December 27, 2017

Walking in Snow with a Cane

Bottom Line: I am not ready to go to an assisted living facility were the van will take me to Wal-Mart once a week.

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

The photo on the left shows the Briggs Ice Cane/Crutch Attachment.  I bought it at a medical supply store near my home.  The advantage of buying it in a store instead of on-line is the saleswoman got out a screwdriver and fastened the device to my cane.  It stays out of my way in the up position.

To lower the prongs, I place the cane in my hemiplegic (paralyzed) hand which holds the cane while my sound hand pushes the device down until I hear it snap into position.

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

I use another cane during warm weather rather than take this device off and put it back in the same place each winter.

December 18, 2017

Best Description of What a Therapist Does

Writing step-by-step instructions for therapists who treat stroke survivors would be like writing step-by-step instructions for how to make a basket during a basketball game.  The basket stays in the same position, but a player has to respond to players on the opposing team and make changes second by second.  Therapists face the same dilemma.  Haarman measured what therapists do when they walk stroke survivors (1).  Sensors on a stroke survivor's body found PTs used their hands to provide a corrective shift of only 2% of a client's body weight.  These tiny corrections lasted an average of 1.1 seconds.  Corrections were the therapist's response to what the client did.  Experienced therapists are able to make subtle, brief corrections because experience has taught them the bad things that can happen if the abnormal movements they detect get larger.

Unlike robots, human beings have their own agenda that can help or hinder a therapist.  I had clients who thought they were helping by standing up quickly while in a wheelchair and then launching themselves towards the bed.  I had fearful clients who pulled back the minute they felt me pull them forwards to do a transfer.  Add in day-to-day variables like fatigue and changes in muscle tone and differences in clients' body weight and height -- guidelines are the best that can be provided for this logistical challenge therapists solve every day.

Even though I was an OT, I could not feel these subtle, brief corrections after I had a stroke.  Stroke survivors know how fiercely we have to concentrate to tell every body part what to do when we are relearning a movement.  When my PT walked me, I did not have one brain cell left to pay attention to what she was doing.  This led me to complain to my PT that walking was not getting easier as the days passed.  She told me I was improving because she was gradually giving me less and less assistance.  I never thought to tell this to my clients either.

1.  Haarman JA, et al.  Manual physical assistance of therapists during gait training of stroke
     survivors: characteristics and predicting the timing. Journal of NeuroEngineering and 
     Rehabilitation.  2017:14(125).

December 11, 2017

Why I am so Stubborn About Refusing Help

I consistently refuse help for tasks I know I can do myself.  If a stranger offers to help I say "Thank you for offering but I can do it."  Refusing help from friends and family is even more important.  I do not want to be the friend or sister who repeatedly pulls the stroke card to get special treatment.  People do not need special training to know when they are being taken advantage of.  Because I am stubbornly independent, I never feel guilty about asking for help when I need it.

I recently asked a friend to pick me up early to go to a movie.  I cannot creep past the feet of able-bodied people who want to sit in the lower rows.  With peoples' feet clogging the aisle, I have no place to put my cane tip on the floor so I am at great risk for falling.  If we arrive shortly before the movie begins my friend and I have to climb up to the empty rows in the nose-bleed section.

I also do not want to be the stroke survivor who makes a mess that other people have to clean up.  On the rare occasion when I eat steak, I ask my brother or a friend to cut it up for me so it does not land on the floor.  Even my best rocker knife is too dull to cut through dense meat fiber.  The fierce downwards pressure a rocker knife requires quickly dulls the blade.

Knowing when to refuse and when to accept help takes thought.

December 3, 2017

The Kindness of Strangers and Friends

My recent 2,000 mile trip reminded me of the kindness of strangers.  For example, loading luggage in my car before I check out of a hotel can be difficult.  At one hotel I could not get the empty luggage cart back through the heavy outside door near my handicapped parking space.  I went inside and asked an employee at the front desk for help.  He was happy to retrieve it for me.

