The Other Thing

MW was here yesterday. She has been my patient since about 2000. She had several strokes. She is diabetic, hypertensive and obese. She had developed stroke-related Parkinson's at one point, but it cleared up. She has neuropathy from the diabetes. She has developed moderately severe dementia. Her husband is an excellent care giver. He keeps track of everything about her. He always brings her medication list and provides an excellent history about her. He is actually also a patient of mine because he had Guillain-Barre syndrome a few years back - I see him for his issues about once a year or so. He had a heart attack a few weeks ago. They wanted to do an angiogram but his nephrologist wouldn't let them because he thought that the dye would ruin his kidneys and cause renal failure (he only has one kidney). My wife is fond of saying that if you worry about something it will be the wrong thing to worry about. Well, Mr. and Mrs. W have always been worried about Mrs. She has been "clearly" the "sick" one that they need to tend to. I guess they should have been worried about "The Other Thing". Of course the trick is that we never know what "the other thing" is going to be until it is.

Everyone is very busy worrying about all of the wrong things much of the time. I know that worrying is not good for our health. I don't know if they worry everywhere or if it is a very "American" thing. It seems that there isn't enough "inner peace" around these days. There is too much "wanting" and "worrying". I think that they are related. With increased "peace" we can accept the illness that is there now without worry. Those of us who can do that seem to do better.

I told AM yesterday that she would do very well with her knee surgery. I know that because she is that way - she accepts the illness that is there without worrying about it. It's a rare trait among my patients.

Wednesday Sickness Levels

KW and FW (married) were here today. They are both having nerve problems: one in the hands and one in the feet. PN was here, she has Parkinson's with autonomic features. She is fainting again. She doesn't take enough fluid. BM (I know, bad initials) came in for pain from neuropathy which was a little worse. KC was here. She has Lupus, and I'm worried it may have affected her brain. Actually she has seizures from it, but now something else is up. VR came for follow-up from his stroke. He has aphasia, so he can't talk well and he gets frustrated at times. He went to speech therapy and that helped. LW came in - I don't know what happened to him or what he had. I had thought at one time he had Parkinson's, but I was wrong. I think he had drug-induced parkinsonism that I diagnosed wrong. I'm not seeing him again for a year because he is doing great. CL came in because she doesn't want to have back pain after surgery that she's going to have in two weeks to take out her kidney (she has cancer in her kidney). There's not much I can do for that, though. HN came. Her husband (he was my patient) died from Myasthenia Gravis (MG) because someone told her that his symptoms of swallowing trouble were not related to MG so he went into a "Myasthenic crisis". Anyway, she's doing better now. She gets migraines. There were three new patients today, all with nerve problems - either neuropathy or post-herpetic neuralgia.
Everyone who sees me is "sick", or they wouldn't see me. (Although there are a couple of people who insist on coming in even though they are REALLY not sick. I've tried to tell them that they don't have to come in here anymore and they just show up sooner than if I schedule them for a follow up. They develop some sort of new problem.) But there is a certain degree of "sickness" that I expect. In the morning I look at the schedule and see who is coming. Then I know how much "illness" there is. Today there was a lot less illness than expected. This is good, because it's harder when there is more than expected.
Anticipation is very interesting. It puts the reality we experience in context. We need to try to see what happens as what happens rather than as what happens compared to what we are expecting. Obviously, I don't do that very well with my days. I anticipate how much illness there will be. So at the end of the day today I am happy because the day was "easy". No one was "sick". For someone to be "sick" they would have to be worse than I expected. If they are better than I expected, then they are "doing well" - that isn't "sick". Perhaps my happiness is a "good thing" but it isn't really. It's there only because the events were favorable compared with the expectations.
I'm going to try not to anticipate how "sick" people are "supposed" to be.

Holiday Dying

Happy Thanksgiving! Two people died. Neither one was a patient. One died Wednesday and one Thursday. They didn't realize, I suppose, that they were dying during a holiday. One person had a ten year old daughter, the other a fourteen year old daughter. It was Mothers of daughters that died. One had very malignant cancer throughout the bones which was discovered only a couple of months ago, and the other one had very severe liver failure. The liver failure mother died in surgery receiving a liver transplant. That's always so difficult, because people get very excited that there is finally a liver. There is a severe liver shortage (actually, there is a shortage of all organs for transplants) so people wait a long time for a liver. It means hope, not death during surgery.
I don't really like mothers dying. It's a difficult thing. It's hard to see the good in Mothers dying. Of course, we all die and we all know that.
It's hard to see the good in people dying at Thanksgiving holiday.

