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

I have never had a doctor refuse to give me a prescription for therapy, but I have always had to ask for it.  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 all the advances in dozens of fields.  Not staying current may mean a doctor still 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 I raised my hemiplegic arm so I could lean my hand on the counter to prevent falls when manipulating objects at a sink.  This was a valuable skill to prevent falls when I had poor balance.  The photo on the right illustrates how weak hip muscles did not keep my knee in good alignment.  Before a round of PT, my knee swerved left or right instead of staying in the middle when I bent my knee.  I was willing to do strengthening exercises at home 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 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 not driving in strange places at night.  I have driven this far since my stroke, but I am glad I have a smart phone this time.

Rehearsal saves me again.  I spent an hour learning how to use the unfriendly AAA app in case my car breaks down.  I recently got a flat tire at 3 p.m. on a Saturday so I had an opportunity to learn that tire stores, car repair shops, and car dealerships close for the weekend at 4 p.m. on Saturday.  I have practiced 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.  It identifies 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 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.

With advanced training in stroke rehab I know many of the treatment protocols mentioned in research articles.  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.