Supporting Individuals with Prader-Willi Syndrome During the Pandemic

The pandemic has been a mixed bag for the PWS community. For some individuals, mental health has suffered, isolation has increased, and opportunities for engagement and inclusion have been limited. For others, former anxieties and struggles have been alleviated, and new hobbies and interests have developed. There are fewer opportunities to access food, but also fewer opportunities for activity and movement. Day programs are not currently an option for many, but many did not like their day program and now know it is not necessary to attend. Change of routine can be upsetting for many with PWS, but this population is also accustomed to structured restrictions and is therefore primed for resilience.

Both physical and mental health conditions are prevalent for individuals with PWS, so a great challenge for support persons has been delicately balancing health department restrictions with what is important to and for the supported individual. Perhaps it is physically safer to avoid going to visit relatives, but at what cost to mental and emotional well-being? The limitation on time with family and friends and the lack of being out in the community have certainly been the most detrimental aspects of the pandemic. COVID has disrupted many traditions and events that folks with PWS look forward to every year. It is hard to create a sense of joy and excitement when every day is spent stuck at home. Having staff that are really invested in supporting our individuals remains more important than ever now that staff are doing far more than ever and for many is the only source of outside interaction. Phone calls, cards, letters and packages help remind people that even though there are limits on our movement and gathering, they are still loved and appreciated.

Contributed by Lynn Garrick, RN, BSN, Program Director, QDDP
AME Community Services

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