We’ve all heard while leading this life with Parkinson’s, that everything we do must be mindful and purposeful. That it must be done with intent.
Todd & Sue, two of my pickleball partners, often remind me on the court that every shot needs to be played with intent to be effective. Too often my mind wanders and I find myself a spectator to the moment.
This idea of doing everything with intent becomes incrementally more important as our Parkinson’s silently progresses. The other day I found myself as ‘a spectator in the moment’ of everyday life, which could have put me on the injured list.
I was sitting at a high counter chair and while trying to rotate and step down too quickly, my foot got caught in the chair leg and I went to the floor. No injury, but I certainly didn’t stick the landing either. As I thought about what had happened it was clear: I was not moving with thoughtful intention.
Lesson learned.
Today, whether I’m going down the stairs, working in the garage, or just taking a walk, I’m trying to be more mindful of doing it all with more purpose and intent.
Who knows, maybe by doing so my pickleball play will improve as well.
The Play, Move, and Create Workshop Series (coming Fall 2025)
July 20, 2021
The Play, Move, and Create Workshop Series, is a music, dance, and art program designed for people with Parkinson’s and care partners. It combines music, dance, and art to create an experience versus a class. You will leave feeling energized, connected to your emotions, and self-confident!
The series is centered around the focus areas of music and art therapy, exercise and wellness through dance, and mental health. They are based on skill level, socialization, and mental health. The music component will introduce a variety of instruments and rhythms to address purposeful and intentional movement. The dance component uses the beat, lyrics, and pattern of steps to address fluidity, balance, and cognitive function. The art component uses different mediums to address sensory input, dexterity, and expressiveness. The social and mental health focus is centered on reducing isolation through relationships, increasing self-confidence and expression, and providing a fun experience that leaves participants feeling energized.
We have partnered with the Intercultural Senior Center (ISC) to provide this workshop series on-site at their facility in Omaha. ISC serves seniors isolated by poverty, language, cultural, and transportation barriers, including immigrants and refugees. ISC provides transportation and interpreters, making the program accessible and alleviating the barriers of Internet access, transportation, and language. The series will simultaneously be provided in-person.
The series will be led by an instructor with qualifications in each program area.
We are overjoyed to have this program and we can’t wait to see you all!
Sessions and Curriculum -coming FALL 2025
In-person will be at: Intercultural Senior Center 5545 Center Street, Omaha, NE 68106
Questions? info@parkinsonsnebraska.org
What Do You Like Best About Your Parkinson’s?
July 2, 2021
by Dave Ciaccio, Board Chair
I once read that ‘knowing the right answers will help you in school’ but ‘knowing how to question will help you in life’. If this is the case, my 10 year old grandson is headed for a very interesting life. As you all know, my thing with our Parkinson’s Disease is tirelessly trying to remain positive. Over Memorial Day weekend I was lacking that golden positivity. My son and his children came to visit from Kansas City, and being that they have five children under ten years old, there was no more time to discern my low positivity rating.
At one of the many meal times, I noticed that 10 year old Maddie was watching my hand tremor. After a few minutes she asked: “Grandpa Dave, do you take medicine for your Parkinson’s?” Easy question. I said “yes, I do Maddie”. End of that discussion. However, that question was followed up by I0 year old (twin) Isaac’s question: “Grandpa Dave, what do you like best about your Parkinson’s?” Not an easy question. After a minute of thought, I said “there are a lot of things I like best, Isaac. The ones I like the best are the new friends I have made, a chance to help others with their Parkinson’s and eating healthier”.
I spent the rest of the weekend positively seeking more items to answer Isaac’s question that I now ask you…
“What do YOU like best about Parkinson’s?”
Find a Doctor Who is An Expert in Parkinson’s
June 4, 2021
by Dave Ciaccio, Board Chair
The 5th and final newsletter in a series covering the Parkinson’s Foundation’s “5 Steps to Living Well with Parkinson’s.” This month: Find a doctor who is an expert in Parkinson’s.
When my first symptoms of Parkinson’s started to show, I went to see my family physician. After some questioning, he said that I might have Parkinson’s, but he wanted me to see an ‘expert’.
So, I went to see a neurologist who, after some questioning, said again that he thought I had Parkinson’s, but he wanted me to see an ‘expert’.
I set up an appointment with Nebraska Medicine’s Movement Disorder Clinic. There, the doctor confirmed my diagnosis. I was distressed and relieved. Thanks to this expert, I had a direction in a new life.
So what should you look for when looking for help?
The Michael J. Fox Foundation defines a movement disorder expert as “a neurologist with additional training in Parkinson’s disease and other movement disorders. This type of doctor typically has extensive knowledge of Parkinson’s therapies and ongoing research.”
Many of us are fortunate to have these specialists within a reasonable distance. Given advancements in telemedicine, people living in more remote areas are able to connect to expert care. But even just seeing a specialist two to three times each year is helpful.
