A neurological exam for multiple sclerosis involves things like this: touch your finger to your nose with your eyes closed. Hop on one foot and then the other foot. Walk on your toes and then on your heels. Touch your chin to your chest and see if that hurts. The big finale is a timed 25 foot walk. It’s no more complicated than it sounds: you walk 25 feet as fast as you can.
I was first diagnosed with MS almost nine years ago. I had problems with my gait, but they didn’t show up until I’d been walking for literally miles. I could walk 25 feet as often and quickly as you’d like. I could sprint down the hall and back. Easy peas. Bring the test, and I will crush it.
These days I’m not nearly so cavalier about the walk. I went to see my neurologist yesterday, and I was sweating it all week. I know I’ve gotten worse at walking over the last six months.
I have observed that I’m getting slower. I’ve started using a hiking stick on “longer” walks. Sometimes I wish I had it with me on shorter walks as well. I quickly want to rest or stop even though I try not to. I walk on the street instead of walking on sidewalks, because sidewalks cracks are harder to navigate. I’ve fallen three times in six months. I’m objectively worse. The walking test just backed up what I know is true: I can walk 25 feet, but slowly. In fact, I can walk 1.6 miles, but if zombies are chasing me I’m doomed. There is no higher gear.
So I have MS, and it has progressed. Nobody wants to hear this. Not friends, not family, not me. [Friends of my parents: please do not call them and make sad noises about this. It’s reality, but let’s not slog around in it.] We’ve known from the start that I have progressive form of this disease, not the kind that causes minor inconvenience for decades. I’m definitely luckier than many in this boat, but I’m not immune. It’s normal for there to have been changes in the past year, just as there will be in years to come. [Strangers: if you’re tempted to tell me it’s all about having a good attitude: please do not. I’m not going to cure this with a positive outlook, and don’t welcome the suggestion. My attitude is a-ok.]
Now I’m home with my crappy walking test and my lazy right leg. Here’s what I have to work with. 1) New drugs. One is specifically marketed as ‘the walking pill,’ which seems like a pretty damn bold promise by the pharmaceutical company, but ok! Let’s go for it. 2) Physical therapy. I’ve been told (very reasonably) that some of this is on me. I have to keep taking walks, even when I don’t want to. I have to do some dumb PT, even when I don’t want to. Drugs may throw me a rope, but I still have to climb the damn thing.
I want a magical solution, but there is not one. There’s just the value of some work that I’ve been half-assing for a while now, and the hope of continued good drugs and good fortune. Here’s to it.
I will walk slowly with you any day. Sending a giant hug.
Facing the reality of physical changes requires big emotional adjustments and Doctor visits throw reality at us like a punch. I assume it’s Ampyra you’ll take-Hope it brings good results. PT is our friend. It’s amazing what it can do.