I can tell you the exact date my right arm was temporarily paralyzed (4/23/2010). Or the day I started having vision issues (it's hard to ignore running into coke machines and trash cans). But this - I'm not sure when it happened. I don't know if it was because I was more embarrassed about it, or because it didn't seem objective to me. But one day, I was talking to the nurse at the neurologist and said, "I'm having a hard time doing math, but I know you guys can't do anything about that."
The first thing I learned was it is dumb to think that you know what other people can do about problems. The second was after I said it out loud, I suddenly had a whole list of cognitive issues that I had never really let myself think about before.
- I didn't know who got to a stop sign first. I was utterly confused at 4 way stops. Since I had no idea what the order should be. I just waited until every car I recognized was gone and then I went.
- I could not calculate my time sheet anymore. If I worked from 7:30am to 4:00pm with a 30 minute lunch I had absolutely no idea how many hours I worked. I would sit there for 10 minutes trying to figure it out and get a different answer every time. Eventually, I'd make something up that sounds close and half the time I was wrong.
- I couldn't calculate patient heart rates anymore. Normally for a quick check, I'd take a heart rate for 10 seconds and then multiply by 6 to get the minute. What was 13x6? What was 17x6? I didn't know. So, I started taking heart rates for a full minute to eliminate any math.
When the nurse said that they could absolutely test for cognitive issues, I had no idea what to expect. I had been through every test under the sun, but it turned out that neuropsych testing was possibly the hardest. I went for 8 hours of testing my attention, intelligence, memory, processing, and executive function. These tests are designed to get to a point at which you are not capable of doing them anymore in order to assess where you max out. That means test after test, no matter how well you are doing, you eventually fail. This makes it impossible to know how you did. I was sure everything would come back fine, just like a lot of my other testing.
When the results come back, first they tell you all the stuff you are awesome at. They compare you to your peers. So my peer group is young women with doctorate degrees (a pretty high standard if I must say). So I'm looking at my scores and they range from 58th percentile - 98th percentile which turns out to be a "high average" ability when compared to my peer group.
Then I read the sentence "This is an abnormal cognitive exam for a 28 year old woman with 20 years of education. Specifically, tests reveal reduced performance on speeded mental arithmetic, visuo-motor speed, and visual scanning speed. This particular neuropsych profile is demonstrated by patients with subcortical etiology (Multiple Sclerosis)."
Abnormal. Reduced. Etiology.
These are not good words.
Wanna know my percentile for those impaired skills? 14th - 19th which equals "severely impaired". Here I am walking around "severely impaired" and no one even notices?
Well, thanks to the teleconference, I learned it is because I have high intellectual reserve. Which basically means I've been an active learner for a long period of time. The teleconference made me feel a lot better about these scary cognitive changes because people who are active physically and mentally and participate socially have much better cognitive outcomes.
The prescription for fighting severe cognitive deficits? Live your life. So this week, I will be going on a walk, doing a puzzle, and seeing my friends on doctor's orders.
The other good news is just like my other relapses, this is getting better too. The 10 months of remission during pregnancy especially did wonders for me. Most women complain of 'pregnancy brain' impairing their normal skills. But for me, it was more like this...