Why did we chose to have an exercise challenge for the Walk the State Challenge?
Aside from wanting to supporting our mission raise money to increase Parkinson’s services, we also want to spread awareness on the benefits of exercise for people with Parkinson’s disease.
For many, exercise is a part of living an active lifestyle or a way to blow off steam. But for people with Parkinson’s, exercise is a crucial part of managing symptoms and living a quality life with the disease.
That’s why we chose an exercise challenge – to highlight the benefits of exercise for the management of Parkinson’s disease. It’s also why we are so committed to increasing access to specialized services like Parkinson’s exercise classes.
I hope you have a truly wonderful week and find some ways to keeping moving and active – it’s good for the brain! 🧠
It’s free to form a team!
August 5, 2020
Register your #WalktheState Challenge team – it’s free!
There is no cost for teams to participate in the Walk the State Challenge – except maybe the cost of some new exercise shoes 👟 😆
Team members are encouraged to share their campaign pages with their friends and family to help raise money and awareness for Parkinson’s disease.
And we have made it super easy with our Tool Kit that includes email templates, social media content, a press release, and much more!
If you have any questions about registering your team or fundraising, contact Amber at 402-715-4707 or email amber@parkinsonsnebraska.org.
Young Onset Parkinson’s Disease
August 3, 2020
What is Young Onset Parkinson’s Disease?
The majority of people with Parkinson’s get diagnosed at age 60. But around 10-20% develop symptoms before age 50, which is called Young Onset Parkinson’s Disease (YOPD). While some of the symptoms and treatments are similar there are many differences between YOPD and a diagnosis after age 50 including causes, diagnosis, and other special considerations.
Symptoms
The symptoms of YOPD are very similar to the symptoms of those diagnosed later in life. They include tremors, rigidity, bradykinesia, and postural instability as well as nonmotor symptoms like depression, constipation, sleeping and cognition issues. However, YOPD typically progresses at a much less rate and the common initial symptoms are different. For example, the most common initial symptoms for people with YOPD is painful cramping and rigidity while it is tremors and balance issues for those diagnosed over 50. People with YOPD generally experience more fluctuating on and off periods, dystonia, and dyskinesia from prolonged medication use.
The Davis Phinney Foundation table below compares the common clinical features of YOPD and diagnosis after 50.
There is no direct known cause of Parkinson’s disease, but it is believed to be a combination of the environment and genetics. For people with YOPD, genes are thought to play a bigger role in the risk of developing Parkinson’s. In fact, according the Parkinson’s Foundation, a recent study found that 65 percent of people with PD onset under 20 years old and 32 percent of people with onset between 20 and 30 had a genetic mutation believed to increase PD risk.” Research is currently being done on the PRKN gene, the gene connected to increased risk of developing YOPD, that could lead to preventative strategies and treatments.
Diagnosis
People under 50 are often misdiagnosed or undiagnosed. Often, nonmotor symptoms appear before the common motor symptoms that cinch the PD diagnosis leading to a misdiagnosis. Pain and symptoms often get mistaken and treated as other conditions because both the patient and doctors do not expect Parkinson’s disease in younger people. For example, a shoulder pain might be mistaken for an injury and would be referred to an orthopedic doctor. Or someone experiencing depression for the first time might be just be prescribed anti-depressant medication. Many people with YOPD have a longer journey to diagnosis, see multiple doctors, and get multiple tests done before getting a diagnosis.
Treatment
The treatment of YOPD and diagnosis after age 50 are similar. Treatment includes regular exercise, therapy (physical, occupational, and speech), and medication. However, there are special treatment considerations for people with YOPD. For example, they are at a higher risk of developing dyskinesia due to prolonged medication use and might postpone starting certain medications to delay dyskinesia. Deep brain stimulation can also be an effective treatment method. It is important to seek treatment from a movement disorder specialist or neurologist specializing in movement disorders in order to receive specialized care and treatment for young onset Parkinson’s disease.
Special Considerations
Those with YOPD may experience the disease differently. They are at a different place in their career, may have to try to have children and raise a family, and have less time to take care of themselves. They also wonder about passing the PD gene to their children and the implications the disease will have on personal, family, and professional roles.
