Parkinson’s Nebraska presents: The NET Connects program
October 6, 2021
Parkinson’s Nebraska is proud to announce The NET Connects program, supported by a grant from the Davis Phinney Foundation. The Net Connects program is a part of the effort to make Parkinson’s education more accessible in Nebraska. The program is in partnership with NET, a public statewide Nebraska media service, and will provide a 30-minute television program for the NET Connects series to be broadcast on the statewide NET World Channel, on the web, and on mobile media. These episodes will highlight a discussion of panelists who are involved in the Parkinson’s world. Whether a specialist speaks or a caregiver, all perspectives will be discussed in this series. We are excited to be able to offer this program to better understand the complexity of Parkinson’s Disease and provide additional resources for Nebraskans.
This will become available in the Spring of 2022 and we couldn’t be more excited! Stay tuned with us for more updates on this project!
Just Do It
October 3, 2021
by Dave Ciaccio, Board Chair
Launched in 1988, the Nike “Just Do It” campaign featured athletes talking about their accomplishments and the emotions they feel as they compete.
The tagline suggested something more than its literal meaning. It stood for something much bigger. It allowed people to interpret it as they wanted and to apply it to their own lives. For those of us with Parkinson’s, it can be very meaningful.
The other day, I found myself slowing down, almost stopping in the middle of an activity. As many know, the symptom of slow movement is called bradykinesia. I was not in a ‘freeze’ state, but near a stall. It was at that time that the words just do it entered my mind and I pushed through to finish the task with mindful effort. It felt good. Activity completed just like old times.
The more we make ourselves intentionally push through a stalled moment in time, the greater the sense of accomplishment and optimism. So, in your next slow moment imagine the Nike swoosh and ‘JUST DO IT’!
Pins for Parkinson’s Summary
August 13, 2021
Thank you all so much for attending our first annual Pins for Parkinson’s event this past Saturday, August 7th at Maplewood Lanes!
This was our first go-round at organizing this event and we are thrilled with the outcome. It was amazing to hear everyone’s stories with Parkinson’s, to hear laughter, and being able to see smiling faces in person. We are already looking forward to seeing everyone on the lanes next year!
Many thanks to the wonderful public and our sponsors, we are happy to say that we have reached our goal. We are forever grateful for everyone who has chosen to support our mission throughout the years. We would not be able to improve the quality of life for Nebraskans with Parkinson’s and their families without you. Thank you.
Together, the journey of Parkinson’s is A Journey Shared.
PURPOSE, PICKLEBALL & INTENT
August 6, 2021
by Dave Ciaccio, Board Chair
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.
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
July 20, 2021
The Play, Move, and Create Workshop Series, supported by a community grant from the Parkinson’s Foundation, 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. These weekly, one-hour classes will be offered in four sessions throughout the grant period. Classes will be Thursdays from 12:30 p.m. to 1:30 p.m. CST. Each class will begin with a large group activity, followed by breakout music, dance, and art opportunities allowing participants to choose which modality to engage in. 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. Covid-19 regulations and guidelines will be followed during the in-person program. We will have participants fill out a waiver before classes. The series will simultaneously be provided in-person and virtually through Zoom. Virtual participants will have the supplies mailed to their homes at the start of each session. They will be able to connect to the large group activities as well as their chosen modality via the Zoom Breakout Room feature.
The series will be led by three instructors with qualifications in each program area. The art component will be led by Holly Lukasiewicz, a professional teaching artist with over 10 years of experience teaching visual art with a belief in social-emotional awareness and intersectional design. The dance component will be led by Georgie Kuhl, an exercise professional with extensive experience and certifications in Parkinson’s-specific programs. The music section will be led by Emily Wadhams, a board-certified music therapist with experience working with a variety of neurological conditions. The program will also be supported by therapy, art, and music student volunteers from the University of Nebraska Omaha and Creighton University.
We are overjoyed to have this program and we can’t wait to see you all!
Sessions and Curriculum
August 5, 2021 – June 9, 2022
In-person will be at:
Intercultural Senior Center 5545 Center Street, Omaha, NE 68106
Session 1: August 5 – November 4 (No class Aug. 19th & Sept. 16th)
Weather: August 5th, 26th (No class Aug. 12th due to closure of ISC)
Musical Movies: September 2nd, 9th, 23rd, 30th
Music of the Decades: October 7th, 14th, 21st, 28th, November 4th
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!
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.
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
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:
Parkinson’s support groups
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!