Ruled

A common question that I have been asked about Parkinson's Disease is, "What's it like?" There are many answers to this question, even for one person with Parkinsons (PwP), let alone the vast variability among the rest of the tribe. One answer for me is that your body is at times ruled by involuntary musucle contractions. Three examples: posture, legs, and fingers. As I type this I am wrestling with all three.

Part one: abs and posture. I am hunched over as if executing a combined bow and crunch. It hurts my stomach, it's uncomfortable for my back, and I'm fighting my own muscles to srtraighten up. Not only do they ignore me, they in fact do the opposite of what I'm after.

Part two: legs and feet. They seem to have decided to tense up and not move. So while I can tell them to relax and march in place, it ain't happening. Not just now, anyway.

Part three: I tell my arm/hand/fingers to move the mouse or type on the keyboard, and I get the cold shoulder as they instead decide to launch into a violent tremor. Lisen to your body? Sometimes it seems to say, "Screw you, and the horse you rode in on!" * Of course, it's not really saying that. It's just the disease talking. The damn disease.

Fight Back

So what's a fellow to do? There are a few things that I do, with varying degrees of success. I have heard reliable reports about how exercise has allowed this or that PwP to stop needing medication, and that's great. I wish it were like that for everyone. My own experience is that exercise helps . . . a lot . . . but I still need the pills, especially for optimum performance. So fighting back begins and ends with the right medication or combination of medications. My neurologist makes suggestions, I try them out and see how effective they are, and then we figure out the next tweak. YMMV.

When I am fighting the posture war at my desk, I will often move my chair out of the way and kneel on the floor. In this way I force myself to straighten up quite a bit. The same thing can help while washing my hands or brushing my teeth--just kneel in font of the sink.

The marching in place is more difficult. The kneeling mentioned previously can lead to sore knees, so I invested in a sit-stand desk. Now instead of sore knees I get sore feet! :)

Sometimes when standing at the desk, I suddenly can't shift my weight from foot to foot. I try some high stepping, and if that also fails, well . . . no disrespect to MC Hammer, but what happens next looks vaguely like one of his dance choreographies . . . just not nearly as graceful. Eventually I get to the point where I can lift either foot slightly (usually), but there is no guarantee I'll be able to do an actual high step or march. Sometimes I can just lurch in one direction or another, triggering a different pathway for the commmand, and my body takes a step rather than allowing itself to fall. Other times I'll combine legs and posture and lean on whatever wall is close, simultaneously reaching my hands up as high as possible on the wall to fix my posture, and doing some stepping as well. Music might help wiht the stepping, depending on the beat. When I'm lucky, even though I can't high step, I can still walk, so I walk across the room and back.

Fixes for the fingers are ridiculously short-lived. They include flattening my hand and striving for max muscular tension; balling up a fist at max tension; pretending to throw a ball. These and other similar tricks often work, but only for a few seconds, typicaly less than five.

Of course all of this is a big red flag indicating that the previous dose of meds has worn off. It might be that I have already taken the next dose and I'm just waiting for it to take effect. If it is not time for a scheduled dose . . . well, I can take more, but in general that is not sustainable, not indefinitely. The duration of effectiveness (up-time) decreases over time, resulting in needing more. The gaps between doses (down-time) get bigger. This is one of the drivers of exercise, to not only slow the progression of the disease itself, but also to slow down that inevitable change in meds whereby we need more pills more frequently to maintain normalcy. If it's possible to get in bed and sleep for a while--especially late at night--there is a good chance I will do that. If I'm going to be up for a while, it depends on what I am trying to do. If there is something that I really want or need to do--and do well--then I have little choice but to take the pills. If there is nothing urgent, then I might fight it for a while, until I decide I'm ready to get some sleep, take my pills, or maybe do some extra exercising.

Most peopele don't see all the "behind the scenes" fun and games -- happy horsehit in navyspeak -- simply because I don't go out until the meds have taken effect.

* The horse hears this and replies, "Him I can understand, but what's this 'and the horse you rode in on' business?"