2021 Parkinson’s Nebraska Dance for Parkinson’s Series
April 30, 2021
We partnered with Ruth Davidson Hahn & Company to bring you the Parkinson’s Nebraska, 2021 Dance for Parkinson’s Series.
Join Ruth Davidson Hahn & Company from your homes and have fun with the new Dance for Parkinson’s 2021 Series. There are five 30-minute classes, each with a different focus. In Dance for Parkinson’s you’ll enjoy doing dance based activities to music with Ruth, Sara and Vanessa. Together you will explore elements of different dance forms that spark the aesthetic imagination. Music energizes, enriches and empowers the movement. Welcome to a class that is rigorous, creative, and based in the Arts.
Dance for Parkinson’s utilizes the power of dance, music and creativity to improve mobility and quality of life. Dance for PD® is an internationally acclaimed method in which participants explore movement and music in ways that are enjoyable, mentally stimulating, and creative. There is no bad dancing in this class. No dance experience is required. The class is a comfortable pace. All levels of mobility are welcome.
These classes are taught by Ruth Davidson Hahn, professional choreographer, dancer, teacher and Stanley J. Wertheimer Fellow specially trained in the Dance for PD® method.
Class 1 Feel Good Seated Class (Ascending From Chair Option Offered) Featured Fantasy Dance – Wish Upon a Star
Class 2 Jazz Theme Seated Class Featured Jazz Dance Cool (from West Side Story)
Class 3 Jazz Theme Standing Class (With Seated Options) Featured Jazz Dance – Cool (from West Side Story)
Class 4 Ragtime Theme Seated or Standing Class Featured Character Dance – Ta-dah! á la Charlie Chaplin
Class 5 Fun Challenge Class Featured Character Dance – Fortune Teller Ascending and Descending From Chair Option
Parkinson’s Awareness Month Recap
April 30, 2021
Thank you for joining us for Parkinson’s Awareness Month! Throughout April, we worked to spread awareness about Parkinson’s disease in Nebraska and shine a spotlight on resources.
Awareness We partnered with NET to create a month-long TV awareness campaign that ran in April. NET is a statewide public media service that serves each of Nebraska’s 93 counties and reaches more than 1 million Nebraskans per month. They made is possible for us to share Parkinson’s disease information with new community members and people without access to the Internet across Nebraska.
Our Executive Director, Amber Winter, joined Scoot Voorhees on the NewsRadio KFAB 1110 Community Matters program to talk about Parkinson’s Awareness Month and the community can support Nebraskans with Parkinson’s. Listen to the program here!
Community Support
We are proud to be a Gold Level sponsor of the 2021 NOTA Conference on and support the professional development of occupational therapy practitioners and students from across Nebraska.
We are also a proud sponsor of the Parkinson Wellness Symposium hosted by the Columbus Community Hospital in Columbus, NE. Over 135 attendees traveled from all across Nebraska to hear from experts on a variety of Parkinson’s wellness topics. It was great to meet so many providers, care partners, and people with Parkinson’s from communities throughout Nebraska!
The Parkinson Wellness Symposium in Columbus, NE
Parkinson’s Nebraska Dance for Parkinson’s Series We teamed up with Ruth Davidson Hahn & Company for the 5-class Parkinson’s Nebraska Dance for Parkinson’s Series. The classes are available online here. We are also working to make the series available on DVD and USB drives to view on your TV or computer without having to use the Internet. Contact Amber at amber@parkinsonsnebraska.org for more details.
Resources Each week in April, we compiled articles, webinars, books, podcasts, and other resources on the topics you wanted to learn more about. You can access them anytime on our website.
An Update on Research in Parkinson’s Disease Dr. Danish Bhatti, MD, FAAN
Parkinson’s Disease Needs Assessment of Nebraska Erin Kooi, OTS
Our hope is that you were able to connect to a new resource and learn something useful over the past month.
April might be coming to an end, but that does not mean our work is over. We are committed to spreading awareness and improving the quality of life for Nebraskans with Parkinson’s and their families all year-round. You can help by making a donation here!
Announcing the Education Series: Treatment Options Spotlight
April 30, 2021
The Parkinson’s Nebraska and PDWELL Education Series is shining a light on Parkinson’s treatment options with the Treatment Options Spotlight. We will be joined by experts who will discuss treatment options to help manage the symptoms associated with Parkinson’s disease. Patient advocates will share their Parkinson’s story and personal experiences with different treatments.