I ordered a single serving cereal pack for breakfast and was not able to break the seal.  I asked a woman passing by my table if she would be willing to open it for me.  The glue was so strong it took a person with two good hands three tries to peel back the top.  At another hotel I went to get coffee at the buffet breakfast.  I was challenged by a coffee urn with a control lever two feet above the table.  I have one trustworthy hand that can control a lever OR hold a cup of coffee directly under the spout.  If a trucker had not been willing to help me, I would have splashed coffee all over the table.

Before I left for my trip, my good friends Peggy and John put a plastic carpet protector under my computer chair which helps the chair roll.  For me, wrestling with this heavy, awkward object is a fall hazard.  After I returned from my trip Peggy invited me to a brunch.  I was able to get up two steep steps in the hallway of her house because John had placed a secure hand hold on the door jamb.  Without this assistive device, I would need physical assistance because these steep steps are a balance challenge. 

I know when to ask for help because I had a stroke in my neck in a small structure called the pons.  The pons is part of the brainstem that carries movement commands from the brain to the spinal cord.  The pons does not control cognitive functions.

When I see that trying to be independent will make more work for other people I am not shy about asking for help.  The kindness of others is an important part of my stroke recovery.

November 27, 2017

Are Sadness and Anger Bad?

The holiday season often evokes strong feelings.  I used to think emotions like joy and love are good while emotions like sadness and anger are bad.  Now I believe that how I react to my emotions is what is good or bad.  It is bad when I let moments of joy fly past me unnoticed because I am pre-occupied by internal mental chatter.  It is good when I stop what I am doing and take a few seconds to appreciate when I am happy.  It is bad when I rerun upsetting episodes in my head.
It is good when I use anger to propel me towards a solution.

IF I could go back and tell my younger self to stop reliving memories that upset me, I doubt it would make any difference.  1st when I was young I had the tremendous energy it takes to sustain emotional drama.  A stroke took away the energy I need to stay upset for a long time.  2nd being snubbed recently reminded me of how intense emotions can be.  I was upset the day I was snubbed.  By the next day -- not so much.  By the third day I remembered that letting this person upset me gives her power.  By the fourth day I remembered I was upset for decades when I was younger but can not remember most of what upset me.  Hence the irritating platitude -- this too shall pass.  My heart does not get to choose which emotions I experience, but how I react to those emotions is a conscious choice.  Of course, I forget this again and again.  Fortunately, as I get older I remember this insight sooner and suffer less.

November 21, 2017

Still Disappointed

A recent study on robotics leaves me disappointed once again.  Years of research on new technology for stroke survivors has not gotten past facilitating ARM movements.  As a stroke survivor I want to use the hand at the end of my arm.

Part of the problem is that the wrist and fingers can perform 29 different movements.  Even worse, which of the 29 movements are needed depends on what each object demands.  Researchers
do not study simple movements that make a hand functional but require only a few degrees of freedom.  These hand movements are so easy and brief that able-bodied people are not aware of them.  Simpler hand movements would make it easier to program a robot, teach research subjects the task, and analyze data.  To break through this brick wall, read the page at the top of my blog called Hand Evaluations.

November 12, 2017

Doctors Do Not Prescribe Therapy After a Stroke

As a stroke survivor I was shocked to learn that clients get home health and out-patient services ONLY IF THEY ASK FOR THEM.  In the hospital clients are given a list of home health agencies in their county.  It is the client's responsibility to contact an agency and request services.  The agency then contacts their doctor who faxes a prescription to the agency.  Getting out-patient services is even harder.  Clients have to go on-line and ask friends if they know a good therapist.  Again they have to contact the agency who asks the doctor to fax a prescription.

I think neurologists, orthopedic surgeons, and general practitioners do not order therapy for stroke survivors for two reasons.  1. They have not kept up with advances in rehab for strokes.  You would think at least a neurologist would stay current, but they diagnose dozens of neurological conditions and cannot keep up with advances in dozens of fields.  Not staying current may mean a doctor thinks recovery after a stroke is possible only for a short while so there is no point in ordering therapy months or years after onset.

