October 5, 2015

It is Hurricane Season Again

September was beautiful but my thoughts go to 2011 and 2012 when New Jersey was hit by Hurricanes Irene and Sandy.  Here is my consolidated list of bolded To-Do items just in case.

Shop.  Put gas in my car and get cash because gas pumps and ATM machines do not work without electricity.  I have three flashlights and a lantern, but never remember how old the batteries are.  Buy seven D batteries before they all gone.  I cannot walk in the dark so if my flashlight batteries die I have to crawl.  Aiming a flashlight at a task is difficult so I need a lantern. 
Buy ice.  I can put food in a cooler when the electricity goes out.  Buy bottled water, peanut butter, bread, cereal, and milk.  Buy canned food.  I can use an Oxo Goodgrips can opener when the electricity goes out.  My sound hand squeezes the two handles to lock them shut on the can, turns the crank, and pushes the grey button to release the can opener.  My hemiplegic hand lightly holds the closed handles to keep the can from sliding around.  The magnet in the can opener lifts the lid.  

Prep Home.  Charge my cell phone.  Charge my iPod so I will have a radio to get the news.  Put new batteries in flashlights and lantern.  Fill empty containers with water and place them in my bathtub so I can flush my toilet in case the water is cut off.  Run the dishwasher and do laundry while I still have electricity.  Put garbage cans in the shed so the wind will not blow them away.

If I Need to Evacuate.  Pack a rolling suitcase with medicine, soap, a small towel, clothes, toothpaste, and toothbrush.  Put my flash drive, checkbook, safety deposit box key, and contact information for my home owners insurance in my purse.  Pack stamps, return labels, envelopes, and business addresses so I can pay bills by mail (no Internet)Bring a blanket to the shelter.  A blanket takes up half my suitcase so pack carefully.  I can carry a pillow under my hemiplegic arm, but a blanket that keeps sliding is too much for this arm to handle. 

Put adapted equipment that will be hard to replace in trunk of my car.  Pack the camera I use for this blog which I can operate one-handed, my Saebo splints, an Asus notebook that is small enough for me to handle during Power Point presentations, and rain and winter coats I can zip.  My friends do not have a handicapped bathroom so put my folding shower stool in a garment bag.  Find a better way to transport software CDs (e.g. Word) that I cannot afford to replace if I lose my computer. 

September 27, 2015

Frustration is a Promise Breaker and Unsafe

Frustration is emotionally draining.  I am talking about 15 seconds of frustration as you struggle to pull up your pants one-handed every time you go to the bathroom and 15+ minutes of frustration while cutting up food.  Fatigue is common after a stroke so the energy that frustration uses is not good.  Two year olds recover quickly from a tantrum because they sleep like the dead.  I watched a video of a young child sleeping peacefully through the shriek of a smoke detector.  If frustration exhausts stroke survivors, the person they made a promise to is going to be disappointed.  

Frustration can also be unsafe.  Safety awareness goes out the window as frustration mounts.  Grunting and concentrating fiercely for ten minutes while struggling to open my hand during an OT session is one thing.  Cutting off a piece of my finger is another.  Dropping a therapy ball is not the same thing as dropping a knife.  In my opinion, activities that require knives or high heat should be done by working smarter instead of harder. See one solution below.


I avoid frustration and increase safety when cutting up food.  For example, I cut up an orange using a Swedish Deluxe cutting board that has a vise.

Graham Drummand has arthritis.  He designed a cutting board that gives him control even though he is unable to fully close his hand around the knife handle or the food.  I am sure frustration and safety issues motivated him to design the cutting board below.


P.S.  I struggled to peel an orange with short fingernails when I had two good hands.  I could have avoided a lot of frustration if I had seen this video. https://www.youtube.com/watch?v=6fYpziFsC10&feature=youtu.be 

September 16, 2015

Walking in the Dark, Part 2

I went to a great concert with a friend.  The old auditorium was beautiful.  However, we had to walk four blocks to the car in the dark.  The street lighting was so poor in certain sections that I could barely see the sidewalk.  The darkness was intensified by the low light of a new moon.  Decreased light is a fall hazard for me because my stroke damaged the bridge to the cerebellum (pons) that controls balance.  I learned I stay vertical by using my vision when I toured a huge Christmas light display with my brother three years ago.  This experience gave me the foresight to prevent a fall by asking my friend if I could put my sound hand on her shoulder as we walked.  When I maintain physical contact with an object that is vertical I know I am vertical.

