Health Maintenance

Today I didn't see one patient who is adequately taking care of themselves. They are not exercising. They are all overweight (or obese). Some of them smoke. There is no health maintenance. Recently I saw a very heavy woman. Her cardiologist told her that she was "Fat and lazy." (He literally used those words.) Today, one of my patients told her that her internist told her to go on a 1200 calorie per day diet.

If every single one of my patients -- EVERY ONE -- that came in today has a problem with health maintenance, how can it possibly be the patients? If one person becomes a suicide bomber, he's insane. But when the entire village becomes suicide bombers, there is a social problem in that village. Clearly, then, there is something wrong in my village. In fact, I think, it's in my country.

Today was a little extreme. Usually I see a few patients who do take care of themselves. But in my practice, it's probably about 5%. That's lower than the national average: about 10% of americans exercise regularly.

It's difficult, because I treat back pain (which is caused largely by obesity) and stroke (caused by obesity) and neuropathy (often caused by diabetes which is caused by obesity). Parkinson's has nothing to do with lifestyle. ALS has nothing to do with lifestyle. Alzheimer's is interesting because there are studies now coming out that exercise seems to decrease the chances of Alzheimer's and that vascular disease has a lot to do with it, so it may partly be related to our lifestyle -- but only partly.

My society is creating too much disease. There is something very wrong with how we're doing things. People aren't being taught how to take care of themselves.

About time

I have fallen terribly behind on writing. There are too many patients to see. There isn't enough time. There is a great problem with this. It cuts into the time for reading and writing. In the academic world, when I was an assistant professor, we didn't really care very much about the quality of SERVICE. We cared about the quality of the care we provided. But SERVICE wasn't an issue. If people had to wait for four or five months to get a new patient appointment, it didn't matter to us. We had the prestige to demand this. Since we taught and did research, we didn't really care that much about patient productivity and our "practice". It was almost a side job. But now, that is entirely different. The patients are the priority. I still find that we don't service people well. We don't get people in here for weeks. It upsets them. The problem is, there just isn't the time. So now, the reading and writing are starting to suffer. Mostly, it's writing. Soon, it will be the reading.

I have thought before about time delusions. We have wrong perceptions of time. The time seems to come and go on its own schedule, rather than our own. We are always making choices about how we use our time. People are always telling me that they don't "have time" to exercise. But we have to make that time happen. We really "have" the time. It's just that we choose to use it doing something other than exercise. It's the difference between letting life happen and making life happen. Letting vs. Making. We just have to create the life that we want.

This is one of the things that is critical to a successful illness. When I have time, I do need to write a book on the good things about illness. (First I have to finish the one about being healthy). I'd better create that time. When we get sick, we tend to re-assess priorities. We make our decisions differently. We change the way that we use our time. I think if I were to get sick, then I would write more. Of course, the practice will suffer a little. People will have to wait, or another solution to seeing people will have to appear.

Focusing

Yesterday, I had an especially "difficult" patient. She was referred here for falling. She wanted to keep on talking about her stress. I usually can listen to patient's concerns. After all, I'm here for the patients. I am here to care for them. But with a referral for a particular problem, it seems that I should address that issue. She has fallen ten times in the past year. This is dangerous. She is elderly, and injury could occur. So I have to figure out why she is falling, and if there is treatment to improve her condition.
Her son had swindled her and her husband out of $100,000 a few years ago. He had stated that she had Alzheimer's, but an evaluation done by one of my colleagues revealed completely normal thinking. Now, he is apparantly trying to take advantage of them again. There are many details, but they aren't really that relevant here. She kept on telling me that she thought the stress she is under is the cause of her falling.
In order to figure things out, I do need some history. So I kept on trying to re-direct the patient; to find out more about this dizziness.
Now, I realize what the problem is. I wasn't really listening.
The problem with listening is remembering to hear what the people don't say. That's the tricky part. She wants this all to be related to the stress. That's because she can't handle anythying ELSE. There CAN'T be anything else. She doesn't have the ability to address another problem. She's here because her doctor sent her here. But in reality, she doesn't care about the falling. She doesn't care that she may fracture her hip. She doesn't care that she might hit her head. She only cares about the problems she's having with her son. So whatever is wrong, it HAS to be related to this stress.
I do think that there are stress related illnesses. I tell lots of my headache patients and my seizure patients about stress. I tell my back pain and neck pain patients about stress. I tell my obese patients about it.
But this balance problem was very clearly physical, and not stress related. So I was trying to explain that to her.
I missed the point entirely. There is nothing that isn't related to this stress for her right now. That's because this is the reality that she has created. So what am I supposed to do about this falling issue?

Name tags and Paper

Some people have very impressive "paper". I mean the pieces of paper that are mounted in frames and hung on the wall. They make proclamations that the person who owns the paper is of some special significance. We use paper as a surrogate measure of quality. The paper says, "This person is of quality." And this is what we rely on. I have some fancy paper. At one time, it hung on the wall. I'm not really sure where that paper is right now. I suppose I could dig out of a closet somewhere here in the office.
Now, there are some who aren't happy with paper. Medicare wants to measure quality, as do most of the insurance plans. Of course, there's some worry about this. Medicare wants to withhold 2 to 5% of hospital payments and then return it to them based on quality. They have already begun a 1.5% "bonus" for physicians. The "bonus" comes from paying less than normal to everyone. It's a re-distribution to the "better" physicians.
I think we need to try to figure out what quality is. The problem, though, is that no one knows. We do have some "standards". There are recommendations that people should know. The problem, though, is that whether someone follows recommendations or not is no measure of quality. There are often very good reasons to avoid the recommendations. I'll give you a good example: There are times when you should jump out of your window. I generally advise that "Jumping out of the window should be avoided." This is based on sound scientific evidence that has shown this behavior may create injury. However, if there is a fire that has consumed the entire building below you and you are about to die of smoke inhalation, it may be advisable to ignore this particular "guideline".
Outcomes are also a bit of a problem. A very prominent heart surgeon was removed from an HMO panel. They didn't think he was a "good surgeon" because too many of his patients died. Almost every cardiac surgeon in the area fought to have him re-instated. That's because he was the surgeon that every other surgeon sent the patients who were too difficult. They would say, "You're going to die. There's nothing that I can possibly do for you. However, I can call Dr. Smith." And invariably, "Dr. Smith" would operate on them. Well, he didn't have good "numbers". So he was felt to be a poor surgeon.
Well, if we can't use paper, we can't use guidelines, and we can't use outcomes -- what is there?
There is a book I read once, a long time ago: Zen and the Art of Motorcycle Maintenance. It was mostly an attempt to address the question of "what is quality".
There are two variations of intelligence. One of them is what I call "academic thinking". This is the vocabulary, calculations, logic and all of that kind of thing. Another, less understood intelligence, is intuitive knowledge. Some people just know. They can't explain it at all. I guess we can call it "faith".
I think we only can know quality on faith.

It's "Just Business"

A colleague saw a patient for shoulder surgery. The patient was sent to him by another orthopedic surgeon. His family doctor had sent him there. It was strange, because that surgeon asked the patient: "Why did he send you here? I don't do shoulders." So he sent him to this other orthopedic surgeon. You would think, perhaps, that maybe the "primary care" physician thought the other surgeon was better. However, that wouldn't explain why he had sent his wife to the second doctor. In other words, he would send his wife to one physician for surgery and he would send his patients to another one - one who doesn't do shoulders. Well, it's not really much of a surprise. People send the patients where they're "supposed to". That may be the best specialist for the job in some people's minds. However, if you are an administrator who employees physicians, the physician that your employees send patients to may be the one who has the best economic performance gains for your interests. It's "just business," after all.
I hate the medical "business".
In my town, the new hospital CEO has spent the last two years buying every internal medicine practice that can be bought. At this point, they are all owned except for two. So what the CEO says is what happens. Since they are now going to be hiring a neurologist, all of the referrals for neurology are likely going to go there. But that's "just business". I'm lucky, because a great deal of my practice comes through referrals from patients that have seen me previously. But it's still disconcerting. I think patients expect that their doctors are going to make referrals on the basis of quality.

