Amber M. Sousa

I found this article in conjunction with the Magliano article to highlight the fact that relative's who see a person/patient deteriorate from a previous level of functioning will sometimes believe that the sick person has more control over their symptoms than they do. (or than we as clinicians believe they do). It also reminds me that clinicians never get to see the person before they become ill and should keep in mind the changes that the family has seen their loved one go through in a short amount of time. It is almost as though the family needs to grieve the 'loss' of their old loved one and accept and support a new person, who is sick. The comment that the one doc made "face the facts" reminded me that the family should have been given the facts, the information on what schizophrenia/schizoaffective disorder/bipolar disorder are and how they can be managed. The way they almost instructed this family to give up hope was sad... If everyone just gave up on a family member who had a psychotic episode, then there would be a lot fewer good outcomes.

I found this article interesting in that it makes me think about how important it is to make decisions about your future before you are unable to or someone decides that you are unable to. I don't think that data like this can be used to make decisions about who can consent for a person with AD who is unable to consent for themselves, especially in research with significant risk. I know this makes research even harder to do but I was trying to put myself into this situaion. I would want to know what the study is looking at, the design, etc. and be sure that I agreed with what they were doing. If I was unable to consent, I don't think I would be able to do this and so, would not want to participate in risky research. I guess it is important to put this stuff in writing, but in order to do that you have to deal with thinking about your own possible loss of cognitive functions, and this seems like something that would be very difficult for some people. For research that is not risky, and may give some benefit, when none would be likely otherwise, then I think surrogate consent is OK, but it is optimal to have the patient indicate this when they are able to. I guess the problem is that when someone is diagnosed with AD, you wouldn't want to solicit them right then when they have enough to deal with already.

Somatoform disorders are a real problem for docs. I believe that it's very important to get the somatoform disorder treated so that people can begin to understand the difference between their aches and pains due to stress vs. those due to treatable physical illnesses. I guess these types of patients can be difficult to work with, especially when doctors see a lot of people who have clearly treatable physical illnesses, but are not complaining. However, it is always good to keep in mind that people with somatoform disorders are not malingering or complaining for attention. They are actually suffering a great deal. However, its easy for a doc to dismiss a patient who has been in four times in the past 2 months for "psychosomatic" complaints. But, these people also get sick, and it is important not to overlook a medical illness that needs to be treated. I think a good way to start is to get these people good psychological care so that they can learn to manage these symptoms on their own.

This reading makes the need for cultural competence stand out. The doctors certainly wanted the best for this child, but they didn't know how to give that to her, being so unaware of the Hmong beliefs and culture. It lead to a lot of resentment and suspicion that these parents were intentionally noncompliant with their daughter's treatment.
Also, all of the turbulance around this child could not have helped her seizure disorder any. The stress that it must have caused the whole family is disturbing to ponder.
I agree with Bill's post that there should have been interpretors available in a hospital where 20% of the community is Hmong!
I think that these docs should have taken a look at their code of ethics! You can't have people sign things that they can't read.

I liked this article because after doing a lit search about PD neurosurgery, I found a lot of papers recognizing how good it was. However, they didn't look at other factors, like the one's discussed in this article. I think it goes back to that idea of the self. If we come to know ourselves as having these motor problems and then all of a sudden they are much better, it is a difficult adjustment. People assume certain roles when they are sick and a 'cure' changes their role in almost every facet of their lives. It also changes the roles of those around them. I think it is especially hard for people who don't "look sick" anymore, but still have illness. For example, I have a friend who is 27 and has a pacemaker due to a heart condition since she was 18. When she has to go through a metal detector, she tells the guard that it will likely go off. She says they always look at her funny when she tells them she has a pacemaker. It's seems that it would be hard to deal with an illness that other people can't recognize and see. But then it must be terribly hard for people who have disabilities that are so visible that they are always getting pitied by others. I think a lot of those people prefer to be treated like everyone else. But most of all, the change from one to the other, as in the article, must be the hardest change.

