There is no way you will not benefit from it

Anyone touched by FOP knows, the disease affects entire families. For those helping a loved one navigate FOP, self-care is often a low priority. But it shouldn’t be—and it doesn’t have to be. By building a self-care practice into existing routines and habits, caregivers like Ram Shankar are better prepared to handle tough times ahead and enjoy the day-to-day.  

Ram’s family lives in India, and his daughter was diagnosed with FOP in 2007. Since then, their family has been researching, consulting with experts and searching for new ways to manage FOP. Ram acknowledges, it gets overwhelming.

“It can be extremely exasperating for caregivers, who are trying to knock on all the doors looking for a solution,” said Ram.

The IFOPA’s Resilient Living program has become a source of support and encouragement along the family’s FOP journey. Specifically, the Focus on 5 Sensory Self-Care Series helps them understand how each of the five senses — sight, smell, sound, taste and touch — can be used to create a self-care practice to relieve stress and manage challenges. 

“The Resilient Living program gives hope, optimism and courage to caregivers, so that we can handle ourselves first,” said Ram. “Then we can help our family member with FOP.”

Throughout the six-week Sensory Self-Care Series, participants meet virtually to discuss how a specific sense impacts them and learn how they can use that sense to their advantage. For instance, how smart food choices (taste) can help reduce stress and raise energy. Participants walk away from each session with a plan to incorporate new lessons into their life.    

Ram compares it to an emergency on an airplane. We all know to put on our own oxygen mask before helping others do the same. Although it may feel counterintuitive to make self-care a priority when looking after a loved one with FOP, it is an essential step. Only then, will caregivers have the mental and emotional strength to be the best support system. 

That’s not to say a self-care practice eliminates all hardship. It will always be a work in progress, evolving with changing circumstances. Ram admits that at times, it can be difficult to look past the fear and anxiety. But he has discovered tools and resources to reduce those negative thoughts.

“The program provides a different dimension and perspective to handle life situations that result from FOP,” said Ram. “It helps us look beyond the dreaded disease and deal with our lives objectively.”

With some of the emotional burden lifted, Ram has more clarity and energy to be an effective advocate. He has the tools he needs to turn his hope into intentional, positive action, sometimes without even realizing it.

“There is a perceptible calming of the mind, so that caregivers can start thinking clearly about what needs to be done,” said Ram. “The lessons from the program stay with us, and we knowingly—and unknowingly—implement them.”

Ram encourages others to join the next Focus on 5 Resilient Living Sensory Self-Care Series, beginning at the end of the month, offering this advice: “Sign up and take it seriously. Implement it in your life,” he urged. “There is no way you will not benefit from it.”

You can register for the next Focus on 5 Series here. For more information, please contact IFOPA Family Services Manager Hope Newport at [email protected].