Married

Yesterday I was thinking about alcohol. I saw A who has Alzheimer's. But she drinks. She's always been a heavy drinker. Her daughter and son-in-law were here with her yesterday. They mentioned that they would find alcohol bottles in the apartment. There is nothing that can be done about this. She is still independent and goes to the store. She lives alone. But alcohol, especially heavy use, is very bad for the memory.
I have another patient who thinks he has Alzheimer's. He came yesterday afternoon. He has alcohol-related memory loss. I can tell the difference between the two, but he and his wife like to think he has Alzheimer's. His son, I think, believes me that it's from too much alcohol. He drinks two glasses of bourbon each evening. Each glass is about four to five ounces of bourbon. So that's a lot of alcohol. That's what he's had every day for over forty years. So it adds up.
I've seen him for a while now. But it was yesterday that he told me he drinks because of "marital discord". He actually said that his wife is "mean". He has a difficult time having to be with her. It came up because I've actually gotten him to cut down on his drinks from two to one recently. I gave him xanax to take, which is not a great trick but often works. It's a different way of calming down. In any case, it's worked well because he lost eight pounds in a month (the weight is killing him, and that's another reason I need him to drink less - it's about 800 calories per day of bourbon). But he complained that now he has to listen to his wife more. They've been married for forty three years.
I see people who have challenging relationships. There are marriages that are mutually destructive. The psychiatry people like to use the word "co-dependent". I suppose that's a useful concept. But I like the concept of "co-destructive". People hurt each other. Then, they withdraw from each other. During the withdrawal, they seethe in anger. Then they hurt each other again. It's a cycle. They think there's love in there somewhere, but it gets very hard to get in touch with it. It wears people down. They adjust, but something just slowly slips away. Year after year they lose a piece of their strength.
I've been in a situation just like that. So I know how it affects a person. But I don't have a solution. I'm in a different place now. I'm married in a way that makes me grow. Every day my wife is there to care for me. Of course, every once in a while, I get hurt by something that she does. But that's more likely my overly-sensitive nature than anything that she's actually done wrong. She is very dedicated to making sure that I'm well in every way. I do the same. So we're in a mutually helpful relationship: "co-growing". It makes life wonderful. It makes me strong and happy. Being in both situations, I can't say that I'm able to survive well in the co-destructive marriage. So I empathize with him.
Alcohol used to reduce pain from this type of situation is not going to be easy to cure. After forty-three years of hurt, I doubt that healing is much of an option. Some patients are hard to treat, after all.
My other patient, A, is newer to me. I don't even know what's led to her alcohol use. So she is even harder to treat.

Aphasia

Yesterday, I saw P. She is in her seventies. She saw another physician, who had diagnosed her with Alzheimer's. Actually, she doesn't have that. She has progressive aphasia. Aphasia is when you lose language. She can't find the words that she wants to use. Alzheimer's patients also develop aphasia. But they develop other thinking issues. They have "global" cognitive decline. So this is different. Words that we need get put into a filing cabinet. Then, when we need them we go and retrieve them. P has lost the ability to find the files for the words in the filing cabinet. Her repetition, comprehension, and reading abilities are normal. It's a very interesting illness. It's rare. It's "expressive aphasia". Aphasia actually comes in different forms. Most often, there is loss of most of the language functions.
It's hard to imagine this particular problem. There is normal thinking. What one wants to say is there, but it won't come out. So it's essentially the same thing as just having your mouth taped shut whenever you go to speak. Unfortunately, expressive speach through other means is also impaired. So there isn't a way around it. Usually, these patients can't use sign language to express themselves; they can't write to express themselves (they can copy, but not write original thoughts). They're "mute" but not deaf. She was happy to not have Alzheimer's. She can drive, and do all of her checking, and shopping. She lives alone and gets everything done just fine. That won't go away.
I like expressing myself. I like communication. Most of us like to speak. People speak just to hear themselves talk, sometimes. I guess that everyone has a thing that they would hate to lose. Most of us, I guess, would hate to lose most of our functions. To me, it seems especially hard to lose speech.

Expectations

I think a lot of illness is related to expectations. I used to have a plan to only do three things every day. I suppose I still have that plan, although I usually forget these days. These are the three things we should do every day: 1) wake up (for obvious reasons); 2) find just ONE thing to be thankful for; and 3) handle just ONE difficulty with grace. No one can appreciate all of the wonderful things that occur every day. We're not that talented. We don't stay that focused on the positive things. How often do we appreciate the absence of our stroke, the absence of our tooth ache, the absence of our blindness? These are wonderful things. Then, of course, there are the flowers, the rain, the trees, the air and all of those things that we usually take for granted. Most of us forget to be thankful we have food. Then, we also can't expect that we're going to perform well at every difficult event. No one can do it. So how many things should we appreciate? How many difficulties should we handle elegantly? We have to set our own goals. If we set them too high, we're going to surely fail. This will create unhappiness with ourselves. Our expectations will be unachievable. So I came up with one of each.
This is how it works. Wake up (one thing done). Get out of bed (which may be hard to do - two things done). Take a shower and be thankful for running water (three things done). Then, we're done for the day. It was a successful day. There is nothing else that truly has to be done. So we can just sit back and enjoy what comes. If there are some things that we fail to enjoy, it's OK. The shower covers us. If there are challenges we don't measure up to, that's OK, we're covered by getting out of bed elegantly. This makes life easier.
The expectations we have of others are the same. If we expect others to do more than wake up, get out of bed and shower, we're being unreasonable with them. They have to be allowed to be human and fail. They have to be accepted that way. We need to make sure we don't get too upset about their weakness, since that's human.
This practice, I think, is the only way to really get through disease. There's that "one day at a time" saying. It's a good plan, because it tries to avoid creating ideas about tomorrows (which are expectations). Expectations aren't different from fears. They're the same thing. They are both thoughts about the future. One is future desires, the other is future non-desires. But either way, they are entirely out of our control. The ultimate non-control is death and it's twin brother disease. We can certainly (and should) exercise and eat well. But this only avoids some of the man-made diseases. It doesn't eliminate nature. So disease and death come. They are unpredictable at every turn. Like when people "suddenly drop dead".
In the chronic illness situations there is great fear. There is expectation about recovery and treatment effectiveness. There is expectation from the family for a certain measure of support (which may not come, since they may not be able to provide it). But perhaps one of the most challenging is the expectation that our health will be with us. It's not realistic. Some day, it's got to go (unless we're one that dies all of a sudden). We must make sure to let go of this expectation. Otherwise, when the inevitable comes, there is great disappointment. Most of the patients with illness struggle with letting go. They still expect their health. The fact that it isn't there seems terrible. It seems that they were "robbed" of the health they had. But in reality, they are only experiencing the inevitable. We all have or will go through it. It's not that it's enjoyable to be sick. Of course it isn't. But when we see what is naturally going to happen, it's easier. We know that the flowers on the plants will go with the season. But it doesn't make us that sad. It has to be that way.
We really aren't different than flowers at all.

Simple Procedure

I'm seeing M in the hospital. I was called to evaluate him on Sunday due to problems with thinking. He was in a near coma. He went to the hospital for a simple procedure. He needed a very large kidney stone removed. He developed some bleeding. He got acute renal failure. He went into severe liver failure. Then, he developed problems with brain function. His blood ammonia level was too high. That's what happens with liver failure. The liver gets rid of the ammonia in your blood. So he couldn't think, which is what happens because the brain can't work with too much ammonia. His thinking has improved somewhat, but he's far from his old self. He can't walk more than 250 feet. He has trouble moving around in the bed, from pain which is all over. In order to get his ammonia levels down, we used lactulose. This produces VERY severe diarrhea. So he had a diaper. The nurses weren't on top of it (they're always very busy) and he was sitting in a dirty diaper a lot. His wife isn't doing well. She's very frustrated.
A few years ago, I had a patient who went for a rotator cuff surgery. That's another simple procedure. They called me because she was in a coma after the surgery. I never really understood what happened, but she ended up dying after about one week in the ICU. My guess is that this was from a bad reaction to the anesthesia. I'm not really sure, though.
If you're going to have a simple procedure, you need to understand that these things happen. I'm not fear-mongering. We have to do what we need to do. Obviously, these things are rare. But that doesn't matter when it's happening to you. Things can happen without simple procedures, of course. People slip and fall in the bathroom and die from hitting their head. I've seen that happen. I've seen someone fall off a bicycle and get brain damage. I had a patient who was hit in the head at work by a scissors lift that suddenly collapsed. So we don't need any procedure at all for things to suddenly turn into catastrophe. But we need to be aware of the possibility. I'm not putting in a plug for the insurance industry. It's about feelig lucky. We're lucky if we didn't have a simple procedure, or a fall, or a piece of large equipment falling on us. It's good to remember to feel lucky. I send money places. There are starving children and there's genocide. There are women in Iraq who have turned to prostitution to feed their children (husbands killed, no work). Sending money helps alleviate the suffering a little, but it also makes me feel lucky. That makes it a lot easier to be there for the people who want me to be there for them.