Seeking out and leaning on an expert gives you peace knowing that, in years to come, you have the support you need on this journey with Parkinson’s.
Helping the Fight Against Parkinson’s in Grand Island
June 4, 2021
Parkinson’s Nebraska is excited to announce a grant award to the Grand Island community for the Rock Steady Boxing program! The grant helps cover the cost of the annual program affiliate fee. We are proud to support the Grand Island community and help make PD exercise more accessible.
The Rock Steady Boxing class is offered at the Grand Island YMCA in partnership with the Balance Mobility Aquatic Center. Together, they have been helping the community fight back against Parkinson’s since 2018. The class is offered through a partnership between the Balance Mobility Aquatic Center and Grand Island Family YMCA. It serves men and women of all ages and abilities in the Grand Island community.
The program gives people with Parkinson’s disease hope by improving their quality of life through a non-contact boxing-based fitness curriculum. It improves strength, balance, and flexibility through exercises such as speed bag work, stretching, and push-ups. Participants have been able to return to their favorite activities, spend more time with family, and improve their Parkinson’s symptoms.
Before starting classes, participants are evaluated by a physical therapist at the Balance Mobility Aquatic Center. The evaluation includes an assessment of current health conditions, special requirements, and needs to make to be sure the class is safe and effective. They determine the correct glove size and provide the participant with gloves, wraps, and other equipment for the class.
If you are interested in participating in the Rock Steady Boxing program at the Grand Island YMCA, contact the Balance Mobility Aquatic Center to schedule your initial evaluation. Start fighting back against Parkinson’s today!
Rock Steady Boxing Grand Island YMCA 221 E. South Front St. Grand Island, NE 68801 Monday- 10:30 am Wednesday- 11:00 am Friday- 10:30 am Schedule your initial evaluation at the Balance Mobility Aquatic Center: 308-398-2170 Ashlyn Cramer acramer@grandislandpt.com http://grandisland.rsbaffiliate.com/
Save the Date to Double Your Dollar
June 3, 2021
Parkinson’s Nebraska is excited to participate in the 2021 Give65 Event. Give65 is an online giving event hosted by Home Instead Charities. The event will kick off at 8:00 am on Tuesday, July 13th and end at 1:00 am on July 16th.
That’s 65 hours of giving to support Parkinson’s programs and service providers across Nebraska! Your gift will help provide community grants and scholarships to support Parkinson’s wellness programs such as exercise classes, support groups, and specialized therapy.
Double Your Donation!
Not only does your gift provide grants for crucial services, it impacts twice as many programs. We have $3,000 in matching funds available during the Give65 Event. That means the first $3,000 in donations between July 13- July 16 are guaranteed be matched- dollar for dollar!
But that’s not all! Home Instead Charities is providing its largest package of additional financial incentives this year. Learn more about these incentives and how you can stretch your dollar even farther at www.give65.org.
Take advantage of the matching funds and other incentives to multiply the impact your gift makes. Learn more about our campaign and how your gift supports the Parkinson’s community at www.give65.org/parkinsonsnebraska.
You can make living well with Parkinson’s a reality for all Nebraskans. We wouldn’t be able to improve the quality of life for Nebraskans with Parkinson’s and their families without you.
Thank you!
Support Group Resources
June 3, 2021
Support groups are an important part of living well with Parkinson’s. They provide an opportunity for people with Parkinson’s to meet with others for support, share knowledge, and learn coping skills from one another. Support groups also help overcome the isolation and depression of Parkinson’s through friendships and social connections.
There are several types of support groups to meet the various needs of members of the Parkinson’s community. Some groups provide support to people with Parkinson while others focus on
Care partners
Family members
Young-onset Parkinson’s Disease
Women with PD
They can meet monthly or quarterly, in-person or virtually, at a church or at a restaurant. Some secure an educational speaker each month, some socialize, and some make time for both. Support groups can be designed to fit the needs of each community and leader.
Across Nebraska, groups meet each month to bring hope to people with Parkinson’s and their families. Some areas of the state have less access to support groups. According to the Parkinson’s Disease Needs Assessment of Nebraska, there are significantly fewer groups in Central and Western NE part of the state:
Western NE
Central NE
Eastern NE
Parkinson’s support groups
2
5
19
2021 Parkinson’s Disease Needs Assessment of Nebraska
You can help increase services by facilitating a Parkinson’s support group! Parkinson’s Nebraska is here to help. We have community grants available to help develop support groups across the state.
Parkinson’s Nebraska Community Grants Parkinson’s Nebraska has grant funding available for programs such as support groups. We provide funding for marketing materials, educational resources, snacks, trainings, and other group costs. Learn more about our grants and the programs we fund here.
It takes time and dedication to lead a successful group. Luckily, there are many resources to help you start and manage a group that can truly impact lives. Below are some of our favorites:
Every Victory Counts Manual This manual from the Davis Phinney Foundation provides essential information and inspiration to live well with Parkinson’s. It features numerous interviews, podcasts, expert opinions, and more on a variety of topics. Some facilitators use this book to guide the topics they talk about and the information they share with the group.