2.  The next time doctors they see me I am not cured.  They do not see the value of small gains.  The photo on left shows how gaining the ability to raise and straighten my hemiplegic arm allowed me to lean my hemiplegic hand on the counter when working at a sink.  This was a valuable way to prevent falls when I had poor balance.  The photo on the right shows that weak hip muscles allowed my knee to swerve left or right instead of staying in the middle when I bent my knee (red arrow).  After a round of PT I did strengthening exercises correctly at home (green arrow) to avoid knee replacement surgery.


November 4, 2017

Off on a 2,000 Trip

I am off on a 13 day 2,000 mile trip.  I will present at a state OT conference and visit my brother and a dear friend I have known for 50 years.  All 3 events are important to me.  They confirm that my stroke experience is worth sharing and help maintain life-long relationships.  Both give my life meaning and joy.

I will spend 5 days driving because I restrict my time on the road to 6 hours a day since my stroke 12 years ago.  Thank God a brainstem stroke left me with good safety awareness, like knowing not to drive in unfamiliar places at night. 

Rehearsal saves me again.  I spent an hour learning how to use the unfriendly AAA app on my smart phone in case my car breaks down.  I recently got a flat tire at 3 p.m. on a Saturday so I was given an opportunity to learn tire stores, car repair shops, and car dealerships close for the weekend at 4 p.m. on Saturday.  I rehearsed using my new Garmin GPS during local trips.  This new model is confusing because it has too many features.  To keep track of the mountain of information I need for the 13 day trip, I typed instructions with hours and miles between destinations, hotel reservation numbers, and important phone numbers.

P.S.  Thanks once again to my OT with advanced certification in driver training for preparing me to pass the on-the-road test at the Division of Motor Vehicles and to Toyota which reimburses new car owners for car modifications.

October 27, 2017

The Gift That Keeps on Giving

The activity analysis I learned in OT school is a gift that keeps on giving after rehab ends.  I use it to identify specific skills I need at every step of an activity, like leg strength.  My in-patient PT had me squat and reach with my sound hand to pick up cones sitting on a low stool and stand up to place the cones on a shelf at head height.  So how can I maintain the leg strength I gained without having to add squats to my to-do list for the day?

Activity analysis allowed me to identify the thousands of times I have squatted in the 14 years since my stroke.  Squats give me two things I really need.  1)  They protect my bad back.  If I lean down by bending at the waist with my legs straight it puts a lot of strain on my back.  2) They make me safer because lowering my center of gravity by bending my knees and hips prevents falls.

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

Note: I place heavy objects in low locations that require squatting because using one hand to grab a heavy object from overhead (e.g. big pot, heavy book) is dangerous if I drop it on my head.

October 20, 2017

Why Treatment Protocols Are Not Put on the Web

When a programmer loads a new protocol into a computer the computer must do what it is told.  The human brain can ignore or alter the instructions it is given.  Unfortunately many of the decisions a brain makes is below the level of conscious thought.

I know many of the treatment protocols mentioned in research articles because I have advanced training in stroke rehab.  Yet this knowledge does not allow me to use these protocols on my own.  The problem is I can look forward to see where I am walking OR look down to see what my body is doing.  I can look down to watch what my hand is doing OR watch how the object in my hand is performing.  Proprioception, which is the sensory feedback about how fast and how hard muscles are contracting, is not helpful.  I could not keep track of the rapid sequence of muscles firing when I walked before my stroke and I cannot do it now.  I did not keep track of what my middle finger was doing during a task before my stroke and I cannot do it now.  I need a therapist to watch me and point out the devious way the human brain can sabotage treatment without our conscious awareness.  Reading a protocol and then doing it BADLY DOES NOT HELP.

In my opinion, the best way to make progress is to find a therapist who does not set you up with a treatment activity and walk away.  Even after you have the general idea, that does not mean you are doing it correctly.  I want a therapist to watch me for a few reps to look for wrong strategies my brain has discovered.  If therapists leave me with an aide, I want to hear them tell the aide to watch for a particular error and tell them how to correct it.

