Enhanced Physical Therapy is Awarded Grant for LSVT BIG Training

April 30, 2021

Enhanced Physical Therapy has been awarded a grant through the Parkinson’s Nebraska Grants Program!

Zach Long, PT, DPT with Enhanced Physical Therapy in Seward, NE was awarded a scholarship grant to attend the LSVT BIG™ certification course. LSVT BIG™ is an evidence-based, intensive, one-on-one therapy treatment created to help people with Parkinson’s disease. We are proud to support professionals like Zach and collaborate with Enhanced Physical Therapy to increase Parkinson’s services in Seward.

If you are in the Seward area, you can contact Enhanced Physical Therapy below with any questions or to make an appointment.

Enhanced Physical Therapy
510 Bradford St.
Seward, NE 68434
402-646-2007
enhanced-pt.com  

At Parkinson’s Nebraska, we strive for all Nebraskans with Parkinson’s to have access to specialized care and services. We believe one of the best ways we can increase access to services is by increasing the number of professionals and providers who are certified in Parkinson’s-specific services. If you are a provider who is interested grants for Parkinson’s trainings and certifications, please contact Amber Winter at amber@parkinsonsnebraska.org or 402-715-4707.

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.

April 1st- April 4th: Pre-symptoms of PD | Importance of Early Diagnosis
April 5th- April 11th: Therapy| Exercise & PD | Building a Wellness Community
April 12th- April 18th: Women and PD | Care Partners
April 19th- April 25th: Mental Health and PD | Holistic Treatments | Nutrition
April 26th- April 30th: Treatment Options | Deep Brain Stimulation (DBS) | Research (link coming soon!)  


Special Presentations

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.

Parkinson’s Awareness Month Week 3

April 29, 2021

Women and PD and Care Partners Resources

 Women and PD

 
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>> 

Webinars 
YOPD Women’s Council Series– Davis Phinney Foundation 
Removing Barriers to Deep Brain Stimulation for Women – Davis Phinney Foundation 
Women and Parkinson’s DiseaseDavis Phinney Foundation

Twitchy Woman 
Sharon Krischer was diagnosed with Parkinson’s Disease in October, 2009 after several years of experiencing odd symptoms.  Ever since she has read everything she could find on Parkinson’s with the goal of finding a way to move on – literally – and not be defeated by the disease. She has created a community supporting women with Parkinson’s disease. 
Sunday Mornings with Twitchy Woman 
Twitchy Woman – Peer Support Program for Women
Twitchy Woman: My Adventures with Parkinson’s 

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. 

Learn more and register here.  

Nebraska Caregiver Resources 
Nebraska Lifespan Respite Network  
Nebraska Caregiver Coalition 
Nebraska Caregiver Coalition Facebook page 

Parkinson’s Awareness Month Week 4

April 28, 2021

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.

Podcasts
Substantial Matters: Managing Anxiety with PD
Substantial Matters: Episode 82: Neuropsychological Evaluations for PD

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.


Nutrition

Articles
Medication, Protein, and Parkinson’sDavis Phinney Foundation
Diet & Nutrition– Parkinson’s Foundation

Webinars
Eating Well with Parkinson’s DiseaseThe Michael J Fox Foundation
Optimal Nutrition for Living with Parkinson’s Disease– Parkinson Voice Project
Ask the MD: What’s the Best Diet for Parkinson’s?The Michael J Fox Foundation

Podcasts
Podcast Episode 100: Nutrition Advice – Part 2
Podcast Episode 99: Nutrition Advice – Part 1

The Davis Phinney Foundation Series on Nutrition and Parkinson’s
The Most Important Fact to Know About Parkinson’s Nutrition
The 17 Most Commonly Asked Questions About Parkinson’s Nutrition
How to Experiment with Your Nutrition While Living with Parkinson’s

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.

Brian Grant Foundation Nutrition Resources
They love food at the Brian Grant Foundation! They have education, recipes, cooking videos and more on their website.
Parkinson’s Nutrition Overview
Cooking and Eating Tips
Recipes
 
Cooking Videos
Meet the Chefs
Publications and Resources


Complementary Therapies

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.  

Herbs and Supplements
Latest Research of Food and Supplements for Parkinson’s– American Parkinson’s Disease Association
Over the Counter and Complementary TherapiesParkinson’s Foundation

Art and Music Therapy as Complementary Therapies
Art Therapy for People with Parkinson’sDavis Phinney Foundation
Feel the Rhythm: Music Therapy and Parkinson’s DiseaseParkinson’s Foundation

Acupuncture and Massage
Ask the MD: Acupuncture and Parkinson’sMichael J Fox Foundation
The Use of Acupuncture and Massage for Parkinson’s DiseaseAmerican Parkinson’s Disease Association

Parkinson’s Awareness Month Week 2

April 12, 2021

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 BIGLSVT LOUD, and SPEAK OUT clinicians can be searched at the links below: 

SPEAK OUT providers: https://www.parkinsonvoiceproject.org/providers.aspx 
LSVT BIG/LOUD providers: https://www.lsvtglobal.com/LSVTFindClinicians  

Articles
The Expert Care Experience: Physical Therapy and Parkinson’s Disease 
The Expert Care Experience: Parkinson’s and Meaningful Occupations 
The Expert Care Experience: Speech, Swallowing, and Parkinson’s 

Webinars:
Davis Phinney PT PanelDavis Phinney Foundation
Occupational Therapy and Living Well with Parkinson’sDavis Phinney Foundation
Speech Swallowing, And Parkinson’s DiseaseThe Parkinson Voice Project

Resources:   
Parkinson Voice Project Online Speech Exercises
Davis Phinney and Kelsey Phinney Practical Vocal Exercises for Parkinson’s  

Podcasts:  
Parkinson’s Podcast: Speech, Voice, and Parkinson’s  
Substantial Matters: Down the Hatch: Swallowing Disorders in Parkinson’s Disease

Exercise  & PD

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! 

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Articles
Neuroprotective Benefits of Exercise 

Podcasts:  
Parkinson’s Podcast: How to Exercise with Parkinson’s  

Building a Wellness Community

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.

In 2020, we ran a successful pilot Community Outreach Program in Norfolk, NE. We are currently in the beginning stage of implementing the program in Kearney in partnership with the Davis Phinney Foundation.
Read more about our work in Norfolk 
Read more about our plans in Kearney

DPF Healthy Communities Initiative 
We have been working closely with the Davis Phinney Foundation and their new Healthy Parkinson’s Communities™ initiative. Our Community Outreach Program is modeled off of their community outreach programs. Learn more about the initiative and how you can get involved below:
What is the Healthy Parkinson’s Community Initiative? 
The What, Why, and How of Community Action Committees (CACS) 
Ambassador Leadership Program 
Healthy Parkinson’s Communities Network 

Podcasts:
Substantial Matters: A Multidisciplinary Approach to PD

Parkinson’s Awareness Month Week 1

April 5, 2021

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. 

Resources on Non-Motor and Early Symptoms 

10 Early Warning Signs
Parkinson’s Foundation

  • Tremor
  • Small Handwriting
  • Loss of Smell
  • Trouble Sleeping
  • Trouble Moving or Walking
  • Constipation
  • Soft or Low Voice
  • Masked Face
  • Dizziness or Fainting
  • Stooping or Hunching Over

Learn more

https://apdaparkinson.org/article/first-symptoms-of-parkinsons/

We want to know… 

What were some of your first symptoms? Looking back, how long did you experience symptoms before getting a diagnosis? 

Share your experience with us by emailing Amber at amber@parkinsonsnebraska.org.

Mission, Vision, and Values Statement

April 2, 2021

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.