July 22, 2017

Everyone Struggles With Acceptance

Awful circumstances force people to admit that total control is an illusion.  When this happens people get angry, sad, frustrated, etc.  You do not have to have a stroke to struggle with accepting you cannot control everything that happens to you and the people you love.

As a stroke survivor my goal is not to achieve total acceptance.  Even after 13 years there are still new challenges that make me angry or sad.  My goal is to reduce the amount of time I am angry or sad.  Here is what I try to remember when acceptance flies out the window.  Cognitive therapy says the one thing we have control over is our thoughts.  Thinking an event caused my feelings is incorrect.  When my emotional response to a situation makes me suffer, I eventually remember that how I choose to interpret what happened to me affects how I feel about it.

However, cognitive strategies are not necessary when I have a meaningful goal that gives me a sense of purpose and a list of things to do.  I am happy right now because it is a busy time for me as the Treasurer of my Home Owners Association.  I am happy because my presentation has been accepted for the Illinois Occupational Therapy Association annual convention.  I am busy working on my Power Point presentation.  This also means I can visit my family in Illinois before I go home to New Jersey.  If only acceptance of the life I have was always so easy.

July 13, 2017

Good and Bad News About Hand Recovery

I do not have a high level of hand recovery so I look for studies that do not cherry-pick high functioning stroke survivors to test the efficacy of rehab.  Many studies with positive results start with stroke survivors who already have beginning finger and thumb movement.  To decide how excited to get I look at the outcome measures as well as the statistical differences before and after treatment.  Looking at test scores is a good way to decide if research results apply to someone like you.

Franck and his associates studied stroke survivors with no spontaneous hand recovery (1).
Group 1 was taught to keep the affected arm/hand in an "optimal condition" and what to do when discomfort occurred.  Before rehab, the highest score on the Fugl-Meyer test was a 9 out of 66 which can be achieved with arm movements like reaching.  After 6 weeks of rehab for 4.5 hours per week, the highest Fugl-Meyer score was a 20 which can be achieved with NO hand or wrist movement.  After rehab, object manipulation on the Action Research Arm Test (ARAT) improved from 0 to 1 out of 57 for the highest functioning subject.  This is the bad news.

Group 2 had a very small amount of spontaneous hand recovery.  Before rehab Group 2 had ARAT scores for object manipulation ranging from 1 to 9 out of 57(1). They were given "high-intensity" therapy for 6 hours per week for 6 weeks to use their hand during functional tasks.  After rehab, the highest Fugl-Meyer score improved from 25 to 54 out of 66.  This dramatic improvement can ONLY be achieved with hand and wrist movements.  After rehab, the highest ARAT score improved from 9 to 42 out of 57.  This dramatic improvement can ONLY be achieved by gaining the ability to pick up objects like a ball.  Turning a tiny bit of spontaneous recovery into the ability to manipulate objects is the good news.

1. Franck J, Johannes R, Smeets E, Seelen H. Changes in arm-hand function and arm-hand skill
    performance in patients after stroke during and after rehabilitation. PLOS One. 6/21/2017.
    doi.org/10.11371/journal.pone.0179453

July 6, 2017

Garbage Never Stops Being a Challenge

Bottom-Line: I live alone so paying an assisted living facility $5,000 a month is a very expensive way to get someone to handle my garbage.

As my 1st post on garbage explains, managing garbage after a stroke is a challenge.  Replacing the cracked garbage can I keep in my kitchen has taken a lot of thought.  I cannot buy a garbage can that opens by stepping on a pedal.  This mechanism requires the ability to slowly step on the pedal so the lid will not fling open.  My balance is not good enough to do this.  I do not want a garbage can with a lid that swings opens or springs open when you touch the top of the lid.
They have smaller openings whose edges can get spattered with food.

One step-on model made by Hefty has a lid that hangs over the rim (see arrows in photo on left).  This lets me lift the lid with the back of my hemiplegic wrist (see photo on right).  This leaves my sound hand free to carefully dump the garbage.

There are 3 things I do not like about this new can.
1.  I can lift the lid from only one side. With my old can I could lift the lid from both sides or the front.
2.  The removable garbage can liner is a much tighter fit to get around the rim (see white plastic). This mismatch is ironic because the liner is made for this size can and the garbage can and liner are made by the same manufacturer (Hefty).  3.  I do not like the black color.  My old garbage can was a light green which matched my kitchen decor.