The greatest challenge that we face is the dying. There is only one way to react: be nice. If we can go to the funeral and say "I was the best friend that I could have been" then we can do no more. I see many people who are near death and they know it. Either they know because of their illness or they know because of their age. Those who report that they are "ready" are those who were nice. They did everything that could have been done to be nice to those who they met. Those who fear death, on the other hand, are those that were probably not as nice as possible. This is how we deal with our personal death. It's like that for the death of the others.

The part that has really no obvious solution is the empathy-suffering for the children. Now there are these two young girls without mothers. Of course, there's nothing that I can do for either one of them. I guess that if I could be nice to them it would help a little bit, but only a very little bit. It is our nature to want to take away that sort of suffering. Of course, we can't. The only thing we can do is to be nice.
It's not always enough, it's just all that we can do.

Togetherness

I see a patient and the patient's wife (and her Mother) are also patients. Today I saw both the patient and the wife-patient. Soemtiemes it works like that. I actually have several married couples that are both patients at the same time. It comes with the territory of working where there are many elderly who tend to have lots of neurological problems. This particular couple isn't that elderly, though.
The wife is lonely. She doesn't really feel close to her husband.
The husband is lonely. He doesn't really fell close to his wife.
They both wish that they could be closer to each other.
One had a stroke, the other has migraines.

I'm so used to seeing people who are lonely because they are alone that it is a challenge to care for people who are lonely even when they are together. There are many widows and widowers in my practice. I suppose that some of them were also lonely when they were together. It takes a great skill and acceptance for the people who are together to avoid being lonely. This is very true when one person has a serious illness. It is even more true when a person has a stroke when they are young. It is not expected. There is such great disappointment. People get hurt and they get angry. Life isn't really fair, but when it isn't fair to you, it's upsetting.
I tried to get them to be alittle bit closer today. I don't know if it will work or not. Sometimes we have to try different things. We have to start with very small tasks and be satisfied with the rewards. Mother Theresa said: "There are no great acts. There are only little acts performed with great love."
So I told them to go for a little walk together every day and get a cup of coffee once a week. To some people that may not seem like a very good relationship. But for me, it would be wonderful. That's because right now they have much less than that. I just want them to take one step forward. One step forward is wonderful. Wherever we are, if we see where we want to go we can just go in that direction - we don't have to get there. It's not about getting there, it's about going the right way. If you have a stroke or get sick at a young age it can throw you in the wrong direction very easily.

Talking at Support Groups

I went to a diabetes support group this morning to talk about the diabetic complications of nerves - diabetic neuropathy and carpal tunnel syndrome and autonomic dysfunction. It was a very nice group. There are so many support groups that aren't good. They are "pity parties". Everyone goes there for the sympathy of the others who are also suffering. When people have feelings, they want "validation". That means that there is a need for someone else to understand. "Please understand my suffering." This makes it somewhat better. The difficulty is that if everyone sits around understanding everyone's suffering, it promotes that suffering in a way. It's important to get past that, though.
The support groups also educate people. Education, of course, is always good. That part I've always liked but it can be overwhelmed by the idea that it's OK to sit around and suffer because everyone else understands.
Whatever we're experiencing doesn't exclude a positive experience. We know this from Hospice people who are "enjoying" dying. Or at least who are dying with grace. We learn how to die with purpose and meaning. This is the key, I think, to illness. So support groups need to have an awareness of this. In this case, with diabetes: "It's OK to have diabetes."
This group had a sense of that. So it was uplifting to see that. It is OK to have illness. It's a part of being human. It is our nature to become ill. So we need to find a way to be OK with that. We need to accept this as a part of our humanity. In being "philanthropists" (lover of mankind) we need to encompass all of humanity within our capacity to love. That's also a part of that "for better or worse...in sickness and in health" thing. We love the person we married even though they may be human from time to time. We fall in love with them when we see their innner divinity. That's easy. Then, when we see their humanity we have to stay in love with them - that's the real trick.
We don't really get to see our humanity as well as we do when there is illness at any other moment. So it has to be OK to have illness.

