July 25, 2016

Fixing Cars and Smart Phones is Easy

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

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

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

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

July 15, 2016

11 Things I Must Do to Drive Independently

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

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

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

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

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

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

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

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

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

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

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

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

July 6, 2016

The Only Magic Bullet I've Found

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

I do not feel bad about not multitasking. This strategy keeps me safe and improves my performance. When I take a hot dish out of the the oven I stop talking to guests.  I need to make sure my hemiplegic (paralyzed) hand maintains a firm grip on the 400 degree handle.  When I drive during rush hour I turn off the radio.  I need to respond quickly to aggressive, unpredictable, impatient drivers.   .

I am not saying stroke survivors can never multitask.  However, it takes many repetitions before a task becomes so automatic that I can pay attention to a second task.  After a month of winter I can zip my coat  AND  talk to friends as we get up to leave a restaurant.

July 1, 2016

Is It Rehearal or Exercise? - Labels Matter

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

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