June 29, 2017

Writing Aids I Cannot Live Without

The long boring weekends in the rehab hospital drove me crazy.  When Kathy, 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 keep a small piece of clear Dycem in my purse (see arrow) to hold credit card slips still when I sign them.  As you can see, this dirty piece of Dycem is well used.  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.                                                                                                                                                                                                                                   When I eat at restaurants that have tables with slippery surfaces this small piece of clear Dycem stops my plate from sliding as I cut food.  I appreciate not having to whip out a big brightly colored Dycem placemat to announce to everyone in the restaurant that I am disabled.

June 20, 2017

Reviewing Virtual Reality Rehab

Between September 2011 and May 2017 Dean published 173 posts about the use of virtual reality to provide rehab for stroke survivors.  The results for the hand are depressing.  For six years research focused on a subject's ability to touch an object on the screen so the computer can move the object or make it disappear.  Enjoying these quick reactions is not enough to justify the cost of this expensive equipment.  It was a good place to start 6 years ago, but stroke survivors want to manipulate objects with their hand.

There is a glimmer of hope.  Gauthier (1) used video games that make stroke survivors do more than use their shoulder and elbow to reach forward and side to side.  These games require forearm and wrist motions.  This may not sound exciting but these motions orient our hand to the many different positions objects rest in. The photo shows the forearm is halfway between palm up and palm down so the hand can pick up a glass.  Cocking the wrist means the rim of the glass is not pointed at the ceiling but at the person's mouth.

Unfortunately, Gauthier selected stroke survivors who already had a few degrees of active forearm and wrist movement.  How can subjects make the leap from just reaching to turning their hand palm up to catch a parachute on a video screen?  My OT gave me exercises that helped me regain forearm and wrist motions.  These small motions make me more independent.  For example, I can turn my hand halfway between palm up and palm down to grab my cane so my sound hand can catch the door before the person in front of me lets it slam shut.  I picture stroke survivors practicing forearm and wrist motions and then immediately trying to turn their hand palm up so they can turn over a card on the computer screen.
Fun + lots of repetition is good.
1. Gauthier L, et al. Video game rehabilitation for outpatient stroke (VIGoROUS): protocol for a multi-center comparative effectiveness trial of in-home gamified constraint-induced movement therapy for rehabilitation of chronic upper extremity hemiparesis. BMC Neurology. 2017;17-109. doi:10.1186/s12883-017-0888-0.

June 11, 2017

A Great Why Deserves a Great How

I love a TV commercial where a father stands outside a gym after a basketball game and says he missed his son's winning shot because he was outside smoking a cigarette.  He decides to wear a skin patch to stop smoking.  The slogan for this TV ad is "a great why deserves a great how."
This commercial reminded me that the how-tos I know as an OT are not enough to be successful.

As the fear of being home-bound faded over 13 years of living with a stroke my walking endurance declined.  However, I live alone and cannot fold a wheelchair or lift it into the trunk of my car.  So I tried to improve by setting a goal of a specific number of steps on my pedometer.  I was frustrated when my data showed I walked less after I set this goal.  When my iphone played an annoying sound I turned it off and thought "I will walk tomorrow."  Then I remembered the calf muscle pump.

The heart is not strong enough to pump the blood out of the legs.  Blood pooling in the legs can form a blood clot which can break off and go to the brain to cause a stroke.  This made me think about what is happening when I sit at the computer, etc.  However, when calf muscles contract they squeeze the veins which helps push the blood upwards (see diagram below).  Between heart beats when the heart rests blood drops down inside the veins, but valves snap shut and blood is trapped at higher and higher levels.  This repeats until all the blood in the legs goes back to the heart.

I have met or exceeded my walking target every day for three weeks.  Having a concrete image of what is happening in my legs right this minute is the great why I needed to change my behavior.

Image result for image of calf muscle pump

June 3, 2017

Review of Paratransit

Clients do not know if they can use paratransit without knowing the demands of a system.  Here is a comparison of two systems I used.  One service covers the state of New Jersey and the other covers my county.  I needed paratransit because trips must be made repeatedly to stay at home - bank, grocery store, drug store, doctor, dentist, out-patient therapy, post office, clothing store, etc.  Paratransit kept me out of long-term care until I regained the ability to drive.

Language.  To qualify for the county service I had to give my address and diagnosis during a phone conversation.  The state required a one hour in-person interview where I had to explain why I could not take public transportation.  For example, my balance is poor so I would fall if I was standing when the vehicle started moving.  When making a reservation, both systems required me to tell them what ambulatory device I used so they knew what type of vehicle to send.