The Code and Herrmann article discusses a lot of issues that are not only problems in aphasia rehab, but also many other psychiatric and medical conditions. I think, in our culture especially, when someone becomes disabled and can no longer make the same kinds of contributions that they formerly were able to make, they are seen as less of a person. Maybe this is not true for their family, but surely for people who don't know them well.
Our culture can also be materialistic and shallow, making it even more difficult when a condition renders a person looking less physically attractive than they used to be. I remember once my mother, after having a mastectomy and while receiving chemotherapy, went to a support group for women with breast cancer. There was a younger woman there who was very upset about her husband's request that she not have surgery to remove her breast, because she would become less attractive, even though her doctors thought it was medically necessary. I think my mother came home from that support group more disturbed than when she left the house. She never went back. And she never wanted friends to visit and see her when she was sick.
I think our culture's obsession with youth and beauty really devalues people who become ill and less physically attractive. I can't even turn on the television without seeing ads for wrinkle creams and youth potions, and makeup, and this thing you "need" and that thing you "need." I think this all applies more for women.
But for men, I think it is when a man is no longer able to make money or keep his work status or even his physical strength, that he is devalued in this culture.
I am on a tangent and I'm sure this is all pretty obvious, and depressing. I'm sure one could argue that its evolutionary, but I still think it's sad and I think that popular media could do less to promote these materialistic ideals.
I'll try to do a happier, more hopeful post next!

The podcast about Clive was interesting. It got me thinking about "transference". Sometimes, a person/patient gives me a certain feeling. Rarely can I point to why I feel this way about a person I've never met. (sometimes they remind me of my mother and I am aware of it). I assume that it is because of something about their physical features, movements, speech, etc. reminds me of someone I knew. I guess this is the same kind of memory that Clive has for his wife in a way. He can't describe her physically, but he "knows her embrace".

I find the discussion in the article by Lyman invoking memories of clinical experiences that I've had. It makes me think about how, when a label is put on a person, their previously "normal" behavior will often now be seen as symptoms... When I see a patient with "inappropriate affect" I wonder to myself, "Who am I to impose my belief of what a normal show of facial expression would be for a certain discussion." The patient may have has this reaction regardless of their illness, but now it's seen as part of their schizophrenia symptoms!
It seems as though it turns a patient into a walking "case" of their diagnosis, instead of a human being, that could be sympathized with. Maybe clinicians need to do this to a certain extent in order to avoid the emotional cost of so much identifying with a patient.
Maybe I'm taking this a bit too far...but I think it can really limit a patient's progress when they question all of their behavior as being possibly pathological.
Also, I think this is especially a problem in personality disorders, where almost anything a person does in a relation to others can be seen as "bordeline", etc.

In Sabat's article, he raises the idea that people with dementia might actually be harmed by the decision to label them as incompetent. Therefore, what is thought to protect someone from making poor decisions, possibly uninformed decisions, might actually hurt their ability to make those decisions. This is an interesting area where law and psychology meet. Is it possible that a person could be incompetent in some areas but not in others? I think that it is possible. Sabat discusses the phenomenon in which a person with AD can perform some tasks at a treatment facility, but not in their own home. This bridges nicely with the paper about examiner influences on neuropsyc testing. There are surely influences other than one's neurological functioning that affect their behavior.
I think this also relates to the state-trait issue. Is it possible that some constructs or neuropsychological functions are more of a mixture of state and trait than we think of them to be?
Maybe what I am trying to say is that neuropsychological functioning may be more variable than we think... This can be disconcerting and hopeful at the same time. While some measures that we think are valid may not be, there is also the possibility of change in more areas than we currently believe.

I am pretty sure that people with Tourette's Disorder actually can supress tics. For example, I know of a teacher who had Tourette's and was able to supress the tics during the day while he taught, but had to "let them out" after work, almost as a catharsis of the tension that had built up all day. But, of course, that could be some function of his experiences causing his brain to want to supress the tics in order to minimize embarrasement/negative consequences, and then it is again possible that there is no self/free will, but only physical brain.
I was administering a SCID interview and realized how everything is based on this dualist philosophy! During the interview, I have to ask "was this symptom due to a physical or medical problem?" It implies that pychiatric symptoms are not caused by physical events. So, for instance, if the person had depression, if it is not due to things such as hypothyroidism, and it is not explained by our current available physical tests, then it is psychiatric, and you are not labelled and "mentally healthy with a physical illness" but as "mentally ill" which is extremely stigmatizing as we all know. I guess this is all pretty obvious, but I just didn't realize how dualistic psychiatry is until I really examined the questions that I was asking myself!
Also, when a psychiatric diagnosis is given, ther patient often labels him/her self as such. For example, a patient will often come in and state " I am a schizophrenic." In contrast, I would not go into my GP's office and state " I am an athsmatic." People tend to define themselves with these diseases, but maybe it is because of this sense that when something is wrong with the brain, there is something wrong with ther self.