Treatment Options Spotlight Schedule
May Managing the Return of Parkinson’s Symptoms with a Unique Inhaled Treatment presented by ACORDA Therapeutics Wednesday, May 26th at 2:00 pm CST Register here.
June Parkinson’s Disease: More Than Motor Symptoms: Hallucinations and Delusions featuring Dr. Martha McGraw, MD Wednesday, June 23rd at 2:00 pm CST
July Deep Brain Stimulation as a Treatment for Parkinson’s speaker details coming soon! Wednesday, July 28th at 2:00 pm CST
August Moving Forward: Discussing a Treatment Option for Advanced Parkinson’s Disease featuring Dr. Danish Bhatti, MD, FANN Wednesday, May 25th at 2:00 pm
The Education Series: Treatment Option Spotlight is a free, educational event series presented in partnership with ACORDA Therapeutics, Acadia Pharmaceuticals, and AbbVie. Thank you for helping us share education with the Nebraska Parkinson’s community!
You can support programs like the Education Series: Treatment Options Spotlight by making a donation to Parkinson’s Nebraska. Your gift stays in Nebraska to spread awareness and support the programs that improve the quality of life for Nebraskans and their families.
Women and Parkinson’s Research and Care Agenda Download your free copy of the Parkinson’s Foundation’s Women and Parkinson’s Research and Care Agenda here!
Articles Women and Parkinson’s Disease- Parkinson’s Foundation Read more>>
What It’s Like to be Young, Female, and Living with Parkinson’s Disease Read More>>
Role of Estrogen in PD While it is unclear exactly how estrogen effects Parkinson’s, markers of estrogen exposure are linked to when women begin experiencing symptoms. An article published in the Journal of Neurology, Neurosurgery & Psychiatry found that women who go through menopause later in life or has more children is more likely to experience delayed onset of symptoms. The American Journal of Psychiatry studies have shown that women have more available dopamine in key areas of the brain, signifying estrogen may serve as a neuroprotectant for dopamine activity.
Starting a Women’s Only Support Group Are you interested in starting a women’s only Parkinson’s support group in your community? The Davis Phinney Foundation provides a great resource for women interested in starting a women’s only Parkinson’s support group. Get your free How to Start a Women’s Only Support Group facilitator guide here.
Care Partners
Care partners play an essential role in the quality of life for people living with Parkinson’s. Whether a spouse, child, parent, or friend, they take on many responsibilities. Care partners are just that- partners in the management of Parkinson’s disease. While they are taking care of their loved one, it is just as important for them to take care of themselves. You can’t pour from an empty cup, right?
Role of the Care Partner Care partners take on a number of responsibilities and roles in caring for their loved on with Parkinson’s including daily tasks, planning, and emotional support. The Davis Phinney Foundation provides a “small” list of some of the tasks care partners must learn how to do:
Manage medications, appointments and care teams
Manage outsourced and respite care
Switch roles on a dime – from spouse to care partner
Adapt or modify a home to be safe and accessible
Navigate a complex healthcare system
Become an advocate for their loved one
Speak loudly when necessary
Have uncomfortable conversations
Battle insurance denials
Do background research on billing codes
Ask a lot of questions to people who aren’t thrilled to give answers (i.e. overworked billing clerks)
Question medications and treatment plans
Make end of life plans
Be the executor of wills and trusts
Care Partner Burnout It is essential care partners prioritize taking care of themselves. It is a big change to care for a loved one and can take a toll physically, mentally, and emotionally leading to compassion fatigue. A strong support network is crucial for care partners as much as the person with PD.
How to Stay Healthy and Avoid Burnout as a Parkinson’s Care Partner- Davis Phinney Foundation Read more>>
Webinars Mental Wellness for Parkinson’s Care Partners- Davis Phinney Foundation Read More>>
Articles Care Partners– Michael J Fox Foundation Read more>>
Resources The Parkinson’s Care Partner Digital Toolbox– Davis Phinney Foundation Read more >>
Care Partner Summit | Cumbre Para Cuidadores The Parkinson’s Foundation Care Partner Summit | Cumbre Para Cuidadores is designed with care partners in mind. It is recommended for anyone who cares for someone living with PD. This year, the Summit will take place online in partnership with the Parkinson’s Foundation PD Health @ Home program.
April 19-25 Mental Health, Nutrition, and Complementary Therapies
Mental Health
Mental health impacts everyone and our quality of life. For people with Parkinson’s, it is especially important to understand how PD affects mental health. Many people with Parkinson’s experience non-motor symptoms that impacts mental health, like anxiety and depression.
