July 4, 2015

Why I Do Not Do Social Media

I post lots of photos on my blog to illustrate what I am talking about.  I type my name and the year over every photo so people who want to present my photos as their own have to work harder.  My 2nd layer of defense is to avoid social media.

Instagram.  An artist had a gallery showing in New York City.  He got all the photos off Instagram.   When he sold one photo for thousands of dollars, he was sued by the person who posted that photo on Instagram.  The judge ruled in favor of the artist because everything posted on the web is "in the public domain."

Facebook.  I do not respond to friend requests or e-mail messages I get from Facebook.  I do not use Facebook because it is difficult for users to maintain their privacy.  Mark Zuckerberg said at a D8 technology conference in 2010 that when he launches "new products" they come with company set privacy settings and links.  Mark's response prompted the interviewer to ask why users should have to back out of new privacy settings they do not want every time Facebook changes.  There are so many stories in the news about people who regret who sees what they posted on Facebook.

LinkedIn. For those who want to connect with me on LinkedIn, I have deleted my LinkedIn account.

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.
     http://orthostreams.com/2015/04/a-surgeons-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.  

May 5, 2015

Resting Splints Revisited

When I joined the staff of a nursing home as their first OT I opened a stroke survivor's hand after her fingernails grew into her palm because the nursing staff did not know how to inhibit her high muscle tone.  I remember that visual image when I read that stroke survivors get no benefit from wearing resting splints.  This conclusion is based on studies that looked only at hard plastic splints which are static (does not move).  After my spasticity broke two hard plastic splints, I bought a dynamic (moves) resting splint called SaeboStretch.  It bends when my muscle tone increases and goes back to its original shape when my muscles relax. 

Andringa studied a dynamic resting hand splint made by Ultraflex in Pottstown, Pennsylvania (1).  Six stroke survivors wore the dynamic Ultraflex splint for six hours during the day for six months.  Subjects reported significantly less pain at 3 and 6 months (p< 0.05).  Passive wrist extension
did not increase significantly at 3 months but was significantly greater at 6 months (p< 0.05). Subjects wore the Ultraflex splint during the day so forced disuse may have slowed recovery.  

One of Andringa's subjects illustrated the ultimate challenge of hand splinting.  He stopped wearing the splint after 4 months because it did not meet his expectations of what he thought the splint would do (1).  When clients are not told what they can expect when they wear a hand splint they are free to imagine the outcome.  Read the rationales for splinting in Are Resting Splints a Waste of Money?

 1. Andringa A, Ingrid G, Van de Port, Meijer J. Tolerance and effectiveness of a new dynamic
    hand-wrist orthosis in chronic stroke patients. NeuroRehabilitation. 2013;33(2):225-231.

April 26, 2015

A Physiatrist Has My Back

When I was an OT I did not realize stroke survivors deal with challenges for years after treatment ends.  Eleven years after my stroke I am grateful I still have access to a physiatrist (doctor who specializes in rehabilitation medicine).  (1) Dr. Terry, a physiatrist, has a deep understanding of my situation.  He listened attentively when I expressed concern about the increasing tightness in my hemiplegic (paralyzed) hand.  Instead of ignoring my concern he talked about when muscle tightness helps or interferes with function.  I did not have to explain why I wanted to go back to OT.  A physiatrist is one of the reasons I do not go downhill when a new challenge appears.

Here are four more reasons to see a physiatrist.  (2)  Regular in-patient meetings mean the staff have to think clearly about my case in order to present it to the physiatrist and to each other.
(3)  Physiatrists know how hard clients work to become independent.  Dr. Terry is one of the few doctors who does not try to undress me like I am a child.  After he asked to see my hemiplegic foot he hesitated for a moment.  This gave me a chance to take off my leg brace.  (4)  He asks about my personal life because he sees me as more than a paralyzed arm and leg.  (5) He knows the buzz words insurance company adjustors are looking for.  He has never given my insurance company an excuse to deny coverage for services he has ordered. 