A Happy Life

Today I saw S. He is about 70. He was in great health, playing tennis several times a day when he just slipped. He was in a grocery store where there was a wet floor. He landed right on his sciatic nerve. It was seriously injured. He had very intense pain for a few months, but that resolved. Now he is left with pretty severe weakness. It's been a year already. He can walk, but not quite right. He certainly can't play tennis. It's frustrating for him, because all of a sudden, for no good reason you can't do what you used to do. The very abrupt onset of things is hard enough. What makes it worse, though, is the completely ridiculous nature of the injury. It was preventable and it was caused by pure stupidity (making the floor wet). He's going to sue the grocery store. He's really upset with them. I hope his nerve is going to heal. It could be two years before he has full recovery. But there is a reasonable chance that he won't ever be quite right from this. The good thing, I think, is that there isn't any pain with this. He was worse off when he was suffering with that really severe nerve pain.
I saw MW. She is going to be 80 in two weeks. She is very seriously obese, and has neuropathy and strokes and severe fatigue, and (I think) sleep apnea. She was very happy today. She usually is very happy. Her husband is a patient of mine because he has CIDP which is a severe form of neuropathy. He also has severe heart disease. He has a lot of weakness, and he can't walk very far. They aren't going to do anything fancy for her birthday. I told them that they need to go to Las Vegas (she likes it there). But I don't think that they will.
MW told me that a lot of the people at the nursing home where they were have no sense of humor. They're just not happy. She thinks it's because they didn't have a good life. They aren't happy with the way it worked out. She asked me if I'm happy with my life and my children. Because if I'm not, then I should change it. S. doesn't talk about that, because he's a business man who has little time for that sort of talk. But he leads by example. He just acts like it. Everything is there for the living. He loves his work, so he works a lot.
I don't think that we should be happy and enjoy things to avoid regrets in the nursing home. That's because there are sometimes sudden changes. We may not make it there. Not everyone gets to be eighty. In fact, not everyone gets to be ten. But we do have an obligation to make sure that we're making ourselves happy. Some religions stress the importance of service and sacrifice as the path to holiness. Most have some emphasis on ascetism, or at least charity. It's not that I think we should be hedonistic. But clearly happiness is essential to health. It's essential to the ability to tolerate illness. I don't think that it's unholy to be happy. We just need to provide service and eschew hedonism within the path of happiness. It makes me happy to see some of my patients. I provide them with a "service". At least that's what everyone says. Still, they certainly provide me with a service of at least as great a magnitude.

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.

American Health Care

It turns out that we spend more money on health care in this country (per person) than anywhere else. We spend a lot more. Now there is great debate about SCHIPP. This is the program that provides health care for children who are too wealthy to receive medicaid, but who "need" some sort of coverage. The different states have different ideas about how much money your family can make for you to qualify. Bush doesn't think that it's fair for children to receive federal and state money to help pay for their health insurance, especially if some of them will no longer use private health insurance. We have the highest infant mortality rate in the "developed" nations. We rank 54th in overall health care quality. We have the highest amount of uninsured people. People over the age of 65 qualify for medicare. They receive government subsidized care regardless of their wealth. There are now some provisions being placed to increase the amount that people pay based on their income. That way, the people whose income is over ten million dollars per year don't necessarily get free health care if they are over 65. The thing that is strange is how we decide that those under 18 are different than those over 65. Both of these groups are vulnerable to inability to care for themselves. I think this is more so for the children. I would personally rather see us pay for the children and eliminate the medicare. At 65 you have a much better shot than at 5. 5 year olds have no chance whatsoever of gainful employment that is sufficient to generate income that will pay for health care. A social safety net should consider that issue. Perhaps the five year old is the responsibility of the family more so than the sixty-five year old. I don't really know, though. We are supposed to take care of our family. This includes parents and children. Before medicare, families stuck together and took care of each other. If an elderly parent couldn't work, the kids would take care of them. Now, the government does. But if they take care of my parents, why not my kids? If the interest is in taking care of the American population, it would be all of the vulnerable parts. I see people who are 98 years old in the intensive care unit for three months at a cost of at least $500,000. Their life expectancy is probably less than one year. So we're spending that to keep them alive for a few more months. If we can do that, then we can take care of health care costs for an awful lot of kids who can't even see a pediatrician. Whole Foods has HSA insurance, where the workers get a "savings account" to pay for health care. It dramatically reduces costs, because when it's "my money" I don't want to spend it. People tell me all the time that they'll do it "as long as medicare pays for it." They won't do it, though, if they have to pay for it. In fact, they won't even do it if they have to pay a significant portion of it. But if they behaved like it really was their money, then we could afford to cover all of the people who aren't insured. The insurance companies waste an incredible amount of money. As far as I'm concerned, about 100% of their profits are a waste of money. They should all be mutual companies. It's not a risk sharing pool the way it's structured right now. It's a "business". They're in the business of taking money and not paying health care costs. The better that they are at it, the greater the share of the pie that they take out of health care. It just doesn't make sense. It's a guaranteed increase in cost with no benefit. They don't increase efficiency in any way. The only way to increase efficiency is to have the patients (the consumer) involved in the spending (like with the savings accounts). I don't understand why we can't seem to get this right. It's not complicated, really. It's just that no one wants to be honest about the fact that we have to limit our consumption (as health care consumers) and take more responsibility for what we're spending. If we were all shopping around carefully, we would look at the whole thing. We would also look around more carefully at the Insurance companies. They aren't under the kind of pressure to perform that retailers are. It's easier, for sure, to see what a shirt costs at different stores. We can also assess shirt quality somewhat easier than health care insurance quality. But we're not challenged to do it. So we don't do it.

Mystery

Yesterday M was in. She sees me for her back pain, her "sciatica" and her neuropathy. I have done a somewhat nice job of getting her out of a lot of pain. I give her epidurals now almost every three months. I gave her one and it helped for about six months. She also had gotten some Botox injections in the back. Those were very helpful also. But there were some problems that developed. She got pain that didn't seem to fit with everything and I had her go for an MRI, which showed knee problems. I sent her to an Orthopedic doctor, who drained her knee with some help. Then she got severe swelling in the ankle, so he sent her to an arthritis doctor, who tested her for "autoimmune diseases". She had some positive antibodies, but he didn't think she had a real autoimmune problem. She developed bone infarctions (where the bones die from lack of blood flow). She was sent to a blood doctor, who said she has B12 deficiency and is treating that. She has developed severe osteoporosis as well. She was sent to a university expert in bone disease and immune disase, and they didn't really even evaluate her there. They couldn't find all of her records. So basically, none of us really know what's wrong with her. I'll put her on one of the neurology discussion groups, but I doubt that's going to help much. She doesn't really have much of a neurology problem. I'm stopping her Topamax, because that can cause osteoporosis, although not bone infarcts or these other problems. I'm sending her to an endocrinologist next week. She is a mystery.
Sometimes we never really figure it out. This may happen with M. The endocrine person I'm sending her to is extremely smart. He's very thorough and will likely do a systematic careful approach. I need to do that this weekend also. You look up each symptom and generate a long list of possible causes ("differential diagnosis") and see if any of it seems to fit: the larger your list, the higher the chance of getting the answer. the problem is it's still a "chance". Most diagnoses occur quickly by pattern recognition. It's like when we look at someone's face and know who it is. "How did you know who that is?" You can't explain it based on the details of their nose and mouth and skin. In fact, that's almost harder to do.
When we don't know what's wrong it's often just because there's so much that we don't know. there are diseases that exist which we haven't even named and described yet. There are also disease that aren't one disease, they're two or three diseases that are happening at the same time. While we're all trying to find some kind of an answer, we don't have much treatment, so M is in pain and can't really walk very well. She is, on the whole, getting worse. I know that she's frustrated and getting depressed (What else can you expect?) Even if it isn't neurology, you can't just pass it off to another person to figure it out. If they don't get the answer it's still your patient who is suffering. Most of the time when I get a second opinion it's not because I expect that someone else is going to figure out something I missed or got wrong. They almost never do. It's usually so the patient has some reassurance that they went to the "bigshots". Generally, if I can't figure out, others can't either. There's no despair, no giving up. You just keep on going. People don't think that Dori (the blue fish in the movie Finding Nemo) is really that smart. But she is. She says "Just keep swimming; just keep swimming.." That's really a great idea. You just keep swimming.