Employment
Many people with YOPD can continue to work and pursue their careers for a while after diagnosis. It is good to have a back-up plan whether it be early retirement, disability, or a new career. It is a personal choice whether to disclose a diagnosis to a job and it is important to familiarize yourself with the American Disabilities Act (ACA).
Financial Planning
Financial planning looks different for people with YOPD. They need to take a look at factors debt, savings, and future medical needs and long-term care. Financial planners can help map out future financial goals and reevaluate life, disability, and long-term care insurance options.
Family
YOPD presents special concerns for family planning and parenting. There have been plenty of women with PD to successfully carry healthy babies to term. While birth control does not interfere with PD medication, it could affect the dosage and couple might look for other contraception methods. Parents with YOPD often worry about physically and financially caring for younger children, if kids their children are at an increased risk, and how to tell them about the diagnosis. The motor and nonmotor symptoms of PD may pose challenges to raising young children and many rethink about childcare and restructure household responsibilities. It can be particularly challenging for those in the sandwich generation caring for both their parents and children.
YOPD Resources
Parkinson’s Nebraska has compiled a list of resources on information and living well with Young Onset Parkinson’s Disease. Please visit our website for YOPD support groups, webinars, podcasts, forums, and resources from our national partners.
July was a month for change and transition for the Parkinson’s Nebraska board. Many board member terms and committee positions were up for renewal and vote. We are excited to announce that Dave Ciaccio of Omaha has been named the new Board Chair!
Dave relocated to Omaha from Chicago after graduating from the University of Illinois with a degree in landscape architecture & urban planning. He was principal & owner of several design firms since 1982. He retired from practice in 2018.
After being diagnosed with Parkinson’s disease in April of 2016, Dave has directed his life towards his education of the disease; has participated in research projects and multiple educational programs; has emphasized wellness in healthy living through exercise & nutrition; and has tirelessly volunteered to promote the awareness of Parkinson’s in Nebraska.
Remaining on the ‘offensive’ against Parkinson’s through healthy living and retaining an optimistic viewpoint of life has become his new ‘work life’.
Dave has a wife, three grown children and 5 grandchildren.
Thank you to so much to Ted Wuebben for leading as the board chair over the last 3 years. Ted’s wife, Colleen, started the organization in 2006 and he has been serving the PD community ever since. Don’t worry – he isn’t going anywhere. He will still be on the board and serve as Vice Chair!
Exiting Board of Directors:
Thank you so much to our three exiting board members – Adam White, Molly O’Neil, and John Taylor – who have served the Parkinson’s community and provided guidance to help the organization thrive and grow over the past three years!
Current Board of Directors:
Dave Ciaccio – Chair Community member
Ted Wuebben, LUTCF – Vice Chair Millenium Brokerage Group Co.
Rod J. Anderson, CPA– Treasurer Certified Public Accountant Masimore, Magnuson, and Associates, P.C.
Ryan Cary Talent Acquisitions Lead LTI Technology Solutions
Dr. Michele Faulkner, Pharm. D, FASHP Professor, Pharmacy Practice & Medicine Creighton University School of Pharmacy
Paul Hughes, CLCS, CIC Risk Advisor UNICO Insurance Group
Damian Montez On-Air DJ 99.9 KGOR iHeartMedia-Omaha
Megan Thiemann Account Executive First National Technology Solutions
Monnie Lindsay, J.D. Community Member
Dan Lombardo Community Member
Joe Schulte, MSHSA Community Member
We are committed to transparency and keeping our community updated with governance changes. If you have any questions at all, please reach out to Amber at 402-715-4707 or amber@parkinsonsnebraska.org.
One Month Away!
July 31, 2020
Have you registered your Walk the State team yet? We are exactly one month away from the challenge!
Have you registered your Walk the State team yet? We are exactly one month away from the challenge!
Either ᴄʀᴇᴀᴛᴇ ᴀ ᴛᴇᴀᴍ and share the page directly with team members or Jᴏɪɴ ᴀ ᴛᴇᴀᴍ and search for your team name.
Share your campaign page with friends, family, and coworkers to raise money and awareness for the Nebraska Parkinson’s community.
