You Are Not Alone: Why Support Groups Are a Lifeline After a Parkinson's Diagnosis

When someone is diagnosed with Parkinson's disease, one of the first things that changes often has nothing to do with movement or medication. At a recent PD Talk hosted by the Parkinson's Association of Southwest Florida (PASWFL), licensed clinical social worker (LCSW) Ann Fisher shared a line she hears again and again from the people she works with.

One member put it simply: "One of the first things that happens when you get Parkinson's disease is the phone stops ringing." Here's why that happens — and what actually helps.

Why Do Parkinson's Support Groups Matter?
Parkinson's disease support groups help people with PD and their care partners feel less isolated, share practical information, and learn from others navigating similar challenges. Research shows social connection can improve mood, motivation, and overall well-being, making support groups an important part of a complete Parkinson's care plan.

Why Isolation Is a Real Risk After a Parkinson's Diagnosis
Parkinson's disease is now the fastest-growing neurological disorder in the world, having overtaken Alzheimer's disease in recent years. Between 1990 and 2015, the number of people living with Parkinson's doubled, and that number keeps climbing. As diagnoses rise, so does the risk of something less visible: isolation. Fisher explained that after a diagnosis, a person's social circle can quietly shrink — friends aren't always sure what to say, or the person with Parkinson's feels less confident reaching out. Left unaddressed, isolation can spiral into loneliness and low mood, which research links to worse outcomes for both physical and emotional well-being.

The Two Biggest Benefits of a Support Group
Support groups offer two things at once. The first is practical: members share real, lived experience — medication names, doctors, and coping strategies not always found in a pamphlet. As one popular saying in the Parkinson's community goes, "If you've met one person with Parkinson's disease, you've met one person with Parkinson's disease," since the condition looks different for everyone.
The second benefit is emotional: the simple realization that you are not alone.

Support Groups Aren't Just for the Person Diagnosed
Parkinson's changes life for care partners too, and caregiving stress can lead to its own kind of isolation. PASWFL offers groups built around this reality, including separate groups for male and female care partners, a Women with Parkinson's group, a general group open to anyone touched by PD, and a couples group for partners who want to attend together.

Building Your Parkinson's Care Team
Fisher encouraged newly diagnosed members to think of support groups as one piece of a larger care team that also includes a neurologist (often a movement disorder specialist), physical and occupational therapists, and a speech therapist — specialties PASWFL can help connect members to.

Beyond Support Groups: Music, Drumming, and Improv
Guest facilitator Margo Scott, LCSW, who has taught improv for people with Parkinson's for eight years, explained that classes like hers and PASWFL's drumming program build connection and cognitive engagement while easing facial rigidity, a common Parkinson's symptom, through playful work with expression and movement.

Keeping Your "Pie" Full
Fisher closed with an image she returns to often: life as a pie. Parkinson's disease may take a growing slice over time, but the rest of the pie — golf, opera, mahjong, dinner with friends — still belongs to you. As Michael J. Fox has said, "I didn't have any choice whether or not I have Parkinson's, but surrounding that non-choice are a million other little choices that I can make."

Questions People Ask
Are Parkinson's support groups only for people with Parkinson's disease? No. Many groups, including PASWFL's, welcome care partners, spouses, and family members, and some are designed specifically for caregivers.

What's the difference between a support group and therapy? A support group is a space for members to share experience and encouragement; it isn't a substitute for individual or couples counseling, though both can be valuable together.

How do I find a Parkinson's support group near me? Local Parkinson's associations typically offer groups by category — care partners, couples, gender-specific, and general — both in person and online. Check a local association's newsletter or call its office.

Can support groups help with Parkinson's-related isolation? Yes. Connecting with others facing similar challenges is one of the most consistently cited ways to counter the isolation that can follow a Parkinson's diagnosis.
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Conclusion
A Parkinson's diagnosis can feel like joining a club no one wants to join, but no one has to navigate it in isolation. Whether through a support group, a care team, or a creative outlet like improv or drumming, connection is one of the most powerful tools for living well with Parkinson's disease.

Why Support Matters
A diagnosis of any form of Parkinson's can feel overwhelming. But with the right support and resources, individuals can maintain independence, quality of life, and emotional well-being.
For resources, referrals, and support in navigating Parkinson's and related conditions, contact the Parkinson's Association of Southwest Florida at www.paswfl.org or call 239-417-3465.

For over 25 years, PASWFL has provided free, high-quality services and programs to individuals and families touched by Parkinson's disease in Southwest Florida. Their goal is simple: help people live well with PD, regardless of where they are in their journey.

Each week, PASWFL offers more than 25 free programs and support groups, including:

• Wellness and fitness classes
• Speech Exercise classes
• Educational seminars
• Support for care partners
• Support groups

There are no fees to become a member, and PASWFL welcomes anyone touched by PD.

Take the First Step Toward Living Well
If you suspect early Parkinson's or have been recently diagnosed, you don't have to face it alone.
👉 Click here to sign up for the PASWFL newsletter
👉 Click here to become a member…it's free and confidential
To learn more, visit www.paswfl.org and discover the power of support, education, and community.