Thursday, April 19, 2012

I Think; I Think: I think

MS is eating my brain. Now isn't that a cheery thing to think about. That ugly bit of truth is always niggling at the corners of my reality. Most people see the physical price of the disease; the gimpy feet, the lack of energy, the wheelchair, the catheter. But, all of that is nothing compared to what is going on inside our skulls.

My first exposure to the grim reality was about 12 years ago at an MS lecture by a researcher discussing Copaxone's early study results. He showed MRI pictures of MS brains with what he blithely termed 'black holes.' Big dark areas that MS had bored into the brains of patients. I am sure the lecturer went into further detail, but I just sat their stunned. That was my brain, on some future day, up on those screens, and it wasn't pretty. I hadn't known.
That Spring, at the local MS walk, my hubbie and I met a couple where the reality of these black holes became all too real. The woman was my age, and also used a wheel chair, but she had the mannerisms, speech, and affect of a young child. It was chilling. Another chilling glimpse down the rabbit hole.
It turns out that Copaxone {the daily injectable med that I've taken for 12 years} wields a big club in the fight. Some studies show that it slows or arrests the brain deterioration. I have only missed a handful of doses in these many years trying to keep the darkness at bay.
What then is cognitive impairment? Since my December crash I've mentioned that I've notice how much worse my own has become. The MS society lists these as the most common effects: (they tend to be rather pollyanna and leave out some of the grimmer things like losing control of inhibitions, and personality changes that I don't seem to have yet, thank God)

  • Memory (acquiring, retaining, and retrieving new information)
  • Attention and concentration (particularly divided attention)
  • Information processing (dealing with information gathered by the five senses)
  • Executive functions (planning and prioritizing)
  • Visuospatial functions (visual perception and constructional abilities)
  • Verbal fluency (word-finding)
Certain functions are likely to remain intact:
  • General intellect
  • Long-term (remote) memory
  • Conversational skill
  • Reading comprehension
What this means in my day to day life are episodes like:
  • writing the answer to a New York Times crossword clue in the wrong boxes, and not being able to figure out where the mistake is.
  • sitting with the Hubbie, making a To Do list at 7am and when we check in at noon, having no memory of making the list. No recall at all.
  • I can no longer remember who the characters are in books, "Joe walked into the room," leads to flipping back through pages trying to figure out who the heck Joe is. 
  • Not being able to follow the simplest of directions or recipes. Put 1/4 cup of sugar in a separate bowl...turn to the measuring cups, can't remember what size...go back to the recipe...can't remember what item I was on...sugar or flour...oh, flour is in the, a 1/4 cup...back to the drawer...still don't know the size...sigh.
  • If the TV is on and people talk I can't process either one. At all. Ever. It is like word scrambled eggs in my brain. 
The oddest thing is I am as smart and personable and funny and outgoing as ever. Yet, I feel locked in a box made of sticky taffy. People look at me baffled when I try to explain or they forget or they ignore it all together. Cognition isn't personality or intelligence. It is brain function and the slow deterioration of mine is making me crazy.


Anonymous said...

Janine, I'm so, so sorry you have to deal with all of this. YOu do it wisely and gracefully and I admire your fortitude.
I'm sure it's hard for you to think about what is to come. I can only say I understand as much as I am able and pray for you. You are a bright light in this world and the Lord is using you. I send my love, Leone

Muffie said...

I always brag that MS has not affected my cognitive ability, but when I read your lists, some things pop out at me.
Last night, my children and grandchild were visiting for dinner. Of course, they were all talking and laughing. I found myself unable to single out conversation pieces, and I struggled with dinner prep. Once they left, my brain settled down, and I was fine, but I think I have to accept that I may be cognitively impaired!

Dave said...

Just remember how loved you are in spite of your cognitive struggles - which, by the way, some of us have noticed about you for as long as we've known you. :-)