The four block walk to the car was a wake-up call.  I have let my walking endurance decline so my hemiplegic (paralyzed) leg tired quickly.  I started scuffing my toe because I did not lift my leg high enough.  My walking improved when I handed my cane to my friend.  My hemiplegic hand can usually hold onto my cane while I drag the rubber tip on the ground - but not tonight.

Bottom Line: Once again I learned that mobility in the community = motor control + problem solving.

September 4, 2015

OT Fails with Stroke Survivors in Care-Homes

Professor Sackley who teaches PT at the University of East Anglia in England conducted a study that provided 2500 hours of OT to 1042 stroke survivors in nursing homes (1).  The treatment
did not produce a significant change.  This study is disappointing for the following reasons.

1.  The study used a 50 year old outcome measure called the Barthel Index of ADLs.  The Barthel has 3 levels: zero = dependent, one = needs help, and two = independent.  People who are frail enough to be in a nursing home are unlikely to become totally independent.  Other researchers have used ADL tests that are sensitive to small changes, like the Functional Independence Measure which has seven levels of assistance.  

2.  Another outcome measure was the Rivermead Mobility Index.  Having worked in a nursing home I know that the nursing staff do not have a stake in encouraging residents to get out of bed independently or walk unassisted.  Decreased mobility makes it easier to keep residents safe with fewer staff.  No increase in mobility in a nursing home is not surprising.

3.  The average treatment was only 5.1 sessions and only 15% of the time was spend on ADL and mobility training which the outcome measures evaluated.  The majority of time was spent on evaluation and "communication."  

Bottom Line: Professor Sackley said "we need to rethink what is needed for these patients."
I agree.  Dressing and walking 10 meters are "shoulds" that people do to get the life they want.   People with chronic conditions need the incentive of participating in activities they enjoy to sustain their commitment to action.  Asking nursing home residents "What activity makes you happy or lifts your spirits?" has to come before teaching them the skills they need to participate in an activity.

(1) OT Fails in Care-Home Stroke Patients presented at the XXIII European Stroke Conference on
      May 6-9, 2014, Nice, France.

August 25, 2015

My Conclusion About Swallowing Training

Impaired swallowing has lingered for 11 years after my stroke.  So I am thrilled that 3 strategies improved my ability to swallow - neck elongation, increased sensory awareness, and strengthening hip adductor muscles (see 8/15/15 post about these muscles).

#1.  Many ST websites recommend making swallowing safer by lowering the chin towards the chest.  However, many people sit or stand with their head jutting in front of their trunk (see arrow).  Lowering the chin when the head is in this forward position may collapse throat structures.  This "chin tucked" strategy never stopped pills from going into the opening for my lungs (trachea).

Instead I make my neck as long as possible by making sure my head is in a straight line with my trunk before I drop my chin slightly.  This maneuver helps send pills down my esophagus to my stomach.

#2.  Stroking my tongue with a soft toothbrush after I read about PONs therapy taught me the hemiplegic (paralyzed) side of my tongue was numb.  I decided to start chewing food on the hemiplegic side of my mouth.  This makes me swallow more symmetrically which makes me more aware of when food touches the hemiplegic side of my throat.  This greater sensory awareness tells me when I swallow food while I am taking a breath.

#3.  When squeezing a ball between my knees I felt increased muscle tone in my throat muscles. 
I know muscle tone cascades down a limb from the shoulder to the hand.  It seems reasonable that muscle tone of midline muscles would cascade up from the pelvic floor.  Now I can quickly tighten my throat to stop food that slips to the back of my throat when I am taking a breath.  This gives my tongue time to shove the food back to the front of my mouth.  Authors I quoted in my post on urinary incontinence said midline stability requires coordination among three "diaphragms" -
the pelvic floor, the diaphragm we breath with, and throat muscles. 

Bottom Line:  Swallowing training may require an interdisciplinary approach. 

August 15, 2015

A Secret I Have Kept for 11 Years

There is a stroke issue I have never shared with doctors, family, or friends - urinary incontinence.
After I feel the urge to urinate, I have 5 minutes to get to a toilet before I begin to slowly leak urine no matter how hard I squeeze my muscles.  I did Kegel exercises that tighten the muscles of the pelvic floor, but they did not make the problem go away. So I managed this problem by memorizing the location of every bathroom in the places I visit in the community.  I do not shop or sit down for a performance until I know where the bathroom is.

