November 12, 2017

Doctors Do Not Prescribe Therapy After a Stroke

I think neurologists, orthopedic surgeons, and general practitioners do not order therapy for stroke survivors for three 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.  Just being able to place my fist on an object is helpful.  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 when I had poor balance.  The photo on the right shows how I use my hemiplegic palm to chop food.  I had a 2nd stroke because I did not control my salt intake which raises blood pressure.  Using aromatics like an onion mean I can make food tasty without using lots of salt.  Small gains can increase safety which insurance companies want because it lowers their costs.  The bottom photo 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 work hard to avoid knee replacement surgery.


3. Some clients do not push for more therapy because it is faster if a caregiver does tasks that challenge a stroke survivor.  To be fair, many people use this strategy.  When parents have to get children out the door so they will not be late for work, they may do something a child does slowly or reluctantly.  Living alone turned out to be a blessing in disguise.  I push for extra therapy when I cannot solve a problem by myself.  This means I go to therapy with specific goals in mind.  I never go fishing to see what might happen.

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.


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

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.