Virtual Support for Patients & Caregivers

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RAWF

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RAWF

Stress and anxiety tend to be a built-in side effect of surviving a brain tumor or caregiving for a survivor, but add in the current circumstances and there may be moments where you truly feel like it is tough to get through the day.

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According to the CDC, people with underlying health conditions may experience these common reactions to the COVID-19 pandemic:

  • Concern about protecting oneself from the virus because they are at higher risk of serious illness.

  • Concern that regular medical care or community services may be disrupted due to facility closures or reductions in services and public transport closure.

  • Feeling socially isolated, especially if they live alone or are in a community setting that is not allowing visitors because of the outbreak.

  • Guilt if loved ones help them with activities of daily living.

So how to deal with mounting stress? The CDC recommends the following:

  • Take breaks from watching, reading, or listening to news stories, including social media. Hearing about the pandemic repeatedly can be upsetting.

  • Take care of your body. Take deep breaths, stretch, or meditate

  • Try to eat healthy, well-balanced meals. Exercise regularly, get plenty of sleep.

  • Avoid alcohol and drugs

  • Make time to unwind.

  • Try to do some other activities you enjoy.

  • Connect with others. Talk with people you trust about your concerns and how you are feeling.

Read more about the CDCs recommendations for coping with COVID-19 stress.

Connecting Online

For many of us, connecting with others in our situation or experts on the conditions faced by the brain tumor community, helps us navigate these tough times. There are some opportunities to attend virtual meetings, webinars, townhalls and roundtables to get tips and share experiences.

Craniopharyngioma Caregivers Peer Led Virtual Roundtable Discussion
April 17th, 5pm ET
Join the Raymond A. Wood Foundation for a virtual peer led roundtable discussion on the current challenges caregivers are facing. Space is limited to 20 people and questions/comments are welcome in advance. This is an opportunity for us to meet other caregivers and share insights. Register Here »

COVID-19 – From A Child’s Perspective
April 14th, 7PM ET
Hosted by Johns Hopkins Medicine. Pediatrician Rachel Thornton will review the vulnerability of children and symptoms of COVID-19 in children and adolescents and when parents should contact their doctor. In the second half of the webcast, pediatric psychiatric Hal Kronsberg shares strategies to discuss COVID with children and adolescents and considers ways in which anxiety and stress may manifest in children. Register Here »

Managing Stress in Times that Retraumatize: Townhall for Families Impacted by a Pediatric Brain Tumor
April 14th, 2020, 1pm ET
The Pediatric Brain Tumor Foundation is hosting a virtual townhall with St. Jude Children’s Research Hospital’s Dr. Niki Jurbergs, Clinical Director, Department of Psychology, and Dr. Tara Brinkman, Associate Member, Department of Epidemiology/Cancer Control, who will discuss navigating the post-traumatic stress caused by a pediatric brain tumor diagnosis and what happens when that stress meets the stress caused by COVID-19. Register Here »

Craniopharyngioma Survivors Peer Led Virtual Roundtable Discussion
April 24th, 5pm ET
Join the Raymond A. Wood Foundation for a virtual peer led roundtable discussion on the current challenges survivors are facing. Space is limited to 20 people and questions/comments are welcome in advance. This is an opportunity for us to meet other survivors and share insights. Register Here »

Brain Tumor Support Conversations
The Brain Tumor Support Conversations are an online support group run by the brain tumor community for the brain tumor community. This group is attended and run by patients and care partners who have had firsthand experience with the challenges and effects of a brain tumor diagnosis. More Information »

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