Mellany Lieuwen is PAN’s Oregon State Director, and mom (and mother-in-law) to Gretchen Garie-Church and Michael Church, PAN’s Florida State Directors . Mellany lives in Ashland, Oregon and shares with us her advocacy experience in the Parkinson’s community in the Pacific Northwest.
PAN: What drew you to becoming an advocate and working with PAN?
Mellany: I moved to Oregon in August 2010. My daughter, Gretchen, has Parkinson’s and so does my son-in-law, Michael. Both have had Deep Brain Stimulation surgery. When Gretchen had her first surgery in 2008, I stayed with her from Thanksgiving through the New Year to help out during her recovery. During that time, in spite of just having had surgery, she seemed constantly busy with Parkinson’s advocacy -- online, on the phone, all from her bed. Michael too, along with caregiving, was always busy "doing the work.” I learned so much from both of them, though not nearly enough to know what it's really like to have PD. But I knew I wanted to do something to help.
When I went back home to Tennessee, I applied to be a Congressional Coordinator for PAN. Soon after I was accepted, I went to my first PAN Forum. You cannot believe how becoming an advocate for Parkinson's and PAN has affected my life in a positive way -- every part of it! I spent about a year and a half working as an advocate in eastern Tennessee, established a support group there, and was able to get some good publicity during April for Parkinson's Awareness Month as well as other education opportunities.
PAN: Two years ago, you moved to Oregon from Tennessee. Was it hard to transition your advocacy work?
Mellany: When I moved to Oregon in 2010, Michael, Gretchen, and the PAN staff asked me if I would like to the Oregon State Director. I'm so glad they asked and am happy to have the opportunity to advocate in Oregon.
How hard was it to relocate and build my network in a new state? It was hard only in a physical sense; I had no car! It was very easy to make friends in the area to which I moved and before I knew it I was so busy! The greatest benefit came through the National Parkinson Foundation (NPF) State Chapter --Parkinson's Resources of Oregon (PRO). Their Executive Director, Holly Chaimov, had been the PAN State Coordinator and because of her very busy schedule, resigned, and I replaced her. PRO is a fantastic organization that has introduced me to many, many opportunities.
PAN: What kinds of things did you do to learn more about Parkinson’s resources and organizations in Oregon and the Pacific Northwest when you moved there?
Mellany: Well, in addition to PRO being a great resource, my kids are my mentors and teachers. I call Gretchen often to ask questions. Michael is always sending me items about Parkinson's in the Northwest. Other PAN State Directors have helped open doors, too. It’s a very supportive network. I'm so lucky.
PAN: What’s the Parkinson’s community like in Oregon?
Mellany: Despite being spread out across the state, the Parkinson’s community here is warm and inviting. When I first moved here, I didn’t have a car, and that made things a little more challenging. But now, I have a fiancé who drives and is very supportive of my volunteer work. He has said he'll take me anywhere I want to go and he has. In addition, and I'm so excited about this, I have two new Assistant State Directors, Nancy Crocker and Kevin Mansfield. They are great!
PAN: Your daughter and son-in-law both have Young-Onset Parkinson’s. What is that like for you, as their mother?
Mellany: Oh gosh, until I stayed with them during Gretchen's surgery recovery I was a mess! I was so afraid if I carried on with my life that Gretchen would feel that I was abandoning her. I was immobilized and scared. Even at the time I knew on some level that I was selfish, but when I saw her with her wonderful husband, their unbelievable friends, and the best church ever, I realized I wasn't doing anything but dragging Gretchen down. She was being a better parent to me than I was to her. Michael is a pillar of strength. He has taught me how to be a good mother-in-law. I love him a lot!
PAN: When you look back over the past few years, what are some of your favorite or poignant advocacy moments?
Mellany: Finding out Gretchen and Michael are being honored with the Milly Kondracke Award for Outstanding Advocacy at the Udall Dinner in Washington, D.C.  this October is the success story I’m most proud of. That will be a special moment for me.
PAN: Is there anything you find frustrating or challenging in your advocacy work?
Mellany: Not having Parkinson’s disease puts me in a position where I feel like must sometimes tread very carefully. On one hand, I often wonder: how can I, without PD, really speak to and encourage those with the disease? Again, this is where my kids help. I can talk about them and what they do and learn how to be inspiring to others and encourage them to become advocates. On the other hand, I don't have meds to worry about or the physical challenges that come with Parkinson’s, so I can spend a lot of my time out there raising awareness and listening to those who want their voices to be heard.
PAN: You are a very busy advocate leader! What do you do in your “free time” (if you have any)?
Mellany: Lately I've been working with my significant other to remodel his house so I'm more comfortable in it. We plan to marry in August. I’m retired now, but when I was working, I worked in the home sewing/fashion industry as a national representative for a major company and as an educational director for several fabric store chains all my life. I love to sew and can sew just about anything. I still teach occasionally, too.
PAN: What advice do you have for those who might not have Parkinson’s, but want to become more involved in the Parkinson’s community?
Mellany: Start by signing up for PAN’s Action Alerts and email updates . Read everything you can about research and what’s going on in Washington. Find out who represents PAN in your state or community or neighboring state -- they can lead you to so many other sources of information to educate yourself about Parkinson’s disease. Then, check out all the resources that organizations like the National Parkinson Foundation and the American Parkinson Disease Association have to offer.
People who are already representing PAN are easy to talk to. We are out there advocating. We have good and bad days just like everybody else, but we’re doing something to help make a difference in the community and we always are ready to help anyone get started.
To get in touch with Mellany, and get involved in the Parkinson’s community in Oregon, you can email her at firstname.lastname@example.org .
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