Then I came across a blog post that takes a different approach to urinary incontinence - www.eastwestrehab.org/index.php/blog/entry/addendum_to_ot_practice_article/

The authors say "focusing on the [pelvic] floor does not take into account the floor's synergistic relationship with the adductor muscles."  This got my attention because I have weak hip adductor muscles
(see arrow in diagram).  The authors say "hip adductors attach to the pelvis ..... and strongly influence the urogenital muscles of the pelvic floor."  They suggest strengthening the adductor muscles by squeezing a ball between bent knees while lying on your back.

Bottom Line: I started doing the ball exercise and discovered 2 things.  The window I have to find a toilet has increased from 5 to 10 minutes. 
If I feel the urine start to flow I can stop it long enough to get to the toilet by picturing myself squeezing the ball between my knees.

I'm amazed by my ability to regain another skill 11 years after my stroke.

August 3, 2015

Handicapped Bathrooms Are Badly Designed

Handicapped bathrooms in hotels I have used since my stroke are poorly designed.  The most common error I have seen is placing the towel rack on a wall ten feet away from the tub across the extra large bathroom.  It may be dangerous for a companion to turn his or her back on a disabled person and walk away to retrieve a towel.  I solved this problem by dragging the luggage rack into the bathroom.  I placed my towel and bathrobe on the rack where I could reach them while sitting on my folding shower stool.  An inexpensive solution is to place hooks near the bathtub at wheelchair height.

I ran into 2 unique problems in one hotel handicapped bathroom. 1)  The shower curtain was so short and hung so far away from the tub that I could look down and see a four inch wide strip of the bathroom floor.  A wet floor is a Fall Hazard.  Before I got in the tub I did my best to soak up the water by putting a bath towel on the floor.  An inexpensive solution is to purchase longer shower curtains that can be tucked inside the bathtub.
2)  The removable shower head hanging down (photo on left) was almost impossible to use.  When I detached it to use in sitting, the shower head barely reached me because it was mounted so high on the wall.  I turned off the water while soaping up because letting the nozzle hang free made it to point outwards (photo on right).  I was not able to keep all the spray inside the tub.  A wet floor is a Fall Hazard.

The extra long shower hose did not compensate for the high wall mount the plumber used.  I do not see an easy fix for this problem. 

July 26, 2015

Smart Phones and Stroke, Part 2

Problem. I used a flip phone for years so I could call AAA if my car broke down, but a trip last year to see my brother showed me I need a smart phone.  When I got to my destination the temperature gauge showed my engine was very hot.  I knew the area so I drove to the local Toyota dealer which was closed because it was Sunday.  If I had a smart phone I would have learned that a taxi service was only two miles away.  I could have left my car at the dealer, had a taxi take me back to my hotel, and waited for my brother to arrive the next day.  My brother talked about loaner cars, but they do not have the modification that lets me control the gas pedal with my good left foot. 
I decided to buy a smart phone before I took my next long trip.

Training.  It is a good thing I bought an iPhone several months in advance.  This gave me time to attend free training sessions held by Verizon.  For example, there are multiple ways to delete items in Contacts, Messages, Calendar, Notes, and Photos.  To delete you touch a picture of a trash can at the bottom left or bottom right OR touch the word delete at the bottom right, bottom center,
top right, or right side of the screen.  To make the word delete appear, you may have to touch the word edit, pull an entry to the left, or scroll to the bottom of a file.  The chaos during staff meetings at Apple must be remarkable.  I also needed several months to learn how to use Google and Google maps because using them on an iPhone is different from using them on a computer.  I finally felt comfortable using Google Maps so I was thinking of leaving my Garmin GPS at home until I could not get cell phone reception in a small town near my home.

Outcome.  Going - IF I had used the Weather Channel app while I ate lunch on my 1st day of travel I would have seen an alert that said the rain storm had flash flood warnings.  Instead I got into my car.  The storm delivered such heavy rain that I could not see the car in front of me.  I could have waited out the storm in a McDonald's instead of on the side of the road.  Visiting - My brother and I texted repeatedly so we could meet at his boat and go out to dinner.  Texting with the Siri voice command on a iPhone is easier than texting one-handed on a flip phone.  Coming home - When a severe storm slammed onto my hotel, I used Google maps to change my route home, Google to locate new hotels, and the phone function to cancel old and make new hotel reservations.

