I stretch my ankle every morning as soon as I get out of bed.  This makes it easier to don my leg brace and walk to the kitchen for breakfast.

(3) It is hard to open my hand in the morning.  My hand does not always open far enough to grasp the deodorant bottle.  In sitting I rehearse opening my hand while pressing the back of my hand on the bed with my wrist fully bent.  Then it is easier for my hand to open to grasp the deodorant bottle so my sound hand can take the cap off.

June 30, 2016

Happiness is Biochemical

"Your brain is like Velcro for negative experiences and like Teflon for positive ones," says Rick Hanson (1, p. 41).  When we briefly notice positive experiences they slip away the way a fried egg slides out of a Teflon-coated pan.  However, the stone age brain we inherited is wired to quickly store negative experiences that may be threats.  A brain scan study found a part of the brain called the amygdala was activated faster when people saw fearful faces than when they saw neutral or happy faces (2).  Twenty-four hors later, subjects remembered more fearful faces than neutral or happy faces when shown the photos again.  When information is tagged as negative the amygdala tells the brain to immediately send that information to long-term memory (1).  

My goal for being happier is NOT to turn into a bubbly person who does not feel angry or sad. 
My goal is to balance the good and bad.  Surprisingly being happy does not require a positive attitude.  It requires concrete action.  Meditation has a positive affect on mood (3,4), but requires disciple and time.  Here are two simpler actions can change the brain.

Take 5 seconds to enjoy a happy moment (1).  I try to notice happy events I did not plan, like the parking spot I got that was close to the entrance of a crowded grocery store the day before Christmas.  Lately I have been enjoying a shower.  Sub-freezing temperatures have finally arrived so a warm shower rehydrates my dry skin and relaxes my cold muscles.  I have been standing still for 5 seconds after I get out of the shower to enjoy this luxurious feeing.  When you are happy the brain releases dopamine which builds a more richly detailed positive memory.
For me, noticing multiple brief episodes of happiness has a cumulative effect that affects how I feel at the end of the day. 

Sleep = more happy memories.  Sleep depravation produced a 19% loss of negative information, but a 59% loss of positive information (5).  Sleep deprived subjects also recalled more negative words (e.g. cancer) than positive words 24 hours after they saw the list.  This difference occurs because of the different way these two types of information are stored.  Positive memories stay in short-term memory until a part of the brain called the hippocampus sends them to long-term memory as we sleep.   

June 25, 2016

Reheating Food Safely

Warning: Using a microwave requires safety awareness

The problem with family or friends leaving a dish for a stroke survivor to heat up in the microwave is that the thumb knocks the lid off when you pick up a dish one-handed.  Heating uncovered food in the microwave makes a mess. 

When I take a hot dish out of the microwave my sound hand is protected by a hot mitt and my hot mitt is protected by plastic wrap.  You might wonder why a stroke survivor would use plastic wrap when it gives people with two good hands a run for their money.  Before I started using plastic wrap I had to wash my hot mitts repeatedly.  The mitt would get dirty when I slid my thumb into the dish so I could get a firm grip on the edge.

Go on-line to see the  "food wrap box."  It cuts the plastic wrap in one blow when I shut the lid.  Stretching the wrap over the dish is easy too.  I place the box next to the dish.  As I pull the plastic wrap out, the weight of the dish holds the food wrap box still.

Using plastic wrap also means I do not need a food strainer.
I use a hot mitt on my sound hand to hold he dish over the sink to let the water drain out.  The arrow is pointing at a flap of plastic wrap that is open.  I did not do this.  The water did it for me.
I lose a couple of pieces of small food now and then, but keeping my sound hand safe while handling hot dishes is priceless.

June 16, 2016

Accepting that a Chronic Disease Never Goes Away Is Not Enough

I can lose what I have worked so hard for when problems become worse.  I have to decide if I am willing to go into battle or I am going to give up and let myself slip into decline.  Stopping regression requires the willingness to act again and again without having therapists around to help.  I think a problem is solved and then it's not.  Here is one example.

Several months ago my central pain suddenly became intolerable at night.  Central pain is constant pain created by damage to the brain.  Symptoms include constant burning, pain caused by normally non-painful stimuli, shooting or electric shock-like pain, muscle cramps, stinging, tingling, or a 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.

Taking Tylenol and raising the sheet off of my foot used to help 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 creates friction so it stays put and keeps the covers off the end of my big toe all night long.  When these two strategies were not enough to help me 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.

Neurologists have known about the extinction phenomenon for decades.  Two sensations can sometimes 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 which produces a mild burning sensation that cancels the awareness of muscle pain.

June 3, 2016

Adaptive Garderning After a Stroke

All anti-depressants do not come in a pill.  When I started gardening in my twenties, I discovered the joy of putting my hands in dirt and watching plants grow.  So I am very glad I found a way to garden after my stroke.  However, I do not remember the tricks I discovered last year so this spring I took photos at each stage and described ALL OF MY TRICKS.

At first I pulled plants loose from the soil when I pulled them out of their containers one-handed.  I learned to let the plants dry out a little.  The roots release more easily if the soil is dry.  The photo shows a child size spade that I slide down the sides of each container to loosen the roots.  

I use a big plastic pot that is lighter than clay and does not dry out quickly.  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, gives me something to lean the 1st row of plants against, and lets me see if I have filled the pot to the right level.  A small cup gives me good control when I fill the narrow space between the edge of the pot and the ring.  Then I arrange the flowers inside the ring, making sure the plants are touching each other so they will grow into a thick ball of foliage that prevents water evaporation.  Once I get the plants where I want them, I drop fistfuls of dirt in the small spaces between the plants.  I leave the ring in the pot until I am done.

