Showing Up

I saw AM yesterday (Nice initials, I think). He has a parkinsonian like disorder that can't really be treated. He looks like a person with parkinson's: can't walk, move very well, speak well. I saw another person like that in the hospital last week, also. The medications for Parkinson's don't work for them. AM comes in every four months. I'm not sure why he does that, since there's no treatment for him. I've already tried everything that there is. He went for a second opinion to Hopkins. They told him what I told him. Once, I told him that he could come back on a PRN basis (whenever he wants to, but we don't make an appointment). He came back in two months. There wasn't anything new, really. He had fallen, but not any worse than all of the other falls. (He falls often.) So I decided to have him come back in three months. Then, I changed it to four months. I kind of know that if I change it to PRN again, he'll come back in pretty quickly. He is getting slowly worse.
I saw J yesterday. She has severe back pain. She gets injections every three months. Then, she can walk around the house, and even a little outside. She uses a wheelchair for any distance. After about two and a half to three months, the pain worsens and she can't walk around the house. She's been to pain management, but they didn't really help her that much. She had gone through a big depression when she went to the ALF place. Her and her husband hated it. They moved back to their house. Now they're doing a lot better.
I saw S too. She's 27 and had a brain tumor taken out last year. She saw me for pain, also. I gave her Lyrica, because it's nerve pain. She's doing very well now. She has just a touch of pain at this point, but it's very tolerable. She had a miscarriage, right before the brain tumor diagnosis. She's doing well. The surgeon told her she can go back to work. I told her she can back to work also. It turns out she didn't like her job at the hospital though. So she's going to find another job.
AM and MM didn't show up yesterday. RS rescheduled.
Some people show up. Some people don't show up. One time, someone somewhere said that showing up is 90% of it. I don't think that's right. I think it is really "Being there is 90% of it." People can show up and not really be there. That shouldn't count. A lot of people say it's "hanging in there". I don't really think it's that, either. That's more like "showing up" than it is like "being there". I respond "Well, that's better than falling out of there." It is better than that. But it's not the best of all. If you're really there, then you can make the best of it. That's how I grouped those three: AM, JH, and S. They are really there. They are making the best of what it is.

Clear Thinking

What we need is more clear thinking. B asked: "What do I do -- just live with it?" He has pain. It got so bad that he had to go to the emergency room. The pain is in the chest, on the left side. It is very intense. He's had it for several years. It comes and goes for no clear reason. The pain typically lasts about twenty minutes, although it can be more. It is a very sharp intense pain, "like stabbing". There is a sensation that is also similar to a "cramp", like a "charley horse." He has had ECG tests, GI tests and finally me, the neurologist. He had nerve tests, MRI of the spine, and GI endoscopy. There is no very clear, specific diagnosis. It's just "chest pain".
He doesn't like the lack of a specific disease name. It makes him feel nervous. We don't know what he has, according to his way of thinking.

This is not clear thinking. At some level, we know nothing. We certainly know nothing when you get down to the real details. I tell my patients, sometimes, "You have peripheral neuropathy." That makes them somewhat happy. There is a real diagnosis! They ask "What is peripheral neuropathy?" But even so, they are happy because now we "know" what they have. In reality, we don't know very much. We know that the nerves are damaged, and that's about it. Then, there are many kinds of neuropathy. There are many causes. Much of the time, we don't find the cause. We end up saying "Chronic Idiopathic Axonal Polyneuropathy." That's what they have. That, in short, is nerve damage that we don't understand. This isn't very different than what B has. It just has a fancy name. I don't know what causes either one. And that is clear thinking.

So we know what we know. We know he has this type of pain with this type of intensity in this location occurring intermittently with this frequency. We know that. It's his experience. It could be given a name, but that really doesn't change anything. It doesn't change the reality or the experience or the nature of the problem. Yet we allow the existence of the diagnosis to alter our perceptions of the reality. The reality is improved somehow with the name.

This sort of thinking is allowing us to fool ourselves; it's allowing others to fool us. Since the presence of just a name changes our perception of reality it's very easy to change our perception of reality. We need to be careful about these things. I suppose I could take advantage of that. I could give people fancy names and then tell them what I know about what they have with an authoratative presentation. It would make them feel better, maybe. But I wonder if we're "dummying down" by refusing to accept the very high level of uncertainty that truly exists. We need to become comfortable with the reality of uncertainty. Everything is uncertain.