Saturday, October 14, 2006

Caregiving: wrong way on a one way street

Sometimes you win and sometimes you loose as a caregiver. Multiple Sclerosis flare ups both of physical and cognitive dysfunction symptoms certainly seem to stack the deck against you.


Last Saturday an outing to visit our daughter at her college campus almost never got started. If a MS related symptom could go wrong, it did go wrong. I felt like a hamster in a wheel. On that day perseverance was rewarded. Symptoms stabilized and we eventually had a pleasant ‘late afternoon’ visit with our daughter.


Later in the week we attempted a movie outing to see “Open Season”. 90% through the evening, I was just about to pat myself on the back for successful planning when dysphagia bushwhacked the outing.


While laughing, MS short circuited the communication between brain and muscles and Patti’s brain began to transmit ‘choking’. When dysphagia flares Patti is not really choking, in fact she pauses to breathe. However, she demonstrates all the sound effects and visual appearance of choking, and of course, other theatre patrons may become concerned or even annoyed. Leaving the theatre is the most effective way to distract her and ‘reboot’ her brain. Then all if fine.


Another outing involved our local small town Halloween Parade. Here I was blindsided by a progressing problem.


While visual impairment worsens, Patti’s sense of hearing has increased. I should have seen the clues as over the summer she would frequently complain about the sound of crickets or chirping of birds irritating her. Whenever I asked the critters to stop they refused. <grin> "Well, that's rude of them!" Patti would remark and we'd both laugh it off.


At the parade, high school marching bands, fire trucks, funny cars, and floats created a wall of sound cheered by the crowd and squealing kids. Patti went from bouts of whining to agitated to settling down but in a more disconnected and confused state of mind. … I guess I’m going to have to look into ear plugs or some kind of headphones like workers wear at airports.


As pictured, going the wrong way on a one way street too often captures the challenges.


  1. ear phones are a good idea:) then she can enjoy all of sights and sounds:) still love the picture


  2. Yes, espeically when you have a green glow! LOL...  I understand about the noise bothering Patty. A lot of the kids I work with (and Charlie, too) seem to have an increased irritation with their hearing.  Earplugs work very well if you can stop them from eating them! LOL

  3. Gotta have a sense of humor!  Love the picture of glowing Patty!  Keep smiling!
    Gloria, Kevin's mom

  4. You have the patience of a saint!!! Whatever that

  5. ........You did have a better ending...and Patti has a happy disposition, that helps!

  6. keep it up--it's not how many battles you win or lose--it's if you win the war!

  7. Patti's comments and your answers always amuse, maybe some winter earmuffs might help, she could choose her style.  Am glad you had a late pleasant afternoon.

  8. I love how you still bring a quality of life to Patty no matter what.  I hope my Dave is as patient ;)



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