Have you ever been in a room filled with people yet felt alone? At times, although people surround me, I feel detached and watch everyone, including myself. I search for a version of my former self-a version that I will never find-she no longer exists.
I choose the “me” that others see. I am not embarrassed by the symptoms; I fear the word attached to them – progression. My progression has been slow. However, I have times when I am afraid and somewhat paralyzed. I retreat to what is comfortable – my classes, my husband, and my writing.
However, our family took a leap of faith in November for National Family Caregivers Month. Together, we shared our story in a video project, “The Ripple Effect of Parkinson’s,” by Kyowa Kirin.
Why was it a leap of Faith?
We shared our story through individually recorded interviews via Zoom. A few weeks later, on the Kyowa Kirin campus, we participated in a live “Lunch and Learn” panel discussion and subsequent interviews. While we were given guided questions and met with the production team, the event was unrehearsed. I could not retreat – none of us could – we were in it until the end, which resulted in a real story of a real family.
For me, hearing my family live and unfiltered was raw and emotional. Many of their responses were heartwarming, while others were heartbreaking. As a wife and mother, you strive to protect your family, and I did the best I could at the time. However, they had struggles, and hearing some of them for the first time was emotional. Again, unable to retreat, one perceptive mom noticed and said, “You were trying to protect them, and they were trying to protect you.” We had the best intentions, but our communication was sometimes lost.
Keeping the lines of communication open was a big takeaway. While I cannot speak for everyone, I am the author of this post, and our communication would be a welcomed “do-over.” Unfortunately, it doesn’t work that way. However, we hope other families can communicate better from hearing our story.
Our son, Ryan, shared his thoughts on communication and the family, “There was a lot of talk about how important communication is. I was surprised to hear the emphasis even coming from our own family. As part of any work done for caregivers and families, there should be a focus on communication strategies and conversation starters related to a diagnosis or communicating progression and changing needs to expectations for the family.”
As a family, we were moved by the genuine interest and support of the group that joined us for the panel. Pharmaceutical companies supporting organizations like the PMD Alliance and interacting with and representing the patient community are becoming crucial in advocacy.
The DePorters have seen that we are more than our story – over 8,000 views of the video project, “The Ripple Effect of Parkinson’s,” is also a story of a community of families navigating a journey of a family diagnosis they never expected.