Kinoshita compared outcomes for stroke survivors whose care was coordinated by a physiatrist versus other types of physicians (1).  The study found that stroke survivors whose care was coordinated by a physiatrist had significantly more frequent regular conferencing (see #2 above), had significantly higher scores on the Functional Independence Measure (p< .005), and were more likely to be discharged to their home (p< .005).  This is a huge advantage.

1. Kinoshita S, Kakuda W, Momosaki R, Yamada N, Sugawara H, Watanabe S, Abo M. Clinical
    management provided by board-certified physiatrists in early rehabilitation is a significant
    determinant of functional improvement in acute stroke patients.  Journal of Stroke &
    Cerebrovascular Diseases. 2015;24(5):1019-1024.

April 14, 2015

Chedoke Arm and Hand Activity Inventory

The Chedoke is a bimanual hand test that captures lots of baseline data because it lets clients use the affected hand hold the jar or turn the lid (1).  Yet OTs who used the Chedoke wondered why they needed another ADL test (2).  One OT said "So am I really that worried about exactly how much effort the other one [hand] is putting in [to completing the task]?"  Ignoring whether the affected hand does any work during a task defeats the purpose of working on recovery (see photo).  When clients get to a step that requires two hands we deserve a test that gives us credit for the ability to transfer what we gained with exercise.

Unfortunately, OTs who gave the Chedoke to stroke survivors concluded it has too many high level tasks for clients with severe motor impairments (2, 3). Chedoke tasks are draw line with a ruler, pour glass of water, button, zip, cut with knife and fork, put toothpaste on toothbrush, dial 911, clean eyeglasses, open jar, dry back with towel, wring out cloth, carry bag up stairs, and place container on table. This conclusion is disappointing because many advances in stroke rehab target clients who do not regain hand function with traditional treatment.  How can researchers test the efficacy of new treatment approaches if they use tests with poor basements that cannot show what clients can do when hand movement first emerges?

After a stroke I discovered easier bimanual ADL tasks (4).  Level 3 is being able to reach out and hold an object still as the other hand manipulates the object.  Able-bodied adults do this dozens of time a day but take this skill for granted which is why it never appears on hand evaluations.
Levels 1 & 2 employ simple strategies able-bodied adults never use.  For example, have the sound hand place a deodorant bottle in the affected hand which places the bottle on the thigh and holds it still as the sound hand removes the cap.  Hand-to-hand transfers done close to the body are easier than opening the hand as you struggle to lift a heavy arm to table top height.  See nine easier bimanual tasks in Hand Evaluations at the top of my blog. 

April 3, 2015

Garbage Can Send You to a Nursing Home

I live alone so I cannot stay in my home if stinky garbage piles up on my patio.  People would call the health department.  After my stroke a neighbor took my garbage to the curb for a few months.  However, I do not want neighbors to think if they help me for a short while they have volunteered for life.  Paying a nursing home $8,000 a month is a really expensive way to get rid of garbage (Genworth Survey of Long-Term Care).  Here are adaptive devices that make me independent.

Garbage. I use Hefty Ultimate garbage bags.  They have an elastic drawstring built into the top of the bag which grips the top of the garbage can in my kitchen.  I place the full garbage bag on the seat of a kitchen chair so I do not have to lean down very far to tie a knot in the drawstring with my teeth and sound hand.  Once the bag is tightly sealed I kick it down my front steps without any spills.  I put the bag in a rolling garbage can to take the garbage to the curb.  I learned not to push the garbage can by tilting the can and rolling it on the wheels.  The first time I did this I almost fell when the garbage can got away from me.  By putting the wheels in front (see arrow) I can push it like a rolling walker.  CAUTION: I used to drag a cane in my hemiplegic hand so I could walk back to the house.  Now my balance is good enough to walk back without a cane.

Recycling. My town recycles glass, metal, and plastic containers.  The short yellow container I was given is too heavy and awkward for me to carry to the curb.  The photo shows the Devault Plant Dolly.  Six casters under the dolly make it roll smoothly.  To pull the dolly back to the house, I threaded a long strap through the central hole that is designed to let plants drain.