Errors

Yesterday there were mistakes. These are very tricky things. I saw a patient from Vocational Rehab. She was young, in the early twenties. She was injured when a heavy box of CDs fell onto her head in March. That's six months ago. Ever since then, she has pretty severe pain in the neck on the right side. She was treated with physical therapy, pain medications, and muscle relaxants. She isn't getting any better. I reviewed what the physical therapy people did with her. She is not on any at-home exercise program. She wasn't sent to me for her neck pain. She was sent over by Dr. L, a semi-retired excellent Neurosurgeon, who wanted nerve testing done to make sure there wasn't any nerve injury. She doesn't have normal neck range of motion. She can't bend or twist the neck properly. It isn't the same on the two sides. The left side moves normal, but the right side has limited motion. This indicates that the muslces don't stretch out normally, they're too tight. That problem has a very simple solution: stretch the muscles. Muscle stretching takes a long time with very consistent effort. The yoga people are very limber, and their range of motion increases with constant stretching. But that hasn't been tried yet. So I told her to do it. If she does it every day, twice a day, then she's going to be better in about three months. It's ridiculous that she hasn't had that done. It's upsetting, but that happens. I'm glad I got to see her, though. It's not because I like to see people make mistakes; not because I want to think I'm smarter than that other person: because now she'll probably (finally) get better.
I saw an eighteen year old who gets shakey. She feels just not right, and at various times in school she starts to shake. She shakes inside which is the most disturbing. It is variable in intensity. Now this girl is quite strikingly thin. Her bones aren't showing. She's just REALLY thin. I think most people would think that she's too thin, although I didn't figure out her BMI (Body Mass Index), the real way to tell if she's truly "underweight". So I asked her about her exercise habits, but she laughed at me (She doesn't like exercise). So I asked her about her eating. She doesn't really eat. She has a piece of toast for breakfast, and then she has a tuna sandwich after school. She has some candy. She says she only drinks water in the day time, but her mother thinks she takes a lot of coke and tea. She only takes those with dinner. I don't know, really. I want to believe that she's only taking the caffeine with dinner. You never can really tell. Anyway, not eating any food makes you shake. Eating nothing and then having candy makes you shake more. But no one told her to eat. Instead they checked her blood. She faints when her blood is taken. She told the people who drew her blood. People who faint with blood draws need to be lying down so they don't faint. But they didn't lay her down. So she fainted, and then had a seizure. Seizures that occur from fainting are called "syncopal seizures". They are a well known thing. They are one of the "provoked seizures". That is, seizures that are a normal reaction of the brain to a certain stress (like fainting). The reason she had that is that when she fainted, the chair that she was in held her up. If she had fallen down, then she wouldn't have had a seizure (she probably wouldn't have even fainted if she was laying down.) The proper treatment for THAT is to not draw her blood sitting up, making her not faint, and eliminating the seizures. Instead, she was given an MRI of the brain and an EEG which were both interpreted as abnormal and indicating seizures from epilepsy. Epilepsy is two or more UNPROVOKED seizures. That's the definition. So she can't have that diagnosis, no matter what the tests say. I had a great professor who told me "If there's any way possible you should always ignore test results from tests that shouldn't have been ordered. Never order a test that isn't crucial." Well, I should ignore the tests (MRI and EEG), especially if they have some subjective component to them (which these do). So she was placed on Depakote which is a fairly dangerous anti-epilepsy (and definitely NOT anti-syncopal seizure) medication. Luckily, that hasn't made her sick yet. I told her to stop that. The girl just needs to eat some food. Actually, she is a little high strung and she needs to relax a little bit too.
We all make mistakes, so it's going to happen. I have a fabulous patient who had surgery with an excellent neurosurgeon in town. He forgot to put the patient back on his coumadin right after surgery, so he had a stroke. That was a mistake. Our mistakes cause physical harm to people. I've made them. There are different causes. Some people just aren't very good at what they do. There's so many reasons for that. Some of them don't have the aptitude, and some of them have become totally "burned out". Some of them don't care enough, or don't try hard enough. Some are depressed, or they're ill and they don't know it.
Some people are good at what they do, but sometimes they make mistakes. Some of those are going to harm the patients. We miss simple things. We miss details. We go too fast and don't see things. We get tired. We do really stupid things because we refuse to go home with a migraine, or we took a medicine that made us goofy. We get emotional and believe patients when we shouldn't or don't when we should, or don't listen. I think it's us and how we are. We aren't really here a lot. We aren't focused on this very moment with this very person and this very person. We're distracted with all the things that are "stressing us out". We're thinking of another thing when we're with someone. We're carrying too many plates. Life isn't simple. So we should slow down. We should just take a breath. Maybe we should blog. Most importantly, we have to always try to find a way to let go of the past and forgive our mistakes. If it's possible, we should try to forgive the mistakes of the other people too.

Yesterday

It's a good thing to just review the day. Yesterday: F. came in. She is on dialysis from renal failure, had a stroke and has a fairly severe and painful nerve injury from her fistula surgery (the site where they do the dialysis). She just go over a terrible infection. P is a new patient. She is fainting, but no one really knows why. She has had every test in the world. She's very anxious, and can't be left alone. T came. Another new patient. She has developed very severe every day disabling migraines. It's getting to the point where she can't work. P - another new patient. She fell and fractured her head from tripping on a hurricane panel floor brace. She is very much off balance and can barely walk. She has diabetes. I ordered some tests. I think she has a spinal cord problem. L: He's amazing. It's a pleasure to see him. He's had Parkinson's for about five years and looks totally normal. His golf score hasn't changed a bit. This is very rare. D- has Alzheimer's. His wife is starting to get burned out, which most of them do. He is depressed. I added some anti-depressants. I changed his Exelon to the new patch, because he has chronic diarrhea (likely from the medicine). E: Neuropathy. He's doing well. F: She is just fantastic. I see her only once a year now. She's been a patient about six or seven years. She had severe neuropathy pain, but it is totally controlled now. She has a great outlook and is happy. Her happiness helps control her disease. S: He is in severe constant pain. He's had a neck fusion at every level with rods. He has a severe daily headache that's uncontrollable. I changed his medicines. He gets Botox in three weeks. It gives him no headaches for about a month then wears off. M: a new patient. She has severe migraines. She was nearly crying so I think she's depressed, even though she takes Paxil. She is young, and has urinary incontinence. J: She just had back surgery. I'm not sure if it helped. She's in severe pain, which she's had for a couple of years. She is allergic to just about everything. D: He has seizures, but they are well controlled. They think he has "memory loss". I just tested him, and the thinking is still good. D: She had severe neuropathy "CIDP". I have treated her with immune suppression for two years. She is great right now, and I think she's in remission. I'm planning to see her one more time, then she'll be done with me. It's going to be sad to see her go, but it's always nice to "cure" someone. L: He got chemotherapy that caused extremely severe nerve damage. He can barely walk and is in severe constant pain. I increased his Oxycontin, and changed his Keppra. I've been seeing him for a few months. He's definitely better, but still very far from "good". Three patients didn't come - either they cancelled or just didn't show. My technician decided she wasn't coming in because she didn't have money for gas. That's odd, because she just bought a new couch. I'm not sure that's a good reason to not come to work.
That was yesterday. Yesterday was a good day. You battle against disease. It's all about gaining a few inches here and there on the front. If there are one or two "good" patients that's what makes the day feel like there's success. With the others, there's just hope, sweat, creativity, hanging in there, and inches.

Words

It is the nature of neurology to see things that are difficult to diagnose. We commonly see people who seem to have problems that no one can explain. One of my colleagues said to me that if he didn't know what was going on, then it was Neurology. I had a GI doctor consult me for evaluation of a patient who had stomach pain. He couldn't explain why there was stomach pain, so he called me. (I think it was what we call "stress".) Sometimes I diagnose the problem but I've become very comfortable not knowing what's wrong with patients. I've decided that even when I think I know what's going on, I should wonder if I really know. One of the most common mistakes that physicians make is having the wrong diagnosis but failing to question the first diagnosis and come up with a new one. The diagnoses that I make which others (sometimes many others) have not seen are almost all due to language. We don't get a good history. Actually, it isn't really that the doctors fail to get a good history. It's different. It's that doctors fail to properly translate. The patients speak English (for the most part). The physicians think in Medicine. Many times, the languages just don't translate well. For example, there is "weakness". When people say "weakness" it means nothing at all. That particular word means "ZXCDL". What is that? That's nothing. They may as well not have said anything at all. It's the same thing with the words "dizziness" and "numbness". These are common words. You would think that common words like these have a meaning that we all understand. I don't understand these words at all. Neither, I think, do most doctors. Some of them think that they know what these words mean. I see them get wrong diagnoses because they think that they understand these words but they don't. Most physicians think that "weakness" implies loss of muscular power, which would be indicated by the maximum amount of force that a muscle or group of muscles or all muscles can exert against resistance. Patients often think weakness means lack of ability to do what they were previously able to do. This may be due to what we call "exercise intolerance" or easy fatiguablitiy. It is sometimes due to lack of coordination, inability to walk, generalized lack of initiative, or shortness of breath. It may be due to many other things as well. I have twice now fixed "weakness" by treating the sleep apnea that hadn't been diagnosed. So in my mind it meant "sleepiness". In the patient's mind it meant "weakness". It's a communication problem.
Even when we listen to each other very carefully, we don't hear what we say to each other properly. We don't understand each other. We think that we know what we've said, but what the other person hears isn't what we intended them to hear. We live in different worlds with different languages. Every person walks around with their own language. This makes life challenging. This creates conflicts between people. It creates great difficulty with others. When we don't understand someone, we should realize that we don't understand them. This way, we can still have compassion for them. When we don't understand our patients too many of us think that their problems aren't real. We think that they're making it up too much. I very rarely think that patients have psychogenic illness. In fact, I think I'm very bad with that diagnosis. I don't think that many people come to doctors because they enjoy it as entertainment. I think they've found something wrong in their body. We just don't understand them. It seems to me most of us don't even understand our own husbands, wives, children, siblings and parents. We don't understand our friends and co-workers. The "closeness" we feel with some of the people some of the time is directly related to our ability to "connect" which comes from the ability to communicate, to understand each other. When simple words like "weakness" are so hard to understand it's no wonder that we find it hard to get along.

