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.
2021 March Recap
April 1, 2021
March was a busy month! In the best way possible, of course.
Much of our efforts have been focused on organizational capacity-building. We have grown so much over the past two years and want to make sure we have the structures in place to keep up with the momentum and continue growing.
Over the past month we have:
Hired a second staff member to increase our digital marketing and community engagement efforts. Amber is really excited about this!
Invested in a new software that combines our CRM (donor management system), email marketing, social media, and fundraising efforts into one platform. The days of spreadsheets and multiple platforms are over!
Invested in-home office equipment to increase efficiency and save money on printing and mailings.
Collaborated with Daake to redesign our website to make it easier for both us and community members to search for services, share resources from our partners, and simplify the process for updating program information. The new website is coming soon!
Redesigned our Mission, Vision, and Values Statement and developed the Three Pillars for Building Strong Parkinson’s Communities. This will help us effectively communicate the role we play in the community and make decisions in line with our goals.
We are so grateful to be able to focus on building capacity- and that we need to! We have grown so much over the past few years and truly a statewide organization. And it is because of amazing supporters like you. Our worked is centered around Nebraskans with Parkinson’s, their families, and the providers who serve them. We do it for you, and we couldn’t do it without you. Thank you!
Determine Your Goals and Priorities
March 4, 2021
by Dave Ciaccio, Parkinson’s Nebraska Board Chair
The second newsletter in a series covering the Parkinson’s Foundation’s “5 Steps to Living Well with Parkinson’s.” This month’s step: determine your personal goals and priorities.
Long term goals are often thrown off by more short term realities.
We’re always told that to be ‘successful’ we have to set goals that are months or years down the road.
But things change. Life happens. The unexpected comes knocking.
That was the case when I had an unexpected career decision . And when I found out I have Parkinson’s. Whatever long term goals I might’ve had suddenly looked very different.
So I try to take the events of life as they come. And to do so thoughtfully and with the advice of others. I set broader goals so I can change them as I go.
Things like ‘exercise every day’, ‘eat healthy’, ‘be positive,’ ‘help others’. This approach is particularly helpful with something as unpredictable as Parkinson’s.
By keeping these goals in mind, they eventually become priorities.
But I try to keep that in check as well. Too many goals or overly specific priorities lead to stress.
And keeping stress under control is one of those short term, everyday goals that can have long term, lasting effects.
Meet Erin Kooi, OTS
February 5, 2021
Erin Kooi, OTS is a 2021 Occupational Therapy Candidate at the School of Pharmacy and Health Professions at Creighton University. She will be joining the Parkinson’s Nebraska team this semester as part of her Doctoral Capstone. We are so excited to welcome her to the team!
She will be completing a needs assessment on the Nebraska Parkinson’s community, researching services that are currently available and identifying the needs of our community.
A word from Erin:
“Hello everyone, my name is Erin Kooi and I am joining the Parkinson’s Nebraska team as a part of my Doctoral Capstone through Creighton University. I am currently a third-year occupational therapy student anticipating graduation in May of 2021.
As part of my capstone, I will be researching and identifying services and needs of the Parkinson’s community in central and western Nebraska. I am excited to join the PN team!
If anyone is specifically interested in the work I will be doing or would have information that could aid in my work, please reach out to myself at ejv93180@creighton.edu and I will be happy to chat!”
We are so thrilled Erin chose Parkinson’s Nebraska as part of her Doctoral Capstone and are grateful for the time, dedication, and effort she is putting in to help us better understand the needs of the Nebraska PD community. Her work will greatly inform our funding priorities, community outreach efforts, and organizational strategy as a whole.
If you are a physician, therapy provider, exercise instructor, support group leaders, or person with Parkinson’s who would like to help, please reach out to Erin via email. You can share the services you provide, the services you participate in, and the unique needs of your local community. Your help will go far towards improving accessibility of services and the distribution of resources in the future.
Thank you so much for your work, Erin! Welcome to the team!
Be Active in Whatever Way Works for You
February 4, 2021
By Dave Ciacco, Parkinson’s Nebraska Board Chair
Many of you have probably heard of the Parkinson’s Foundation’s ‘5 Steps to Living Well with Parkinson’s’. These are five succinct recommendations which I have found quite beneficial. I have not implemented all five, but have it as a goal to do so. The 5 Steps for your reference are:
Be active in whatever way works best for you.
