August 31, 2015

Exhaustion is Not an Illusion

                                            This post is for caregivers as well as stroke survivors
People who have not experienced a catastrophe think they have lots of time to do what they want.  They also think they will always have lots of energy.  A stroke destroyed the illusion that I have time and energy to waste.  I cannot waste precious energy searching my entire house for an object.  For me, organization is a way to save time and energy rather than a perfectionist's goal that drives me crazy.   

Here are some examples of when I can get away with being disorganized.  I do not mind spending a few minutes searching through a box of Christmas decorations or looking for a hand tool in a small tool box.  I keep certain foods in the door of the refrigerator, but I do not mind if they slide around to different positions.  I have very few music CDs so I keep them in two shoe boxes - one for classical and one for everything else.  I do not buy much canned food so it would not be worth it to turn all the cans so every label faces the same direction. 

However, it is good to be super-organized when I own hundreds of things.  I am meticulous about saving computer files in separate folders like Finances and Photos so it is easy to retrieve a specific file.  I used to own at least a hundred fiction books.  To find books in my library, I alphabetized books by author.  To stop buying extra copies of a book when I went shopping,
I carried a folded sheet of book titles organized by author in my purse.  When I froze lots of vegetables and meat in an upright freezer, my food was meticulously organized so I did not
have to move lots of packages to find the one I wanted. 

Bottom Line: For me organization is a choice rather than a compulsion that makes me feel guilty.

August 25, 2015

Trapping Objects Stops Me from Growling at People

My frustration began in the hospital.  I did not ask an aide to hand me a wad of toilet paper because I did not want her there to watch me wipe myself.  Unfortunately, when my sound hand tore paper off the roll the paper kept unrolling.  If you have ever had a kitten or toddler who thinks it fun to unroll toilet paper until there is a pool of paper on the floor you know how aggravated I felt. My aggravation turned to RAGE when I saw piles of toilet paper on the floor several times a day for
3 months.  I was thrilled when my hemiplegic (paralyzed) arm got strong enough so my fist could press down on my thigh to trap a wad of toilet paper.  Finally, the roll stayed still as my sound hand tore the paper.

Trapping makes me independent in 21 ADLs. Here are three more problems I solve by leaning on my fisted hemiplegic hand.   1) My fisted hand holds my checkbook open while my sound hand writes.  2) Trapping keeps credit card receipts flat when they curl up while I am signing them.  3) I open mail by trapping envelopes while standing at the kitchen table.  At first the letter opener pulled the envelope out from under my hemiplegic hand so I folded the non-slip placemat over the envelope (photo). The muscle that keeps my elbow straight (triceps) is stronger now so putting envelopes on top of the placemat creates enough friction to help me resist the force created by the letter opener. 

Being frustrated 30 times a day is exhausting for everyone.  Who would you rather live with - someone who is repeatedly frustrated or someone who feels smug all day?   I would not want to live with me if I had been grinding my teeth since my stroke in 2004.  Frustration gets progressively worse when I know I will have to bear it every day.  I  use any strategy that improves my mood and saves energy by lowering my frustration level.  Grrrrrr!

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.