NGESI

These days I'm seeing a lot of patients who are feeling as though they aren't good enough. My wife and I had invented a word called NGESI. Often our language fails to describe reality. So we need a new word. Its derivation is from "Not Good Enough Soul Injury". It is a fairly serious condition. We saw this as a developmental issue which results in a pervasive personality issue. People with NGESI suffer in childhood with degradation that impairs the development of proper self-image. They see themselves as inadequate in all of their interpersonal relationships. They filter reality with a bias towards their own imperfections. The concept has helped with my understanding of people.
Now there is a new nuance. Perhaps it's a NGESI variant. There are several different types of multiple sclerosis. They have a different clinical course and a different presentation. Then, there is transverse myelitis. This involves demyelination that occurs in the spinal cord. But it happens only once. So it's seen as entirely different from MS in which there are multiple demyelination events over time and are not limited to spinal cord but involve brain as well. Still, they share the similarity of being demyelination events. So they're the same but they're different.
I'm seeing people who likely didn't have a childhood onset NGESI that came from upbringing that involved creating poor self esteem (it's usually the result of the childhood abuse-neglect complex). They are developing "late-onset NGESI". Perhaps it is "LONGESI". I'm not sure. These people were doing reasonably well. But the disease that they developed has changed them. They are uncomfortable with being "an ill person". They see themselves as inadequate, because "ill people" are not "good people." Of course, "good" isn't really the same as "healthy". It isn't the potentially synonomous nature of the two concepts that generates the loss of self-esteem, though. It's the essence of our judgements.
In our world it is acceptable practice to judge ourselves and others. We work hard to prove that we are better than this person or that one. We talk about how that person isn't really such a "good" person. We create criteria that determine who is and who isn't "good". Our religions tell us that some people are good. They tell us what determines this.
Yesterday, a colleague told me about his experience working at a Catholic hospital. They had a contract with a very large insurer who required abortion services (it was state mandated) that the hospital couldn't turn down. Turning it down would mean fiscal insolvency. So they agreed to sub-contract with a group at another facility to perform their abortion requests, and they were to pay them directly. This way, they could pay another person to perform the abortions, and it absolved them of any wrong-doing. So they created a distinction between performing an abortion (makes you a bad person) and paying someone else to perform an abortion (makes them a bad person). There are also those who know that people who don't accept Christ as their God are going to hell. That's because they believe you can't be "good" unless you meet this criteria.
There is the western secular world that belives (pretty much, with a few nuances) that those who are wealthy are "better" than those who are "poor". There are advertisers who claim that if you use their products you are "better" than if you don't. It's not that they sell good products anymore. It isn't even that they're selling something that will make you happy. It's actually become that their product is necessary if you want to be a good person. So, conversly, if you don't have that product, you aren't a good person.
This has, for most of us, become a way of life. It is even a "purpose" or a meaning for life. People are dedicated to being "a good person". They work very hard to figure out what that is, and how to be that. They have developed a very complicated set of rules and behaviors that apply. So becoming ill can affect this. It does so by changing our abilities. "Good people" are largely the result of their abilities and performances. There are some other criteria, of course. But our productivity and our capability determine a great deal (for most of us) of our "goodness" as people. If we lose this, we lose our value and our "goodness". This is the nature of the late onset NGESI.
It's a very dangerous, very pervasive delusion that some people are better than some other people. It isn't a reality. People are all people. I've yet to meet a perfect person. The imperfections in people are all about the same. People are wonderful things, though. Everyone of them has a wonderful nature about them. They are just as wonderful as dogs. Some say that's not the case. But I think they are. I think we're a good species.
We don't spend a great deal of our time creating criteria for a "good cat" and a "bad cat". When cats are imperfect, we see that it is their nature. Cats sometimes scratch things. They just don't know that a furniture leg is not good for scratching. It's their nature. Dogs bark. That's their nature. When they awaken us at 2:00 am to bark at a threatening fly, it isn't that they're a "bad dog". (I have heard people tell their dog that it's a bad dog, though. I think they're mistaken, of course.) We can't tell the difference between a good dog and a bad dog. We can't tell the difference between a good cat and a bad cat. We can't tell a good anything from a bad anything: spider, ant, butterfly, cat or dog.
Mice are like people. We can tell the difference between the good ones and the bad ones. When you buy mice to feed your pet snake, it's a bad mouse. When you buy a mouse as a pet for your child, it's a good mouse. A homeless mouse (or wild mouse) that wanders into the home accidentally (no doubt looking for food due to hunger that came about from our destruction of its environment) it's a bad mouse. So we can tell good mice from bad mice. And we can also tell good people from bad people.
Anyway, it turns out that when people are ill, they are bad people. They may have been good people before. That doesn't matter once they are sick, though. Then they are bad people.
Sometimes these crazy rules can upset me. Then, I remember that they were made up by these imperfect people. It's their nature to come up with all sorts of delusions. Sometimes, their delusions can come back to harm them. So they suffer with NGESI. Even so, they're all good mice.

Chronic Pain

Yesterday was injection day. I do all of the injections in one day, primarily due to Botox. If you have left over botox from one vial, you can use it for the next patient. At $500 per vial it seems a shame to waste the left over from one patient. So it was chronic pain day. Injections can help alleviate some of that for a while. But many of us suffer with pain that seems to be permanent. It's not a question of eliminating it. It's a matter of living with it. But living with pain is hard. It seems so strange. We think that there should be a diagnosis that causes the pain with a treatment for that diagnosis. But it isn't like that. There are several stumbling blocks. Some people have pain that is chronic and severe without a very clear cause. Others have a good diagnosis but the treatments aren't very effective. I see so many people who just have pain every day. Most of them just have it all of the time. It's tiring. They tend to develop depression. All we do together is try to reduce it. They try to cope with it. There are articles written about how people do better if they are told that they will have to live with pain. I'm not convinced that helps very much. Some people find solace in knowing that others are "much worse off". Others believe that even this type of suffering has a purpose. It might help to know that everything possible has been tried. Some of us can accept it. Some of us are broken in spirit by it. Narcotic medications help some people. They hurt some people as well. It's a very confusing entity, chronic pain. There isn't very much that I know about it generally because it seems to me that every individual with chronic pain is very different. Stress makes pain worse. That's true for everyone. But stress makes everything worse. Anti-stress is not an easy thing. But there's one thing that I think is true. People need each other. So if we can just "be there" it helps. I don't really do a lot for many people in a medical sense. This is especially true with the chronic pain syndromes. But the patients know that I'm there. They know that I listen. They have a sense that "I'm there". And that's helpful. With a lot of friends and family, they are abandoned. That's because we don't like seeing pain. We don't feel comfortable when someone we care about has pain and there's nothing that we can do. This is also true for many physicians. It's a deep need that we have. We have to help to fix the pain; we have to DO something. But the patients pretty much know that whatever we do, it won't do much. So the doing isn't really doing anything. That's why the doing nothing is actually what does the most. We do nothing, we're just being there. That's what helps. It helps because it decreases the loneliness that comes with the pain. Pain isolates us. I don't mean that we don't have to try everything that there is that might actually decrease the pain. We do that, of course. But it doesn't seem to be as powerful as the not-doing. It's very strange.

Daily Death and Rebirth

A brain is a very interesting fluid and static structure. It is not a computer. It changes on a constant basis. But it's not a software change. There is a simultaneous software and hardware change. It changes chemically and structurally on the basis of our experiences. That's what makes it so fascinating.
When we learn something, we know it. We never knew it before. It may be something that we remember forever. That means our brain has changed forever. We don't have the same brain that we had before that moment. This happens over and over again throughout the day. At the end of the day, we have a very different brain than we had at the beginning of the day. This may be subtle. Even if it is, after a year or a decade the changes are profound. So mentally we have a physically and chemically different brain than we once had.
Our brain isn't the only thing that is changing. If we breath in some of the oxygen that goes into our lungs is absorbed. It is attached to our blood. It then is brought into some tissue - perhaps a liver or a muscle. Here, the oxygen is deposited and may become a part of that cell. When we exhale, carbon dioxide is released. Some of that carbon used to be a part of a cell in our body. The urine and the feces also eliminate compounds that were at one time integral pieces of our body. They made up a part of a cell's membrane or other organelle. So if we could monitor the molecules in our body, we would notice that each day (actually each breath) they were changing. Although you may perceive that your body is the same body that you once had, it isn't. It would be like a car that we took every single piece off of and replaced. It's not really the same car anymore.
We are attached to the notion that we are the same person we've always been. But this isn't real. We are constantly different. The one that we were yesterday is dead. Today we are someone else. We are reborn every morning. We are a new person.
Sometimes, this can be very dramatic. In a moment, when we have a stroke, we are very profoundly different. We have completely died. A new person is born. This is very hard for our loved ones. They are attached to thinking that we are (or should be) the person that we were yesterday.
It's a good idea to meet everyone that we know as a new person every day. We tend to treat people the way we think they are, which is actually the way that they were before. But they've changed now. So we need to treat them differently. It's very bothersome this way. That's because we don't know anyone since they're different this minute than they were last minute.
In medicine, this is critical. Every time a patient comes in, they may have changed their diagnosis. People want to know, based on their disease, what their future holds. But I tell them that any statement that I make regarding their health is only valid until the time they walk out of the office. Bodies and health change very quickly, without warning.
People say to me that they had a stress test and everything was fine. Therefore, they shouldn't have had a heart attack one week later. But it's not like that. That heart attack can come suddenly without warning. We might not be able to see it coming.
When there is a new illness in our family we have to confront this reality. We have to look very deeply at our loved one. We have to meet them for the first time and acknowledge that the person we knew yesterday is gone. And we have to realize that we are also a new person. We have to start all over again. In a way, this is painful. Everything that we've done, that we've created and worked for is gone. But in another way it is also pretty exciting. People get bored with relationships. That's because they fail to see that every relationship is reborn every moment and every day.

