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 -

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 so much 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 is a Disaster

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.  Aides are doing what parents do to get their children out of the house in the morning.  Aides and parents do things people could do for themselves IF they had enough time.  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.

June 16, 2015

A Stroke Turned Me into a Lizard

I used to be a warm-blooded mammal who could regulate her body temperature - sweating when hot and generating body heat when cold.  A stroke turned me into a cold-blooded lizard whose body temperature is controlled by my environment.  There are many centers that control body temperature so I will never know what is out of whack (e.g. the hypothalamus in the brain that monitors body temperature, epinephrine excreted by the adrenal gland that increases body heat, etc.).

In late May and early June temperatures fluctuated between 40 degrees (F) at night to 80 degrees during the day.  This is not normal spring weather for New Jersey.  If I forgot to switch from air conditioning (AC) to heat at bed time I would wake up shivering.  I was covered by an extra blanket, but the cold air around my head was enough to lower my body temperature.  When I got up to turn on the heat, my house was 62 degrees.  My Scottish ancestors lived 700 miles from the Artic Circle so I used to have a body that was genetically engineered for cold weather.  When it got to 80 degrees my body overreacted on the hemiplegic (paralyzed) side.  Sweat started pouring from my temple on the hemiplegic side of my face, but not on the sound side.  I wiped off the sweat repeatedly so people would not see sweat streaming down my face.  My hemiplegic foot became red and hot.  It was scary to know my body could not cope with these drastic 24 hour fluctuations.

Bottom Line: Poor temperature control is like fatigue - an invisible deficit I have to manage.

June 4, 2015

Starting or Shutting Down Conversations

When an oncologist (cancer specialist) says "this drug has a 70% chance of working" clients have hope as long as they do not think about what is left unsaid.  Doctors often do not know why some people do not respond to a drug.  Doctors also cannot predict how a brain will reorganize after a stroke.  Therapists can tell if treatment is producing change.  What is unclear is if that progress will have a significant effect.  It is easy for oncologists to measure the desired outcome -- either a tumor shrinks or it doesn't.  How much change has to occur after a stroke to declare rehab a success is more subjective -- it depends on what the client considers valuable and what his or her life situation demands.

Therapists who answer a question with "all strokes are different" may shut down the conversation and waste an opportunity to ask clients what they want.  Therapists can plan how to achieve progress, but clients know about their personal situation that answers "Why I am doing this?"  Questions can be as simple as "What do you want to do when you get home?"  I had roommates who watched loud, violent TV shows in the evening so I could not wait to get home to my quiet bedroom.  Clients and caregivers may not answer the 1st time they are asked what they want, but it is important to plant the idea that tackling meaningful goals can significantly affect the outcome.  Orthopedic surgeons are beginning to acknowledge this truth by shifting their focus from what the doctor views as success to what the client views as success (1).  Knowing my in-patient, home health, and out-patients OTs were addressing my current concerns helped me focus instead of obsessing about long-term outcomes.  

1.  Kirschenbaum, Ira. A surgeon's 20-year perspective of orthopedics.  Accessed
     May 29, 2015.

May 26, 2015

Smart Phones and Stroke, Part 1

Part 1 is about how a stroke limits what I can do with a smart phone and how I feel about it. 

I do not have to worry about falling while staring at my smart phone as I walk.  My one good hand is busy controlling the cane I walk with due to my poor balance.

My sitting balance is not as good this guy on the boat.  I do not have to worry about missing a whale because I cannot stop staring at my smart phone. 

I use my one good hand to hold the spinner knob that controls the steering wheel.  Letting go of the spinner knob to use my phone would be a new definition of hands-free driving.

I can use my smart phone to ignore people.  However, after my stroke visiting with others is such a treat that I have never done it.  Years ago I read a science fiction book about a time when people interacted only as 3-D holograms.  Anyone who craved face-to-face human contact was considered mentally ill.    I remember thinking I would be dead before technology made this future happen.  Then I saw eight twenty-somethings playing with their smart phones after they finished eating in a restaurant.  The zone of silence was eerie. 

I am still learning how to take photos with my smart phone.  The touch screen is so sensitive that the phone takes seven copies of the same picture before I can take my thumb off the button.  My four other fingers struggle to cradle the phone.  I am learning to put less pressure on the screen and remove my thumb more quickly, but I still love my camera that is perfect for a stroke survivor.

May 17, 2015

PoNS Inspired Therapy Update

This is an update to my post PoNS Inspired Therapy.  I am thrilled to feel changes since I started in March to gently brush my tongue with a soft toothbrush.  Instead of feeling numb, the hemiplegic (paralyzed) side of my tongue feels slightly irritable and brushing now produces a small amount of saliva.  The sound side of my tongue feels less hypersensitive.  I am blown away by the fact that neuroplasticity is still present eleven years after my stroke. 

Brief tongue brushing does not replicate the several minutes of electrical tongue stimulation the PoNS device provides so I started singing before I take my pills to wake up my tongue even more.  I enjoy accompanying myself on an electric piano.  I use my sound hand to play the high notes in the treble clef.  My voice sounds terrible, but I enjoy using the musical phrasing I learned as a child - singing softer or louder, slower or faster - to convey the emotional message of a song.  My beloved Actto bookrest holds my music.

Last week I spontaneously started putting food on the sound side of my mouth, biting off a tiny fragment, and using my tongue to push the food to the hemiplegic side to chew.  This exquisitely delicate tongue control reminded me of the early days after my stroke when food got caught on the hemiplegic side of my mouth.  To know if a lump of food was stuck between my teeth and cheek, my sound hand had to touch my cheek.  I had no control over the right side of my tongue so I had to use my finger to pull the food back to my sound side.  Yuk! 

Chewing on my hemiplegic side addresses a long-term hope.  After chewing, the hemiplegic side of my tongue gets lots of practice pushing food to the back of my throat which initiates the swallowing reflex.  I hope this will improve my ability to swallow pills.