Planning Ahead.  For the county a reservation had to be made 2 weeks in advance and they asked only for my name.  For the state a reservation had to be made 24 hours in advance and they asked for my paratransit identification number.  To remember the pick-up times for a trip I wrote them on a calendar that sat on the table where I ate breakfast.  The county required only the name of the store because the person making the reservation was local and knew the area.  The state required exact addresses and names of cross streets because the person making the reservation was miles away.  I got out a list of these destination details 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.

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 small supply of one dollar bills and coins.

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

Time Management.  The county service picked me up close to the time of my reservation.  The state picked me up within 40 minutes of the time I requested.  I had to plan an extra 80 minutes into every trip in case I had to wait the maximum time at both ends of my trip.

Endurance.  The county sent a vehicle to my neighborhood to take people over 65 to the senior center.  That meant I had a short 2 mile ride with the seniors before I was dropped off at the grocery store.  The state runs long trips with multiple 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.  Even more tiring was the 40 minutes I might have to stand before I was picked up at the store. 
I had to be at the door so I could see the vehicle which waited 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.

Balance.  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.

Bottom-Line.  Different paratransit services require different physical and cognitive skills. 
A generic test like the Transportation Skills Assessment Tool is not enough to assess a good person-environment fit.

May 29, 2017

Some People Feel Compelled to Help

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 this quickly because they know it is inappropriate 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.

I have yet to convince people they cannot tie my shoelaces. 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 point and say "Can you tie a shoelace that has only one free end?"  
P.S.  The strategy above works.  Able-bodied people no longer get upset when I will not let them help me tie my shoe.

May 22, 2017

Surgery is Dangerous for Me

Since knee surgery my standing balance is worse.  I have repeatedly stumbled backwards because I cannot feel when I am leaning too far behind vertical.  Losing my balance was the first symptom of my two brainstem strokes.
My strokes were caused by narrowing of the vertebral artery that supplies blood to the pons.  The pons in the brainstem is the bridge to the cerebellum which controls balance.

There is a chance that bending my neck back to put a breathing tube down my throat during surgery put a kink in the vertebral artery in my neck.  If a 15 minute meniscal repair surgery impaired my balance, I do not want to see what happens after a longer knee replacement surgery.   

Bottom-Line: I am serious about the exercises I got from my latest PT.

May 13, 2017

Rolling Discharge While I am Still in Therapy

When I am in therapy I do a rolling discharge.  I never wait until I am discharged to start doing exercises at home because there are often problems transferring exercises to a new environment.

The 1st challenge is modifying how I exercise at home because I do not have the right equipment.  For example, my PT had me lie on my stomach on an 8 foot wide mat table and bend my knee.    I need strong knee flexors to stop the joint-damaging SNAP my knee makes when I straighten it to swing my leg forward to take a step.  However, my single bed at home is narrow.  I tried lying on my back close to one edge, rolling onto my stomach which moves me to the other edge, and carefully inching my way back to the center by pushing with my elbows.  This was scary and stressful for my hemiplegic arm.
My soft bed also does not provide a firm surface to push off of.  I tried folding a yoga mat to create a firmer surface under my belly, but it was a nightmare to position with one hand.

The 2nd challenge is establishing a consistent routine that saves me from muscle atrophy after I  worked so hard in therapy.  A reliable memory aid helps me follow through on my good intentions.  I reach under the bed covers to remove the ball that keeps the covers off my hyper-sensitive big toe.  Instead of rolling the ball into its corner, now I roll it towards my leg brace.  After I don my brace the ball reminds me to go to the bathroom, stand while I hold onto the grab bar next to my bathtub, and bend my knee.  I can do 8 repetitions before my weak hamstrings poop out.

Bottom-Line:  Figuring out how to do exercises at home can take creativity and persistence.  Starting this process before therapy ends means I can ask my therapist for suggestions.

May 5, 2017

Mini Exercise

Pain did not end after knee surgery so I asked for PT.  My PT said my knee problem was caused by weak muscles that do not keep my joints in good alignment.  However, I cannot be trusted to do boring, time-consuming exercises that never end because my weakness will never fully go away. Steinberg (1) says adding another chore "stands little chance of lasting over time."  When I was an OT I did not know how mind-numbing exercise is when it must be done every day until a client with a chronic condition dies.

I find it easier to incorporate an exercise into a habit than to add another exercise to my to-do list. In the 13 years since my stroke I learned I will do 3 to 5 repetitions every day IF I use a familiar object as a memory aid.  I call doing a few reps every day forever a mini-exercise. Here is one of the mini-exercises I added to my daily routine because I do not want knee replacement surgery.