Computer Medicine

Computer medicine is certainly the destruction of quality care. It is most unfortunate that we have become entirely dependent on the computer to function. I need to create some reports today, but the computer won't let me access my flash card due to computer PMS. I need to access my medications database which I use multiple times per day to look up things (usually drug-drug interactions since everyone who comes here is on ten or more medications) but I can't. The web site doesn't like some of my cookies. The tech support there wants me to delete all of my cookies, which I obviously don't want to do. I do have a "tech man". He is quite good at what he does, but he can't seem to fix my computer, it is in a state of permanent breaking. He patches up one hole and another one pops up right away. Things are getting worse. There is a powerful move for us to all get "EMR". That is short hand for electronic medical records. It is an undisputed fact among the powerful (the "payors") that EMRs improve quality of care. The research that has been done shows that this is not true at all. There is no evidence to support that claim. What it does do, is it allows more access to medical activity that can be more quickly and easily assessed. It will help insurance companies to gain data on economic activity, but little else. There are computerized models that can assess "quality" based on guidelines. More and more power is being conceded to computerized methodology of assessing compliance with guidelines. But there is a very serious problem with this. Research on guidelines shows that they are not appropriate for MANY or even most patients. They have not been evaluated in the setting of multiple medical issues. We know that we should use beta blockers in heart failure since they decrease death. So that is a guideline. However, beta blockers can be very dangerous for diabetics with neuropathy since they cause fainting and broken hips and head trauma. So when I take them off their beta blockers in an attempt to balance risks and benefits, the computers find out that I am performing "poor quality" medicine. Research on this topic does not in any way support that idea, because no one has done research on how we should treat diabetic neuropathy patients who also have heart failure and present with dizziness that is due to "orthostasis". Since hip fractures have a 30% death rate, it is very possible that these people will actually have an INCREASE in their death rate if we treat them with a beta blocker. We just have no idea. So if we have no idea, and what we do know is that the patient is complaining of dizziness with risk of falling and passing out with the medication he or she is in certain danger from a medication with an unknown benefit. There is really no way to dispute this. However, the computer knows that this is bad quality. Meanwhile, I can't open the documents on my flash card. We can cosider putting the computer outside and driving over it with the Suburban (I'm not anti-environment. I have to have a Suburban due to a very large family). However, there is the blogging benefit. I can blog which seems to help with patient care. It lets me think about how taking care of the patients fits in to the universe. Also, I can get the patient notes at home. This is invaluable. If the terrorists or the hurricanes destroy my office, I have almost all of the patient chart information in the laptop. So you have to love them. But it's an awful state of affairs. It's love-hate.

Listening

Today I saw a patient with epilepsy. She came to me from another neurologist. Her and her husband were very upset with his care. He has a good reputation. I've met him twice. I've seen a handful of his patients. This is the third time that we've met. Today they complained about the care they had again. They've spent a fair amount of time on that issue at each of the visits. I think they felt betrayed. Today, she said the key words: "He didn't listen." When we don't listen to our patients they feel betrayed. They feel that we don't care. Care is what they really come for. They come for that even more than anything else. We are, after all, "Health CARE providers." We provide care. Not listening is probably one of the biggest mistakes that we make as doctors. It causes failures in diagnosis. It causes loss of faith. It causes anger. I try to listen.
Yesterday I sent a letter of dismissal to a patient, telling her that I can no longer be her physician. It is a woman with severe, disabling chronic pain. I never could figure out what was wrong with her. Nothing really helped her very much. I sent her for a second opinion at a fancy tertiary care institution, but they didn't really figure out what was wrong with her, either. Finally, we ended up with her on narcotics. Even that didn't seem to help that much. It's been a very difficult case. I just haven't been able to figure things out. Last week, she could hardly walk around the office or get up on the exam table. I watched her out the window. When she got in her car, she was able to bend over easily and turn the steering wheel while holding the phone between her shoulder and ear. The pharmacist called me to ask about her prescription. She told me that my patient was walking around perfectly normally and standing there very comfortably. So I had been listening to the patient when I shouldn't have been. I should have been listening to something else. Something that would have told me that things didn't add up.
Tonight, when I got home, the plants out back wanted water. The hibiscus bonsai were drooping. That's how you know they want water. So I listened to them and went out there with the hose. I found a baby eggplant growing. It's about two inches now. It's quite a miracle when an eggplant grows. I try to listen to the plants, but they're hard to understand sometimes. It's kind of like people. All in all, though, I think it's easier to listen to the plants than the people.

Where did the baby go?

Everyone gets very excited with a baby. The baby creates happiness. We look at it. It is "precious". It doesn't do anything. It just sleeps and poops and eats. It just does the basics necessary to live. That's all. We expect nothing from the baby. We love the baby. We love it just because it is. It's like that as it grows. Babies turn into todlers. Todlers turn into children. Children turn into teenagers. Teenagers turn into adults. Somewhere in that sequence, we change. We no longer look at that "baby" the same way. We may love the person they've become but that love is different. That love comes with expectations and restrictions. We rarely just look at an adult and get happy and see that he or she is precious. So the "baby" inside a person has disappeared. At least our ability to see it has disappeared. So what was that?
What is it that makes a baby so precious. Is it only the potential to do something? Most of us wouldn't want to admit that. We would say that it is the beauty of life. But adults aren't dead. They are alive. If babies are precious because they are a human life, then we shouldn't change our feelings for them as they grow. I'm not sure I understand why babies are so precious. I think we like helplessness and dependency. I think we like something that is completely incapable of producing a "threat". It can't hurt us. But people can only hurt us when we won't accept how they are (excluding the rare cases of true violence). It's a failure of love, of compassion. We refuse to accept the imperfections that people develop over time. That's because their imperfections affect us in ways that we don't want to be affected. We want to have control over life. So when someone else is involved, we lose something we want. That hurts us. Teenagers want to control the world because they know that they know everything that there is to know. That is their nature. This attitude robs us of our ability to maintain control over our own lives. So we are upset with them. That is because we lack compassion for their total lack of humility. But humility comes with the realization that we lack control over our own lives. Hopefully, as we grow we gain some compassion for others. But it isn't enough to see everyone as a baby. The truth, is that everyone is a baby.

x-box games

G, the wife of W came today. They are both patients of mine. G has migraines, and W has Parkinson's. I had meant to write about W the last time he was here. It's on the list of things to write about, but it didn't get to the Blog yet. Some ideas seem to do better if they ferment in the mind cellar for a while. Parkinson's is such an amazing disease that it's hard to even explain in a book, let alone in a Blog. It's a slowly degenerative state in which we lose motor function as well as emotional function (it causes depression). There is shaking and slowness, especially slow reflexes. If you're a truck driver it renders you unable to work. The way we think is mostly geared towards accomplishment, prestige, success and productivity. It's how we define ourselves. We greet each other and ask, "What do you do?" We want to know what people DO. This doesn't really tell us anything. There are doctors who are wonderful people, and there are others who are terrible people. So how does it help me to know anything about the person? Still, it's our focus. When we lose our ability to produce, we lose our identity. It's a shame, really. It's a shame that our identity is now our occupation, our productivity, our economic contribution. I'm not sure exactly how that's happened. Parkinson's takes away your identity if your identity is your occupation. We value our "contribution". The problem is that our definition of "contribution" is largely an economic one. It's not our kindness, love, compassion, humor, personality -- those "don't count". Since he stopped work, he's been playing X-box games. He's "addicted to them", according to his wife. Video games suck people into an unusual interaction. They have "achievement". You can produce a higher level, a higher score, a "win" or some other sense of accomplishment. The "winning" isn't real in a certain sense. That's because it doesn't really create any benefit. So there isn't a contribution. The interaction is with a computer which doesn't change. So even though we play, we aren't really playing "with" anyone. "Playing" should involve interaction with others, I think. The video games cause us to suspend our perceptions of time and lose ourselves. They are an escape from the world. People want to escape when they've had their identity stolen. It's a shame, because what they do have left is given up. The illness takes part of you and you escape to survive, giving up the part of you that's left. I don't see us moving towards defining people more by their personality or their goodness. In fact, I think we're moving more towards seeing each other as "commodities" with "productivity" potential. We assess 0ne another according to our "worth". If you die through an accident, we have formulas used by the lawyers to decide what your life was "worth". Different people are "worth" different amounts. That's why they play video games. They're no longer "worth" anything. It's crazy, but there's a certain reality to it in our culture. If everyone all around thinks that way, it's hard not to let it affect you. So if it affects him, he has no choice but to go somewhere else - somewhere with different rules. X-Box world has different rules. In that world your value depends on how well you score in a game. If you can be completely objective about it, there isn't really any difference. Both criteria are arbitrary. If you are born with certain physical attributes, you may generate a huge income and be "worth" a great deal. It's a purely genetic lottery. At least with X-Box there is a certain amount of skill and practice involved. An altogether different approach would be to value humans because they're humans. Perhaps we could consider intrinsic human value. Or at least we could consider virtues such as kindness, love, caring, compassion as a factor in a person's "worth". It would help with Parkinson's disease, anyway.

