Living with Parkinson's Disease: Bob and Renee's Journey

Parkinson's disease is a progressive neurodegenerative disorder that affects nearly one million people in the United States. Among them are Bob and Renee May, a couple who moved to Fort Myers from New Jersey nine years ago. Their story is one of resilience, adaptation, and the importance of community support in facing this challenging condition.

Bob, 79, was diagnosed with Parkinson's disease in 2013. As a former certified public accountant, Bob was accustomed to precision and control in his work. However, the onset of Parkinson's brought unexpected changes to his life. It began with back pain, which at first seemed unrelated to Parkinson's.

"Apparently, a lot of people with Parkinson's have pain," Bob’s wife and care partner Renee explains, "but then the original neurologist we went to said no, you don't have pain with Parkinson's." This highlights the complexity of Parkinson's symptoms and the importance of finding knowledgeable specialists.

Early symptoms and seeking community support 

The hallmark symptoms of Parkinson's soon became apparent in Bob's case. He began to shuffle his feet when walking, a common sign of the disease. As time progressed, Bob's tremor worsened, and he began experiencing drooling, another frequent symptom of Parkinson's. These changes prompted the couple to seek more information and support.

WATCH HEALTH MATTERS: Lee Health Neurologist explains the early signs of Parkinson’s

In New Jersey, Bob and Renee were active in their local Parkinson's community programs. This involvement continued when they moved to Fort Myers in 2015.

"We joined the support groups down here, and I started volunteering," Renee says, who volunteers with the Lee Health Parkinson Program, doing computer work and assisting with various events. A navigational and educational outreach program, the Parkinson Program supports community members living with the disease.

Michelle Martin, who manages the program, says it is only with the generous support of its dedicated volunteers like Renee that the program continues to thrive.

“Renee and Bob’s proactive approach aligns with recommendations from health professionals who emphasize the importance of early intervention and ongoing management of Parkinson's,” Michelle says.

Staying active and connected

Bob's commitment to maintaining his health is evident in his participation in various activities. Bob participates in various programs offered by the Lee Health Parkinson Program, both in-person and virtually, demonstrating the increasing accessibility of resources for those with Parkinson's.

The couple's story also highlights the importance of community in managing Parkinson's. "It's getting to know people who can understand what you're going through, and you can understand what they're going through," Bob explains. "It speaks to the notion that you're not alone."

This sense of community is particularly significant in Southwest Florida, where over 3,000 people live with Parkinson's disease.

"I go to Rock Steady boxing, an internationally recognized Parkinson’s exercise program, three times a week," he says. "It's good for me because it's not only the exercise, but it's also being with people with Parkinson's and seeing what it's like." This sentiment echoes the advice of many Parkinson's specialists who stress the importance of both physical activity and social connection for people living with the disease.

READ: Learn more about Parkinson’s disease and related movement disorders

Navigating challenges

The couple's journey with Parkinson's hasn't been without its challenges. Bob recalls, "Last year, at the 10-year mark, all of a sudden, I was having more trouble walking. I was having more trouble doing exercises and things around the house."

This progression is typical of Parkinson's, which affects each person differently and can change over time.

To help meet these challenges, Bob and Renee continue to use both community resources, and when necessary, acquire adaptive tools. For example, Bob uses a special tool to help him button his garments and another one which helps him put on his socks.

These aids help Bob and others maintain their independence, a crucial factor in their quality of life when living with Parkinson’s. He notes that learning about his disease has empowered him, too, because the disease can affect people differently.

"The more you learn about this disease, the better off you are," Bob says. "Once they told me that I had this disease, I wanted to know what I was in store for and what I could do about it."

Bob and Renee's experience underscores the variability of Parkinson's disease. As Bob notes, "Every Parkinson's situation is different."

Michelle says this variability is well-documented in medical literature, with symptoms and progression varying widely among individuals.

“After working with thousands of people in our community living with Parkinson’s over the past 16 years, it’s clear why many experts refer to Parkinson’s as the ‘snowflake disease,’ because no two people experiencing it in exactly the same way,” she says.

Advice for those newly diagnosed

Despite the challenges, Bob maintains a positive outlook. His perspective is supported by advances in treatment and management strategies for Parkinson's.

Renee offers advice for those newly diagnosed with Parkinson's or their care partners: "Learn as much as you can. Some of the best online sources are the Parkinson’s Foundation, Davis Phinney Foundation, APDA, and Michael J. Fox Foundation.”

She adds, “For a local option that’s an in-person live class, you can attend ‘PD101-Navigating Parkinson’s, offered quarterly by the Lee Health Parkinson Program.

“We have come to realize that it's not a death sentence,” she emphasizes. “People can live a long and happy life with Parkinson's. Exercise is the number one thing, along with having a healthy diet.”

Several studies have shown that exercise can slow disease progression and may also, in some cases, reverse neurodegeneration (the gradual loss of cognitive and abilities such as memory and decision-making because nerve cells in the central nervous system stop working or die) in Parkinson’s disease.

“This is why most experts agree that ‘exercise is medicine’ for people with Parkinson’s,” Michelle says.

Since Bob's diagnosis in 2013, he and Renee continue to live a vibrant life involving regular activity and connection with other members in the Lee Health Parkinson Program.

READ and JOIN: Movement classes for Parkinson’s disease

“While Parkinson's presents significant challenges, Bob and Renee's experience shows that with the right support, resources, and attitude, it's possible to maintain a fulfilling life and strong relationships despite the disease,” Michelle says.

Lee Health Parkinson Program

This comprehensive program connects members with personalized navigational support, education, movement classes, peer-to peer-enrichment groups, and social opportunities, all keys to living well with Parkinson’s.

Monthly educational classes are offered in collaboration with Lee Healthy Life Centers at three locations: Estero (Lee Health Coconut Point, Estero Recreation Center), Fort Myers, and Cape Coral. Personal guidance is also available.

For example, program members who live in Estero can access services/activities in-person or virtually:

In-person activities

• Twice weekly exercise classes
• Monthly enrichment groups
• Monthly educational series
• Annual care partner events
• Annual educational seminars
• Annual Tai Chi balance workshops

Zoom/virtual activities

• Twice weekly exercise classes
• Weekly mindfulness medication class
• Three specialized monthly enrichment groups
  • one is open to all members
  • one is open to those who are caring for a loved one with Parkinson’s
  • one is open to ladies with Parkinson’s disease

In addition, the program provides ongoing 1:1 care advisor counseling and specialized navigational support for members. All at no cost.

This September! Parkinson's Education Series

SPEAKOUT! Communication & Cognitive Therapy for Parkinson's - Learn how this specialized, evidence-based Parkinson's treatment can help improve communication, speech and swallowing, and cognition.  Come to Coconut Point, WellWay-Cape Coral, or Cypress Cove to learn more.

Click here to RSVP