Wednesday, March 10, 2010

Multiple Sclerosis Awareness Week 2010- The Psychological/Cognitive Effects

The psychological and cognitive effects of Multiple Sclerosis.  In my opinion, this is one of the most grossly misunderstood and undisclosed aspects of this disease.  You can Google "Multiple Sclerosis" and come up with list upon list of the physical symptoms, while any mention of the psychological and cognitive effects are mentioned as a mere afterthought.  Make no mistake, they are not a mere afterthought to those of us who suffer from them. Truth of the matter is, they are one of the hardest symptoms to deal with because they are invisible to everyone else, and very misunderstood and under-estimated as a result.   A lot of people who do suffer from these symptoms are hesitant to even speak about them.  I mean, it's a little embarrassing to admit that you feel as dumb as a box of rocks on some days.  There's the fear of people treating you differently, or thinking you are less intelligent than you once were.  So, I want to shed some light on these symptoms, and I'll do so by sharing my own battle with them.

I will be honest, the biggest reason I no longer work is not because of physical limitations but because of the drastic change in my mental function.  My problem solving skills, for instance, have gone right down the tubes.  I worked in accounting for many years, yet now there are times I truly struggle with the simplest math problems when helping my 7 year old son with homework.  It's like I look at the problem and completely draw a blank as to what the answer is or how to figure it out.  I can't do math in my head anymore, because I have lost my ability to visualize the math problem.  I'm not sure if this will make sense, but say I'm trying to figure out what 73+29 is my head.  I can picture the problem, with one number on top the other, but by the time I figure out what 9+3 is and go to carry the 1, the 7 and the 2 have faded away.

Following written directions, say for driving, is close to impossible.  Not only has my ability to comprehend new written information been effected, but my short term memory is shot as well.  What I used to be able to simply skim over and comprehend within a few seconds, I now have to really concentrate on and re-read repeatedly to understand it all.  So by the time I've made sense of the directions I've written down and look up to drive again, I've completely forgotten every single thing I just read.  All I have to say is, thank God for my brother sending me a GPS! *laughs*  Without my GPS, I would be unable to drive in unfamiliar areas.

My lack of short term memory is frustrating at best, discouraging and downright annoying at worst.  If I don't write down every little thing, chances are I'll forget.  I ask my family to tell me their schedules almost daily, not because it's changed or because they didn't tell me, but because I simply don't remember from day to day.  I know I ask the same questions repeatedly at times, because I have no memory ever asking previously.  When I had the psychological exam when filing for disability, the doctor kept trying have me do all kinds of memory tests.  Counting backwards by 7's, remembering four random objects and repeating them back 5 minutes later, other things of that nature.  I failed.  Miserably.  She actually said to me at the end of the appointment "I really feel for you.  It's obvious you're a very intelligent woman.  Dealing with the effects MS have clearly had on your cognitive functions must be extremely hard for you".  My response was "It's the hardest thing I've ever had to deal with".  I often say, it would be far easier to be stupid and live in ignorant bliss not knowing you're stupid.  Having a high IQ and being intelligent, yet feeling stupid, is pure torture.  

Another issue is what those of us with MS call "word fishing".  I can't tell you how frustrating it is to be speaking and forget the most common word in the world mid-sentence.  And by the time you remember the word?  You've completely forgotten what you were saying to begin with. Or choosing a similar but wrong word when speaking, and being oblivious to the fact you're even doing it.  I actually called my daughter's birthmark a 'tattoo' numerous times before she pointed out, through fits of laughter, what I had said.  (ok it WAS funny, lol)  

There is also the depression that so many with MS suffer from.  What people don't realize is, depending on what part of the brain is being effected, it can trigger a whole host of psychological effects from severe depression, bipolar disorder, even schizophrenia.   I know right around the time I started showing clinical signs of MS, I also was in the midst of the most severe depression I'd ever been in.  Then one day, just like a light switch, I woke up and it was gone.  The reason?  It wasn't because of a chemical imbalance or life circumstances, it was triggered entirely by the MS.  Then there's the fact just dealing with the daily struggles MS causes can send a person into a depression all on it's own.  

Then of course, I can't forget the 'foggy brain' feeling, short attention span, and inability to concentrate.  Just like the physical symptoms of MS, the psychological and cognitive symptoms are just as real and hard to cope with.  So the next time you see someone with MS, don't assume just because they "look good" they're actually doing well.  We may look incredible on the outside but are actually struggling against our own malfunctioning mind in the inside.  

Be well all- and get your orange on!

1 comment:

  1. Mis,

    You are NOT are and continue to be a very intelligent young woman. I know you well enough to realize the cognitive issues are horrible for you. And yes, I knew you fell into a very deep, dangerous scared me.

    OK, I have a suggestion. You are really good with stuff on your computer. Create a family calendar. Make the kids responsible for putting their upcoming activities on the calendar. I bet even Josh can do this. Add schedules for both you and Wayne. I'd bet that after Morgan or Josh or even Wayne missed something because it wasn't on the calendar they'd start putting things on it pretty fast. You too for that matter. Make the rule that if it's not on the calendar, it doesn't get done. And you'd be teaching the kids some good habits in the process, how to keep track of stuff.

    I love you Melissa. I'm here for for you any time you need me.