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The Parkinson Association of SWFL

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Parkinson’s disease is one of the fastest-acting neurodegenerative diseases in the human population, yet the condition is largely avoided in conversation. Many people are afraid of the disease and the symptoms it presents, which results in those with Parkinson’s eventually isolating themselves from the world. The Parkinson Association of Southwest Florida has been working to overcome that fear for more than 20 years by bringing discussions about the disease into the open. Not only that, but they also offer a support group specifically focused on medical cannabis and its impact on Parkinson’s patients. I had the chance to speak with members of the Association’s staff and learn more about who they are, what they’re doing, how they’re handling medical cannabis, and the impact that their efforts are having on patients and the community at large.  

Who is the Parkinson Association of Southwest Florida?

The Parkinson Association of Southwest Florida was started in Naples, Florida in 1997 by two retired school teachers. For much of the Association’s early years, it was a primarily grassroots, volunteer-driven effort, run from their living room. There wasn’t a formal structure or business organization, it was simply volunteers coming together to help patients in the community. The Association has since formalized as a nonprofit organization, but volunteers remain their heartbeat. It is entirely self-funded through the support of the residents of Southwest Florida and receives no government or national organization funding. They are supported by a variety of fundraisers that include the organization’s Step Up For Parkinson’s Walk (Previously Heart and Sole Walk) as well as celebrity visits from people such as Jimmy Choi of American Ninja Warrior and former White House Press Secretary Sarah Huckabee Sanders. 

It’s one of those diseases that is very much misunderstood, and a lot of people become isolated with the disease.

According to Linda Goldfield, Executive Director of the Parkinson Association of Southwest Florida, this allows the Association to concentrate its efforts locally, with more than 80 cents of every dollar going towards programming for patients, and 100% of all funds remaining local, supporting the communities of Southwest Florida. “The Parkinson Association of Southwest Florida provides programs that help people live well on a daily basis with Parkinson’s disease, from diagnosis through the progression of the disease … most of the national organizations are fundraising for a cure, and sadly there is no cure in sight,” remarks Linda. 

What does the Association do for patients?

As mentioned, they focus primarily on providing educational classes and programming that supports those living with Parkinson’s, their caregivers, and family members. They offer groups for patients ranging in symptom severity from early onset diagnosis all the way through stage 4 of the disease. “A lot of people don’t understand Parkinson’s, and they feel as though it is shameful to say that you have this disease, but it’s really not. It’s one of those diseases that is very much misunderstood, and a lot of people become isolated with the disease,” explains Tricia Leite, Outreach Volunteer for the Association.

The classes include educational groups focused on sharing research, treatments, insight, and anecdotal experiences. There are also movement groups to help patients stay as active as their bodies will allow, and support groups that allow patients to network with one another, speaking openly about their success, trials, and treatments, and finding support in a community that understands what they are going through. Additionally, three years ago, the Association joined the Struthers Parkinson’s Care Network to help train facilities and home healthcare providers in proper Parkinson’s care, expanding their efforts to create a Parkinson’s-friendly community. 

Why do they do it?

The Association was founded by two people who experience what thousands of others experience each year: someone close to them was diagnosed with Parkinson’s disease.  The desire to fix a lack of understanding of what the disease is and how it impacts daily life drove them to create a grassroots movement that has evolved into a professionally led organization. 

As more people affected by the disease move to Southwest Florida, the need for services increases. “In the last three years, we have tripled the number of programming options to meet the growing needs of the community,” explains Linda, who has worked to ensure that access is not limited by a lack of funds or inability to travel to a specific location. “Unlike many Parkinson’s Associations, our programming is free. We never want money to be a barrier to access our programming. We take our programming into the community rather than hosting it in one central location. As the disease progresses, the burden falls on the caregiver to shuttle their loved one to and from programming, so we take the programming to them to make it less of a burden for them. In our community, you can find your programming within ten minutes, and we offer programming six days a week.” 

“Groups help patients: when you have someone that you know has the same ailments as you and you can speak freely about those things and know you aren’t going to be judged for it, that’s a good feeling,”  says Tricia. The Association forums create open discussions that help patients accept, accommodate, and communicate about their conditions as well as offering them a second family. “When you can see a smile on somebody’s face just because you actually talked to them … It has become like a second family. I see them at the grocery store and they come up and give me hugs.”

“These programming options have not gone unnoticed, even being cited by some as the reason for moving to Naples from other parts of the country. People have been moving here specifically based upon the support that they have here and the support system that we give them. We literally have had people leave reviews on realtor.com about us and why they have chosen to live here in Naples,” says Tricia. 

The Association & Cannabis

A medical cannabis support group is offered for PD patients who are registered in Florida’s medical marijuana registry. There is a cannabis industry professional present at each session. The Association recognizes the growing body of research surrounding the efficacy of cannabis use in the treatment of symptom management for those living with Parkinson’s. “When it first became legal in Florida, there was significant interest, and last year we did a four- part series on medical cannabis … for some in the medical community, they are more conservative and the jury is still out, but we hear from our members who have used it that they have had good results,” says Linda. 

Advice on Cannabis for Parkinsons

Linda advises members that they should speak with a medical professional before making the choice to use cannabis in treatment. “We first recommend that you consult with your neurologist or movement disorder specialist for their input on using medical cannabis.” If all parties feel cannabis could be an effective option, patients can be added to the registry and can then come to the Association’s cannabis meetings and learn what other patients in their community are using and how well it works.  

How to learn more about the Parkinson Association of Southwest Florida

For those patients or relatives and friends of patients looking to get more information on the Association’s programming schedule and volunteer opportunities, you can learn more at parkinsonassociationswfl.org or by visiting their location in Naples. The staff encourages patients, family, and friends to stop by if you’re in town, even if it’s only for a few days; you never know who you might meet, what connections you might make, and what you might learn.

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