Determine your personal goals and priorities.
Find someone you can talk to and stay connected.
Create healthy habits.
Find a doctor who is an expert in Parkinson’s disease.
In my next five blog posts for this newsletter, I thought I’d provide you with my thoughts on those I have implemented so far. I’ll start with “be active in whatever way works best for you”.
When I was diagnosed with Parkinson’s nearly five years ago, I found that Parkinson’s provided me with an opportunity to remain more active. I’ve always been a person who has had to ‘be doing something’ as my wife and kids always tell me, but now it’s a more purposeful busy. Exercise is my ‘offense’ against PD, while taking my meds is my ‘defense’. Parkinson’s has given me new opportunities in life that I wouldn’t have thought possible. I’ve run a mini-marathon, taken up Rock Steady Boxing and Pickle Ball. I’ve walked the dog so many times he now hides when I get his leash. But this is me. You are only limited by your imagination in ways you too can be active. It can be simple. Do some simple stretches while you have your cup of morning coffee. Get up and walk around during TV commercials. Take two short walks a day instead of one. Less is sometimes better than more. Staying active in body, mind and spirit is key to ‘Living Well with Parkinson’s’. So I’ll close with the simple statement:
Physical and Occupational Therapists, Physical and Occupational Therapist Assistants, PT, DPT, OT students
Registration Fees
$650 per person | $625 for groups of 2-4 | $350 for students
Virtual workshops fill up fast! Here are some of the dates that still have availability:
March 27-28
April 3-4
May 1-2
Learn more and register for the Therapist Certification Workshop here.
PWR!Moves Virtual Recertification Workshops
Eligible Participants
Physical Therapists, Occupational Therapists, Physical Therapy Assistants, and Occupational Therapy Assistants who have completed another PWR!Moves Therapist Certification Workshop within 36 months of the Therapist Recertification workshop.
Registration Fees
$300 per person
The recertification course is offered via Zoom on the following dates:
February 20-21
April 1
Learn more and register for the Recertification Workshop here.
Rock Steady Boxing Affiliate Training Camp
Affiliate Training Camp is a two-step program – coaches must complete an online course (Tier 1), followed by an interactive virtual or in-person training (Tier 2). This training is for locations that do not currently have an Affiliates license and are looking to start a new Rock Steady Boxing program, or to add an additional Affiliate license holder to an existing program. There must be at least one trainer with an Affiliate license per location.
The Tier 1 training is a self-paced, all online training. This must be completed before registering for the Tier 2 training. Tier 2 trainings are offer 1-2 times per month and dates can be found on their website here.
Registration Fees
$899 for new affiliate license | $699 for for existing affiliate program
Affiliate Program Fee: $800/year per location
If you are interested in starting an affiliate program, please contact info@rocksteadyboxing.org for the next steps. Or learn more on their website.
Online Coach Certification
The Online Coach Certification provides the opportunity for affiliates to train additional coaches. This option is only available to staff at current affiliate locations. Coaches who only take the online course will not be able to open a new Rock Steady Boxing location.
Registration Fees
$399 per person
Ready to register? Contact Jenny Parker, Affiliate Specialist, for information at jparker@rocksteadyboxing.org. Visit their website to learn more.
Online LSVT BIG™ Training
The Online LSVT BIG Training and Certification Course trains physical and occupational therapy professionals and students in an evidence-based, intensive treatment protocol for individuals with Parkinson disease. Course syllabus can be viewed here.
Eligible Participants
Physical and Occupational Therapists, Physical and Occupational Therapy Assistants, and students enrolled in those programs.
Registration Fees
$580 Professionals | $300 Students | $200 Previously Certified Clinicians
This training is offered on online, ongoing, and on-demand. Learn more about the Online LSVT BIG™ Training and register here.
Delay the Disease Training
The Delay the Disease training provides evidenced-based updates on the effects of exercise and physical therapy on the symptomatic management of Parkinson’s disease (PD). Each participant will be able to integrate this knowledge, along with teaching techniques to create and lead a comprehensive, community-based, PD-specific exercise program based on the Delay the Disease fitness agenda.
