Mental Health in PWS – Mindfulness, Exercise May Help

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Staying mentally well can be a challenge for all of us, but is particularly difficult for those with PWS.  While medications can be an important part of maintaining good mental health in PWS, we're always on the lookout for approaches and interventions, beyond traditional drugs, that might reduce the occurrence or severity of behavioral problems and mental illness in PWS.

One technique that's being widely used to improve mental wellbeing in the typical population is “mindfulness.” Mindfulness is a technique in which a mental state is achieved by focusing one's awareness on the present moment. Rather than trying to change an external situation, it teaches the individual to change the nature of their response to a problem. Mindfulness has been shown to reduce stress and improve the sense of well being in a number of studies. But the ability of those with intellectual disability to learn and benefit from mindfulness is largely unexplored.

One small but intriguing study does look at the potential for mindfulness to be applied in the PWS population. In "A Mindfulness-based Intervention for Self-Management of Verbal and Physical Aggression by Adolescents with Prader–Willi Syndrome," Dr. Nirbhay Singh and colleagues examine whether mindfulness might help individuals with PWS better manage their sometimes volatile emotions. Dr. Singh was a participant in the 2015 PWS mental health research strategy workshop

Dr. Singh’s group worked with three adolescents with PWS to teach them a mindfulness technique that is designed specifically to help individuals be better able to regulate their emotions during emotionally arousing situations.They had previously shown that this approach helped individuals with autism and autism spectrum disorders. This approach teaches individuals focus awareness on the soles of the feet during emotionally stressful times.

Parents were first trained in the technique; they then taught their children with the help of an experienced mindfulness trainer.  Following the training period, all three individuals with PWS showed impressive decreases in verbal and physical aggression using this technique, as determined by tracking such incidents using an iPhone app. The training and practice sessions lasted 33-37 weeks, but beneficial effects were still seen after 12 months. The authors emphasize that the mindfulness approach, although simple in concept, requires consistent and persistent effort to master and apply in real life situations. Nonetheless, this encouraging result warrants follow up to see how it might be expanded to a larger group. 

Another new study looks at the effects an exercise regimen on people who have experienced an episode of mental illness. We know that individuals with PWS are susceptible to mental illness, particularly psychosis, as described in an FPWR blog post in 2007. Little is known about how to anticipate such incidents (this question being looked at in a new FPWR funded study, Predictors of Psychosis in Prader-Willi Syndromeand how to lessen their severity. 

Pilot research looked at the benefits of exercise on a first time psychotic episode. Initial results are from 31 patients (who did not have PWS) with a first incident of psychosis. Participants received an individualized exercise training program of moderate to vigorous physical activity, tailored to their individual preferences and needs. The outcome of these individuals was compared to others with the same diagnosis and ‘treatment as usual’, without the exercise intervention. The results were very positive for those who incorporated an exercise program into the treatment (and the study authors were very successful in recruiting and retaining the participants, which is also important for feasibility). These individuals had less negative symptoms, better social functioning, and better verbal short term memory.

Thus, an individualized exercise program might not only improve physical and cardiovascular health, but also hasten recovery from mental illness. It is certainly of interest to see if a similar program will have such a positive effect in the PWS population.

For updated information on PWS clinical trial opportunities and to sign up for a monthly PWS Clinical Trial Alert, visit the PWS Clinical Trials page.
PWS Clinical Trials

Topics: Research

Theresa Strong

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Theresa V. Strong, Ph.D., received a B.S. from Rutgers University and a Ph.D. in Medical Genetics from the University of Alabama at Birmingham (UAB). After postdoctoral studies with Dr. Francis Collins at the University of Michigan, she joined the UAB faculty, leading a research lab focused on gene therapy for cancer and directing UAB’s Vector Production Facility. Theresa is one of the founding members of FPWR and has directed FPWR’s grant program since its inception. In 2016, she transitioned to a full-time position as Director of Research Programs at FPWR. She remains an Adjunct Professor in the Department of Genetics at UAB. She and her husband Jim have four children, including a son with PWS.

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