Join us for an open and engaging coffee chat where community members share their personal experiences of navigating hospital stays with Parkinson’s. Discover valuable resources to support you during hospital visits and learn about the unique challenges faced by people with Parkinson’s in this setting. This interactive session will offer insights, practical advice, and a sense of community to help you feel prepared and empowered for any hospital experience.
Speaker
Annie Brooks, MSW
Senior Director, Strategic Initiatives, Parkinson’s Foundation
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
My Life, My Plight, My Parkinson's: The Story of the Tin Man
I was diagnosed with young-onset Parkinson’s disease (YOPD) in 2015 — the same year I was immersed in my career as a Director and Executive Producer of NBC's "Last Call with Carson Daly." Like Dorothy at the start of her journey in The Wizard of Oz, I had no idea how drastically my life was about to change.
My career was soaring, yet just like Dorothy being swept into a tornado, my diagnosis upended everything I thought I knew about myself and my path.
It started with a slight tremor in my left hand and lingering stiffness — symptoms I dismissed as remnants of old rugby and snowboarding injuries. When they worsened, I sought help. An initial misdiagnosis of damaged neck discs gave way to the truth: Parkinson’s disease (PD), early-onset.
Unexpected and utterly life-altering. I felt like the Tin Man, frozen in place, unsure how to move forward. "We’re not in Kansas anymore," I thought. I kept the diagnosis private, needing time to process before sharing it with others.
Did you know the Parkinson's Foundation designates medical centers that provide high-quality Parkinson's Care? Explore our Global Care Network.
Fear crept into every part of my life. Parkinson’s relentless progression felt like it was stripping away pieces of me, leaving me rusted and stuck. I’d tell others, “I’m not afraid of dying—I’m afraid of living with Parkinson’s.” Yet this thought anchored me, pushing me to fight for the life I still wanted. After failed treatments, I finally found proper care with the exceptional neurology team at Columbia University, a Parkinson’s Foundation Center of Excellence, where I was placed on a path to deep brain stimulation (DBS).
In 2023, the first DBS surgery targeted my brain’s right side, calming the severe symptoms on the left side of my body. The results were transformative, significantly reducing my reliance on medication and restoring pieces of my life.
A second surgery in 2024 further stabilized me, targeting the left side of my brain to address symptoms on the right side of my body, which had begun progressing. Much like the Tin Man getting his oil, these surgeries didn’t just ease symptoms — they brought me real hope. For the first time in years, I felt like my heart was back.
Although life-changing treatment brought hope, there were still obstacles impacting my professional creative sanctuary, yet I remained determined not to let Parkinson's win. I poured my passion into meaningful projects like co-executive producing CBS’s “Angels of Hope,” a successful fundraiser to combat homelessness. Collaborating with nonprofits like the Global Lyme Alliance gave me purpose and fulfillment. I began sharing my story at Columbia and Stony Brook Universities, hoping to inspire others.
As a proud brand ambassador for Abbott Technologies, I advocate for the life-changing benefits of DBS. Like the Tin Man, who needed oil to move, I rely on medication to function — but I’ve regained hope and purpose.
The unwavering love and support of my girlfriend and daughter reminded me that I am more than my diagnosis. Gratitude became my armor, empowering me to move forward. Living with Parkinson’s has taught me resilience, purpose and the understanding that life beyond a diagnosis is still full of endless possibility. Like Dorothy, I discovered there’s truly no place like home — and there’s no greater journey than finding your heart again.
Looking to build your support network? Explore our In Your Area feature on our website or call our Helpline at 1-800-4PD-INFO (1-800-473-4636) for your nearest support groups and exercise classes.
Watch our webinar A Deep Dive into Deep Brain Stimulation, sponsored by Abbott:
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Exercise is an essential part of overall Parkinson's management. In addition to helping with movement symptoms, exercise can have a positive impact on non-motor symptoms in Parkinson's. This program focuses on how exercise supports brain health and can lead to improved emotional and cognitive well-being.
In-person Check-in Time: 10 a.m. ET
Resource Fair: 10 a.m. – 11 a.m.
Program Time: 10 a.m. — 1:30 p.m. Lunch will be served.
Ample parking is available onsite.
Speakers:
Terry Brame
Coordinator, YMCA of Central Virginia Community Health
Lennox McNeary, MD, FAAPMR
Physician specializing in Physical Medicine and Rehabilitation, Neuro Rehab Collaborative
Philip J. Lee, MD
Movement Disorders Fellow, UVA Health University Hospital
Rock Steady Boxing Demonstration
Terry Brame - Learn the benefits of exercise on thinking changes and mood in Parkinson’s and Rock Steady Boxing Demo
Lennox McNeary - Explore recent research concerning the effects of physical exercise on cognitive decline and emotional challenges in Parkinson’s disease.
Philip J. Lee - Understand neuroprotection and neuroplasticity as they relate to Parkinson’s.
I was diagnosed with Parkinson’s disease (PD) the day after my third child was born. I was 38 years old and running our family home building business. Initially, my wife and I decided to keep this news between us. I didn’t want my diagnosis to hurt the business. Besides, we had three kids under four.
People would think Parkinson’s is why I was tired and distracted. The medications worked on a lot of the symptoms, but there were some tells. I used the medications when I knew I would be around people, but at home I was under medicating.