One advantage rehab knowledge gives me is I understand what my therapists are telling me.
A second advantage is I know how much stroke rehab has improved.  I remember how little some stroke survivors improved when doctors and scientists did not believe the adult brain was capable of neuroplasticy.

October 11, 2017

More Mini Exercises

Steinberg says adding another chore "stands little chance of lasting over time."  He thinks habit training is a good way to make exercising a reliable routine (1).  I agree with one condition.  It is easy to find an excuse to skip doing a long set of exercises (e.g. I am tired, I have a busy day).  However, in the 14 years since my stroke I learned I will do 5 repetitions every day IF I use an object as a memory aid.  I call doing a few reps every day until I die "mini-exercise."  It is hard to find an excuse to not do a mini-exercise.  Here is another example to add to my 1st post on

As an OT I had to pry open the hands of clients who had a lot of spasticity in their hand.  I do not want this to happen to me.  So before I open my hand to hold a deodorant bottle I practice opening my hand by placing it on the bed where I am sitting.

I repeat this exercise two times before I take the cap off the bottle and two times before I put the cap back on.  Four reps per day for years = lots of exercise.

1.  Steinberg O. Carryover Empowerment. OT Practice. 2017;July 10:14-18.

October 3, 2017

How I Get the Therapy I Need

Depressing statistics about getting therapy after in-patient rehab match my personal experience.
Researchers who analyzed data for 1,695 stroke survivors found that only 35.6% were referred to therapy after in-patient rehab ended (1).  Before the rehab hospital discharged me, a social worker gave me a list of home-health services in my county.  No one checked to make sure I contacted any of these home health agencies.  Getting out-patient therapy is even harder.  You have to do your own research (e.g. ask friends, Google) to find an out-patient therapist.

No internist, neurologist, or orthopedic surgeon has ever recommended PT or OT.  I get the therapy I need by asking for it.  I have never had a doctor refuse to give me a prescription for therapy, but none of these doctors has asked how my treatment is going.  I have to be in charge of my rehab.  I do not ask for therapy to go fishing for whatever therapists can think of to make me do.  I get what I need by creating a list of concerns that I bring to the initial therapy session.  I also check to determine when each concern is met during therapy.

I have had numerous rounds of out-patient OT and PT for stroke and orthopedic issues  However, none of the therapists have told me it is time to end treatment until administrative staff tell them I have reached the therapy cap set by Medicare.  They have looked surprised when I want to end therapy early because they have addressed my concerns.  I want to save the therapy time I have left for that year in case a new problem comes up.

I would not be living alone in my own home if it were not for several very talented out-patient
OTs and PTs.


September 27, 2017

Pictures Can Explain What OTs Are Doing

Aphasia is the inability to understand the spoken word and/or to express oneself verbally.
However, aphasic clients can retain visual-motor knowledge which helps them perform procedures. We do not talk ourselves through the steps of tying shoelaces.  We remember what the steps look like and what our hands must do.  Photos and clip art can help OTs explain what they are doing to help aphasic clients.  Here is one example.

If clients long for a home cooked meal I am pretty sure they are not picturing themselves sitting in bed balancing food on their lap and wearing sweaty pajamas while the family gives thanks at the table that their family member is home from the hospital.  A picture of a shoulder exercise that makes it easier to lift an arm without pain placed next to pictures of a shirt and a family eating together changes an exercise you should do into an activity you want to do.


Guessing what a person wants is risky.  An OT can find out what a client with aphasia wants by asking family members. They could bring in photos of activities the client enjoys, like holding a grandchild or a pet.  Watching a client's face light up when he or she understands what the OT is working towards can be addictive.

September 20, 2017

Rehab for the Foot Delivers But for the Hand....