Eligible Participants
Physical and Occupational Therapists, Physical and Occupational Therapy Assistants, RN, AT, exercise professionals, and Exercise Physiologist.
Registration Fees
$280 per professional
This class has online offerings. To learn more and view the upcoming training dates click here or email RehabEducation@ohiohealth.com.
Eligible Participants
Physical and Occupational Therapists, Physical and Occupational Therapy Assistants, RN, AT, exercise professionals, and Exercise Physiologist.
Registration Fees
$280 per professional
This class has online offerings. To learn more and view the upcoming training dates click here or email RehabEducation@ohiohealth.com.
Delay the Disease Recertification Course
This course is designed for the healthcare professional and fitness trainers who have taken the original Delay the Disease 10 hour CE course more than two years ago. The original CE course must be recertified every two years.
Eligible Participants
Physical and Occupational Therapists, Physical and Occupational Therapy Assistants, RN, AT, exercise professionals, and Exercise Physiologist who have taken the original 10-hour Delay the Disease course.
The Dance for PD® training program is divided into two courses (tracks) to allow for facilitators and trainees to focus on specific skills that are relevant to their backgrounds and interests. Each training course has its own objectives and accreditation sequence.
Eligible Participants
Qualified and experienced dance teachers are eligible to take the Dance Teacher course. Other individuals without dance training can take the Educational and Professional Enrichment course.
$65 annual membership | $25 renewal every two years
This trainings are offered online. To learn more about the Dance for PD training, click here.
The Online LSVT LOUD Training and Certification Course is a program designed to train speech-language clinicians in a voice/speech treatment technique for adults with a specialty in Parkinson’s disease. Course syllabus can be viewed here.
Eligible Participants
Speech-Language Pathologists, Speech-Language Pathologist Assistants, and students enrolled in those programs.
Registration Fees
$580 Professionals | $300 Students | $200 Already Certified Clinicians
This training is offered on online, ongoing, and on-demand. Learn more about the Online LSVT LOUD™ Training and register here.
SPEAK OUT® & The LOUD Crowd® Training
SPEAK OUT!® & The LOUD Crowd® is a therapy approach developed by Parkinson Voice Project that combines education, individual speech therapy, and ongoing group sessions to help people with Parkinson’s improve their speech and voice. The online course is a professional “video presentation” that provides training on conducting a speech evaluation with stimulability testing, individual therapy (SPEAK OUT!), group sessions (The LOUD Crowd), and clinical documentation.
Eligible Participants
Speech-Language Pathologists, Speech-Language Pathologist Assistants, and students enrolled in those programs.
Registration Fees
$389
To learn more or register for the SPEAK OUT!® & The LOUD Crowd® online training click here.
The Parkinson Voice Project Grant Program
The Parkinson Voice Project also offers a grant program. Any speech therapy clinic in the world that has reliable internet service may apply for a grant, including university clinics, hospitals, private practices, etc. The grant program aims to make quality speech treatment accessible to people with Parkinson’s. Grant sites receive free SPEAK OUT®, LOUD Crowd®, and Teletherapy training for as well as speech therapy supplies and funding for LOUD Crowd® groups. The deadline to apply for a 2021 Grant is March 1, 2021.
Learn more about the Parkinson Voice Project Grant Program and apply for a grant here.
At Parkinson’s Nebraska, we are committed to strengthening the Parkinson’s community and increasing access to specialized services across Nebraska. We want to make it easy for physical, occupational, and speech therapists to become trained in Parkinson’s programs to provide the highest quality care to the people with PD they work with each day. We have Scholarship Grants for certified therapists and students to attend trainings and become certified providers. Please contact Amber at amber@parkinsonsnebraska.org to learn more and apply for a Scholarship Grant.
2021 Parkinson’s Nebraska Supported Programs
January 8, 2021
We are so proud to support these programs and providers (and more!) that are impacting their communities across Nebraska. These exercise classes, support groups, educational, and recreational programs help people with Parkinson’s improve quality of life and connect with others.
Dance for Parkinson’s– Mondays at 1:30 pm CST via Zoom- Winter session (February 1st– April 5th)
Are you a program director, activities director at a living facility, professional, or community member interested in starting or growing a Parkinson’s program? Let us help you! We have grant funding available and are looking for programs to support. Learn more about grant opportunities here or email Amber Winter at amber@parkinsonsnebraska.org.