My PT had me do lunges to strengthen my knee.  My knee wobbled left or right (red arrow) as it bent because my hip muscles are weak.  After 1 or 2 reps my knee stays lined up with my foot (green arrow) because hip muscles start to work together to keep my knee in the midline.  I chose the toilet to prompt me to do a few lunges.  On his TV show Dr. Oz showed how much water sprays out of a toilet when it is flushed so I got in the habit of lowering the lid before I flush.  I have to wait for 10 seconds so I may as well do lunges.

April 27, 2017

Two Sets of Ten Do Not Undo 12 Hours of Disuse

I had back spasms after my stroke.  It was terrifying to be frozen in standing hoping I would not drop my cane or fall down.  I was highly motivated when a PT gave me exercises to strengthen the weak abdominals that let my back arch every time I lift my hemiplegic leg.  I do these exercises before I get out of bed in the morning.  However, a few repetitions do not undo the effects of
12 hours of disuse.  

If exercise was enough, coaches would stop after they make football players run laps around the field and throw and catch footballs.  Exercise conditions the body, but the mind has to learn to use new skills when we are distracted.  Exercise strengthens muscles, but it does not retrain the brain to use muscles when we have a cognitive challenge.  

Transferring gains from exercise to my daily routine has had mixed results.  Success: I consistently lift my hemiplegic leg higher than is necessary to walk up the steps to my front door.  I am pleased I do not see scuff marks on the top on my new shoe.  I am no longer dragging the toe of my shoe over the edge of the step. 
 
Failure: I want to stop arching my back when I lean my stomach against a counter for support. I am failing two-thirds of the time.  To remind myself to reach forward and lean on my right hemiplegic hand, I put a beige piece of non-slip shelf liner on the front edge of the kitchen sink.  I kept forgetting to do this so I added a 2nd memory aid.  A blue piece of non-slip shelf liner reminds me to 1st rest my sound hand on the counter when my hemiplegic hand reaches for the counter.  I am improving so I know I can stop this bad habit.

April 18, 2017

Two Ways Therapists Earn Their Pay

Therapists help clients in many ways but here are two ways therapists earn their pay.

1.  Contraindications.  When I taught OT students I used case studies to make them to think about the needs of each client.  I had students work in small groups to treatment plan for one case and then had them individually treatment plan for a different  case on an exam.  This allowed me to identify students who knew which solutions from the 1st case could be used with the 2nd case.
For example, the 1st stroke survivor had a tight arm that did not want to straighten to allow him to don a shirt.  This client should be taught to use gravity to relax the arm by hanging it between his legs before dressing. On the exam I gave them a stroke survivor who had flaccid shoulder muscles that could not hold the arm in its socket.  Hanging the arm between the legs was contraindicated because it can damage nerves by stretching them.  A client should not have a brachial plexus injury added to the paralysis created by a stroke.  Students lost double points when they blindly used protocols that endangered a client.  The phrase "all strokes are different" can irritate stroke survivors, but a therapist who thinks all strokes are the same is dangerous.

2.  Nothing Works 100% of the Time.  When science finds a new cure it never saves 100% of the people.  A treatment protocol is considered successful when it cures a majority of the people.  It is a therapist's job to figure out what to do when a client does not respond to a protocol that has succeeded with other clients.  For example, the PT who is treating me after my knee surgery taped my knee.  I never dreamed the tape would aggravate the constant burning I feel in my foot.  When the burning sensation crept up my calf to my knee I took the tape off.  She will have to find another way to increase my knee stability.  Apple would lose business if updates they send to iphones work on only 80% of phones.  Humans have to live with the fact that we are not identical clones that respond identically to protocols.

April 10, 2017

Saved by Dumb Luck AGAIN

Pain is a great motivator.  A painful crack (black line in photo) that starts in the quick of my sound thumb returned this winter.  Every time I picked up an object the pressure opened this crack which was very painful.  So I was happy that dumb luck saved me again.  I bought a garden glove to wear when washing dishes because this glove is bigger and looser than a regular kitchen glove.  The roomier fit makes it easier to slip on my hand. 

The dumb luck came when I stapled the top of the glove
(see circle in 3rd photo) to shorten it.  As soon as I saw the cuff I created my hemiplegic (affected) hand reached out and pulled the glove on without my thinking about it. 





After I am done using the glove I remove it by resting the glove on a towel.  My slightly fisted hemiplegic hand traps the end of the glove while I pull my sound hand out.





Luck struck again when I realized the cuff could be used to hang the glove on a hook on the inside of the sink cabinet door.

I love avoiding medical catalogues that sell expensive equipment.

