When it comes to being counted in the approximately 10 percent of people who live 10 or more years after an ALS diagnosis, there are no proven strategies and no guarantees. Maintaining the best, most satisfying life possible, however — a worthy goal in its own right — may increase the odds of being able to mark off that decade on your calendar.
Evidence shows ...
Evidence suggesting a close relationship between quality of life and survival in ALS stems from a number of studies, which have shown not only that mood predicts disease progression and disability, but that psychological status predicts survival.
The hope, based on these conclusions, is that interventions to increase quality of life and psychological status may positively affect disease progression and survival time.
What does it mean?
Studies dating back to the late 1990s have identified a number of psychosocial factors that figure in to well-being and survival. These include:
- dynamics in family composition, income, housing and community;
- relationships and interaction with family and friends;
- assessment of life satisfaction and purpose in life;
- emotional health (happiness, anger, sadness), stress level, spirituality, and depression or feelings of hopelessness; and
- coping mechanisms and support.
Positive psychosocial effects “may influence willingness to prolong life in the face of progressive symptoms, give people reasons to enjoy their day and therefore want more days to enjoy,” says Judith Rabkin, professor of clinical psychiatry at Columbia University in New York and a member of the multidisciplinary team at the Eleanor and Lou Gehrig MDA/ALS Research Center, also at Columbia University Medical School.
Negative factors may include being or feeling alone, boredom, having too little to do, feeling left out and having too little assistance to meet care needs. They may decrease one’s motivation to continue coping with difficulties and lessen quality of life.
Little is known about the potential mechanisms by which psychosocial factors contribute to well-being and predict survival, but there is definitely an indirect component, says Rabkin.
Psychological function may influence the way patients take care of themselves, and also the way others care for them. Physicians may not offer aggressive care if they think the patient is psychologically unable to tolerate or accept it.
Evidence also has suggested psychological functioning may affect immune function.
Seek the good life
Pursuit of a good life and, by extension, good quality of life, may involve cultivating interests and hobbies, remaining socially active, seeking and giving support to others and generally living the most meaningful life possible.
Computers and the Internet, and the assistive devices that make it easier to operate these tools, provide a way to indulge your interests and connect with the outside world.
People typically find support for psychosocial issues from the same sources they relied on before illness, says Rabkin, such as church, family, colleagues, and those with common interests. MDA also provides support groups, online communities and chats.
Clinical depression (prolonged, severe depression, as distinguished from ordinary grief), exerts serious negative effects on quality of life. It can be effectively treated with medication but, Rabkin cautions, a positive outlook can’t be manufactured through medication alone.
Everyone, says Rabkin, with or without ALS, “should make the most of their time, do things they enjoy, and be with the people they care about — regardless of any survival benefit.”