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Alison Grossman, a clinical neuropsychologist associated with the Kessenich Family MDA/ALS Center at the University of Miami, says she got a surprise when she first began counseling ALS patients.
Grossman had worked with people who had cancer, AIDS, head injuries and a variety of other conditions, and found that depression was common. But when Grossman gave depression assessment tests to ALS patients, she found that “the majority of them were not depressed at all, not even close to clinically depressed levels.”
That seemed “counterintuitive” to her, and, working with neurologist Walter Bradley, medical director of the Kessenich Center, she began to formulate some research questions and goals to see if she could find out more.
Personality characteristics reflect a certain amount of genetic influence, the researchers reasoned. Perhaps the finding of a cluster of personality traits might help solve another piece of the genetics puzzle in ALS.
Last year, Grossman received an MDA grant to study the impact of psychosocial factors on ALS onset and disease progression.
Although she recognized that a study of personality traits would have some inherent pitfalls, because “personality” is hard to define and to isolate from mood and circumstances, Grossman nevertheless decided to see what she could find out.
She chose to question someone very close to the person with ALS, such as a spouse or close friend, and interviewed that person not more than six months after the ALS diagnosis.
She and her colleagues used a standard, “five-factor” personality test, which consists of 240 statements, with which the respondent can either agree or disagree. “He’s pretty set in his ways” and “He thinks he’s better than most people” are examples.
Putting emotions aside
Emphasizing that her findings so far are only preliminary, Grossman says her interviewees generally reported that, before the illness, the person with ALS had characteristically responded to stressful situations by forging ahead to meet a challenge, concentrating on what needs to be done, and suppressing painful emotions while doing it.
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Grossman has now extended her studies to include observations of factors that bode well or ill for survival once someone has ALS. She doesn’t have much data yet, but she suspects some coping strategies will prove to be better than others and that psychological health could even have an impact on disease progression itself.
An ALS personality?
Not everyone believes that certain personality traits are correlated with particular diseases.
Steven Albert, who describes himself as “the psychological guy” on the team at the Eleanor and Lou Gehrig MDA/ALS Center at Columbia University in New York, says he’s skeptical of that hypothesis.
Albert, an epidemiologist whose specialty is patient decision-making, says it’s hard to imagine an ALS-prone personality profile. Even if you found some correlations, he says, “you’re looking at people who already have ALS, and the disease could change many aspects of how you think about yourself.”
Albert doesn’t doubt that some personal factors are associated with longer or shorter survival with ALS. He puts these in the realm of deeply held beliefs about life and death, as well as coping skills, competency in disease management and self-care, and access to social support, rather than personality traits that affect disease progression per se.
Test of time
When Albert and his colleagues studied decision-making in ALS, they found that, “on the whole, people have a pretty good idea of what they want, and they don’t change their minds too much.” The results were published in 1999 in the journal Neurology.
When the researchers probed patients’ decisions about life-extending interventions, such as assisted ventilation or a gastrostomy tube, they found that wishes expressed early in the disease correlated pretty well with what people actually did later.
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“I think the desire to make maximum use of life-extending technologies is in most cases part of a deeply held set of beliefs or an ideology, and less a function of mental health,” Albert says.
There are people whose attitude is “I would never consider living like that” and those who say, “I want to be around to see my grandchildren,” Albert says.
In a later study, published in Neurology in 2000, Albert and colleagues looked specifically at religiousness and spirituality and their effect on decisions made by people with ALS.
They found that those who were more religious or spiritual were less likely to want life-extending technology. People who described themselves as less spiritual or religious were more willing to use medical interventions.
Albert doesn’t think these decisions have much to do with mood, mental health or personality, but with “deep, well-entrenched, consistent approaches to the world.”
The religious perspective, he believes, may reflect a desire not to “manipulate the world.” He likens this view to positions about abortion and embryonic stem cell research. Those with a less spiritual point of view don’t mind such tampering if it prolongs life, he says.
Researchers acknowledge that genetic factors now being studied undoubtedly have a strong influence on how long people with ALS survive. Many of these factors are likely to be independent of personality traits and unrelated to decision-making, life skills or social support systems.