April 4, 2017

Time to Spend $32,500 on Stem Cell Therapy?

TeleHealth Medical Group is offering stem cell therapy to stroke survivors for $32,500.  So it is time to ask myself if I would do it.  A recent clinical study (1) raises four common sense concerns.

1.  Six of the 18 subjects experienced "serious treatment emergent adverse events."  While all events were resolved, it is disturbing that one-third of the people had problems after the surgery. Adverse treatment effects are real to me because I took hormone replacement therapy when it
was an exciting new way to handle menopause.  Unfortunately, hormone replacement therapy raises triclyceride levels which are fats in the blood that clog blood vessels.  My triclyceride levels went sky high which probably contributed to my stroke.  I have made my contribution to science so I will let others take the risk associated with stem cell therapy.

2.  The thrill of lifting an arm or leg one day after surgery is evident on the face of two subjects, but do isolated movements translate into functional gains?  The woman who beamed while lifting her arm over her head was pregnant at the time of the video above, but can she safely carry her child in her affected arm?  I have lost track of how many objects I have dropped while holding them next to my body as I walk, like dirty clothes, a book, and a pillow.  The problem with tests that evaluate movement outside of a meaningful context is that stroke survivors do not know what they can do when they have a cognitive challenge.  Manipulating an object while holding a squirmy, fussy baby is not the same as holding your arm in the air.  As an OT I was happy when clients made gains on motor tests.  A stroke showed me that passing items on a non-functional test is not good enough.

3.  After surgery there were significant gains in movement on the Fugl-Meyer Motor total score, but the majority of those gains happened in the first two months (mean increase for the group = 11.4 points).  Very small gains were made over the next ten months (mean additional increase = 1.4 points).  Are researchers telling subjects that stem cell therapy creates a small window where they have to do intensive rehab to retrain the brain?  Is Dr. Steinberg telling his clients that surgery is only the first step in recovery?

4.  $32,500 is a lot of money that I need to stay in my home.  I am willing to bet that TeleHealth Medical Group does not offer a guarantee that stroke survivors will see meaningful results.

1.  Steinberg G, Kondziolka D, Weschler L, et al.  Clinical outcomes of transplanted modified  
     bone marrow-derived mesenchymal stem cells in stroke: A phase 1/2a study. Stroke. 2016;47
     (7):1817-1824.

March 29, 2017

Safety Precautions Rocket Me to Independence

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 brokered a compromise.  I could sit outside if I came back upstairs and wrote down where I was going on a clipboard. The psychologist said the staff were afraid I would wander off if they let me go outside. Did the aides tell anyone I had been reliably transporting myself to and from therapy for days? 

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 brainstem instead of the brain?  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.   While the director gave me a tour she said 3 or 4 times that "elderly people prefer to have a nurse give them their medication."   If the assisted living staff decided it would be safer if the nurse dispensed my pills, my day would revolve around visits to the nurse because I take pills four times a day.  I saw the nurse handing out pills in a snack area where people who did not want to go to breakfast where waiting.   I am not really living in an apartment if the nurse can open my door with a master key to give me my pills when I decide to sleep in.

Being treated like a senile 95 year old turned out to be a blessing in disguise.  I am not sad that I use a cane and leg brace and print checks with my non-dominant sound hand.  I am grateful that compensatory strategies make me independent enough to live in my own home.

March 22, 2017

Saved by Sheer Dumb Luck

One problem I worried about repeatedly before my knee surgery was stress incontinence.  Coughing or sneezing sometimes produces a small urinary leak that turns into a flood after about 60 seconds.  While waiting for my surgery date I learned sudden knee pain also triggered stress incontinence.  This set off alarm bells in my head.  I regularly get up in the middle of the night to
go to the bathroom and was worried about losing bladder control if I felt sharp knee pain.  I was freaked out about trying to clean urine from my wall-to-wall carpet.

A bedside commode would solve this problem, but I live alone so who is going to empty it??

I cannot carry the bucket in my sound hand because I need that hand to hold a walking aid.  I was saved by serendipity. Before surgery I had placed a laundry basket so I could put dirty clothes in it as I came and went from the bathroom (see door on right side of photo).  During a practice session my friend Hanneke put some water in the bucket.  Feeling the liquid slosh around made the problem real and something made me look at the laundry basket. I knew the bottom of the laundry basket is so smooth that it slides over carpeting like it is on ice.  So I put the commode bucket inside the laundry basket and slid it to the toilet in my bathroom.