Celebration

It's a birthday day. My wife's birthday is today. Some years ago, I came upon a song by Paul Westerburg: "A good day". He has a line that says "A good day is any day that you're alive". Perhaps it should have sunk in earlier since I see so much death in my profession. We should keep awareness of death. Death is always close. I began a practice of imagining the death of my loved ones each night before bed. Then, I can wake up and find out that they're still alive. Each day they live is a great blessing. Since that time I can say with honesty that there hasn't been a single day that I haven't been thankful that she's alive. It helps me love her better. I know that she may die today. I know that she is the most precious "thing" in my life. So when I worry about nonsense like money, prestige, success, aggravation, unpleasant toxic people, medicare, the broken health care system, the crazy country, the unbearable global poverty, the environmental destruction and the future I know that I am not focused on the important reality of life. I forget, of course. I forget often. But I am able to come back sometimes to Truth. According to Ghandi, "Truth is highest God." My wife is the most powerful seeker of truth I know. She cannot permit even microscopic dishonesty. She searches with an electron microscope of emotion for the seeds of dishonesty before ordinary humans can perceive it. And she heals it before it becomes disease. Many centuries ago in China, the emporer asked his physician who was the greatest physician in the land. He said this. "I am well known. I see illness in the body. I use potions and herbs to cure illness and my name is spread far and wide through the land. My brother can see illness in the heart, before it reaches the body. His name is not known outside our village. My father can see illness in one's soul, before it reaches the heart. So his name is not known outside our family." But my wife, she sees illness before it reaches a soul. So her name is unknown. She takes no credit. So there's no hope that she will look back at her accomplishments. She sees none. She has dedicated herself entirely to the protection of the souls of the family. Her success is invisible. The damage that would have occured without her was unseen, since it never came to be. Today is a special day for me to keep in my mind and my heart that I have the privilege to be with her.

Resting

Life is very toxic. There are events and there are interactions with others. They are inevitably imperfect. Events occur as a result of natural forces and actions of others and ourselves. Since all people are imperfect the consequences of their actions are imperfect; this accounts for many events. Interactions with others are necessarily imperfect since the people involved are all imperfect. So we suffer the consequences of the imperfection. To some extent this is "toxic".
That is why we must ensure that resting is an integral part of our daily lives. We have to create a habit of rest. Perhaps in hobbies or perhaps in exercise time. It can be in meditation. Or it can be in having tea. Some cultures have "siesta". But many people don't understand resting. Even resting can be toxic. We use television a lot (average american watches 20 hours per week). Television is very toxic. It is an unnatural interaction, because we don't get to respond. We're just presented to. What we're presented is a lot of violence and advertising. Advertising tells us that we have to have more than we have since what we have is not enough, or inadequate. It has to do that because its intention is to sell us something that we don't already have. The advertiser has to create a desire or a need which is also a lack of satisfaction. The programming has to create something spectacular. That is rarely restorative.
We live a very busy life. We live in constant doing something. Even when we don't do anything, we don't tend to have quiet minds. We don't rest. We go and do something and become toxic. Then we don't stop and "detoxify". We just keep going all of the time. I see so many people who can't get to sleep. They just can't turn their mind off and rest. People actually lose the ability to rest. There is constant stress just in our daily lives.
Often, the patients come with stress induced or stress exacerbated illness. Often, they ask me if this illness could be from stress. That is because they realize, somewhere deep down, that they are under an unhealthy amount of stress. They don't know any way to stop that stress. It seems to be an integral component of life. It is, I think, an integral component of our culture: of our focus on productivity and business.
I wish there was a way to measure the disease burden of stress. All that I can say is that in my own practice the stress of our culture is creating a great deal of illness. There's no science to prove it, but I think a lot of our epidemic of obesity is due to stress. People eat too much because they have stress. Eating (very temporarily) comforts us. It is one of the only ways that people have left to detoxify. Sadly, they eat in a way that is actually toxic. We are left with nothing that can detoxify us.
I often say to people "Don't have stress." They laugh because it seems like I must be joking. The notion is unimaginable for most of the patients. They know that there is no way one can live without stress. I can see that we have some input into our stress level. We can detoxify. It's just that there is no generally known method for it to be found.

Litigation

I really should address litigation. It isn't "illness" what I think the blog is about. But it is definitely about trying to practice medicine. It is about the "illness of the health care system". Something is very wrong with our health care system. We spend over $7,000 per capita on our health care to be ranked 54th in the world in quality. That's not right. We have far too many people without insurance. And one of the economic factors is definitely the litigation. So here is my story:
A neurosurgeon sent a patient to me with a weakness in his leg which he said was "definitely not coming from his spine." I though that he had a small stroke. It didn't show up on his MRI, but that doesn't 100% exclude a stroke. He didn't get better with physical therapy, which he should have. He came in and got upset with me. My biggest mistake at that time was horrible notes. They were about two or three lines. I told them at that time that he might not have a stroke. That was probably something I should have figured out before. But he developed a new complaint. His illness had progressed from weakness to weakness + pain. I said I thought he needed a spine MRI. But he refused it. He then went home. He had always been very conscientous about contacting doctors with all of his symptoms. He went to his cardiologist. The cardiologist's note said "patient didn't like Dr.___. Wants new neurologist. ? MRI spine." He then developed weakness in the other leg and incontinence. He never called me. After two more days, he couldn't walk. He got an MRI of the Spine (the one I had recommended) and had surgery on the problem. He got worse after surgery. He ended up in a wheelchair. I was sued for failure to diagnose. The lawsuit alleged that if the diagnosis had been earlier, he would have never had any problems. He would have been fine. There is no literature to support that. After his surgery, the tumor wasn't completely removed. Those tumors usually can't ever be totally removed. But my notes were terrible. My deposition was awful. My insurance company offered a settlement. It was $1,000,000. That was for an 87 year old man. The plaintiffs demanded 5.2 Million. The trial was a nightmare of torture. The family was all there. They were laughing and partying in the hallways while my wife and I would walk by quielty. The number one cause of "monoparesis" (weakness in one leg) is a stroke. That accounts for most of those. Spinal cord processes are a very rare cause of monoparesis. The expert for them said that strokes never cause monoparesis. He is known lawyer who spends most of his time testifyinig for plaintiffs. My lawyer called him a "plaintiff's whore". So did my brother (a lawyer). The trial ended with me being "not guilty". According to the jury, I did nothing wrong. About two and half years after that, all of the appeals were dropped. That family was very angry. I appologized to them at the mandatory mediation. I don't think it helped.
Now, I have very good notes. I refer many patients for a second opinion. I write down that they don't want to go. I recommend many tests. I write down that they refuse them.
After the lawsuit (seven years ago), I order about $1,000,000 or more in tests that I wouldn't have before the lawsuit. I don't live a day without it. I don't see a patient without it. It is in every single one of my notes. Their anger will cost our system at least $20,000,000. My insurance rates nearly doubled. We all pay that. Their anger has forever change me.
It's not that I don't forgive them their anger. It's just that I gained wisdom. I have an obligation to treat my patients, to protect myself, to my family. I want to continue in practice. Here in this state, if you have three judgements against you that prevail, you lose your license. We really have to be cautious. I am cautious. I understand that these are the "rules of the game". I have to either follow them or pay the price. I accept that. I accept it with no anger. But I do have some sadness that our culture doesn't have the insight to see that the consequences of our system are unacceptable. I think the 20million could be better spent.

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.