A few months into my diagnosis, I was prescribed big therapy. Pretty quickly, the therapist said this isn’t for you. At my age and stage of the disease, he felt I needed something more challenging and introduced me to a former patient who was skiing in Vermont, rock-climbing and organizing cycling trips in the Rockies.
I joined him and one other person for a rock-climbing session. It challenged my body and my Parkinson’s in helpful ways. It was a rush — I was hooked. The group grew, we called ourselves the “Shaky Six.” Today the group is part of UpENDing Parkinson’s, which is comprised of over 400 climbers across more than 25 gyms nationwide. But that’s a story for another day.
Explore our resources for Employment with Parkinson's: Working it Out.
As my Parkinson’s progressed, I felt it was time to start sharing my diagnosis with my friends and colleagues. Looking back, I had nothing to be nervous about but at that time, I had concerns. Would I lose friends? Would I lose customers or the confidence of my employees at my homebuilding business?
I flew out to Kansas City to tell my best friend. He was great. In fact, the very next time I visited him, we attended Kansas City Moving Day together. At work, the response basically restored my faith in humanity. Competitors showed me grace and people really showed up for me; I do not take that for granted.
I think from a business perspective, having this disease has been good. I have to try to think ahead since I don’t know how I will progress. I know it’s a well-run business. As the owner, I want to be indispensable, but if I’m doing it right, I can be dispensable. It’s humbling to say, but it’s true.
Five years in, I needed to increase my medications. I was useless between 1 p.m. and 5 p.m. I was taking 20% less medicine than I should have, which was already about 50% of the maximum daily dose. Was I already running out of runway? After only five years? That changed my thinking and I started looking at deep brain stimulation (DBS) as a treatment option.
Yes, it was brain surgery. Yes, I had a lot of questions, but I felt confident going in. After the procedure I reduced my meds by about 70%. I have also found that my body is receptive to this treatment. I adjust myself about 30 times a day. When I do it right, it helps me get over the slump or under the hump.
There are different settings I use for different activities — climbing, walking, driving, typing, general being. The near-instant response time is a godsend. I don’t have to predict how my meds now will impact my symptoms in an hour.
It’s been six years since my DBS implant. I’m taking more meds now but still less than before DBS. That’s the nature of this disease. Sometimes people ask if I should have gotten DBS sooner, but for me the timing was right. Sometimes you need to get through the bad to get to the good. When you get worse before you get better, you appreciate the better so much more.
Living with Parkinson’s—whether as a person diagnosed or a care partner—can feel like navigating constant change. In this session, we’ll use the breath as an anchor, bringing stability and presence amid uncertainty. Through guided breathwork and mindfulness, we’ll ease tension, deepen awareness, and reconnect with ourselves.
Whether this is your first mindfulness Monday, or you are a returning participant, these sessions are created with the intention of including everyone. There will be time for questions following the practice.
Speaker
Cary Goodman
Founder, Black Men's Wholeness
Public Health and Faith Consultant
The Balm In Gilead, Inc.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
In sessions with Dr. Rush, we explore different dimensions of a mindfulness practice. She will share ways to ground and settle the mind and body. These mindfulness techniques can offer moments of respite and clarity that can be useful throughout your week. Find a comfortable seat and join your mindful Parkinson's community for a special session.
Whether this is your first mindfulness Monday, or you are a returning participant, these sessions are created with the intention of including everyone. There will be time for questions following the practice.
Speaker
Taylor Rush, PhD
Health Psychologist
Director of Behavioral Services and Interdisciplinary Programs
Center for Neurological Restoration
Cleveland Clinic
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
Developing a mindfulness practice can be a great gift as we manage our journey with Parkinson’s. But how do we do it? This session will focus on the nuts and bolts of building mindfulness into your days, help you overcome common hurdles, and offer a guided meditation to help bring mindfulness to every moment.
Speaker
Devon Hase, Author, Meditation Teacher
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
In the midst of life's challenges, finding moments of stillness can be a profound gift. This session explores the power of presence — how creating quiet spaces within ourselves can provide strength, clarity, and resilience during difficult times. Through guided meditation and reflection, we'll discover how mindfulness can serve as a steady anchor, helping us navigate uncertainty with greater ease and compassion.
Join us as we embrace the gift of presence, cultivating peace in the here and now.
Speaker
Barbara Leffler, PhD, RN
Retired Clinical Psychologist and Registered Nurse
Care Partner to her husband living with Parkinson's
Parkinson's Foundation Hospital Lead Ambassador
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
Learn to navigate the unpredictability of life and Parkinson's with mindfulness. Explore equanimity practices to stay centered amid life's ups and downs.
Speaker
Crista Ellis, E-RYT, B.Sc, Yoga & Meditation Teacher, Life Coach, Founder of Rising Rose Yoga, Senior Community Engagement Manager, Parkinson's Foundation
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
In sessions with Dr. Rush, we explore different dimensions of a mindfulness practice. She will share ways to ground and settle the mind and body. These mindfulness techniques can offer moments of respite and clarity that can be useful throughout your week. Find a comfortable seat and join your mindful Parkinson's community for a special session.
Whether this is your first mindfulness Monday, or you are a returning participant, these sessions are created with the intention of including everyone. There will be time for questions following the practice.
Speaker
Taylor Rush, PhD
Health Psychologist
Director of Behavioral Services and Interdisciplinary Programs
Center for Neurological Restoration
Cleveland Clinic
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