Rehab for the foot delivers big dividends for stroke survivors.  Putting one foot in front of the other on level ground and on stairs allows me to participate in many meaningful activities.  I accept that PT is not going to help me return to downhill skiing or dancing.  Unless you are an athlete, people expect less of their foot.  Rehab for the hand is more complicated because expectations are higher.
Even people who are not musicians or surgeons expect their hands to perform many different movements during hundreds of activities.

A recent addition to my repertoire is the ability to open a large yogurt container.  Dean's posts about how gut health helps brain health prompted me to add a probiotic to my diet.
The first problem was removing the lid without getting my fisted hand covered with yogurt as it held the container still.  Yuk.  By chance I set the container on a silicon pad that protects counter tops from hot pans.  The rubbery silicon provides enough friction to hold the container still as I open it one-handed.

When I lifted the heavy container to put it in the refrigerator I dropped it on the counter and splattered yogurt.  Since I live alone I was the one who had to clean it up.  This prompted me to experiment with different one-handed grips. The photo shows the winner.  It looks precarious but it has never failed me.

For small individual containers, I press down on the rim with the middle and fourth fingers of my sound hand while my thumb and index fingers pull off the lid.

September 13, 2017

Update on Stem Cell Therapy

Reporters keep mining the stem cell study published in Stroke in 2016 (1).  None of the outcomes impress me.  The study used the National Institute of Health Stroke Scale (NIHSS) which grossly measures motor recovery as the ability to lift the arm and leg in the air and keep them from drifting.
Initially thrilling, but what can you do with this skill?  The study used the European Stroke Scale (ESS) which gives 48 of 90 points to domains like vision and language comprehension.  So how much of the average 6.88 point increase in ESS scores is due to improved arm and leg control?
The average increase of 11.4 points on the Fugl-Meyer motor scale is not impressive when the total possible points for the arm and leg is 162.  There was no increase in functional skills measured by the modified Rankin Scale.

I have not changed my opinion since my post in April.  I am still not ready to spend $32,000 on stem cell therapy.

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

September 5, 2017

The Elbow Does Not Get Any Respect

When I was an OT I was discouraged if clients could not recover a fingertip pinch which is a gold standard of hand function.  Then I was humiliated by having to put objects in my mouth to hold them still.  My 1st attempt to control my hand was to use shoulder motion to fling it onto my thigh.
I was devastated when my hand slid off my thigh because my elbow muscles were so weak.
After my elbow strength improved, I was thrilled when my fist spontaneously began to reach for objects to hold them still.

When Dean blogged about not being able to get the cover back on his umbrella I wondered if trapping it with my fist would work. It is irritating to carry an umbrella when open folds bang against my leg as I walk.  After the open umbrella dries, I lean down and use my sound hand to push the end of the Totes umbrella against the ground to make it lock in the folded position you see on the left.

I put the umbrella on a table and trapped the handle with my fist.  To keep the handle from sliding around on the table I used a small piece of Dycem (blue square) that I keep in my purse.  While repeatedly turning the umbrella, my sound hand was able to compress the folds and fasten the Velcro strap (white arrow).

Straightening my elbow to make my fist lean on objects is very useful. Here is a sample of objects I cut open while my fist traps them.  The objects vary from make-up to meat.

August 28, 2017

A Great Camera for Stroke Surviors

Giving Power Point presentations to stroke support groups forced me to learn how to use a digital camera.  Using my camera for a year showed me I have a new hobby I can enjoy.       I e-mail photos to my family, put photos on my blog, and can save beautiful memories like this visit to Sayen Gardens.  However, here were five problems I had to solve along the way.
(1) I cannot hold the camera still with one hand so I would get blurry photos with many cameras. Cannon has cameras with Image Stabilization which corrects for movement that occurs when I press on the shutter button. (2)  Instead of buying on-line, I went to a store so I could play with several different cameras.  Going through sub-menus to choose different focus options was difficult with one hand.  My Cannon Power Shot A1100 model has a round dial on top of the camera I can turn to different settings.  I turn the dial so the arrow is pointing to the icon I want and I am done.
(3)  I am one-handed so I had to learn to use 3 fingers of my sound hand to hold the camera while the index finger of my sound hand pushes the shutter button.  (4) My sound left hand created another problem.  Shutter buttons are always on the right so sometimes I get a photo with a finger partially covering the lens (bottom right corner of photo).     I am saved by viewing the photo and reshooting if needed.  (5)  Impaired standing balance forces me to look at my surroundings to stay vertical.  I hold the camera at arm's length and look at the LCD monitor so objects in my peripheral vision can show me if I am vertical.  This is much safer than obscuring my vision by holding the camera to my face to look through the viewfinder.                                                                                                                Bottom-Line: Anti-depressants do not just come in a pill

