You might think that tone is no big deal. After all, we eat, right? And we exercise. And go to the gym. All in pursuit of nice body tone. But that isn't the kind of tone that I'm talking about here. The kind of tone I'm talking about is the kind that makes your muscles so tight that you can bounce a quarter off them. Still don't think it's any big deal? After all, everybody who suffers from a stroke has one. It can't be all that bad, right?
Wrong! Tone after a stroke is debilitating. You could spend years overcoming it. It's what you have therapy for. It's what all the medical professionals constantly worry about. And it's awful.
So, you don't know what all the professionals are talking about? That's okay. I didn't understand at first, either. Tone is involuntary contraction of the muscles, enough to pull your limbs any which way they want to go, making it impossible to pick something up from the floor if your hands are affected, to walk correctly if your feet or legs become afflicted, or even to walk at all. In any case, it always interrupted my walking sessions sooner or later. If I was particularly tired on any given day, my tone would flair up in my legs, then I would get nervous, and then it was all over; I was as tight as a drum. I remember how my Physical therapists each gripped one ankle while struggling against it when I tried walking in the Lite Gate, a machine designed to help people walk again. They worked hard to get past a flair up. Many PT sessions ended in our triple sweat against my tone. Our efforts weren't in vain, but the fruits were long in coming. I never got past my tone with my inpatient therapist, for example. I got through my tone with hard work and loads of sweat, only to have it curiously return almost a year later. Yet, that's how tone is; indefinable and unpredictable.
But, quite suddenly, I could walk. That was after I went home. My tone wasn't gone, but it was manageable. That was only after lots of time spent in the wheelchair, using walkers, and canes. For me, tone felt like I was constantly wearing a belt around my right heel and foot. Don stretched me out every night before I went to bed, but the next morning I was tight again, so it felt like we had to start all over every day. That wasn't true, but it sure felt that way.
Like all stroke recovery, fixing tone is slow and laborious, but every little bit counts. Wearing potus boots to bed (potus boots are splints of felt, metal, and plastic that fit around the feet like a mold) helped straighten my feet. It may have taken months, and it may have been hot, but my feet were straight by the end. So were my hands, fingers, arms, and, legs. But I had to wear splints of every kind to get them that way.
Sometimes therapy was given over to nothing but stretching. Stretching with the Physical therapist always hurt, but all the therapists did it, even Lyndsay and her substitute, Molly. They both stretched my arms and shoulders all the time. I knew when I was tighter or looser, and occasionally asked to be stretched. It always felt good when I was done, even if it hurt at the time of the actual stretching. But being stretched out like a normal person was what I wanted in the end, so stretching became part of my life.
Lyndsay was particularly concerned with the tone in my shoulders. It was ruining my posture, not that I had great posture to scream about to begin with, but it was definitely better before the stroke. Taping my shoulders back helped, but it didn't solve the problem. She worked and worked on my arms, stretching them as far as they would go, which wasn't far, but we tried. In fact, we tried until there was nothing left to try, and Molly, my substitute therapist, was there when we finally fixed my shoulders. I don't know what we did different, but something that Molly suggested must have worked, at last, or else all the painful stretching and rotating Lyndsay and I had done before finally took effect, because my shoulders suddenly started turning and lifting without pain or tightness.
The one thing I learned throughout the entire ordeal was that there's something to be said for collaborating on a project. A new person always has new ideas, and that's what helped my shoulders. Maybe. We'll never know for sure. At any rate, something made my shoulders start moving again, even if we were always fighting the tone. It was just very weird not to be in control of something like that.
Tone ended any amount of influence I had over my body, and to a person used to being in control of everything around her, it was a terrible thing. Fortunately, I don't seem to have so much tightness a year later, though it comes and goes, depending on my state of exhaustion, and in the beginning or even now, it still directs my entire life. (Heaven help me if I'm walking somewhere, my ankle's tone kicks in, and I have to use the bathroom! I might as well force myself to do a dance in the middle of the room as walk through tone that makes my ankle turn in and forces me to walk on the edge of my foot. I can try to relax, but that doesn't always work. [You try to relax when you have to use the rest-room!] Instead, it's just plain painful, a painful distraction, and being a pain, all at once!)