Watering compresses the soil so the roots make good contact with the soil.  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 transfer the pot to a bench that sits next to the chair that I sit in to watch the sunset as I drink a cup coffee.  I also get to see beautiful flowers every time I come home.                            P.S. Rebecca, you only need five 4-packs.

May 26, 2016

Going to the Bathroom at Night

A friend who works with the elderly who live at home told me many of the falls she see happen when elderly people go to the bathroom at night.  To keep me safe my OT suggested that I use a bedside commode at night.   Since I live alone I think it would be dangerous for me to drag the bucket to the toilet to empty it in the morning.  My fall in the bathroom happened a few days after I got home from rehab.  The big toe on my hemiplegic foot is now crooked because I tore ligaments.  
Thank goodness I learned how to go to the bathroom safely at night when I am not wearing my brace.  After my 2nd stroke I went home with a walker which made me feel safer than a cane.  I progressed to walking with a quad cane with 4 feet during the day, but still used the walker in the bathroom at night.  I did not mind that the walker slowed me down because I was half awake when I got up at night anyway.  I progressed to a single point cane during the day, but I still used the quad cane at night to get to the bathroom.  I currently use a light single point cane during the day that I bought at a medical supply store.  This lighter cane is less tiring to carry when I walk in the community.  However, the heavier single point cane I got in rehab makes me feel safer in the bathroom at night.  I keep that heavier cane next to my bed so it is within reach as soon as I sit up on the edge of the bed.

Bottom Line: I keep every walking aid I buy so I can use the more conservative device at night. 
I do not want to have an injury that would put me in a wheelchair.  Pushing a wheelchair with one arm and one leg on linoleum in wide halls in the hospital is hard.  I do not want to find out how hard it is to push a wheelchair on carpeting in my home.  I also do not want to end up in a long-term care facility because a fall does something much worse than break a big toe.

May 17, 2016

Getting Hand Use Earlier than Stroke Survivors Think is Possible

Current hand tests begin by asking clients to pick up small objects from a table.  If hand-to-hand transfers were added to adult hand tests, stroke survivors would see that their hemiplegic (paralyzed) hand can be useful earlier than they think is possible.  After an electrical stimulation device called NeuroMove helped me regain a little finger extension, I learned that those small movements done close to the body can make a hand functional.  If you pick up an object with your sound hand and open your hemiplegic hand 2-3 inches to receive the object from your sound hand
you may be able to do the tasks shown below.  This simple skill allows me to do 18 ADL tasks.  
Example #1- Using a shower hose to spray water at the crotch does not take care of the nooks and crannies.  After a hand-to-hand transfer, my hemiplegic hand holds the shower hose close to my body which frees my sound hand to do its job.  This little bit of hand movement means my mother, a nurse's aide in the Intensive Care Unit, and I are the only people who have washed my bottom.  Having my privacy invaded in such a personal way taught me to be grateful for hand-to-hand transfers.  
Example # 2 - When my hand was flaccid, I used to squeeze a deodorant bottle between my thighs so my sound hand could remove the cap.  Now my hemiplegic hand can open to receive a deodorant bottle from my sound hand during a hand-to-hand transfer and hold the bottle still while it is resting on my thigh.  The two black lines show how little shoulder movement is needed when ADLs are done close to the body.

Example # 3 -  There used to be teeth marks on the cap of my toothpaste tube.  Now my hemiplegic hand can open to receive a tube of toothpaste from my sound hand which then removes the cap.  The end of the tube is propped against my stomach because this new tube is heavy.  I do not want to drop the tube and splatter sticky toothpaste on the floor.  I live alone so I have to clean up every mess I make.

May 1, 2016

Getting Out of the House Requires Rehearsal

Solving unexpected problems when I leave home is a buzz kill.  Now that I am a stroke survivor, community outings go much better if I check out the environment ahead of time.  If you cannot go on a trial run yourself, send a caregiver who can visualize solutions that will make your trip easier.  I am more confident and relaxed when I know I will not be startled by a nasty surprise. 

Here is an example of how rehearsal pays off.  I volunteered to sell raffle tickets for a fund raising event at my church.  I already knew how far handicapped parking is from the front door and how accessible the bathroom is.  The supplies I needed were stored downstairs where I could not get them.  I arrived early to: (1) see if there were barriers blocking access to where I would sit,
(2) give someone time to get the supplies for me, and (3) silently rehearse what I would say when people came to buy tickets.  Saying the same thing over and over made my word-finding problem disappear.  I enjoyed talking to people, ate a little food, listened to live music, and collected over $900 for my church.  Having fun and feeling useful are great antidotes to depression.

April 30, 2016

Long-handled Bath Sponges Are My Pet Peeve

Not being allowed to shower and wash my hair for two weeks after my stroke was misery I will never forget.  As an American I have always had quick access to copious amounts of clean water.  I took the pleasure of warm water streaming down my body for granted.  Showering is a simple pleasure I do not want ruined by aggravation.  Feeling clean always lifts my spirits.
Anti-depressants do not always come in the shape of a pill. 

I am sorry I ordered long-handled bath sponges for stroke survivors when I was an OT.  Long-handled sponges help clients with hip replacements wash their feet.  Having a stroke taught me this device has three flaws.  1)  Stroke survivors need a bath sponge to wash their back but choking up on the long handle was cumbersome.  I had to be careful not to stab myself in the head with the end of the handle as my hand moved up and down.  2)  The sponge is silky soft so feet will not be tickled, but I want a textured surface for the itchy places on my back.  3)  The straight handle makes it difficult to store the bath sponge which stays wet for 24 hours.  I lost track of how many times it slid off my hospital nightstand and bathroom sink. 

When I got home I ordered the Buff-Puff sponge and replacable sponge heads.  It has a short curved handle that makes it easy to hang up to dry on a suction hook.