August 21, 2017

When I Cannot Finish What I Started

If I were still married, asking my husband to fix me breakfast would have been a disaster.  Harley got up at 6 a.m. every day we were married.  His routine was to go to a convenience store like 7-11 to get a cup of coffee and sweet roll and come home to putter in the garage while I got ready for work. Then he drove me to the train station where I bought coffee and a bagel.  On Sunday I slept in and he went to a flea market.  I am a night person who can count the number of times I have seen the sunrise on one hand.  If he made breakfast for me after my stroke, one of us would have had to change a life-long habit.  Repeated frustration can turn into resentment.

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

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

August 13, 2017

Meaningful Activities Make My Brain Ache

My presentation has been accepted for an OT conference.
I have presented at nine OT conferences and am determined to find a better way to carry the laptop I need for my Power Point presentation.  I cannot trust my hemiplegic hand to carry a tote bag.  I bought a child-size backpack which saves weight but creates problems.  I refused to go to a store to don a child's backpack with a cartoon character on it.  When a backpack arrived in the mail I realized the straps are too short.  This makes it difficult to put on and take off.  The straps are also slippery so they frequently slip off my hemiplegic shoulder.  This requires frequent stops because I have to put my cane down to push the strap back up where it belongs.  As the photo shows, this tiny backpack is barely big enough for the laptop and is too small for papers I collect at conferences.

Enter a new backpack - still child size, but the straps are longer and padded.  I rehearsed putting this backpack on and walking around to see if the strap stays on my hemiplegic shoulder.  The straps are great.  It is tall enough for me to put 8.5 by 11 inch papers inside.  My laptop slides easily to the bottom.  Yeh!

Bottom-Line: Participating in meaningful activities after a stroke requires detailed problem solving that makes my brain ache.
I was willing to do the work described above because presenting at conferences validates that what I have learned from having a stroke is valuable.  Unlike parents of young children who will eventually be able to stop packing a mountain of supplies to get out of the house, I will never be able to stop planning before I do a new activity.  Click on the "rehearsal" label below to see other examples of problem solving before participating in community activities.

August 5, 2017

Vindicated - Side Effects of Drugs Are Real

Unlike paralysis, fatigue is unpredictable.  The fatigue stroke survivors may experience means they have to break promises to do activities.  So I was not happy about the constant muscle ache I felt while taking a statin to lower my cholesterol.  Only about 20% of people experience this side effect, but when added to the fatigue associated with a stroke, it can be devastating. I finally got disgusted enough to tell my doctor that if he did not lower the dose of my statin I would stop taking it.  He cut my dose in half and the muscle ache and fatigue receded.

I was not imaging that statins affect muscles (1, 2, 3).  Researchers discovered statins interfere with a muscle's ability to store energy in small cells called mitochondria.  Statins can lower the level of enzymes that mitochondria need to perform their energy-storing function.

Good news: A lower dose of a stain maintained my lower cholesterol score while it increased the energy I need to have a life worth living.

1. Bouitbir J, et al., Opposite effects of statins on mitochondria of cardiac and skeletal muscles.
    Eur Heart J. 2012;33(11):1397-407.
2. Reynolds G. Can statins cut the benefits of exercise? NY Times. 2013;May 22.
3. Schirra T., et al. Stain-induced myopathy is associated with mitochondrial complexx III inhibition.
    Cell Metabolism. 2015;22:399-407.

