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.

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.

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.

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.

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 like reaching.  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.
    doi.org/10.11371/journal.pone.0179453