Bottom Line.  A smart phone is an essential adaptive device for stroke survivors who travel.

July 16, 2015

Independence is a Myth People Cling To

A stroke forces people to deal with becoming dependent.  Having a stroke helped me realize that independence is a myth.  For example, do you cut your family's hair and change the oil in your car? When able-bodied people rely on others they call it interdependence.  Production companies cash in on the myth that able-bodied people are independent by making reality TV shows about people living in remote parts of Alaska. 

TV shows a man eating dinner, but they do not show him buying the bullets that killed the animal, the knife that skinned the animal, and the salt, hot sauce, and cooking oil that made the meal tasty. TV shows a wife standing in her garden talking about putting up vegetables for the winter, but they do not show her taking out dozens of glass jars with twist-on lids and the large pot she needs to heat the jars of food so she does not kill her family with botulism.  TV shows people riding on snow mobiles or dog sleds, but they do not show them buying gas, intricate dog harnesses, and nails to make a sled.  Then there is the technology that makes living in the wild possible - boots and socks. These people are not living independently.  They just shop less than we do.

When I was an OT, one of my goals was to get clients to a 7 on the Functional Independence Measure (FIM).  Seven on the FIM = independence minus the skills needed to set up and clean up an ADL task.  However, reality TV proves by clever omission that true independence does not exist.  Reality TV also shows that contributing everything you can to share the workload makes a difference.  Requiring assistance means a stroke survivor still has ways to be helpful.  My goal now is to be as independent as I can and graciously accept the kindness of others.  Click on the volunteer label below to see posts about my helpful angels.

P.S.   Why did the people who created the FIM think omitting set up and clean up was a valid way to define independence?  Dressing begins with gathering your clothes.  Showering ends with hanging up a damp towel.  Laundry begins with safely sorting clothing by color.  Therapists set up and clean up for clients to keep up with the fast paced therapy schedule so teaching these extra steps may fall below their radar.  Caregivers do not have aides who can step in when a loved one cannot begin or end a task.  Every bit of help a stroke survivor gives his or her family matters.

June 26, 2015

Toilet Training in Rehab

A friend in rehab fell twice while transferring to the toilet.  I was in this hospital so I know how toileting is managed in this institution.  When I told my PT doing squats improved my balance when I pulled my pants up at the toilet she said she was glad PTs do not toilet training.  OTs evaluate how clients get on and off the toilet, but not how clients handle clothing in the bathroom. Aides are the ones who deal with toileting.  Aides have large caseloads so they get everyone to therapy on time by doing everything for their clients.  Here is why stroke survivors need training to be safe when toileting.

One challenge is handling clothing.  It took me three weeks for my standing balance to improve enough for me to feel safe when I pulled my pants up over my hemiplegic (paralyzed) hip.  I had to twist my trunk to allow my sound to reach the front and back of my hemiplegic hip.  Small weight shifts while rotating my trunk were enough to throw me off balance.  When my skin was damp after a shower or a vigorous therapy session it took repeated tries to get my pants all the way up.

Toileting is also a balance challenge because it requires repeated turning in small spaces while  attention is divided.  Managing a cane, the door, and the toilet interfers with my ability to monitor what my feet are doing and how far from vertical I am.  After I walk into the bathroom I have to turn 180 degrees to close the door.  I want privacy when I use bathrooms in the community (e.g. doctor's office, friend's house, restaurant).  I am facing the door I just closed so I have to turn 180 degrees to walk to the toilet.  When I get to the toilet I have to turn 180 degrees so I can sit down. 
I turn again after I stand up to flush the toilet.  The last 10 seconds of this video shows why I do not want to be sitting when I flush the toilet. 

PTs walk clients in large unobstructed paths in the gym where clients are required to think only about controlling their body.  OTs know about divided attention, but they do not evaluate gait or standing balance in the bathroom because ambulation is PT's domain.  Requiring 24 hour assistance with toileting often leads to a nursing home.  This is a severe consequence.  Different disciplines need to stop worrying about stepping on each others toes.  Therapists need to stop worrying about embarrassing clients by asking them to uncover a private area of the body.