While carrying the empty bucket from the toilet to the shower, my sound hand held the bucket and I slid the heel** of my hemiplegic hand along the bathroom counter to keep my balance.  Hanneke suggested I put the bucket on my shower chair and use the shower hose to rinse it rather than risking a fall by leaning over to put the bucket under the water spout.  After letting the bucket drain while sitting upside down on the shower chair I took it back to the commode by putting the bucket in the laundry basket and sliding it.

Ironically I never needed the bedside commode.  Yet I felt triumphant because so many health professionals have told me to use a bedside commode.  I also felt humbled because I arrived at the solution through sheer dumb luck instead of my OT degree and clinical experience.

** heel of hand = palm on the little finger side of hand near the wrist

March 13, 2017

I Cannot Die Happy

I cannot die happy until doctors stop using the 29 year old Modified Rankin Scale to evaluate the effectiveness of treatment (1).  Research findings are highly suspect when researchers use a scale that is so general it captures only broad, sweeping changes after treatment (2).  Not giving credit for dozens of functional gains between Level 5 (bedridden and needing constant nursing care) and Level 3 (requiring some help but able to walk without assistance) ignores significant gains that affect the quality of life of stroke survivors.  I do not know if doctors keep using the outdated Rankin because they have not kept up with current research or they do not want to use a more sensitive outcome measure that requires training to administer and score.

0  No symptoms
1  No significant disability despite symptoms; able to carry out all usual duties and activities
2  Slight disability; unable to carry out all previous activities but able to look after own affairs   
    without assistance
3  Moderate disability; requiring some help but able to walk without assistance
4  Moderately severe disability; unable to walk without assistance and unable to attend to own
    bodily needs without assistance
5  Severe disability; bedridden, incontinent and requiring constant nursing care and attention
6  Dead

1.  Bonita R, Beaglehole R. Modification of the Rankin Scale: Recovery of motor function after    
     stroke. Stroke. 1988; 19(12):1497-1500.
2. Kuntz A, Ebinger M, Geisler F. et al. Functional outcomes of pre-hospital thrombolysis in a    
    mobile stroke treatment unit compared with conventional care.  Lancet. 2016;15(10):1035-1043.

March 3, 2017

Thanks to a Small Army of Volunteers

Surviving arthroscopic knee surgery required the help of a small army of volunteers.  Listed in chronological order, here is what each person did to propel me towards independence.  There were so many problems I did not anticipate that I am glad no one had to help with every problem after he or she volunteered to help with one issue.  Spreading the workload is my 8th strategy for preventing volunteer burnout.

Jean - A stroke impaired my balance so I asked for Codeine instead of a stronger opiate.  While the nerve block was still in my body the Codeine worked great.  When I woke the morning after surgery I was in agony.  For me, a 10 on a pain scale is having my diaphragm go into spasms so I cannot take a breath to scream.  That morning my knee pain was a 9.  I called my surgeon who sent an electronic prescription to my pharmacy, but I was not able to pick it up.  I texted Jean who picked up the Vicodin and brought it to my house.

Barabara S - The Vicodin made me horribly nauseous.  If you have ever been seriously seasick or had bad morning sickness while you were pregnant you know that relentless nausea steals your will to live.  "I want to die" is not a metaphor when you are this sick to your stomach.  I texted Barbara who brought me gingerale.  She also brought me Band Aid brand Tough Strips because the cheap bandaids I was using to cover the surgical holes would not stick to my skin.  She took two letters to the post office so I could pay two bills that arrived after my surgery.  Before Barbara left she set up my garbage can.

Lauren - I was afraid to push my garbage can to the curb because garbage day came before I had walked outside.  With the garbage can placed next to my front porch I was able to throw bags of garbage over the railing.  When my garbage was ready I texted Lauren to let her know to cross the street to my house.  Stinking garbage on my patio would attract animals that live in the woods next to my house - not good.  

Janet - She called me to see how I was doing and made me laugh so hard that I felt much better. 

Mark - My brother lives 850 miles away so it was wonderful to receive phone calls and texts that told me he was thinking about me.

Peggy and John - They brought cooked meals, groceries, and more bandaids.  Blood thinner makes my skin heal very slowly so I know I will need LOTS of bandaids to keep my leg brace from ripping open the holes the surgeon made.  Peggy told me how to order groceries on line until my walking endurance comes back.  

Barbara M -  She had a PT session on the afternoon of my post-op doctor visit, but it is a relief to know I have another person I can call if I need help getting to an appointment. 

