Some of the lessons that doctors learn are incorporated into clinical practice but may never get written down because these common sense, hard learned observations aren’t “publishable.” They comprise the “art” of medical practice.
One of the central problems in Parkinson’s Disease is the difficulty in doing two things at the same time. There is a loss of our “automatic pilot,” the part of the brain that allows us to do many complex tasks without thinking about them. As one of my patients put it, “my good hand does what it’s supposed to do but my Parkinson hand has to be told what to do.” This causes a great deal of slowness because the patient has to guide the hand and not think about the next step.
PD patients don’t blink as much as normal people, hence the staring expression, and they don’t swallow as much as normal people, hence the pooling of saliva, or the drooling. There is a problem with their “set point” for doing these small things that occur unconsciously. It’s like having a thermostat that’s always a little bit off. Normal people blink a certain number of times per minute, and Parkinson’s Disease patients blink a bit less. Not a big deal for most, and “easily” remedied. Just ask the Parkinson’s Disease person to blink more! Unfortunately, or fortunately, most Parkinson’s Disease patients have better things to think about than blinking or swallowing so that they can’t think about blinking or swallowing all day long. It’s the same with writing too small. The patient can write larger, but concentrating on writing larger interferes with thinking about what is being written.
Everyone seems to understand this, but a very similar problem occurs with posture and armswing. Parkinson’s Disease patients have a stooped posture, and they also often tilt to one side. The spouse often arrives in the room and tells me, “I keep telling him to stand up straight,” or, “I keep reminding him to swing his arms.” I then respond, “But it never works does it?” “Well, it does for about a minute.” And the reason it doesn’t last is just like the reason Parkinson’s Disease patients can’t increase their blink or their swallow rate.
For whatever reason, clearly related to their PD, their brain wants something different than is normal. The brain says to blink less, swallow less, write small, talk softly, stoop the shoulders, shuffle, and while each of these problems can be overridden, they can only be overridden consciously, that is, while people are thinking about one particular problem. Unfortunately there are lots of other things to think about, like what’s for dinner, why are the Red Sox crashing again, or will the grandson get into his first choice college. No one can think about their posture all day, and especially not about their blinking, their swallowing, their speech volume and smiling, all at the same time.
This applies to arm swing as well. It is rare that Parkinson’s Disease patients can make their arms swing normally. It is easy to detect Parkinson’s Disease patients who consciously swing their arms to look normal because it is difficult to synchronize the movements with rhythm of the stride.
I try to get spouses and friends to understand that telling the patient to stand up straight never accomplishes anything. It is nagging and only is helpful if the patient wants to be reminded, perhaps at a social event or for a photograph. Telling the spouse to stop nagging is greatly appreciated by the patient. And the spouse often appreciates this as well. Most people don’t like to nag. They do it only because they feel they must, as part of their “job” as caregiver, booster, facilitator,etc. It is helpful for spouses and caregivers to hear what the limits are. “Should I nag more? After all he’s not standing up straight and if I bother him enough maybe he’ll straighten out.” It helps to be told not to do it. The spouse can tell the children, “No, I’m not going to bug him anymore. The doctor said he can’t help it and this is nagging.”
A more difficult problem is tilting. Some Parkinson’s Disease patients tilt to one side like the Leaning Tower of Pisa. Some patients will tilt so much that their head is on the armrest of the chair and their arm is on the floor. The most amazing thing is that the patient is rarely uncomfortable from this. It looks like torture, and I certainly wouldn’t want to sit like that, but the patients who do sit with their head almost parallel to the ground are not bothered. It doesn’t help to say, “Sit up straight.” The brains in these patients are confused about what straight, and up and down are. They usually can’t do it, and even when they do, it’s for a limited amount of time before they tilt back to their starting position. The best thing to do in these cases is to stuff the chair with pillows and try to keep them as erect as possible.
I don’t know what to do about nagging people who fall. I have been impressed by how many Parkinson’s Disease patients fall in particular situations that they know are problematic and should be able to anticipate. Most patients fall when they try to turn and their feet stick to the ground. So, why don’t they simply learn to cope with this by stopping, turning with a few small steps, or by leaning against a wall? I’ve asked some patients this and I always get a shrug. I also hear from the caregiver that the patient is constantly being told, “Be careful. Turn slowly.” “Don’t take your hands off the walker.” Yet it happens daily or more. I used to say the same thing. “Stop and think before you turn.”
One day I had a sudden insight. There are not many stronger stimuli for learning than a very bad experience. If you do something that results in a very bad outcome, you avoid doing that thing again. If you stick a fork in the socket you learn with a single experience to never do that again. Why is it that a Parkinson’s Disease patient who falls can do the same thing over and over again? I don’t know, but I realized one day that if a fall won’t teach a patient the danger then my telling them or their spouse’s nagging isn’t very likely to help either.
What’s the solution? I don’t know. It’s hard to keep from trying to help. On the other hand, we must learn to avoid nagging. Nagging is demoralizing for the nagger and the naggee. The nagger feels ignored and the one being nagged feels misunderstood or morally weak, as if not trying hard enough.
Nagging about exercising is good though. You can always nag each other about exercising more. It’s good for everybody.