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.

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
mini-exercise.

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.

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.

1.  https://wakespace.lib.wfu.edu/handle/10339/86352

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.

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.

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
     (7):1817-1824.

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.

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

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

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.