You can download the free Every Victory Counts manual here.
Parkinson’s Foundation Support Group Guide This guide serves as a manual for starting and maintaining a Parkinson’s support group. It provides in-depth information on starting a group, setting up the first meeting, topic ideas, maintain the group, specialty groups, and much more.
You can view the free Parkinson’s Foundation Support Group Guide here.
In Sync Support Group Leader Program This program provides specific trainings for support group leaders online, through Zoom, through a support group leader newsletter, and by providing other resources. The best way to learn about PMD Alliance In Sync resources is to sign up for their newsletter and “opt-in” to the Support Group Leaders list by checking the box at the bottom of the subscribe page.
You can subscribe to the In Sync Support Group Leader Newsletter here
There are many other resources available to help you get a support group started in your community. We are happy to chat on the phone to brainstorm ideas or answer any questions you have. Please let us know how we can help!
This year is the first annual Pins for Parkinson’s event, a bowling fundraiser to support the mission of Parkinson’s Nebraska. We want to take the event statewide- and we need your help. Host a Pins for Parkinson’s event in your community!
The good news is bowling fundraisers are usually pretty easy events to plan. Many bowling alleys have experience hosting fundraisers and even have pre-made packages (don’t worry if your doesn’t- we can help!) Plus, we are here to help.
How Can You Help?
Coordinate with your local bowling alley
Determine local event details
Distribute event information in the community
Secure local event sponsors and raffle prizes, if desired
We are here to help make the planning as easy as possible. Let us help you save time by providing you with the templates, tools, and resources to host a successful event in your community!
How Can Parkinson’s Nebraska Help?
Event marketing templates (flyers, graphics, social media content, etc.)
Sponsor letter and email templates
Event registration pages
Event funding
To learn more about hosting an event in your community, contact Amber at amber@parkinsonsnebraska.org or call 402-210-1419.
Volunteer Opportunity: Pins for Parkinson’s Planning Committee
May 5, 2021
We are starting to plan for the 2021 Pins for Parkinson’s event and we want you to be a part of it.
The event is tentatively scheduled from 7-9 pm (doors open at 6) on Saturday, August 7th at Maplewood Lanes. Registration will include bowling shoes, pizza, and soda. Other food, drinks, and alcohol will be available at the bar with 10% of sales coming back to us. We are planning to host a silent auction during the event.
We are looking for community members who are interested in giving back by joining the Pins for Parkinson’s Planning Committee! The general responsibilities of the Pins for Parkinson’s planning committee members are outlined below.:
Event planning & Coordination
Sponsorships
Event Promotion & Marketing
Silent Auction/ Secure prizes
Pins Across Nebraska We want to go statewide and we need your help!
Bowling fundraisers are fun and easy to plan in any community with a bowling alley. They are a turn-key event with a big impact on the community. Plus, we’re here to help! If you enjoy planning events and think this looks like a fun, please reach out to us about hosting a Pins for Parkinson’s event at your local bowling alley. Contact Amber at amber@parkinsonsnebraska.org or call/text 402-210-1419.
Because of volunteers like you, we are able to improve the quality of life for all Nebraskans living with Parkinson’s and their families. We are very excited to offer this opportunity and look forward to working with a committee!
Create Healthy Habits
May 5, 2021
by Dave Ciaccio, Board Chair
The fourth newsletter in a series covering the Parkinson’s Foundation’s “5 Steps to Living Well with Parkinson’s.” This month: Create Healthy Habits.
When I think about the word ‘healthy’, it invokes thoughts of nutrition, exercise, blood pressure, etc. But ‘healthy’ is much more than that. It’s a mixture of physical, mental and spiritual well-being. It’s a balance of all three dimensions that leads to a higher quality of life.
At times, we might find ourselves focused on one over the others. Let’s say, physical over spiritual. But neglecting any one at length can have an adverse effect on our overall health.
Here’s how I see the dimensions of my health:
Physical Health: encompasses a variety of healthy behaviors including exercise, nutrition and abstaining from harmful habits. It means learning about and identifying symptoms of Parkinson’s and getting regular check-ups.
Emotional Health: encompasses optimism, self-compassion, self-acceptance and the ability to share feelings while respecting, appreciating and loving others.
Spiritual Health: encompasses a set of guiding beliefs, principles, or values that give our lives direction. It involves a high level of faith, hope and commitment, which provides us with a sense of purpose and a willingness to seek meaning in our everyday life. It allows us to appreciate the things which cannot be easily explained or understood.
Every dimension of our health is our own. It’s up to us to keep them in balance. And one way to do that is with the people around us. The author Dan Buettner said it best, “Remember, the people we surround ourselves with influence our behaviors, so choose friends with healthy habits.”
