Good Luck Instead of Textbooks

As an OT I know many solutions cannot be found in textbooks.  So I am grateful good luck has helped me as a stroke survivor.  Here is one example.  My tap water tastes awful.  Buying five pound gallon jugs of spring water at the grocery store and carrying them from my car to my kitchen is too much for me. 
So I bought a Brita water filter to put on my kitchen tap.  However, opening the device to put in a clean filter inside is sdhgfj.

One day my dish drainer was empty as I was changing the filter.  I do not know why I put the filter in the dish drainer.  The lid is very tight so I decided to use a piece of blue Dycem to give my hand better traction.  As I was unscrewing the lid I noticed the end of the filter stopped moving when it hit the side of the dish drainer (see arrow). 




OMG.  Instead of dreading this task I feel smug because I know I will succeed.

How I Stop My Brace from Rubbing My Calf Raw

Long socks that reach the knee reduce skin chafing caused by the top part of a leg brace as it rubs the top of the calf (see arrow).  But sock manufacturers make tall knee-high socks only for men.  These long, large socks do not fit my woman's short calf and small foot.  The only knee-high socks made for women are brightly colored socks for soccer.  I am one of the least fashion conscious people I know, but even I will not wear gaudy colored socks that clash with my outfit.  A stroke taught me to appreciate every opportunity to appear as normal as possible.

Then I got the idea to cut the top off a man's tube sock so it covers only the top my calf.  The Velcro strap keeps this short section of sock from rolling up (see arrow).  I washed them many times to see if the cut edge would fray.  They do fray eventually but they hold together for a long time.  I use one sock from each pair so a package of 12 has lasted me a long time.  What people see on my feet is black socks with black shoes and beige socks with beige shoes. 

New Solution for My Leg Length Discrepancy

My thick plastic leg brace makes my hemiplegic leg longer than my sound leg.  I used to buy an extra shoe insert to put in the shoe for my sound foot to make my sound leg longer.  To keep this insert from sliding around as I walked  I kept it in place with two-sided tape.  Placing two-sided tape with one hand was a struggle.  This aggravation happened twice a year when I bought a beige colored shoe in the spring and a black colored shoe in the fall.  However, buying shoes one size bigger to accommodate my brace makes the shoe on my sound foot too big so it is loose.

Then something gave me the idea to put a 2nd sock on my sound foot.  I made sure the white ankle sock made by Hanes is 100% cotton so my foot does not get too hot in the summer.  This extra sock makes my sound leg a little taller AND keeps my foot from sliding inside the shoe.  Having a tighter fitting shoe on my sound foot makes me feel safer and makes walking less tiring.
I wish I knew about this solution when I had my stroke 14 years ago.  This solution is cheaper than buying two pairs of shoes of different sizes.

This solution created another problem because my regular socks get stretched out after I pull them over the white ankle sock.  So I bought permanent ink pens made by Sharpie to mark the stretched sock in each pair.  A black pen works fine for my white and beige socks.  The silver pen I use on my black socks fades in the wash so I have to repeatedly mark my black socks.

Online Rehab Does Not Transfer to the Real World

Electrical brain stimulation used with mildly impaired stroke survivors improved the ability to pinch (1).  However, the improvement was "mostly in the online stage."  A major weakness of computers is that they only create closed tasks.  Unlike open tasks which can change often and unexpectedly, closed tasks limit what is allowed to happen.  For example, video games change as the difficulty level increases, but once a player learns what is allowed at a particular level the options never change.  Here is an example of how transferring skills learned in a closed environment to the real world can be a disaster.  Self-driving cars cannot drive in the rain because visibility, wind, and road friction can change from moment to moment and day to day.

Moving a joy stick side to side and pushing buttons does not give computer designers a deep understanding of what the hand must do.  I have seen 20 somethings open my folded shopping bags by pawing at them like a bear.  The Velcro closure comes open by accident.
I watched a video of 20 somethings try to fly a kite by getting in a car.  Holding the string while driving fast made the kite slide on the road.  Minimal tension on the string did not tell their hands a kite must have a tail to pull it into a vertical position so the wind has a surface to push against.  Real objects teach the hand to develop many different skills.

