Monday, September 30, 2013

A day in the life

(This was written earlier but not published.)


I started outpatient rehab at Bryn Mawr Rehabilitation Hospital at the end of August.  This is a typical day for me.

7:00 am - Get up, feed dogs and give them their morning meds.  I shower, dress, eat breakfast and take my meds.  I've had a constant headache since the accident, and the meds help keep the pain under control most of the time.

8:30 am - Make sure I've got everything I need in my backpack.  In addition to my wallet and phone, my must-haves include my day planner, steno pad, pen/pencil/highlighter, wrap around sunglasses, foam earplugs, visor, ginger Altoids (for nausea), meds for breakthrough pain, iPad, lip balm, bottled water, and hand sanitizer.  

9:00 am - Since I'm still unable to drive, ROVER (community transportation service) picks me up and takes me to rehab.  I qualify for this service now that I'm a person with a documented disability. The 21 mile trip can take anywhere from 45 minutes to 2.5 hours, depending on the number of stops on the route that day.  The cost for this trip is $7.60 each way.  Most of the passengers are senior citizens going to the senior center or doctor appointments.  

10:30 am - Arrive at rehab and relax with a cup of coffee.  I need time to recover from the bus ride in order to perform well in my therapy sessions.

11:00 am - Speech/Cognitive Therapy.  My therapist works with me on memory and recall, planning, problem solving, and speech fluency.  These are the skills most severely impaired in a frontal lobe brain injury.  I have to learn new strategies to do things that used to be automatic.  

12:00 pm - Lunch break.  I intentionally schedule an hour break (or more) between therapy sessions to recover and deal with symptom flare-ups.  I eat in the cafeteria with the staff and visitors and tell myself that I fit in.  

1:00 pm - Occupational Therapy.  My therapist works with me on visual processing and convergence, as I also have damage to the occipital lobe responsible for vision.  My eyes don't work together very well and I'm very light sensitive.  I also have double vision, nystagmus, and trouble processing movement of objects.  The activities are designed to retrain my brain to accurately process and respond to what I see.  My visual processing is currently equivalent to that of an 80 year old, which is a big improvement.  We also work on fine motor skills, which are also impaired.  My hands shake when I try to use them, and I've lost sensation and grip strength.

Later in the week I'll have Physical Therapy in place of Occupational Therapy.  We work on balance and vestibular functions to retrain my brain to correctly interpret signals from my body position, vision, and inner ear.  I'm currently classified as a high fall risk.  The last thing I need is another injury, which is very common with PCS.

I also started seeing a psychologist at Bryn Mawr to deal with the other stuff that comes with having my whole life turned upside down by brain injury.   

2:30 pm - ROVER picks me up for the ride home.  If I'm lucky, I get home by 4:00 pm.  Sometimes it's closer to 5:30 pm.  The roads are narrow and winding, and those ginger Altoids come in handy.

When I get home, I let the dogs out and have a rest in a darkened room.  The later I get home, the less rest time I get...and the more I need it.

6:00 pm - Time to feed the dogs and dispense evening meds.  I double check to make sure I set up their medications correctly.  Counting out pills and putting them in the right slots in the medication tray is difficult, and sometimes I screw it up.

7:00 pm - Time to feed me, which is less fun than it sounds.  My sense of taste is impaired, and many of my favorite foods taste bland or bitter.  Only sweet foods taste normal to me.  My fine motor control skills aren't very good, so using knives, peelers, and other tools is difficult.  Chewing is painful because I injured my jaw in addition to my brain.  Usually I heat up something simple and force myself to eat it despite the taste.  I nearly always spill my food on myself or the table when I eat.

The rest of the evening is mine to enjoy.  I might watch some TV or read stuff online.  Bedtime is earlier now that I need 9-10 hours of sleep to function.  

There is almost always at least one day off between therapy sessions, so tomorrow would be an at-home day.  I'll work on my rehab homework and do all the other stuff:  doctor appointments, insurance claims, pay bills, phone calls, and household chores.  Timing is important...cognitive activities need to be done early while I'm still fresh...and I need frequent rest breaks.  If I push too hard, I crash and cannot function anymore.  

And so it goes.







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