Suzanne - She agreed to take me to the post-op meeting with my surgeon.   Knowing that it did not matter if I failed, I got the courage to walk a short distance down my street and drive my car around the block.  My car is modified so I drive with my sound left foot rather than the hemiplegic right leg which had surgery.  Stopping Vicodin after 2 days meant I was no longer worried about the warning "do not operate machinery while taking this drug."  I drove myself to the doctor visit, but really appreciate Suzanne's offer to drive me.  Reducing fear was a crucial part of my recovery.

Chatting and texting with these people was also an important part of my recovery.  It distracted me and helped me remember I am not alone.  Research has repeatedly shown that social connection is good medicine. 

February 24, 2017

It Isn't Failure - It's Rehearsal

Quotes like "If you're not prepared to be wrong, you'll never come up with something original"
(Ken Robinson) are not really helpful.  A more practical way to see failure as positive is to call it rehearsal.  When struggling with a new challenge it does not help to feel bad about the mistakes I make.  The purpose of my 1st attempt is to give me ideas about how to make my 2nd attempt awesome.  To be honest, I feel frustrated the 1st time I try something new and may even quit.  When I was able-bodied I was totally unaware of how often I used both hands or needed good balance so I am often unprepared for the challenges a stroke creates. Trying the task again the next day accomplishes two things.  My frustration has receded so I am calmer and the mistakes I made the 1st time give me ideas about what to do differently.

I still get frustrated when I try something new BUT I quickly hear myself say "it's a rehearsal."
This calms me down and reminds me that rehearsal has the potential to propel me to success
if I change the way I think about what is happening to me.

February 14, 2017

Counting Down to Knee Surgery

I alternated between sheer terror and wanting arthroscopic knee surgery.  At three in the morning I would wake up with a feeling of dread that I would have another stroke.  Yet the pain and fatigue I feel and the slow walking I have to do all day tells me surgery is necessary.  I used to be able to walk five steps from my bed to my en suite bathroom in my bare feet with no cane.  Now I have to take small steps with the help of a quad cane.  I have to be vigilant when I take the first two steps every time I stand up because this is when I feel a sharp pain that can make my knee collapse. 

A recent visit to a new neurologist made me feel better.  My vertebral artery which reaches the brain by snaking through neck bones is narrowed by stenosis.  This means my brain will not receive enough blood IF my blood pressure drops too low to push blood through this narrow blood vessel.  While doctors are typically alarmed by high blood pressure, this neurologist wants my blood pressure to remain normal.  For me normal is 130/75.  He also increased my aspirin from 81 to 325 mg to discourage blood clot formation.  I can take this aspirin right up to the day before my surgery.

February 7, 2017

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.

February 2, 2017

Research on Therapy Can Be Misleading

Researchers found stroke survivors regained hand function after Wii therapy (1).  They targeted clients who already had some finger movement before treatment began.  I know this for two reasons.  First, subjects must have small finger movements to be eligible for the modified constraint therapy given to the control group.  Second, the outcome measure was the Wolf Motor Function Test which is loaded with high level test items (e.g. turn key in lock, pick up a paper clip).  Only stroke survivors with significant hand recovery can perform test items on the Wolf Test.

An efficacy study of the Smart Glove also used subjects who were high functioning enough to pass items on the Purdue Pegboard Test, the Jebsen-Taylor Test (e.g. write, scoop up beans with a spoon), and the Fugle-Meyer Test, distal items (e.g. pick up Coke can and piece of paper) (2). 

Treatment may be appropriate only for a particular sub-set of clients so you should always read the description of the sample and outcome measures used in the study.  Researchers of therapy approaches may have used a sample of high functioning subjects for their proof of concept study.  This makes the treatment look good, but can create false hope.

1) Trinh T, Scheuer S, Thompson-Butel A, Shiner C, McNulty P. Cardiovascular fitness is     
    improved post-stroke with upper-limb Wii-based movement therapy but not dose-matched  
    constraint therapy. Top Stroke Rehabil. 2016; June 23(3):206-16.
2) Shin J, Kim M, Lee J, et al. Effects of virtual reality-based rehabilitation on distal upper    
    extremity function and health-related quality of life: a single-blinded, randomized controlled     
    trial. jrneuroengrehab.biomedcentral.com/articles/10.1186/s12984-016-0125-x. Accessed   
    January 31, 2017.

January 31, 2017

Community Ambulation Falls Thru the Cracks

Stroke survivors have to figure out how to walk safely in the community.  Walking in PT gyms and on deserted sidewalks did not prepare me for walking in community settings.  I had to teach myself how to maneuver around carts and people in a grocery store, squeeze past closely placed chairs and tables in a restaurant, and deal with children in a shopping mall who do not look where they are going.  PTs do not know that walking requires divided attention because they walk clients in wide empty spaces that provide no cognitive challenges.  Equally unfortunate, OTs who are trained to assess and treat cognitive issues do not assess community ambulation because walking is PTs domain.  So community ambulation falls through the cracks. 