July 29, 2017

Preventing Volunteer Burnout

If I live long enough I may have to go to a nursing home.  Using my volunteers wisely makes it more likely they will continue to help me so I can stay in my home.  I use 7 strategies to keep my volunteers from burning out (13 years and counting).

1. Prioritize.  I cut down on the number of requests by identifying what I need versus what I want.  I need someone to get on a ladder to change the batteries in my smoke detectors.  These detectors are connected to my electrical system that maintains an ear-splitting screech when the battery dies.

2. Build trust.  People do not need special training to know when they are being taken advantage of.  When I ask for help
I let my volunteers know I do everything I can before I contact them.  For example, when I asked Peggy to tape a bag shut so I could return a coat in the mail, I explained I had affixed the return label but did not trust my sound hand to tape the end of the bag securely.  People feel good about helping when they know they are really needed.  This strategy builds trust.

3. My husband would groan rule.  I cannot ask people to do things that would make a husband groan.  I cannot ask someone to buy a live tree, transport it, drag it into my house, use an axe to trim the base so the tree fits in the stand, and tighten and loosen the tree stand to reposition the tree until it is straight.  After having live trees my whole life
I bought an artificial one.  John takes it out of the box and snaps the four pieces together.

4. Let them choose WHAT to volunteer for.  I e-mail a request and let people choose things they want to do.  Peggy who loves to sews repaired the sleeve on my raincoat.  Barbara who is a computer technician volunteered to help me set up the Bluetooth system in my new car.  Parts of a task a volunteer hates will not get done.  Letting people choose what to do means I do not risk rejection because I have asked the wrong person.

5. Let them choose WHEN to volunteer.  After they volunteer I ask them when would be a good time for them.  Everyone has busy lives so it is less of a burden when I fit into their schedule.

6. Make a list and stick to it.  Before someone comes I make a list of the things I need done so my volunteer knows when he or she is done.  I stick to the list instead of looking around and saying "there is one more thing I need you to do."  This list also reminds me to get materials my volunteers need.  Before John comes to replace the batteries in my smoke detectors I buy 9-volt batteries.

7. 80% rule.  The 80% rule means some things can be mostly correct rather than perfect.  After my stroke I gave myself permission to not make everything perfect.  For example, I do not make multiple trips around my bed so the bedspread is perfectly straight.  The seam of my bedspread is supposed to be where the edge of the mattress is (see the black line).  I think it is only fair to extend the 80% rule to my volunteers. Nobody wants to hear they did not do it the way I used to do it.

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.  When my emotional response to a situation makes me suffer, I eventually remember that how I interpret what happens to me
is what creates the emotions I feel.

Fortunately, 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 hand 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.  They are a good way to decide if research results apply to someone like me.

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.  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 as seen by ARAT scores for object manipulation that ranged from 1 to 9 out of 57 (1). Group 2 was given "high-intensity" therapy for 6 hours per week for 6 weeks to use their hand during functional tasks.  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.  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.  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.

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 2 things I do not like about this new can.
1)  The garbage can liner is a much tighter fit so it is harder to get the bag 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).  2)  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 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

The Problem with Paratransit Evaluations

A generic test like the Transportation Skills Assessment Tool is not enough to assess a good person-environment fit.  Clients do not know if they can use paratransit without knowing the demands of the system available to them.  Here is a comparison of two systems I used.  One service covers the state of New Jersey and the other covers only my county.  Repeated paratransit  trips must be made 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 (e.g. cane, wheelchair) 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 each 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. 

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?"                                                                                                                        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

Knee surgery did not end my pain 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.  Yet I cannot be trusted to do boring, time-consuming exercises that never end.  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 daily activity 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 do daily 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 a few reps hip muscles keep my knee lined up with my foot (green arrow).  I chose the toilet to prompt me to do lunges.  On his TV show Dr. Oz showed how much water sprays out when a toilet 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 10 lunges.
I do this at least twice during my morning routine.

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

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.

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.