Mood: A Mind Guide to Parkinson’s Disease The Parkinson’s Foundation book Mood: A Mind Guide to Parkinson’s Disease “explains what mood changes can happen in Parkinson’s disease, why people with Parkinson’s might experience these changes and how to cope with them”. It is available on PDF by clicking the here.
Parkinson’s Disease and Diet: A Practical Guide The Michael J Fox Foundation Parkinson’s Disease and Diet: A Practical Guide provides information on how diet affects Parkinson’s disease and practical ways to encourage a practical diet. Read the PDF guide here.
There is a variety of holistic and complementary therapies for Parkinson’s, which can support or complement traditional medication. They include herbal supplements, to art & music therapy, to acupuncture. We have compiled some resources from our most trusted partners about Parkinson’s complementary therapies.
Therapy, Exercise & PD, and Building a Wellness Community
PT, OT, and Speech Therapy
Physical, occupational and speech therapy are all play an important role in living well with Parkinson’s disease. There are Parkinson’s specific certifications that focus on treating people with Parkinson’s, including LVST BIG, LSVT LOUD, Parkinson Wellness Recovery, and the SPEAK OUT! and Loud Crowd programs. Parkinson’s Nebraska recommends finding a therapist with these certifications to treat your Parkinson’s disease. Certified LVST BIG, LSVT LOUD, and SPEAK OUT clinicians can be searched at the links below:
There are many benefits to exercise and Parkinson’s disease, including motor and non-motor benefits. Exercise effects Parkinson’s on a neurological level, increasing neuroplasticity in the brain and helping to replaced pathways damaged by the disease and retrain the brain how to move. It can help lead to a higher quality of life and is clinical shown to delay the progression of the disease!
Parkinson’s Nebraska advocates for a comprehensive, community-based approach to building strong Parkinson’s communities. The Community Advocacy Model represents the networks of providers, programs, and connections that impact the quality of life for Nebraskans with Parkinson’s. The model is used to educate communities, help identify local strengths and barriers to services, and guide the development of Parkinson’s programs. Learn more about the model here.
Our Impact in the Community The Community Outreach Program is designed to empower communities with the tools and resources to create comprehensive, sustainable Parkinson’s programs that meet their local needs. The program equips community leaders with an understanding of the Community Advocacy Model, the tools to identify local strengths and barriers, and access to resources that help build strong Parkinson’s programs.
Pre-Motor Symptoms and the Importance of Early Diagnosis
The 2021 Skate-a-thon for Parkinson’s will take place at the end of April and one of the focuses of the event is not just to raise money, but to raise awareness about the early symptoms of Parkinson’s disease and the importance of early diagnosis. It will also be the first topic we talk about for Parkinson’s Awareness Month. Explore the articles, blogs, webinars, videos and other resources below to learn more.
Pre-motor symptoms are a group of early non-motor symptoms that often precede the motor symptoms that often lead to a Parkinson’s diagnosis.
Early Pre-Motor Symptoms:
Loss of Smell
Constipation
Sleep disorders
Depression
Benefits of Early Diagnosis:
Improve quality of life
Delay disease progression
Reduce symptoms
Lower cost of treatment
Improving Outcomes Through Early Diagnosis of Parkinson’s Disease Fernando L. Pagán, MD “Nonmotor symptoms manifest in PD long before motor symptoms, and the early presence of nonmotor symptoms offers an opportunity for early diagnosis and early treatment of PD, with consequent benefits to patient quality of life and potential treatment cost savings.” Read the full article here.
Premotor Symptoms and Early Diagnosis of Parkinson’s Disease Charles H. Adler “Nonmotor findings, including hyposmia, sleep disorders, autonomic abnormalities, cognitive changes, and neurobehavioral changes, often precede the motor findings… By the time the motor features of PD become clinically apparent, there is upward of 60% loss of dopamine.” Read the full article here.
The Value of Early Diagnosis and Treatment in Parkinson’s Disease Michela Tinelli “Clinical trials also suggest that early treatment can slow disease progression. Both the decrease of symptoms and the potential for slowing disease progression, have a major impact on improving patient quality of life (QoL) and reducing the costs associated ii with PD in the long run.” Read the full article here.
The purpose of a mission statement is to describe an organization’s purpose, support its vision, and communicate its purpose & direction to its community. It serves as a guide for creating policies, determining priorities, and organizational decision-making.
We have been working hard to redefine our mission, vision, and values to better reflect our strategy and goals. Let us know what you think!
Mission
Parkinson’s Nebraska is dedicated to improving the quality of life for all Nebraskans living with Parkinson’s and their families.
