April is Parkinson’s Disease Awareness Month

March 31, 2022

by Jessica Buss, Marketing Coordinator

April is Parkinson’s Disease Awareness Month because it is the birth month of James Parkinson. He was the London physician who published “An Essay on the Shaking Palsy” in 1817. He was the first physician to describe Parkinson’s disease. 

On April 11, 2005, the tulip was adopted as the official symbol of Parkinson’s at the 9th World Parkinson’s Disease Day Conference in Luxembourg. Today wearing the red tulip raises awareness and shows support for people living with Parkinson’s and their families globally. 

Parkinson’s disease is a degenerative, neurological disorder caused by a deficiency of dopamine in the brain. It is progressive, currently incurable, and the second most common neurodegenerative disorder in the U.S. It is estimated there are over one million people in the United States that have Parkinson’s disease, with the prevalence rising to 1.2 million by 2030.  

The symptoms of Parkinson’s disease vary from person to person and can include tremors, slowness of movement and rigidity, difficulty with balance, swallowing, chewing, and speaking, cognitive impairment and dementia, mood disorders, and a variety of other non-motor symptoms.  

We are committed to helping patients and loved ones cope, and to offer help in maintaining your quality of life. When it comes to Parkinson’s disease, Parkinson’s Nebraska wants you to know you are never alone. 

Donate today to support our mission to improve the quality of life for Nebraskans with Parkinson’s and their families.

Do I Really Have a Problem?

March 4, 2022

by Dave Ciaccio, Board Chair

As I write this, the Russian military continues to impose unimaginable hardships on the people of Ukraine. Some trek through subfreezing temperatures looking for refuge, others tell their children why daddy can’t come with us. They shelter on cold sidewalks at the border, in basements of abandoned buildings, and seated in dark train cars parked at the station.

I sit here thousands of miles away in a warm house. My children and grandchildren are safe and I have food. I eat with a tremor that will never go away and when I stand up from the table my balance is off. I have friends who are confined to a wheelchair. Our thinking is impaired.

These are the painful facts of Parkinson’s Disease.

They too are hardships. They too can be unimaginable. But they don’t hold us hostage. We’re free to live our lives in the face of it. To eat dinner with our families and find refuge wherever we are.

I ask myself, do I really have a problem? Then I make the choice to go on living because so many others can’t.

Brutal Facts

February 4, 2022

by Dave Ciaccio, Board Chair

There are moments in daily life with Parkinson’s where we confront the brutal facts of our disease.

I was faced with one this month in a Rock Steady Boxing class. Simply put, my body had a hard time doing what the brain was trying to tell it to do. There were too many movements coming too quickly. When I faced this fact, I had to either step aside or move past it to continue boxing. I had to make a conscious choice to keep on despite being discouraged.

Jim Collins writes about this in his book Good to Great. He says that real change begins when we confront the brutal facts. That we need to maintain ‘unwavering faith’ in order to succeed regardless of the challenge.

Some days, defining success with Parkinson’s might simply mean showing up and doing our best. Other days, we might find that we can rise above the realities of PD with unwavering faith in ourselves.

When you come face-to-face with a brutal fact, don’t let it become your truth. Instead, make a choice to keep on with resilience and determination.

Reach Out in 2022

January 11, 2022

by Dave Ciaccio, Board Chair

A new year brings many hopes, concerns, wishes, and worries. We set goals and vow to do better. We resolve to lose those extra pounds or make some extra money. We think a lot about ourselves.

But what if we also commit to one of the 16,000 Nebraskans carrying the weight of Parkinson’s? What if we made a resolution to support them in some small way?

Over the holiday, I was reminded that simply reaching out can help someone. It doesn’t take a big gesture to help someone feel special or heard. The simple act of picking up the phone can be enough. It can help them feel just a little better, and make their day a little brighter and their pain a little more bearable. And that feeling reverberates through everyone around them. It’s contagious.

So, on top of all the promises and goals we set to improve ourselves in 2022, I’d like to challenge you to make one that is as important as any other. And that’s to make time for a person with Parkinson’s. To simply ask how they’re doing. To just reach out.

Increase Your Being

December 2, 2021

December 2, 2021

by Dave Ciaccio, Board Chair

Year-end. A time for reflection. A time to prepare for a new beginning. I don’t know about you, but I often get to this time of year and ask myself some questions.

“Have I done enough to improve the lives of others? Have I expended too many resources on myself? If I am happy, then why am I happy?”

Research shows that money isn’t that important in terms of our overall happiness. It’s relationships that matter. With others and with the things that promote meaning and purpose in our lives.

When I sit with this, I find that giving of myself in some small way to improve the lives of those with Parkinson’s rates highly just behind my faith and family. The time I’ve spent with Parkinson’s Nebraska has given me the gifts of encouragement, understanding, and charity. It’s given me the gift of insight and perspective with a firsthand look at the lives of others with difficulties greater than mine.

I realize that the more I give, the happier I become. Bishop Robert Barron summed this up saying, “Your being increases to the extent in which you give it away… The more you give of your life, even the little you have, you’ll find it multiply in yourself.”

So go ahead and reach out to someone in need. Decide what charities you’d like to give to (hint: Parkinson’s Nebraska) and give back to that cause which is closest to your heart. You might just notice your being increase and multiply.

Listen to Your Trainer

November 5, 2021

by Dave Ciaccio, Board Chair

I recently watched the PBS series on Muhammad Ali directed by Ken Burns. As always, Burns created a moving story about ‘The Greatest’ heavyweight boxer of all time. On October 29, 1960, Cassius Clay won his first professional fight. Over the next two decades, he went on to amass 56 wins with only 5 losses.

In 1979, Ali’s trainer noticed his speed, flexibility, and endurance declining and urged him to stop fighting. Ali didn’t listen. He entered the ring on October 2, 1980, and was soundly defeated. He retired the following year, finally following the advice of his trainer.

It was revealed after the fight that Ali had been examined at the Mayo Clinic, and the results were shocking. He had admitted to tingling in his hands and slurring of his speech. Although Ali’s doctors disagreed about whether his symptoms were caused by boxing and whether or not his condition was degenerative, he was ultimately diagnosed with Pugilistic Parkinson’s syndrome.

Many of us are blessed to have an excellent Parkinson’s support team with highly educated doctors and researchers guiding us. They are our trainers, providing guidance and tools to help us stay ahead of our opponent. Sometimes we think we know better. We’re the ones in the ring fighting this complicated disease. But just like “The Greatest”, we can’t go it alone. We have to find it in us to set aside our pride and listen to our trainers.

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


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.

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.