Finally, hand use is a visual-motor skill.  Yet video games give low scores to people who stop to inspect an object to help them decide what the hand must do.  Here is an example of how gathering visual information before moving prevents disasters in the real world.  Vision tells us to increase muscle tone before we lift a large suitcase so it will not fall on our foot and to relax before we lift an empty glass so the glass will not fly out of our hand and break.  Designers who make their hands move at lighting speed in a world where mistakes have no consequences for humans have blind spots about what stroke rehab must offer.

1. Harmoudi, M. et al. Transcranial direct current stimulation enhances motor skill learning but not
    generalization in chronic stroke. Neuroral and Neural Repair. 2018; 32 (3).
    doi.org/10.177/1545968318769164.

Losing Sensation is a Canary in a Coalmine

Many years ago miners took a canary into the coalmine when they went to work.  If toxic fumes killed the canary the miners knew to get out.  I learned that losing the sensation of movement in my hand is also an early warning sign.  If clients had told me they could move their fingers without being able to feel their fingers moving I probably would not have believed them.  Yet I currently cannot feel my fingers move when I straighten them (see 1st photo).

This loss of sensation has happened before so I have learned the hard way that it is a warning I am gradually losing the connection with those muscles.  I have already lost active range of motion in my index finger (see 2nd photo).  I discovered this loss when I straightened my fingers is a brief exercise I do every day after I put the cap on my deodorant bottle.




This sequence of fading skills has happened many times in 14 years because I eventually slack off on my hand exercises.  Time to get back to work.  I cannot afford to lose the assistance my hemiplegic hand gives me during 100+ activities (I stopped counting when I hit 100).

Electrical Stimulation with NeuroMove

My hand was completely flaccid for three month after my stroke.  I did not get motion back until I started using an electrical stimulation device called NeuroMove.  Electrical stimulation strengthens muscles, but NeuroMove also has a biofeedback component.  I was able to watch a line on a monitor creep higher and higher as I thought about moving my hand.  That immediate feedback kept me focused and working hard even when I did not see movement.  When my muscle activity finally increased above the threshold line, I got a few seconds of stimulation and was rewarded with a visible hand motion.  NeuroMove would not help me until I made a sincere attempt to recruit the muscles that open my hand.  Equally important, NeuroMove would not repeat the stimulation until I completely relaxed the muscles I just used.  This added feature is important because stroke survivors have trouble both recruiting and relaxing muscles.

I tried other electrical stimulation devices that stimulated my muscles at pre-set intervals or when I pushed a button.  I could not coordinate my efforts with those devices.  In the beginning it took me 20 seconds to figure out how to recruit a muscle and up to 60 seconds to make that muscle relax.  Devices without a biofeedback component zapped me whether I was ready or not.  It was like dancing with a really bad partner who kept jerking me around the dance floor.  NeuroMove patiently waited for me.

Neuroplasticity helps stroke survivors grow new connections in the brain, but that does not mean we can find them. The biofeedback component of NeuroMove helped me find connections
I did not know I had.  NeuroMove stimulated my muscles AND helped me retrain my brain.

How Long Do You Want to Stay in Rehab?

When I was an OT professor I used to occasionally run into a former student who said "You did not teach me to do ........."  I always responded "How many years did you want to stay in school?"  So when I hear stroke survivors complaining about what they did not learn in rehab my response is the same.  How many months were you willing to stay in the rehab hospital?  And to be fair, clients and therapists do not know immediately after a stroke what challenges clients will face as they resume old activities that were too difficult at discharge time.

What makes me sad is that when new challenges arise, stroke survivors do not know they can ask a doctor to write a prescription for a new round of out-patient therapy.  I have never had a doctor refuse this request.  The hard part is finding a therapist.  It took repeated tries to find a PT that I like and respect. I am fortunate because the hospital where I went for in-patient rehab hires above average OTs.