Exercise, walk, bike, & run for miles towards your team’s 455-mile team goal and track your progress on your campaign page.
Not able to participate in the challenge? You can still support the event by being a team cheerleader 📣 Browse the teams & choose one you want to support. Make a donation to the team and share their page with your friends and family!
And don’t forget to join us on Sunday, September 13th from 9:30 – 11:30 am for the Walk the State Virtual Event – Registration is now open!
Please let me know if you have any questions. I’d love to help you get involved! Contact me at amber@parkinsonsnebraska.org.
Parkinson’s Nebraska Supports Grand Island Rock Steady Boxing
July 27, 2020
Parkinson’s Nebraska is committed to improving access to Parkinson’s services in Grand Island. Since 2018, it has awarded over $4,300 in program and scholarship grants to organizations and professionals providing specialized Parkinson’s services in the Grand Island area.
In February 2018, Ashlyn Cramer, DPT at the Grand Island Balance, Mobility, and Aquatic Center, was awarded a scholarship grant to attend a training to become a Rock Steady Boxing Certified Coach. The following fall, she began teaching the first Rock Steady Boxing classes at the Grand Island YMCA. Since then, the class has grown tremendously and continues to make an impact on the Grand Island Parkinson’s community.
Parkinson’s Nebraska has continued to support the program by funding trainings for additional certified coaches. In June, the Grand Island Balance, Mobility, and Aquatic Center was awarded an $800 grant for their annual Rock Steady Boxing affiliate fee. The affiliate provides access to resources, materials, and coach trainings for the upcoming year.
Parkinson’s Nebraska is proud to support Grand Island BMAC, the Grand Island YMCA, and the Rock Steady Boxing program in Grand Island!
The Rock Steady Boxing classes are currently cancelled due to the pandemic, but will begin as soon as it is safe to get together. Keep up to date on class cancellations and openings by visiting the Grand Island YMCA website.
To see if Rock Steady will benefit you, visit with Balance · Mobility about an evaluation. Call Balance · Mobility at 308.398.2170 or visit balancemobilitytherapy.com to get started.
Register Your #WalktheState Team
July 27, 2020
Have you formed your #WalktheState Challenge team yet? It’s easy!
1. Get a group of friends, family, and coworkers together to form a team (Pro Tip: the bigger your team, the less miles each individual has to do to reach the 455 mile goal)
2. Create an account and personal fundraising page.
3. Either Create a Team to share with team members or Join a Team using the team name provided by the team leader.
4. Exercise, walk, and run for miles towards your team’s 455 mile goal and update your progress on your personal campaign page.
5. Share your campaign page to raise money and awareness for PD.
Have you heard the exciting news? This year, our annual Walk the Park for Parkinson’s fundraiser is going virtual and statewide!
The Walk the State Challenge is a 2-week exercise challenge from August 31st- September 12th where teams from across Nebraska will exercise, walk, and run 455 miles – the distance across Nebraska!
Then, on Sunday, September 13th from 9:30-11:30 am we will be hosting a free virtual event – and you’re invited! The event will include movement breaks, education, and prizes for the Walk the State Challenge teams. Agenda and registration details coming soon!
How can you get involved?
Form a team (View the Event Overview for more information)
Tune in to the free Walk the State Virtual Event September 13th
Donate to our campaign page or to a specific challenge team.
Your donation will help support our new Rural Community Outreach program that was designed to meet the specific needs of rural Parkinson’s communities. Through the program, the target community will receive:
A Parkinson’s community needs assessment
Personalized, technical assistance available to access online programs – if needed
A unique community presentation based on local needs and resources
A 1-2 week online wellness program that introduces a variety of Parkinson’s programs
The development of a LCAC
Up to $500 to support a Parkinson’s program or project identified by the LCAC
Ongoing communication and support from Parkinson’s Nebraska
It is because of our generous donors and supporters that we are able to continue impacting lives across Nebraska. Thank you for your trust and support!
It only takes $10 to make an impact
July 16, 2020
A donation of just $10 can help us makes specialized services such as support groups, exercise classes, and education more accessible in communities across the state!
