March 29, 2017

Safety Precautions Rocket Me to Independence

Precautions that facilities use to keep people safe propelled me to independence.  In the rehab hospital I made the mistake of wheeling myself out to the patio when I was done with therapy for the day. The aide who was sent to find me said I could not sit outside alone.  When I pointed to people who were sitting alone she whirled my wheelchair around and took me back to my room.  The last time I was dragged inside I was probably three years old.  A psychologist brokered a compromise.  I could sit outside if I came back upstairs and wrote down where I was going on a clipboard. The psychologist said the staff were afraid I would wander off if they let me go outside. Did the aides tell anyone I had been reliably transporting myself to and from therapy for days? 

Safety precautions are good.  The problem is staff who rigidly apply precautions to everyone. 
Did anyone read my chart to learn I had a stroke in the brainstem instead of the brain?  I was treated like my roommate who was so confused she tried to use the TV remote as a telephone.  The staff attached a sensor to me at night to keep me from getting out of bed.  Every time I rolled onto my side I triggered a very loud alarm and had to wait for an aide to come shut it off.  When I finally complained a nurse said they would stop using the sensor if I signed a release form saying they were not liable if I fell out of bed.  How long they would have used it if I had not objected? 

When I toured an assisted living facility I was upset again by procedures designed to keep people safe.   While the director gave me a tour she said 3 or 4 times that "elderly people prefer to have a nurse give them their medication."   If the assisted living staff decided it would be safer if the nurse dispensed my pills, my day would revolve around visits to the nurse because I take pills four times a day.  I saw the nurse handing out pills in a snack area where people who did not want to go to breakfast where waiting.   I am not really living in an apartment if the nurse can open my door with a master key to give me my pills when I decide to sleep in.

Being treated like a senile 95 year old turned out to be a blessing in disguise.  I am not sad that I use a cane and leg brace and print checks with my non-dominant sound hand.  I am grateful that compensatory strategies make me independent enough to live in my own home.

March 22, 2017

Saved by Sheer Dumb Luck

One problem I worried about repeatedly before my knee surgery was stress incontinence.  Coughing or sneezing sometimes produces a small urinary leak that turns into a flood after about 60 seconds.  While waiting for my surgery date I learned sudden knee pain also triggered stress incontinence.  This set off alarm bells in my head.  I regularly get up in the middle of the night to
go to the bathroom and was worried about losing bladder control if I felt sharp knee pain.  I was freaked out about trying to clean urine from my wall-to-wall carpet.

A bedside commode would solve this problem, but I live alone so who is going to empty it??

I cannot carry the bucket in my sound hand because I need that hand to hold a walking aid.  I was saved by serendipity. Before surgery I had placed a laundry basket so I could put dirty clothes in it as I came and went from the bathroom (see door on right side of photo).  During a practice session my friend Hanneke put some water in the bucket.  Feeling the liquid slosh around made the problem real and something made me look at the laundry basket. I knew the bottom of the laundry basket is so smooth that it slides over carpeting like it is on ice.  So I put the commode bucket inside the laundry basket and slid it to the toilet in my bathroom.

While carrying the empty bucket from the toilet to the shower, my sound hand held the bucket and I slid the heel** of my hemiplegic hand along the bathroom counter to keep my balance.  Hanneke suggested I put the bucket on my shower chair and use the shower hose to rinse it rather than risking a fall by leaning over to put the bucket under the water spout.  After letting the bucket drain while sitting upside down on the shower chair I took it back to the commode by putting the bucket in the laundry basket and sliding it.

Ironically I never needed the bedside commode.  Yet I felt triumphant because so many health professionals have told me to use a bedside commode.  I also felt humbled because I arrived at the solution through sheer dumb luck instead of my OT degree and clinical experience.

** heel of hand = palm on the little finger side of hand near the wrist

March 13, 2017

I Cannot Die Happy

I cannot die happy until doctors stop using the 29 year old Modified Rankin Scale to evaluate the effectiveness of treatment (1).  Research findings are highly suspect when researchers use a scale that is so general it captures only broad, sweeping changes after treatment (2).  Not giving credit for dozens of functional gains between Level 5 (bedridden and needing constant nursing care) and Level 3 (requiring some help but able to walk without assistance) ignores significant gains that affect the quality of life of stroke survivors.  I do not know if doctors keep using the outdated Rankin because they have not kept up with current research or they do not want to use a more sensitive outcome measure that requires training to administer and score.

