Throughout my MS journey, I’ve never dwelled on the ultimate outcome of my progression, what I refer to as the end game. I mean, what’s the point? The end game has been the proverbial crazy relative locked in the attic. You know they’re there, and you know at some point in time there could be a reckoning, but you don’t pay much attention to it because all it does is get you cranked up. Meanwhile, you do what is necessary to keep the progression at bay and prevent that day of reckoning from occurring.
The only concession I have made to my condition, besides diet, apheresis and infusions, is this house we just built, figuring it would be better to be proactive, and create a new space that can accommodate my needs should the worst occur on my terms. In other words move when I can, leaving the emotion out of it, instead of when I have to. That decision may prove fortuitous because my symptoms have definitely progressed to the point where the end game feels closer than ever.
The symptom that first appeared twelve years ago was a subtle foot drop. Slowly but surely, the weakness progressed beyond my foot, consumed my ankle, and slowly made its way up the leg to just below the knee. Walking became increasingly difficult and annoying, but it was manageable, and even though I used a cane liberally, I didn’t need it to get around. For the longest time, the weakness and lack of control hovered in that area, and even though it made maneuvering and doing stuff harder, I didn’t think twice about any physical limitations, and never thought of myself as disabled.
Well, things have changed. Perhaps it was all the work and activity I did to help get this house ready. Maybe it was the move itself. Maybe it was the stress of this entire process, which was significant. Maybe it was a combination everything or perhaps none of this mattered, and it was simply inevitable. Regardless, the symptoms have now consumed the knee, and my foundation is crumbling.
My knee feels like a broken kickstand that is on the verge of falling off. The pin that holds it to the frame is still there, and keeps the bike upright, but barely. It is loose as hell and is constantly on the verge of popping out. My knee literally feels like it is hanging by a thread, and as a result the leg feels like it can snap in half at any time. I wear a knee brace now in addition to the AFO brace, which helps, but all it does is provide a little extra support to prevent the leg from torqueing sideways.
If I don’t plant my foot a certain way every time I step forward, all my body weight lands on the bad leg as the other leg swings through, and the results aren’t good. The knee forcefully snaps back and the leg suddenly becomes inflexible and ramrod straight, which hurts, and my body wants to lurch forward. I literally have to place my hand behind the knee and push to unlock it and get the leg working again. This can happen several times a day if I’m not careful.
Needless to say my balance is worse than ever. I am in danger of falling with each step I take, which is a first for me.
So the nagging thoughts have begun. Is this the beginning of a steady, downward slide? Is my body going to allow me to continue working full time until I planned to retire? How much longer do I have before a walker or the dreaded wheelchair become necessary? What is all this going to do to from a financial perspective? I was supposed to see my neurologist again in January, but moved the appointment up to a week from Monday. I’ve never done that before, but I need to hear what he thinks.
Of course, I know there are no definitive answers. This could be my status quo for years, or I could be in a wheelchair by summer. I have always known what the deal is, but it never became a conscious thought until now. That crazy relative has broken loose from their prison and is rampaging through the house.
I’m resilient and stubborn though. We’ll wrestle for a while, and I have no doubt I will subdue them, stuff them back into the attic, replace the door and padlocks, and focus on more important things that I can control.
At least until the next obvious progression comes along.