A recent study simulated the unpredictability of walking in the community.  Inness learned what stroke survivors did when they experienced an unexpected balance challenge (1).  Subjects were asked to stand with their feet on two force plates.  At an unexpected time the force plates were tipped forward and subjects had to recover their balance by stepping forward onto a third force plate. Clinical tests like the Berg Balance Test did not have a significant correlation with the unexpected stepping test.  The Berg Test does not measure real world balance because it allows clients to concentrate fiercely on their own body and decide when they want to initiate movement.

Bottom Line: Being afraid to walk in crowded environments is a major barrier to participating in valued community activities.  Limiting gait training to walking in the home contributes to social isolation and depression. 

1.  Inness E, Mansfield A, Lakhani B, Bayley M, McIlroy W. Impaired reactive stepping among
     patients ready for discharge from inpatient stroke rehabilitation.
     http://ptjournal.apta.org/content/early/2014/08/06/ptj.20130603.abstract.

January 26, 2017

We All Can Help Emergency Responders

A presentation by an emergency responder taught me they need our help.  He recommended we keep a list of medications and contact numbers stuck to the refrigerator door with a magnet. 
I did this and added a copy of my living will.  I hope the gaudy turtle magnet catches their eye.




When I am out I have a special compartment in my purse that holds emergency information.

# 1 (green paper) is a list of phone numbers I need.
# 2 is a copy of my living will that includes contact
information for my brother who has the power of attorney for my health care.
# 3 is a list of  my medications.  My mother was wrong.  Contact information, a living will, and a list of medications are more important than having clean underwear when visiting an emergency room.
# 4 is a gel pen that is one of the writing aids I cannot live without.  I use this pen to sign credit card slips and write notes on a small index card I keep in this compartment. 

January 14, 2017

Snow At My Door

Sometimes I can wait 1 or 2 days for the snow to melt when my area gets a warm spell after it snows.  This snow storm was followed by a 5 day cold spell.  Adding 2 more days for the snow to melt means I could have been home bound for a week.  Fortunately, this snow storm dropped only 3 inches of light, fluffy snow.



I handle this much snow with a broom and child-sized shovel (red handle) that I keep outside my front door.  With my sound hand and armpit, I sweep snow off my steps, push the snow off my walkway, and make a path to the door of my car.  I get rid of the accumulating pile of snow by using the shovel to flick the snow onto my lawn or make a pile in the street.  My neighbor does not drive so I do not feel guilty about making a low pile of snow in her empty parking space.

To clean snow off my car, I wear an apron so I can lean against the car without getting my coat dirty.  I hang the apron around my neck but do not tie the strings behind me.  I shove the snow off my car with the tool designed to clean wind shields.  It is easy for me to control because it is light and the handle is short.  It has a soft side that will not scratch the paint on my car and a blade side to clean the windshield.  Pushing snow off my car dumps snow on my feet so I wear snow boots (see previous post) that I can don one-handed.  When I get snow on my hand I am grateful for the super warm mittens I used when I was skiing.

I keep a container of ice melting crystals next to my front door.  This large container has a spout designed for sprinkling, but the container is too heavy for me to control.  I use a funnel to pour a manageable amount in a small container.  I place the small container and funnel in my bathroom sink to make the transfer.  Compensation does not make me sad - it keeps me in my home.  

January 3, 2017

STILL Being Undressed Like a Baby

Babies are not asked if they want to be undressed - they are expected to submit when people start pulling off their clothing.  I cannot believe doctors have been undressing me like a baby since I had a stroke 12 years ago.  I recently saw a doctor who reached down and undid the top strap of my leg brace so he could look at my lower leg.  To hide my anger, I told him I have taken off my brace and shoe 10,000 times and can do it faster than he can.  Yelling at a surgeon who is going to cut me open to repair a torn meniscus in my knee is not wise.  

Here is the script I will try the next time a doctor starts undressing me.  "If you were a gynecologist you would not undress a female patient.  But I understand your dilemma.  I specialized in stroke rehab and cannot tell what stroke survivors can do while they are sitting.  I would ask "Do you need help with.........."  (Dean, Mark -  have doctors tried to undress since you had a stroke?)

If the doctor asks me if I need help I will say "I can do it but thank you for offering."