One caution is that every out-patient therapist I have had never stops treating me until my health insurance runs out.  So I always take a list of specific concerns to my first session.  Therapists look surprised when I say I am ready to be discharged because my list of concerns have been addressed.

Some High Tech Designers Don't Get It

There is lots of news about how technology helps stroke survivors recover the use of their affected hand.  Here is what drives me crazy.  Watch this video of a high tech device and look at more than the flashy movements on the screen and the client's happy face.  Look at what the woman's hand is doing.

1.  Media reports and even research articles do not explain that using technology is only the beginning.  The measure of success is to have a person's hand manipulate objects - not touch objects on a screen so the computer makes them blow up or move.  My photos show there are much cheaper ways to show clients they may have hand function when shoulder and elbow muscles are weak.  Instead of grasping objects resting on a table, clients can rest objects in their lap. Clients can stand to reduce how far weak shoulder and elbow muscles have to lift an arm which is remarkably heavy.

2.  Cherry picking high level clients to demonstrate technology is misleading.  I am suspicious when a stroke survivor in a video progresses from holding a cylinder-shaped Wii controller to grasping small objects between the tips of their thumb and index finger.  Dramatic changes imply that technology can produce full recovery which is not true for many stroke survivors. A meta-analysis of 44 studies done on 1362 subjects found that robot-assisted therapy improved only arm movement (1).

The Bottom Line:   Promotional material for technology is often dishonest about the ton of work clients must do to close the gap between what the computer can do to an image on the screen and what clients want their hand to do with objects.

1. Veerbeck J, Langbroek-Amersfoort A, Wegen E, Meskers C, Kwakkei G. Effects of robot-
    assisted therapy for the upper limb after stroke.  Neurorehabilitation and Neural Repair. Sept
    5, 2016, doi,10.1177/545068316666957.

90% of Strokes Are Not Preventable

Every time I read an article or web page that says 90% of strokes are preventable I get angry.  Research shows that decades before a cardiovascular event, blood vessels in the heart and brain are silently attacked without producing symptoms that would not alarm a doctor.  Inflammation attacks the lining of blood vessels (1) and cholesterol builds up plaque in blood vessels.  I had a stroke because plaque narrowed the right vertebral in my neck which supplies blood to the back of the brain.  A stroke that affects the back of the brain produces signs that people are not taught to recognize, like a sudden onset of poor vision or balance.  I have lost track of how many doctors who told me my sudden onset of poor balance was caused by an ear infection.

The vertebral artery curves as is threads its way through the neck bones so it is not a candidate for a stent or passing an instrument into the blood vessel to suck out a clot. Until science can find a way to stop the damage to blood vessels caused by silent inflammation and plaque buildup, strokes are not going to be 90% preventable.

1. Brudey, C et al. Autonomic and inflammatory consequences of posttraumatic stress disorder and
    the link to cardiovascular disease. Am J Physiol Regul Integr Comp Physiol. 2015;309(4):R315-
    R321.

Dysarthria is More Than Slurred Speech

I had a stroke in the pons which connects the brain to the spinal cord.  The pons contains the bridge to the cerebellum which controls coordination.  The inability to coordinate muscles of my lips, cheeks, and tongue made my speech severely slurred (dysarthria).  The good news is that I never lost the ability to understand what people were saying.  The bad news is that people could not understand me. 

Incoordination of my diaphragm which controls breathing also made speaking difficult.  To speak you have to let your breath out slowly.  At first I exhaled explosively in one big gasp.  I had to repeatedly take extra breaths to finish even one sentence.  I gradually regained the ability to say more before running out of breath.  It is still tiring to speak in a group because I have to take deep breaths to be heard.  Thankfully people never have trouble understanding me on the telephone.  I speak into an ear bud so I never have to raise my voice which requires more air.

My dysarthria has never fully disappeared.  When I am tired my speech is still somewhat slurred.
I know this because people start staring at my mouth and say "What?" after I speak.  Then I have to remind myself to take a full breathe because I am speaking too softly.  I asked for help in the grocery store last night.  The woman who helped me looked at me like I was retarded.  After she left, I realized I was incomprehensible because I was speaking so softly.