Happy Spring! We are moving forward with new energy and a greater awareness of emerging needs in the Chicago community. April is Parkinson’s Awareness Month – a time for patients, family, caregivers and friends across the country to share information, get expert advice, and join supportive networks.

I am excited to tell you that the Village is expanding its Health and Wellness initiative to include Parkinson’s Disease. The need is great: Illinois ranks consistently among the top five states in the country for incidence of this progressive neurological condition. Modeled after our Brain Health/Memory Loss program, our Parkinson's program will focus on education, connection and support for patients, families and care partners. As with all challenging health conditions, early awareness and diagnosis is critical to managing the best life possible.

Read the stories below about people who have not let their diagnosis define them and have found ways to be themselves despite the changes they are experiencing. They have not let themselves become isolated, and through community they have found inspiration, motivation and support.

Warm Regards,

Darcy Evon, CEO

As Director of Education and Community Programs at Hubbard Street Dance Chicago, I have the privilege of seeing dancers of all ages and abilities hone their skills and develop a love of dance, whether they are new to the art form or returning. One of my favorite programs is our Parkinson’s Project. This program uses contemporary dance techniques to work to slow the progress of the disease, as well as providing a community of support for our students.

Led by founding teaching artist Sarah Cullen Fuller, this remarkable program focuses on participants’ strengths — on their talents and potential, as they learn to see themselves as we see them - as dancers and choreographers. All Hubbard Street Parkinson's Project dancers explore improvisation, technique and artistry in the long-running class and community.

While the classes are currently offered only in a prerecorded video format, when they are live this is a dance class that combines the artistry of dance with live music to encourage one's natural instincts for movement and the benefits that movement can produce physically and socially. It's an opportunity for participants and their loved ones to do something fun together.

Our students are dedicated to the class and say the following:

The heart of our program is elevating the idea of who is a dancer - and who gets to participate and opening that up. It is risky and courageous as an adult to return to things we did as a child. But doing it in such a nurturing and welcoming environment one can still find oneself a dancer, no matter what.

The program is led by Sarah Cullen Fuller. Sarah is an educator, dancer, and choreographer who is dedicated to the transformative power of dance. A graduate of the University of Illinois, Champaign-Urbana, Sarah began her career in dance performance working with the Joffrey and Boston Ballets, and has spent the past twenty years with Hubbard Street Dance Chicago as a main company performer, stager, educator, faculty member of the Professional Program, and Founder of The Parkinson’s Project. Sarah says of the program, ”Founding this program has been by far one of the most wonderful things to have ever happened to me. The dancers are truly extended family, and I cannot imagine my life without them.”

You can try out our classes online at hubbardstreetdance.com/ and sign up to be notified when live classes begin again at this registration link (click here).

Profound gratitude to these two individuals for sharing their experience of living with Parkinson’s.

In 2013 Jim Kroeger was approaching a milestone birthday. Age 50. An avid weightlifter and health club operator, Jim began to notice some worrisome changes in his body - declining upper body strength, clumsiness, difficulty getting in and out of a car, increased rigidity. His wife had to help him put on a coat or a belt and people on the street would ask him if he had hurt his back. He wondered what middle age was going to be like if he already felt like he was 70. On December 16, 2013, a neurologist gave Jim the sobering report: “You have Parkinson’s Disease, a degenerative condition for which there is no known cure.” Jim has generously shared what it is like for him living with the disease.

“It makes you less of a person. It ages you. You are slower, weaker, It saps our energy, weighing you down little by little until you want to throw in the towel. And it isolates you.

“But somehow, you summon the resolve to fight as you would fight a bully who wants to steal your lunch money; exerting your will, drawing on courage and strength to not back down and somehow, some way deliver a punch in the nose to that bully: ‘I think I’ll keep my money today.’ ”

The resolve that has sustained Jim comes in large part from Rock Steady Boxing, a non-contact boxing-based fitness curriculum designed to improve quality of life for people with Parkinson’s. When Jim first learned about it, he knew it was something he needed to do.

Around the same time, Jim was introduced to Eric Johnson, a personal trainer who works with individuals with neurological conditions. Eric recalls, “We both really wanted to help the Chicago area PD community and create a home for empowerment, exercise, and camaraderie.”

The two of them, along with two trainers from one of Jim’s fitness centers, in what proved to be a deeply bonding experience, drove to Indiana to be trained and certified in the Rock Steady technique.

Two months later Jim and Eric, now partners, decided to roll out the program, starting with Eric’s six clients and Jim. That was 2015 and though slowed down by the pandemic, they have now trained several hundred people. Eric says, “Our team of fighters is a strong family that supports one another. This program wouldn't have been possible without Jim. He has a unique ability to create relationships and connect people. He is the heart and soul of our Rock Steady program, we all rally around him.”