"Dementia"

TR was here yesterday. He has complaints about memory loss. He is doing very well, despite his inability to remember things. On his Neurtrax, which is the instrument I use to measure thinking, he scores 104 which is just above average. Average is 100. One standard deviation below normal is 85, which is considered "abnormal" on the test.
We have a classification called "Mild Cognitive Impairment". We have "Normal". We also have the famous "Dementia". "Mild Cognitive Impairment" means (as close as I can translate), in English: "There's definitely something wrong, but it isn't bad enough to say that it's Dementia. We have guidelines set up to determine that someone has dementia.
The reality is that people "slip". They don't generally go downhill in steps. The slide one point (a made up point of some sort of unknown unit) per month. The course is a linear one. Although different people decline with somewhat different slopes of the line, there isn't a huge variation. Almost all of dementia is "neurodegenerative" which means either Alzheimer's or Vascular Dementia (many tiny little strokes) or a combination of the two. According to our current standards each year 10% of people with mild cognitive impairment develop dementia.
TR has been a patient of mine for about two years. When we started with his thinking he was 102 on the Neurotrax. That means he's had no change in cognition (he has a better score, but since it's only a couple of points that's basically "unchanged"). I have another patient who has had a somewhat larger increase in his score.
Most of my patients with thinking problems are on some sort of Alzheimer's medication. Very few of them can maintain or increase their thinking, though. So it isn't a matter of just the medications we're using. (I do think that Turmeric and Barcopa are especially effective, though). I know that there are some people with MS who can repair broken brain cells better than others. I suppose that's also true with the dementia illnesses. Unfortunately, no one has really written anything about these people who aren't "sliding". No one even seems to acknowledge that there can be people who are "climbing" instead of "sliding". I don't do research anymore, so I'm certainly not in a position to tell anyone what to do research about. It seems to me that this small group would be very interesting to look at. I want to know why they're doing what they're doing and how I get all of my patients to do the same thing.

It's kind of frustrating sometimes that we don't seem to know anything. Then it seems to me that the most important questions aren't even being examined very carefully.

Breakthrough

There's a "major breakthrough" in the newspapers this morning. Of course, there are only "major breakthroughs" in the media world. In reality, we learn incrementally. I've been in the medicine game for over twenty years. In that time, there hasn't been a single "breakthrough". Everything that we've learned (an incredibly enormous amount) has been a painstaking development of accumulated tid bits of information and hundreds of publications. Anyway, CRP is a protein that is not as famous as some biomarkers. It reflects a state of chronic inflammation which we know is probably an important part of what we now call "metabolic syndrome" which is possibly a pre-cursor state of diabetes versus a chronic "not healthy state" (that's my term). In essence, it's a sign of being an American: non-exercising and unhealthy eating. There was a study of 18,000 people with elevated CRP and normal cholesterol levels who were given statin drugs. There was a 50% reduction in the risk of heart attack and stroke. This isn't a huge surprise. There's been data on this published before. There is also data on reducing these cardiovascular risks by treating people with "normal" blood pressure with blood pressure lowering medications. The mediterranean diet and the effects of exercise, if they're additive probably have an equal effect. We seem to be getting relatively close to figuring out that it's good to be healthy. We are developing all sorts of medications to combat the poisoning that we're doing. Soon, we're going to be just as good at giving ourselves chemicals to stay healthy while we poison ourselves and neglect our well being as if we were just healthy. And we're also going to figure out that it's all a spectrum. The healthier the better. We "just found out" recently (in another "major medical breakthrough") that we can improve outcomes by treating kids with cholesterol lowering medicines. So we can start earlier and earlier. Treating CRP is just one step down the chain from cholesterol. It's a way of starting earlier, because 50% of people who have a first heart attack have "normal" lipid profiles. I think before I retire we'll start giving infants medication in their formula to fight off the effects of poor health habits. (Oh, wait. We do that already - it turns out that breast milk is better for babies, but we can avoid that healthy behavior, cause harm and then add chemicals!)
I try to get patients to exercise and eat right. But this is definitely not the American way. It's very hard in this culture to do that. We're not structured for it.