Why Not Me?
January 8, 2021
I would venture to say that nearly everyone with Parkinson’s has asked themselves the question, “Why Me?”
When I think about this, I find myself just as quickly asking the opposing question, “Why Not Me?”
Approximately 60,000 Americans are diagnosed with PD each year. More than 10 million people are living with PD worldwide. Am I really any different than everyone else?
However it’s asked, the question is self-defeating. This way of thinking fuels envy, resentment, and self-pity. When I find myself heading toward this pity party, I recall the first line of the Serenity Prayer, “God, grant me the serenity to accept the things I cannot change.”
I have had other significant and painful experiences in my life, which I also came to realize weren’t just me. In all instances, it’s not just me. It’s not just you. It’s just life.
As a good friend reminds me, “Dave, This Ain’t Heaven.”
I’m not saying that these experiences aren’t difficult. That they aren’t mentally and emotionally and physically taxing. Rather that life brings pain and suffering, joy and love, it brings all that it is to me and to you, to the next person, and all those to follow.
For me, this provides comfort knowing that I’m not alone. That I’m not singled out or just unlucky. That I’m not to blame. I’m simply experiencing life. This keeps me balanced, humbled and calmer in the face of challenges. It enables me to move ahead in a more empowered way.
And to say to life, “Why not me?”
Program Grant Applications are Open!
January 7, 2021
In 2020, we awarded Parkinson’s programs across Nebraska with grants to help keep classes and services accessible throughout the year, and even expand services offered. We helped provide programs with equipment, supplies, technology, tech support, professional development opportunities, and more! Click here to see the programs that we support.
This year, we have grant funding available for Parkinson’s programs, services, and trainings! Our grants support impactful programs by providing funding for the following program costs:
Equipment & Supplies (exercise equipment, chairs, art supplies, etc.)
Technology (telehealth equipment, subscriptions, peripherals like headphones, tech support)
Professional Development (Parkinson’s-specific trainings for therapy providers, exercise instructors, support group leaders, and other service providers)
Focus Areas
Rural communities outside of Omaha metro (but this does not mean Omaha programs cannot apply!)
New programs (we are always looking to help new programs develop)
Expanding programs (we are always looking to grow expand programs to reach more people)
Programs seeking to make or keep services accessible (virtual format, direct mail programs, etc.)
We are taking applications on a continuous basis and they are reviewed the Board of Directors each month. We are always looking for opportunities to partner with providers, programs, and communities who seek to make an impact in the lives of people with Parkinson’s.
If you are interested in applying for funding in 2021, please email Amber Winter at amber@parkinsonsnebraska.org or call 402-715-4707. We would love to talk with you!
Joyce Starr- Care Partner
December 4, 2020
We are so grateful for care partner advocates like Joyce Starr in Lincoln.
Joyce’s husband, Rich, has been living with Parkinson’s disease for 7 years. When he was first diagnosed, they were apprehensive to join a support group. But once they did, Joyce found comfort in meeting with and learning from others going through similar experiences. She is now one of the leaders of the Lincoln Parkinson’s Disease Support Group!
She is a strong advocate for the Parkinson’s community and for care partners. She is a member of the Nebraska Community Action Committee and has participated in trainings and numerous educational programs. Joyce believes education is key to living well with Parkinson’s, for both the individual and the care partner. Since Rich’s diagnosis, they have both sought out opportunities to learn more about the disease and the resources that are available to them.
Joyce views her role as a care partner rather than caregiver, because Parkinson’s disease affects the whole family and at this stage, her and Rich are partners in navigating life with the PD. Through education, community engagement, and support from others, she has been able to continuously learn and find hope in caring for someone with Parkinson’s disease.
In October, she attended the In Sync Support Group Leader Workshop to learn how to lead and manage a support group. She has recently started a virtual Caregiver Support Group that will take place on Zoom on the second Tuesday of each month. Thank you, Joyce, for caring with intent and being a leader for other care partners in Nebraska. We are so grateful for you!
Donate to the Give with Intent campaign to help provide care partners like Joyce with resources and education to empower their journey caring for a loved one with Parkinson’s.
