Progression & Family Time

I think classifying physical losses is relatively easy.  Can I sit up today?  Can I see (blurry right eye today)?  How am I walking/running? etc.

However, I’ve long wondered if or how much I would recognize a decline in my ability to think.  Flowers for Algernon is one of those books which describes a lot of my thinking and wondering about the progression of my MS.  It’s one of those worries which makes me pay special attention to how I and others like my kids learn.  When I was in high school, my physics teacher used to laugh at my answers where we showed our work.  I would end up reproving the the formulas we were taught.  I was always focused on how we got to the work around.  Even in high school memorization was a weakness, but if I had time I could remember how I got to what I was supposed to remember.

So now I still think a lot about how to think (Nerd Alert!).  I hope to be able to remember how to think longer than I can remember what I thought.  I do this in large part because even now I don’t know how to easily classify what I am forgetting.  If I could do that, I wouldn’t have forgotten.  Still, I am constantly caught in the middle of a task having to take a minute just to remember what I am doing and why.  I see this a lot when I reread what I write and see the trains of thought left abandoned midway.  I drive my wife nuts as I often come to a different answer than what I had been working on after such pauses.  I leave a lot of things half done of late.  

As much harder to quantify as the cognitive losses may be, I am at an even greater loss when it comes to emotions.  How much patience do I have now versus 5 years ago?  Is chronic physical pain changing who I am or is MS changing parts of the brain subtly changing my personality?  Is there a way to look at myself and know some thing is suddenly different?  Am I just a little bit crazy? crazier than before MS?  How does one quantify anxiety and self doubt as they sneak in from everywhere and nowhere?

If you find a good answer for how to recognize these things, please let me know.  The whole psychological field of study may also thank you.


In the meantime, at least I can envision running from my MS during my runs.  Now I have something chasing me to motivate in addition to my mind’s image of my wife running or skating ahead imploring me to catch her if I can.  No wonder, I run ever faster.
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On the cool side, A and O went with me to have lunch with my dad and step-mom at the Cozy in Thurmont, MD.  I used to go here with my grandparents, and it was a meeting place for family dinners/lunches out.  It was the first time any of us had been back there since Grandma died.  It’s still a ton of food, and I could still picture Grandpa telling me to get my ice cream in a soup bowl.  As much as I still like the food, I loved the sense of family tradition even more.  In the bathroom, there was a man who said he had been coming for the past 40 years with his family.  When I got back to the table, I asked my dad how long he had been coming to the Cozy, and he said their family went there going back 50 years to when they moved to Frederick.

Some times, a sense of family belonging can come just from honoring tradition whether it’s a get together with family we don’t see every day at a place we have met for generations or dinner at our home’s dining room table most nights.  Meals together have long been the time of family joining.  It’s no mystery why communion is bread and wine.  So many religions view the dinner table as a time for family, and family goes beyond blood lines.  Eating together gives us a sense of belonging to our groups and our past.

Thanks Grandma and Grandpa.  Memories created with you still bring future generations together.

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MS Humor

I think being sick requires a certain attitude if one is determined to be happy.  I was told in an MS group for Men, “Until you can laugh and poke fun at yourself for your symptoms, they own you.  They can control how you behave.  When you can laugh about them, it shows you’ve accepted them and are no longer willing to let them drive your life.”  This came from the man who told me to laugh off tracks in the underwear as bad gas and keep a spare pair in the car.  As he said, fart jokes never get old, and the best ones are the ones untold but known to and experienced by all. http://i.imgur.com/1qFs1.jpg
Towards that end, I was trying to think back to some of the humor I’ve found in my MS.  Much of the humor was unknown to me at the time.  I couldn’t see it yet. 
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My step mom says I have the family’s cursed CRS.  CRS in this case stands for “Can’t remember #$%^”
I use my memory gaffes as part of the comedy of MS routine stories I tell to make light of MS and make friends comfortable laughing at MS.  One of my most common stories is from my first Christmas with MS where I got together 3 presents to wrap, tape and paper.
1st present: put present down, cut paper, fold paper, tape – tada! one down two to go.
2nd present: put present down, cut paper, fold paper, ummmm where’s the tape?  I haven’t stood up.  It must be within arms reach.  Why the heck can’t I remember where I put the tape…a 5 min curse fest ensues until boredom with repeating the same curses allows me to realize there was more tape.  So I go and grab another roll to finish.  Tada! Two down.
3rd present:  put present down, cut paper, fold paper, ummmm where’s the tape?  Seriously?  I can’t remember where the heck I put it.  Thankfully this time boredom hits faster so after only 2 minutes I remember there was more tape. Tada all done. 

I saw the tape neatly stacked one on top of the other only the next morning, for the night I just had a block.  I could not remember where I put the  tape down.

Lest one think it only hits for mundane things like tape, I once spent what felt like 5 min trying to remember my wife’s name before a coworker supplied it for me when I said, “You know, the woman with whom I live.” 
(more on next page)
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A few years ago, I learned to always get a tray when I went downstairs to the cafeteria.  In the course of 4 work days, I dropped 5 bowls of oatmeal.  Yes, that’s right. 5.

Something about holding the bowl with one hand made it shake and then get thrown or dropped.  After the first one, I would not let the cafeteria staff clean it up.  I just had them tell me where the mop was… On the fourth day I got over my stubborn streak and said “If I can’t hold this with 2 hands then no more oatmeal.  It might be better for my heart, but it’s crushing my spirit.”

If anyone has ever seen the Never-ending Story, there is a scene where the huge stone giant is looking at his hands saying “Such big strong hands…You would think I could just hold on!”  I wanted to print a picture of him with that caption to put on a tee shirt to wear down to the cafeteria for the laughing workers there. 

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Another funny from life with MS:
For most of the first two years I had MS, I experienced L’Hermites sign.  Honestly I kind of miss the L’hermites (sp?)sign.  It used to make me laugh, especially at the end when it was just a tingly sensation in the groin whenever I looked down.  It happened every time I looked down to pick up after my dogs.  I’d chuckle to myself and wish for that sensation at a more appropriate time than picking up poop.Wink
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On the embarrassing side, I often relate how steroids left me crying watching Independence Day with Will Smith.  Yes, emotional control can totally be taken away via chemical interactions.  I was literally laughing at myself for crying, and I couldn’t stop either one.
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I’ve taken to chuckling at the onlookers wondering why a guy who just fell is getting up to run some more despite cuts and scrapes. I loved the look on one lady’s face when I said, “It’s fine. It’s not like I felt it.”  Truth told I felt some thing.  It wasn’t pain.  It was humor at my MS and her reaction to its symptom.   
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Our Family's Stories of Growing Up

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