Legacy Building – The Ziegele Family Experience

When Dale and Judy Ziegele of Ridgefield, WA, received Dale’s diagnosis of ALS in September of 2022 at the age of 79, their focus changed.  

Dale and Judy have been married for 56 years and have an extremely close relationship with their children and grandchildren. Dale worked as a youth director, pastor and has had a passion for helping people throughout his career and life. This makes communicating an extremely important goal for Dale and his family as his ALS progresses.  

One of the vitally important things Dale did right away was to bank his voice, on the urging of his son, Jon Ziegele, an occupational therapist who also works with ALS patients. 

Voice-banking is a process in which a person can create a synthesized voice based on recording speech samples for future use with a speech generating device. This can be a significant way for individuals to continue to communicate in a personal way. 

Message Banking, which is the process of digitally recording personally meaningful voice messages like, “I love you,” or more functional things like saying a pet’s name. Banking messages of importance can be a powerful way to continue to share stories, jokes, phrases, and heartfelt sentiments with loved ones as speech is impacted.  

Dale, Judy, and their family recognize the importance of legacy building and moved quickly to begin this process after his diagnosis. Dale’s daughter in law, April Ziegele subscribed to a group called Artifact, a service that offers professional interviews and edits the interviews into podcast length recordings that can be shared with others.  

Soon after, the family decided to reach out to friend Heidi Blake from Wisconsin, who had lost her father to ALS three years prior to Dale’s diagnosis. After a brief text exchange, Heidi and friend, Ally, volunteered to fly to the Pacific Northwest to record Dale’s stories, and according to Dale’s family have invested an incredible amount of time and energy to compile interviews of Dale, family, and friends into a video.  

Not only has Heidi and Ally’s involvement in this project made a difference for the Ziegele family but has also made a considerable impact on them. Heidi shared the following: 

“The journey that we’ve gone on to document Dale’s story has been extremely meaningful for those involved and to me personally. During the three days Ally and I spent documenting Dale’s family, they treated us like family and I am so inspired by their stories. The love that Dale has shared with so many has had a trickle-down effect, which is displayed in this video, which in turn will inspire others to share that love as well.” 

One of Dale & Judy’s sons Paul Ziegele shared the impact that this project has made on him and some tips he has learned along the way. “Hearing the stories of my parents’ life has reinforced my values and priorities. It has made me reconsider where I invest my time in ways that matter most. As we’ve recorded these it has been so uplifting to laugh, smile, and sometimes cry together – but the chance to relive the blessings of the friendships has been so inspiring.” 

Paul’s tips for others wanting to try a similar legacy project process include:  

• Using a good microphone – “I can’t emphasize enough how important it is to use a good microphone to capture the best quality audio and not have the distractions of background noise.” 
• Consider who’s asking the questions – “Since most people are so relationally oriented, they aren’t likely to be successful just turning the camera or the audio recorder on by themselves. It is SO IMPORTANT for people to relationally connect with someone when they are telling their story. This advice was so helpful for us and came from an ALS caregiver support group – get the grandkids to ask the questions!” 
• Think about how your stories could include closed captioning (CC)! “After my dad’s diagnosis, my grandma, Fay Ziegele, celebrated her 100^th birthday. Her hearing isn’t that great. To make sure she could see and hear some of what was going on, I transferred some of the raw video recordings to DVD and hard-coded the closed-captions on the screen so she could follow along. Sharing the video with CC was a way for her to come to grips with his diagnosis, and also to participate in the uplifting stories.” 
• Get started today.  Don’t let technology uncertainty or concerns about making a perfect video get in the way of doing something now to make or document a memory. I often ask the question “Five years from now, what will we want to remember about today” to frame our priorities. We have been very fortunate to use the time and the strength of dad’s voice – don’t waste those chances!