The crack of dawn comes waaaaaay to early. I found this out when my alarm (which has been silent since the last day of elementary school before summer vacation) began blaring in my ear at 5:30 a.m. The drive there was not as bad as I had feared. :-)
Today was my EDSS (Expanded Disability Status Scale) testing along with MSFC (Multiple Sclerosis Functional Composite). There seems to be a lot of acronyms involved in clinical research or maybe that's all part of the emphasis on secrecy about what they are doing in the same way that making it "double blind" is supposed to keep us guessing.
The MSFC test was quite interesting. The lady who administered it explained everything beforehand to me. There are three parts and they are each designed to measure one of three different aspects of how MS affects a person. They are: leg function/ambulation, arm/hand function, and cognitive function. To measure leg function, I was taken to a hallway and told to walk as fast as I can from a marked point to a doorway down the hall. She used a stopwatch to time me. Then I repeated the effort from the doorway back to the starting point. That was the easy test.
The next test was the arm/hand function test. It sounded simple. A pegboard with 9 holes was placed in front of me with a bowl in front of the pegboard containing the pegs (sort of in the "salad bowl" position if the pegboard had been a dinner plate). She timed me first placing all the pegs in the holes one at a time and then immediately removing them back to the bowl with my left hand, then right, then left again. I think I got a little slower by the second go round with the left hand. It was harder than it sounded.
The last test was the most difficult. Of course it was a measure of cognitive function, so of course I would find that hard. (haha) It was a CD recording of a man saying "your first number will be said in 5 seconds", and then the same guy says a random number from 1 through 9, waits a few seconds and says another 1-9 number. The objective is for me to add those 2 numbers in my head and say the result. The first 2 numbers were easy... 1 and 4. "5!" I say, all proud of myself (this stuff is easier than I thought!). Then you have to remember the 4 (not the 5 that I said) and add it to the next number the guy says and so on.
They let you have 2 practice runs to get the hang of it. We went through the first practice and I didn't miss a single one. The test giver's jaw dropped. She said "Wow! you did excellent! What do you say we skip the other practice and go right to the test?" I just shrug. Piece of cake. The first three numbers were a breeze and I was getting all cocky. Then something happened and I paid too much attention to myself saying an answer. I got confused and added the guy's next number to my answer and realized my mistake. By then he'd spouted out three more numbers and would not shut up. Then it was like he was the cocky one and he kept on giving me 7's and 9's like he knew they were my Achilles heels. I could almost hear his "muahahahahahaha" evil laughter between numbers. I froze and wanted to shout "DO OVER!" but I was warned in advance that the test would go on whether or not my brain cooperated. Doh!
After that embarrassment was complete, I was left alone to contemplate the wallpaper and the floor tiles until a neurologist came to give me the EDSS test. Fortunately, this test didn't test much cognitive stuff and the guy hadn't witnessed my humiliation by the recorded voice, so I was able to pull myself together and at least act halfway intelligent.
This test involves the usual neurological stuff where they whap you on the knee with the little hammer and stuff like that. Neurologists that specialize in MS know to stay far to the side when whapping the knees of someone with MS. My foot flies out with lightning speed right to groin level if you so much as stroke my kneecap with a feather.
There was the sobriety walk (honest occifer, I only had tee martoonies!), the finger to nose touching, and various other odd tests all designed to tell the neurologist what parts of my brain and spine have been damaged by the lesions that MS has eaten through my protective myelin covering.
There were some things he had to ask me because he couldn't witness them. One question was "Can you walk a quarter mile?" I just laughed at him. Not taking incredulous laughter for an answer, he expounded on the question in case I didn't comprehend: "Say, if you went to Disney World and had to park far across the lot, could you walk to the gate unassisted, or would you need to take the tram?" My answer: "If I used all my willpower to force myself to believe it was a life and death matter that I make the march unassisted for a quarter mile across the sweltering hot parking lot in order to save my child from a burning vehicle, then yes. I could do it. Other than that, if I was just going to enjoy Disney, there's no way I could walk a quarter mile and not have to find somewhere to soak my legs in a whirlpool and take a nap immediately afterward. There would be little point in going inside the gates."
After the neurologist got done whapping me with a hammer and tickling me with a buzzing tuning fork, the next experience was to be hooked up to the Holter monitor. I was scrubbed at various locations on my chest and stomach with alcohol and what felt like 100 grit sand paper. "It's to make the connections work better," she said. Then the sticky pads with imbedded snaps went on. Then the wires snapped to the snaps and hooked up to a little box. I felt like a carburetor. I asked her if they would be able to see how stressed out I was driving solo in Jacksonville traffic by looking at the Holter monitor readings. She laughed and said "probably."
All in all it wasn't a bad day of testing, as days of testing go. I'm beginning to feel like a test connoisseur since I've had so many of them. Tomorrow I go back and do both the EDSS and MSFC tests over again. Today's tests only allow me entrance into the trial and tomorrow's are the baseline. Really... is it necessary?? I'm practicing for the next battle with the recorded numbers guy. He's not getting the better of me tomorrow!