0  No symptoms
1  No significant disability despite symptoms; able to carry out all usual duties and activities
2  Slight disability; unable to carry out all previous activities but able to look after own affairs   
    without assistance
3  Moderate disability; requiring some help but able to walk without assistance
4  Moderately severe disability; unable to walk without assistance and unable to attend to own
    bodily needs without assistance
5  Severe disability; bedridden, incontinent and requiring constant nursing care and attention
6  Dead

1.  Bonita R, Beaglehole R. Modification of the Rankin Scale: Recovery of motor function after    
     stroke. Stroke. 1988; 19(12):1497-1500.
2. Kuntz A, Ebinger M, Geisler F. et al. Functional outcomes of pre-hospital thrombolysis in a    
    mobile stroke treatment unit compared with conventional care.  Lancet. 2016;15(10):1035-1043.

March 3, 2017

Thanks to a Small Army of Volunteers

Surviving arthroscopic knee surgery required the help of a small army of volunteers.  Listed in chronological order, here is what each person did to propel me towards independence.  There were so many problems I did not anticipate that I am glad no one had to help with every problem after he or she volunteered to help with one issue.  Spreading the workload is my 8th strategy for preventing volunteer burnout.

Jean - A stroke impaired my balance so I asked for Codeine instead of a stronger opiate.  While the nerve block was still in my body the Codeine worked great.  When I woke the morning after surgery I was in agony.  For me, a 10 on a pain scale is having my diaphragm go into spasms so I cannot take a breath to scream.  That morning my knee pain was a 9.  I called my surgeon who sent an electronic prescription to my pharmacy, but I was not able to pick it up.  I texted Jean who picked up the Vicodin and brought it to my house.

Barabara S - The Vicodin made me horribly nauseous.  If you have ever been seriously seasick or had bad morning sickness while you were pregnant you know that relentless nausea steals your will to live.  "I want to die" is not a metaphor when you are this sick to your stomach.  I texted Barbara who brought me gingerale.  She also brought me Band Aid brand Tough Strips because the cheap bandaids I was using to cover the surgical holes would not stick to my skin.  She took two letters to the post office so I could pay two bills that arrived after my surgery.  Before Barbara left she set up my garbage can.

Lauren - I was afraid to push my garbage can to the curb because garbage day came before I had walked outside.  With the garbage can placed next to my front porch I was able to throw bags of garbage over the railing.  When my garbage was ready I texted Lauren to let her know to cross the street to my house.  Stinking garbage on my patio would attract animals that live in the woods next to my house - not good.  

Janet - She called me to see how I was doing and made me laugh so hard that I felt much better. 

Mark - My brother lives 850 miles away so it was wonderful to receive phone calls and texts that told me he was thinking about me.

Peggy and John - They brought cooked meals, groceries, and more bandaids.  Blood thinner makes my skin heal very slowly so I know I will need LOTS of bandaids to keep my leg brace from ripping open the holes the surgeon made.  Peggy told me how to order groceries on line until my walking endurance comes back.  

Barbara M -  She had a PT session on the afternoon of my post-op doctor visit, but it is a relief to know I have another person I can call if I need help getting to an appointment. 

Suzanne - She agreed to take me to the post-op meeting with my surgeon.   Knowing that it did not matter if I failed, I got the courage to walk a short distance down my street and drive my car around the block.  My car is modified so I drive with my sound left foot rather than the hemiplegic right leg which had surgery.  Stopping Vicodin after 2 days meant I was no longer worried about the warning "do not operate machinery while taking this drug."  I drove myself to the doctor visit, but really appreciate Suzanne's offer to drive me.  Reducing fear was a crucial part of my recovery.

Chatting and texting with these people was also an important part of my recovery.  It distracted me and helped me remember I am not alone.  Research has repeatedly shown that social connection is good medicine.