Finding a New Path

Yesterday, M came in. M is very difficult. He is a professor with migraines that are impossible. They come every time he reads. He has a vision problem, and he can't see very much. He can see, but poorly. The more serious issue is the severe pain of migraine that occurs with reading. He did well as a professor. Now, with his reading problem, he can't do it anymore. He's going through a bitter divorce at the same time, because "when it rains it pours". Of course, there isn't much that can be done for him. I give him some pills which cause a decrease in his suffering.

But he is interesting. He creates almost all of his suffering himself. Not the medical illness -- he doesn't create that. What he creates is his response to it. He is very busy feeling his loss. His marriage is a big loss. But his bigger loss is the work. It's the prestige, the sense of value, intelligence, contribution, importance and, believe it or not, being busy. We say we don't like being busy. But we really do like it. It takes us away from sitting around and having to think about life, about how we're really doing, what we're really doing. Most of us don't really spend much time doing what's really most important. I know of very few people who spend more time with those they love than they do with their job. But they think that they value their loved ones more than they value their job, or money. So we like being busy to avoid looking at reality too long.

In order to decrease suffering, M wants to replace his career. He wants a similar career. That's because he wants the same sort of reward. He wants the same sort of "success": prestige and importance. But everything he thinks of requires his eyes. Everything he thinks of is academic. He wants to use his intellectual talent like he's always done. It's very scary to think about life without that particular tool. So he doesn't want to jump off that cliff. He doesn't want to confront the world without his academic credentials and background to support him. He doesn't want to start life all over; and he hates the thought of developing a new way to create importance and meaning.

Illness takes things from us. It takes physical things from us. But we choose whether or not we'll give it more. We can give it our happiness. We can give it our mind. We can give it our spirit. Or we can give it nothing more than what it has taken. We can give it only the physical piece of our body that it has rightfully claimed. Respect for illness means that you accept what it takes, and you give that up. You give up your leg or your eye. It doesn't mean that you don't fight illness. That's part of respecting it. Illness comes and it plays a game with us. We didn't ask to play. It's like when someone comes and teases you on the playground. You have to tease back. Some of the things they say are true. And so we have to accept that. But we have to tease back or we'll become sad and hurt. The things that were said that were true that hurt are important. Those are the things we have to look at about ourselves. Those are the things we have to consider improving. The "teaser" shows us what we need to do in order to grow more as a person. It's not that we want to be teased when we're on the playground. It's just that we have to be careful how we respond. People don't want illness. But it comes to play with us. So we have to respond until the play time is over.

We must give up what is rightfully taken and no more. But if we plan to take the least suffering, the illness has to teach us growth. What would you do if you had to give up your academic prestige, your brilliant thinking power? I think it's about people value. We know that babies are so precious, don't we? So where does that precious go that we have to prove our value in some other way? I don't know. We just lose respect for that. My orchids have value, but they don't do anything. They just live. Just being alive creates a value for the babies. But the elderly, demented people who just live aren't of the same value to most of us. It's a terrible thinking pattern, but I think it's true. It's not universal, but it's very prevalent in America. If we can't know that we're precious like an orchid or a baby just for living, then we're in for some great suffering.

People are so precious. They aren't precious when they're newborn babies. People are precious all of the time. They're precious because they're alive. They're precious because they exist. They're even, according to me, precious after they die. They don't have to be a movie star, or famous, or successful, or this or that or anything. They just have to be. If someone is, then they are precious. If we could all only see that, things would be better. We probably wouldn't kill each other so often. We couldn't have genocide. If we believe that our value disappears without some activity, then we can just throw away or even kill all of the people who aren't doing something. They aren't worth anything. We can throw out whatever isn't worth anything. This is what growing we need when we lose a piece of body from an illness that makes us unable to do something that we think is the thing that makes us valuable. We need to grow to see that we are all wonderful.

A Good Day

Tuesday, S, W and A came in. They are migraine patients. Everyone had a success story. They have had horrible, intractable, disabling headaches. But with treatment they are doing very well right now. One of them had forty-three years of headache which "was lifted". She is very happy, because I am apparantly "a miracle worker". I had praise from W and from A also. They are thankful, happy patients. O was here. He is eighty five, crusty, tough and very successful. He lived his own way. He is my complete patient. I have to do his primary care. "You are my doctor". He won't go to an internist. I have explained to him that he would get better care with someone who is an expert in general care, but he won't go anywhere else. He has had a stroke. He still gets himself out in the garden every day. He strongly believes that there is no better doctor for him to see, even for primary care. L called on the phone. She feels great. I have been slowly removing her Parkinson's drugs which she has taken the last five years. She was diagnosed by another physician in another place with Parkinson's which she doesn't have. People love to feel better. They love to have health improved through the wonders of modern medicine. They want the suffering to decrease, or to stop. A doctor has the power to do that sometimes.
Work is good. Work is always good. It gives us meaning and productivity. It makes us feel that we have personal importance. It allows us to give our own personal contribution to the world. Work is what gives us meaning. When I say this, I also mean "work" involved in the care of others: children, spouses, family, friends, countrymen, and people in the world. Giving money to the victims of living in Africa where someone comes and burns the village and rapes the girls who are ten and cuts the achilles tendons of the men. That is "work" also. That is the work of taking care of our fellow man.
Some people think they can't work. That's because they don't have a paying "job". It is very hard. They think they lack value and meaning. They lack money, which is another thing that is good. But they have a wrong perception. They can't see what work really is. Work is not about money (which is nice). It is about the feeling that comes from success. Success can seem to be in a creation. I might be a builder. Then, I think that when I have finished building a building I have succeeded. I might be a banker who thinks when I have created wealth I have succeeded. But these thoughts are incomplete. Why does this mean there is success? Because a building helps people to live and work, things which are hard to do outside there is success. Because when we create wealth someone has more money and possibly more happiness (or more money to send to Africa or wherever). The "success" in reality is the possibilty of helping someone. Work is a form of socialization. The ants of the colony, who are just like us, work so that the other ants in the colony can survive.
It's amazing to be able to do what we do with our skills. It's amazing to see what we've created. We have jet planes and sky scrapers and cell phones. We have computers. And for me, we have medicine. The ants don't get all of that. Even most of the people in the world don't get that. They can't even get medicine.
In South Africa, there was a company who made AIDS drugs generically. They were sued by about fifty different pharmaceutical companies for intellectual rights patent infringements. South Africa supported its right to make these drugs. They wanted to do this because in some areas almost all of the people are dying with AIDS. They can't afford the drugs. So they wanted to make them cheaply. South Africa ended up losing "most favored nation" status with the US, which costs a lot of money for the country due to trading priviledges. So the South Africans don't get medicine. And I'm lucky to be here because I get to use medicines for MIGRAINES! Never mind life-saving AIDS drugs. I'm actually able to help get rid of migraines, so how lucky is that?
Good days are important. They need to be noticed, savoured and remembered.

Losing A Body

Today Mr.B came. He wasn't on the schedule. He had a 1:00 appointment, but they didn't put him on the schedule. I usually schedule him extra time, but instead he was scheduled for no time. I never like it when there's no time. I like time. It's good to have time to see the patients. A lot of doctors don't have any time to see the patients. But I think they tend to get frustrated. I once heard there was a doctor (in town here) who saw 100 patients in a day. I can't even imagine that. It's 7.2minutes per patient in a twelve hour day, assuming no bathroom or eating breaks. That includes the visit and the prescription writing and the dictations for the notes. It's probably roughly 4 minutes of "visit" time. Anyway, Mr. B has ALS (Lou Gherig's disease). It's a progressive loss of strength which has, in my mind, essentially no treatment. Riluzole is the only FDA approved medication, but it only prolongs life without improving its quality for about three months. To me, that's not meaningful treatment. I tell the patients about it, but few take it. On average, people with ALS die in about eighteen months. They die from too much weakness. They aren't strong enough to breath anymore. ALS affects people differently. Their weakness can be in any muscle. Mr. B has weakness in his arms. He can't pick up his arms at all. They just hang there at his sides. He can't dress, shower, feed himself, or clean himself up after going to the bathroom. He hates having his wife do all of it for him. Now he's getting leg weakness (right leg more than left leg). He fell. He has a lot of trouble getting up out of a chair. They just got a special high toilet, so he can get up off it. He doesn't have an electric wheelchair or an electric lift chair. He doesn't want to take any anti-depression pill. I think he's depressed. He says he's not. It's hard to treat someone for something when they don't want treatment, though. The last time he was here, he was talking to me about that he wants to die at some point. Not at this point, but he doesn't want to have to just lie in bed and not be able to "do anything". That happens with ALS. You lose the ability to get up and move. You end up just laying in a bed. Some of the ALS patients can't talk (mouth weakness) or swallow. He can talk and swallow just fine. His wife said today that it's a bad illness. When you have ALS you lose a body. I guess you lose a body with any terminal illness. Death is loss of a body. The thing is with ALS you lose a body very slowly. You just watch it gradually weaken into nothing over about a year and a half or so. Losing a body is a hard thing to do.