August 27, 2019

Going to the Bathroom at Night

A friend who works with the elderly living at home told me about  the falls that happen when her clients go to the bathroom at night.  Before I left the rehab center my OT suggested I use a bedside commode at night to be safe.   Since I live alone I think it would be dangerous for me to drag the bucket to the toilet to empty it in the morning.  
A fall in the bathroom happened a few days after I got home from rehab.  The big toe on my hemiplegic foot is now crooked because I tore ligaments.  Thank goodness I learned how to go to the bathroom safely at night when I am not wearing my brace.  After my 2nd stroke I went home with a walker.  I progressed to walking with a quad cane that has 4 feet during the day, but I still used the walker in the bathroom at night.  I did not mind that the walker slowed me down because
I was half awake when I got up at night anyway.  I progressed to a single point cane during the day, but now I use the quad cane at night to get to the bathroom.   

Bottom Line: I keep every walking aid I buy so I can use the more conservative device at night. 
I do not want to have an injury that would put me in a wheelchair.  Pushing a wheelchair with one arm and one leg on linoleum in wide halls in the hospital is hard.  I do not want to find out how hard it is to push a wheelchair on carpeting in my home.  I also do not want to end up in a long-term care facility because a fall does something much worse than break the ligaments in my big toe.

August 20, 2019

Pain Scales

Getting clearance for knee surgery has been repeatedly delayed.  I used some of my time to document my pain levels.  Pain is rated on a 10 point scale.  Dividing pain into mild, moderate,
and severe is not enough to identify 10 different levels.  Noting whether pain was intermittent or constant helped.  It also helped to document when pain disrupted my ability to do Activities of Daily Living (ADLs) and how much pain reliever I took.  At the upper range of pain, documenting emotional distress added further refinement.  Here are the 10 levels of pain I have experienced over a lifetime.

1.  I have to think to recall if I had mild / intermittent pain during the day
2 . I am spontaneously aware of mild / intermittent pain throughout the day
3.  Mild / Constant pain.  1000 mg Tylenol at bedtime.  Must do some ADL tasks differently
     (e.g. walk down stairs backwards)
4.  Severe but brief pain made me afraid I could not finish an ADL task (e.g. thought about leaving
     filled cart in grocery store and going home).
5.  Moderate / Intermittent pain.  Added 500 mg Tylenol in a.m. because I ache before I get up
6.  Moderate / Constant pain makes me achy and exhausted by the end of the day.
     Worried about what 9 months of Tylenol is doing to my liver.
7.  I cannot tolerate constant moderate pain much longer.  Irritable!! 
     Need 2 attempts to do some ADL tasks (e.g. stand up).
8.  Severe pain makes me say "Ow that hurts" but I am able to remain still.
9.  Severe pain makes me Yell "OW" and I move or collapse involuntarily.
10. Excruciating pain: Not able to make any sound because I cannot exhale or inhale.

August 11, 2019

Handicapped Parking

My handicapped parking tag was missing when I got my car back from the auto repair shop.
It was not in the pocket on the driver's side door or under the seats or on the floor.  I know where handicapped parking is for every store I visit so I am really IRRITATED because I keep forgetting to look for an empty spot in regular parking.  I am irritated I have to go to the Department of Motor Vehicles (DMV)  and sign a letter in front of a DMV employee to get a replacement hang tag.

Handicapped parking is more than being close to the door of a store.  The wider handicapped space is very helpful.  It is difficult to load purchases in the car because a regular parking space leaves very little room to open the car door.  Able-bodied people solve this problem by leaving their shopping cart at the back of their vehicle and walking the bags to the open car door.  I have poor balance so walking with a bag in my sound hand instead of a cane is a fall hazard for me.  The wider space lets me pull the cart up to my open car door to unload my bags.

A regular size parking space is difficult for another reason.  It is hard to get in and out of a car when I can open my car door only two feet.  This small opening makes it hard for me to maneuver a heavy leg brace that will not let me point my toes.  A wide handicapped parking space is especially important for someone in a wheelchair.  They need the car door to open widely so they can slide from their wheelchair onto the car seat.

August 3, 2019

Qualifying for Disability Benefits

I was surprised to learn that having a stroke was not enough to establish my need for disability benefits.  When I had an interview with paratransit services they asked me to give examples of why I could not take a bus.  My sound hand is not free because it has to manage a cane and my hemiplegic hand cannot insert money in the fare box.  If I do not sit down quickly, the lurching movement of the bus would make me fall because I have poor balance.

Approval for social security disability (SSD) also required explaining how specific deficits interfered with my ability to do specific job related tasks.  I could not demonstrate and help occupational students perform bimanual therapeutic techniques correctly.  The doctor who filled out his section of the SSD application form was the physiatrist who managed my care in the rehab hospital.  He knew a great deal about my inability to perform functional tasks because he heard therapists talk about me in team meetings.  Other kinds of doctors including neurologists do not evaluate or document the loss of independence that is needed to qualify for disability benefits.