Monday, August 21, 2006

Caregiving: throwing stones

     A choking person alarms people. That may be understating the reaction, people tend to freak out. However it is just another day in our story of “living with MS”.

     Patti’s symptoms of Dysphagia can confuse all swallowing related functions as Myelin deterioration short circuits communication between brain and appropriate muscles.  Patti can really choke if not monitored and assisted with eating, but also her brain can go into ‘choking mode’ without any actual threat to her safety.

     Sadly this malfunction seems to be increasingly impairing one of her favorite outings, movies. Concessions have nothing to do with these episodes. Rather they seem to be triggered if a scene is too startling, or too funny, or too thrilling. What begins as a cough or a clearing of the throat accelerates to choking.

     The first rule of first aid for choking is “If the victim can speak, cough, or breathe, DO NOT INTERFERE.” Accompanied by bursts of cursing <grin>, flailing about of arms, and “pauses” so she can catch her breath before continuing, these episodes are not “at risk”.

     Regrettably if not interrupted they can trigger the involuntary muscle responses involved in gagging and vomiting.

     Usually I try to distract her and simply tell her she is not choking, just breathe normally. Sometimes her brain listens and sometimes it does not.      

     After an attempt or two, well intended fellow movie patrons often begin to offer suggestions. “Shouldn’t you hit her on the back?” “Do you want me to go get help?” or less well intended have begun to complain … “Hey! We’re trying to watch a movie!”

     Once out of the theatre and in the hall her bout of choking ends. My theory is that the sudden change in environmental stimuli with bright lights, NO movie screen, etc ‘restarts’ her brain much like rebooting your computer when it locks up.

     Such episodes were once rare but now probably affect 1 out of 3 movies anymore.

     I’ve never found any formulas for success to insure Patti’s involvement in family type activities. Progression of MS symptoms can be as formidable as Goliath. As a caregiver you just have to keep throwing stones.

7 comments:

  1. you amaze me at what you do for your family:) both you and patti:)

    Deb

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  2. .............just keep doing what makes Patti happy and ignore the "helpful" ones; I won't forget what you have said about interferring (the little old lady who was very cold).  By the way we saw that couple recently at the same restaurant; they were friendly and spoke so guess I didn't do too much harm! lol

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  3. Your theory of distraction sounds a good one.  Although you and Patti have dealt with it many times, it must still be frightening for both, I doubt I'd fare as well as you do. Rache

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  4. as someone who vomits as part of her chronic illness--I understand how it can be.  I don't vomit nicely like some people who open their mouths and out it comes---I sound like a dying grizzly bear and so often people bang on the bathroom stall door asking are you ok--while my mom stands there saying--she's fine-she's fine.  "helpful" people are soooo annoying!

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  5. Stones. Throwing. Tempting, sometimes isn't it? <grin>
    Jackie

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  6. you brought up a very good point, Patrick.  I wonder if there could be some other type of distraction during the actual movie that you could do with Patti so that you both can get back and enjoy the movie without too much disruption to yourself. But I'm sure you have probably thought that through too and haven't come up with anything.

    betty

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