Vision
A Nebraska where all people with Parkinson’s disease feel a sense of community and have access to the programs, services, and education they need to live well.
Values
Integrity We believe in acting honestly, truthfully, and are committed to doing what is best for those we serve. Building trust builds a stronger community.
Accountability We believe in accountability to our donors, supporters, the community, and the people we serve through transparency and a commitment to our mission. We take ownership of our actions.
Respect We believe in respecting all members of our community by recognizing the value and worth of each person. Everyone deserves to be treated with dignity.
Equity We believe in removing the barriers to equity through a commitment to diversity, equality, and inclusion in the way that we engage, learn, and serve our community. Together, our differences make us stronger.
Collaboration We believe in the power of working together to achieve our goals, combine resources, and better serve our community. We can accomplish more together than we can alone.
Three Pillars of Strong Parkinson’s Communities
A strong Parkinson’s community is key to improving the quality of life for people with Parkinson’s and their families. Our strategy of mission achievement is built upon the Three Pillars of Strong Parkinson’s Communities:
Connections: We connect people with Parkinson’s to each other, to resources, and to their community.
Collaboration: We collaborate with communities to provide tools and resources to help them develop meaningful Parkinson’s programs.
Community Outreach: We increase awareness, education, and access to service through community outreach.
Find someone you can talk to and stay connected
April 1, 2021
by Dave Ciaccio, Parkinson’s Nebraska Board Chair
The third newsletter in a series covering the Parkinson’s Foundation’s “5 Steps to Living Well with Parkinson’s.” This month’s step: “Find someone you can talk to and stay connected”.
Barbara Streisand’s song “People” starts with the lyric, “People who need people / are the luckiest people in the world.”
It recently stopped me. I realized not many of us think this way. We all like to think we’re fine without any help. We listen to the broader culture that tells us to be independent, to stay strong, to be our own person – that we don’t need anyone but ourselves.
I, for one, need help every day. Whether it’s in asking for advice or a helping hand, I lean on people all the time.
When I think about my need for people in light of my Parkinson’s, I find myself more in need of a particular kind of person. Someone who understands what it’s like to be on this journey. Who knows what today brings and where things might go tomorrow.
I’ve been lucky enough to find a few people I can talk to and confide in. It’s been important to lay aside my pride, to humble myself and ask for the help that I need. These relationships keep me connected to the community. They help me feel less alone.
Finding and working with others on the PD journey, like a stone in the water, ripples out to others in need. Ms. Streisand’s song has another lyric that makes this clear: “A feeling deep inside / says you were half but now you’re whole.” It reminds us that we’re in this together.
And that, as a person who needs people, we’re among the luckiest people in the world.
Kearney Community Action Committee
April 1, 2021
This summer, we will be working with local leaders to establish a Community Action Committee in Kearney, NE!
A Community Action Committee (CAC) is a diverse coalition of community leaders from local organizations, hospitals, universities, and more who are making a difference in their community. They play a key part in the Davis Phinney Foundation’s new Healthy Parkinson’s Communities™ initiative to help support community leaders, volunteers, and advocates in the pursuit of making the places where we live, work, and play more inclusive and supportive for those living with Parkinson’s.
The Healthy Parkinson’s Communities™ program aims to connect community members to local resources, help local leaders tackle barriers to living well, and to support the creation of more inclusive communities for people living with Parkinson’s.
The three goals of the Healthy Parkinson’s Communities™ initiative are to:
Ensure Parkinson’s community leaders have the knowledge and resources they need to make a positive and sustainable change in their community
Encourage and support data-informed initiatives designed to increase access to and engagement with resources that improve the quality of life for people with Parkinson’s
Work with communities to raise awareness of Parkinson’s in their areas
CACs are led by the individuals living and working in the local communities. They are best able to determine what their community needs and identify the potential leaders and members that want to make an impact. They are the experts on their community!
We will also be working with the National Engagement Advisory Team (NEAT), a group of leaders from national companies and organizations who work to build Healthy Parkinson’s Communities together. Organizations that are part of NEAT are available to help provide local support, participate on local Community Action Committees, and more. They include representatives from Delay the Disease, PMD Alliance, Dance for Parkinson’s, Parkinson’s Wellness Recovery, and LSVT Global.
We are so excited for the opportunity to not only partner with these impactful national organizations, but also the local Kearney Parkinson’s community!
If you are part of the Kearney Parkinson’s community or surrounding area and you would like to be involved in this conversation, please contact Amber at amber@parkinsonsnebraska.org or call 402-210-1419.
