Tuesday, March 21, 2006

Caregiving: a cheese epiphany

     Multiple Sclerosis symptoms are defined clinically but when subjected to interaction can range from odd to phenomenal but always interesting. Outings, I believe, are important for Patti because reality is rich in the stimuli of unknowns. 
     Sunday we made a quick stop at the grocery store. Patti thoroughly enjoys going to the grocery store. It’s never an errand to her, it’s an outing.
    Symptom: visual impairment - Patti is “legally blind”. There is a clinical definition about visual distance, and if you only observed her watching TV you would see her sit within 2 – 3 ft of a 36” diagonal TV screen in order to see it. Yet ‘MS vision’ as I understand it is more like looking through a three dimensional stain glass window with half the pieces missing. Depending on circumstances glimpses from certain range and depth plus the missing pieces filled in by memory can create apparent ‘vision’.
     Taking that symptom out of the clinical and into reality at the grocery store … Deciding that she wants a bag of chips I roll her down the chip aisle reading off the countless options. Suddenly she points and tells me she wants “that bag of UTZ’s potato chips with the wrinkles.” In disbelief, I pace off the distance of 15 feet to the bag of chips she is pointing at. 5X the range of her vision. Handing it to her she holds it about 6 inches from her face while looking at it to make sure it is an UTZ potato chip bag. <grin> Spooky, isn’t it?
     Symptom combo: Dysphagia and Emotional Lability. Dysphagia usually is associated with problems in swallowing and the threat of choking but can also cause speech problems. Inability to control volume is always the most interesting of these. Emotional Lability basically means you never quite know what to expect.  
     … In the dairy aisle I hand Patti the Velveeta cheese that we had come specifically to buy for grilled cheese sandwiches to put in the basket in her lap. Patti appears to ponder it then boomingly announces to me and every other shopper in the dairy aisle that “Velveeta cheese SUCKS!” <grin> With shoppers in the dairy aisle frozen in place by the outburst, Patti continues her cheese epiphany sharing how she always has to eat the stupid Velveeta because everyone else likes it, and it’s not even really cheese. I notice a couple carts starting to quietly inch away and suspect they probably possess some of the evil Velveeta and are trying to escape this cheese Nazi in a wheel chair. <grin> Such symptoms tend to be brief in duration and soon we are back to finishing our errand, minus the Velveeta. <grin>
[Editor's Note: In the quarter century I've known Patti I've never heard her express any feelings about cheese.]
     Where a quick stop at the grocery store on a Sunday afternoon should have been typical almost boring; instead it became a more colorful and interesting moment in time.


  1. this is too funny, Patrick. Who cares what others think. I would have probably agreed with Patti and said "yep, you are right, Velvetta does suck". You gotta have a great sense of humor and it seems that you have.


  2. LOL i am so glad Patti can still get out and about. I love velevetta cheese with elbow noodles yummy


  3. Shopping is an outing for children, too. At least she doesn't pitch a fit if she doesn't get what she wants, or screams and hollers until she gets her way! She is an entertaining companion on wheels.

    When I sat in a theater three weeks ago watching "Walk the Line" with my husband, a woman behind us kept talking loudly and complaining about the movie. She said loudly, "I thought this movie was supposed to be good... I think it sucks!" The man who was probably her husband tried to shhh her, but she continued. Her coughing and talking made me think she was probably not a well person, and maybe doesn't get out much. Neither me nor my husband said anything to them, in fact, no one complained about her outbursts. I thought about Patti, and how she sometimes speaks up loudly in public. Instead of getting irritated at the woman behind us, I chuckled at her responses. Actually, the movie was a bit slow getting started, and although I enjoyed the acting, I did understand the woman's disappointment. I've been more compassionate since I met you and Patti. I thank you for that. Bea

  4. I work in a grocery store and it is never boring there.  LOl on the cheese explosion.  I bet you felt like a rat buying the inferior cheese .  Sounds like she keeps you in line.  You are an awesome husband to appreciate that not everyone is alike and God makes us all special.  Even down to our choices in dairy products.    You rock Patti!   xoxo Barbara

  5. I WANT YOU TO KNOW THAT THIS STORY MADE MY HUSBAND LAUGH UNTIL HE WEPT! He understood completely and agreed with Patty.  He loves to go to the grocery store and we usually buy enough for a thrashing crew just because it is so much fun.  He uses his power chair and often comes close to someone and then uses the little horn and loves to see them jump!  He enjoys the samples and tries all the stuff even if he knows he won't like it!  So goes our pleasures.  Of course with the new environment, going shopping at the grocery store is one of the highlights of our lives.  Thanks for the lovely shared experience.

  6. That`s the perfect way to share the symptomatology; better than any textbook.


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