It’s clear why this is so. Jim told us, “One of the big benefits of the program is the strength and motivation you get from knowing that on your right, and on your left, people are fighting just like you. You don’t want to let them down by not showing up one day. You inspire each other and are accountable to each other; you get them and they get you.”

“But most important, you must have hope – without it you have nothing. You hope for inspiration, for motivation and strength; hope for tomorrow, for keeping going. If you can evoke a sense of hope, it gets you out of bed in the morning and even though you think you can’t, you’ll be surprised at what you can accomplish.”

Jim Kroeger is the owner of Edgewater Fitness Center, Ravenswood Fitness Center, Lincoln Park Fitness Center and is co-founder of Rock Steady Boxing Windy City.

One day while giving a speech, former 48th Ward Alderman Mary Ann Smith found she couldn't breathe. “I knew it couldn’t be nerves – I speak in public all the time. Then it happened again while I was delivering a eulogy and then again. It just didn’t make sense to me.”

“I wouldn't go to the doctor because of public speaking problems or dandruff or other little things here and there. Parkinson's is perplexing, confusing and devious. Symptoms are sometimes hard to describe.”

Then, about a year ago, an MRI of her brain revealed that Mary Ann had Parkinson’s. Now faced with the understanding that she had a disease involving her brain, she shut down and her sons and nieces took over (Mary Ann is pictured here, flanked by her nieces). They thoroughly researched what is known about Parkinson’s and what they thought would be of help to Mary Ann. That’s when vegetarian meals started showing up at her home, along with an acupuncturist, massages, and herbal supplements. These personalized supports from her family brought her back to herself.

“Then I started to encounter all the professional help that I needed – occupational therapy, physical therapy, counselors, dermatologist, ophthalmologist. I found myself on the road to becoming a professional patient and made up my mind that I would not lose myself, and would chart a course completely customized to my own situation.”

“I am so fortunate to be in Chicago and have access to Rush Medical Center and the Shirley Ryan Ability Lab. They are doing pioneering work in Parkinson’s. The Ability Lab takes in as much information as possible from each patient so they can customize the treatment. They are always taking notes, asking the patient what works, what doesn’t, building a useful database.”

“As soon as I became a patient, I was deluged with emails from foundations, hospitals and other Parkinson’s entities that were offering something very important – community.

“But I have built my life around other communities – neighborhoods, family, the Village. Here is where I find my strength. These are my brothers and sisters and they need to understand about Parkinson’s.”

Mary Ann Smith is a former alderman of the 48th ward of the City of Chicago; she was appointed in 1989 by Mayor Richard M. Daley to replace Kathy Osterman. She won re-election in 1991, and was re-elected four more times before retiring in 2011. Mary Ann is a Village member and a former Village board member.

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One of the Village’s 2020 Trailblazer Award winners, Dr. Louise Aronson was interviewed by Terry Gross on an NPR “Fresh Air” episode called “A Clearer Map for Aging.” Listen to the podcast here.

Whether you missed the live event (April 15) or want to share it with others, please enjoy a recording of Connecting Through Communication for Families and Friends of Persons with Dementia, featuring Dr. Angela Roberts!

A diagnosis of dementia shouldn’t diminish your relationship with those you love. Learning new ways to communicate can help to deepen your connection and create positive engagement. This event launched the Aging Brain & Body series, presented by The Chicagoland Villages Collaborative: Chicago Hyde Park Village, South Loop Village, Skyline Village Chicago, and The Village Chicago.

Click here to view the recording OR copy and paste the link to share with friends, families, and colleagues who wish to learn more about this important topic: https://vimeo.com/539381515

Join us on Wednesday, May 12 from 5:00–6:00 PM (CDT) via Zoom to celebrate the arrival of spring with friends old and new.

Special guest speaker, Dr. Cheryl Woodson will lead the Village in a group discussion about breaking out of the lock-down lifestyle and putting the spring back in your step! Members and their guests will then move to breakout rooms for more discussion and mingling.

Dr. Woodson’s approach to life is reflected on her website, “Living Out Loud!” and now is a perfect time to hear her message. She is a wife, mother, doctor, businesswoman, educator, and an author. She has earned a 2nd degree Black Belt in Tae Kwon Do and is an experienced family caregiver who navigated her mother’s 10-year journey with Alzheimer’s disease. She is also an entertaining, informative and inspiring speaker whom the New York Times called “a frank and funny woman.”

Register for this event by visiting thevillagechicago.org/calendar/ OR by emailing [email protected]

There is no better way to learn about The Village Chicago's activities and services than to attend our annual meeting. We will review the past year’s highlights and talk about plans for the future. Mark your calendar, and see the May issue of The Navigator for registration information.

Learn more about the Village by calling us at 773.248.8700 or click here to download the membership application form.

2502 North Clark Street, Chicago, Illinois 60614. 773.248.8700