Our Mission: Parkinson’s Nebraska is dedicated to improving the quality of life for Nebraskans with Parkinson’s and their families.
Many faces. One name.
Our name says it all. We’re all things Parkinson’s disease for people in the state of Nebraska and surrounding areas. We are a group of individuals brought together by Parkinson’s disease. We give our time and talents to help bring education, expertise, classes, support and a host of other resources together in a single location: Parkinson’s Nebraska.
A 501(c)3 designated charitable organization, we’re committed to helping people in Nebraska and the surrounding areas who are affected by Parkinson’s disease. Dollars given to our organization stay right here, giving our residents, their families and caregivers immediate access to information and resources. We recognize people need help now, and we’re able to provide the help they need.
We were founded as Parkinson Health Development by Colleen Wuebben, an inspirational woman who was diagnosed at age 52. This was her dream and we look forward to building on that dream as Parkinson’s Nebraska to help others thrive on their journey with Parkinson’s disease. Her story, in her own words can be found below.
We’re Reaching Out
It’s our mission to be Nebraska’s primary resource for Parkinson’s disease information, educational programs, outreach events and awareness, and to organize, promote and raise funds for local Parkinson’s services and research. Through awareness and collaboration, we can provide the right information and resources Nebraskans need on their journey with Parkinson’s disease.
From the Founder of Parkinson Health Development, Colleen Wuebben (1952-2013)
With no family history of Parkinson’s, I was caught off-guard by this diagnosis at a healthy age 52. When the words “Parkinson’s disease” came up at an annual physical, I did not see how they related to me. I went back to my office, closed the door and turned to Google. After browsing through the symptoms, I had no doubt about my PD: I suddenly recognized the reason for my smaller handwriting, my “frozen shoulder”, a subtle change in my gait and the intermittent tremor in my right hand.
Within days my husband and I had read several books and were looking for responses that worked. Thus began a long process of education, reflection and practice. Since beginning a varied personal exercise regimen, my score on the United Parkinson’s Rating Scale has significantly improved. My doctor encouraged me to “keep doing whatever you are doing, and get others to do it with you,” and the Parkinson’s Health Development Program is the result.
Since that surprising diagnosis, we have grown in many ways. Our clan of six grown children has blossomed, adding four spouses and 13 darling grandchildren. My level of overall fitness is stronger and so is my gratitude and determination to face life’s obstacles with my husband, Ted. My new family now includes the Young Onset support group in Omaha, workout partners, our OmahaWalks team in the Unity Walk in New York City; I’ve traveled to Washington DC to advocate with PAN [the Parkinson’s Action Network] before Representatives and Senators. In 2009 at the TeamFox MVP dinner I even had the chance to meet Michael J. Fox! Although Parkinson’s disease is not a journey of choice, how we choose to travel this road is up to us – let’s get moving! (written in 2011)
Board of Directors
- Dave Ciaccio, Chair
- Joe Schulte, MSHSA, Secretary
- Rodney J. Anderson, CPA, Treasurer
- Paul Hughes, CLCS CIC
- Monnie Lindsay, J.D.
- Dan Lombardo
- Ryan Cary
- Damian Montez
- Megan Thiemann
- Adam Barney
- Samantha D’Angelo
Jenny Knutson – Former Board Member
I am one of Colleen Wuebben’s daughters and I’m proud to serve Parkinson’s Nebraska. It is a great benefit and blessing to so many living with Parkinson’s disease. My goal is to continue to provide education and health and wellness to anyone affected by Parkinson’s. We will strive to improve our services and other resources to the greatest level.
Helen Ayers – Former Board Member
I have had Parkinson’s disease for 12 years. When I first was diagnosed I was so devastated that I reacted with anger, denial and isolation. But that made it worse so I began my own program, which helped me walk this difficult path. This included joining a support group, becoming involved in activist groups to improve our lot, attending educational workshops on Parkinson’s disease, exercise, maintaining my social network, and praying. I continue to help support my fellow “parkies” as I know of no other way to help myself.
On my 37th birthday I joined hands in a group prayer and noticed my right arm was shaking – I could not make it stop. That was late 1993. A year later, I was in the car outside Memorial Stadium after the Nebraska-Oklahoma game trying to file a broken nail on my left hand and my right arm would not move. I remember asking myself, how did I move that arm yesterday? The answer of course, was that it had just moved – I hadn’t made it do anything. Six weeks later, January 10, 1994, my personal “day of infamy” I was told “you have Parkinson’s disease.” Three weeks later, the Mayo Clinic confirmed my diagnosis. I was 38 years old and only four years out of law school.
So began my 18-year journey with Parkinson’s. It was not a journey of my choosing but well, you know the old expression “when life hands you lemons, make lemonade.” This journey has led me to people I never would have met and places I never would have gone on my own. In 2005, I accepted the position of Nebraska State Coordinator for the Parkinson’s community in Washington DC. The following year I became a member of PAN’s Board of Directors, and I am now its Vice Chair. Through PAN, I have had the privilege of using my skills to serve the Parkinson’s community.
One of the best pieces of advice I received at Mayo was: “you have to exercise.” I went home, joined a gym and three months later was able to cut my Parkinson’s medications by one-third. I have continued to exercise through most of my 18 years with Parkinson’s (and believe me, I am no jock!). Years ago, I was blessed to meet Colleen Wuebben. I watched her dream of starting an organization run by people with Parkinson’s grow from seedling into the Parkinson’s Health Development program. I have participated in classes and watched others as they grow in strength, balance and confidence over the weeks and months. This renewed confidence was one reason Colleen started this program. I am honored to be part of the program.