The Parkinson Association of SWFL
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.
Quality + Education + Cannabis
GRAM spoke with Josh Crossney, the founder of Cannabis Science Conference, one of the leading cannabis conferences in the U.S. brings together medical, analytical science, and cultivation experts. More on that in a minute.
A career in staffing and recruiting for some of the biggest biological labs across the U.S. gave Josh an in-depth understanding of the importance of quality control and testing. That is what drove him into the medical cannabis industry in 2014. “It really was kind of alarming to me that at the time there were no requirements or quality control testing for cannabis.”
“I connected with some people who were using cannabis as medicine out in California and a couple people who were treating children with cannabis,” he says. “Everything, just about, that comes in contact with humans—from food to beauty products to even water and wastewater—has quality control standards or testing,” he says.
A passion for changing that was one of the things that drew Josh into the industry. Educating people about medical cannabis was another. “I realized there wasn’t a lot—really any—platforms at the time, that were really catering and creating a space for the world’s leading researchers and medical professionals and cultivation experts to come together and share their information with other like-minded people,” he says. In October 2016, Josh launched the first Cannabis Science Convention in Portland, Oregon.
It really was kind of alarming to me that at the time there were no requirements or quality control testing for cannabis.
That first show drew about 800 attendees and 75 vendors. By 2019 the event was pulling in close to 3,500 people and almost 200 vendors. Last year, he launched the inaugural Cannabis Science Convention East at the Baltimore Convention Center in Maryland.
“It really was a full circle moment for me when we were able to say ‘Hey, it’s been a few years. The East Coast has really developed when you look at states like Maryland, New Jersey, Pennsylvania, Delaware, and New York that have implemented medical cannabis programs since the time we launched the (Oregon) show.’” The move paid off, attracting over 2,000 attendees and about 110 vendors.
Josh is a voice in the cannabis industry for the LGBTQ community, and he regularly speaks about the importance of diversity and inclusion. “More so than most industries that I’ve been a part of, the cannabis industry, and the folks and the colleagues I’ve worked with are very accepting and open to all types of people,” Josh says.
He states that the cannabis community and LGBTQ community might have more in common than you would think. “A lot of people don’t realize how many intersections there are between the LGBTQ community and the struggle that we went through in the U.S. and globally, also with the cannabis community. These are both two communities that have been unfairly marginalized and stigmatized by society.”
Josh said that both are human rights issues that have gained traction on a state-by-state basis. He also pointed out that when California implemented medical cannabis in 1996, it was “largely due to the advocacy, leaders, and pioneers who were pushing for this as an option for the HIV and AIDS communities.”
“There are a lot of crossovers that people don’t realize. Cannabis has been used and accepted as a medicine in society for far, far longer than it has been stigmatized as one.”
A serious car accident in the winter of 2009 triggered Josh’s firsthand experience using cannabis as medicine. Returning home during a snowstorm from a sleigh-riding excursion, the car he was riding in crashed into the back of a state snowplow.
More than a decade later, he still suffers from back and shoulder pain as a result. “I use cannabis as an alternative to the opiates that everyone gets prescribed when you have injuries like that,” he said. It also helps him with PTSD from the accident. “As a passenger, it was very intense. For me, it can be challenging to be a passenger in cars at times. Cannabis really does help me deal with that.”
Josh also finds relief for his anxiety. “There’s not a lot of pharmaceutical options other than benzos, which really are just as bad as opiates; they really turn you into a shell of yourself. So I just found that cannabis, for me, was a much better, safer alternative that actually worked a lot better than prescription drugs.”
Knowing firsthand the benefits, Josh has big goals “to educate the masses and let people know this is an option.” He has his own Maryland-based 501(c)3 non-profit called jCanna—focused on advancing cannabis science and specifically cannabis quality control testing and extraction processes and standards. “Everything that I do, everything that I touch in this industry really is, at the core, trying to drive more normalization of this plant, acceptance of this plant.”
“We’re having to dig out of 50 plus years of misinformation and propaganda. It’s not a new conversation. Prohibition and reefer madness was really something that was based on racism and greed and the need and want to monopolize the American industry, like pharmaceutical and paper. A lot of people don’t realize the first draft of the Constitution was drawn up on hemp paper.”
However, Josh doesn’t see cannabis advocacy as a blanket label and acknowledges people disagree. “I’m definitely all for adult use and recreational use, and this being legalized and normalized federally,” he said. “But I also am a major proponent of medical, and I would hate to see the government say, ‘Well, we’re gonna go ahead and legalize this for recreational use, but we’re not gonna call this a medicine.’
“If that was the case and this was regulated like alcohol, how would the 10-month-old babies, the 2-year-old children, the people who are using this as a medicine, how would they have access to this if it was regulated like alcohol, and it was a 21-or-over situation without any option for them? Yes, legalizing and normalizing this plant federally but also maintaining the medical term, and that this is a medicine.”
We really feel that knowledge is power and empowered patients can make the best decisions about their cannabis care.
As a board member of the California based CannaKids, Josh cares deeply about pediatric cannabis use. “If this is legal in your state for an adult to use a medical condition, I think that it should not be any more stigmatized for a pediatric patient going through the same condition to have this as an option.”
This brings him back to the importance of quality control and testing in the cannabis industry. “If you’re treating a sick pediatric cancer patient who’s going through chemo and radiation with a highly compromised immune system, contaminated cannabis with mold, heavy metals, or solvents can really negatively affect their health.” It’s not just about contamination, but knowing exactly what is in the medicine and how strong it is. “That is important when you are talking about trying to target and treat conditions. We just want this natural plant to be as natural as possible” he says.
In fact, Josh has a quality control dream. “I would love to see this standardized and have quality control required and standardized all over the country and get it to a point where you can send a cannabis sample to five different labs and get the same result. The problem right now is if you sent a cannabis sample to five different labs, there’s not standardization. They’re using different types of instrumentation, different processes. Any of these factors can change the results of your certificate of quality.”
Josh is constantly busy travelling, speaking, and expanding the Cannabis Science Convention.
“We’re continuing to grow the shows. We’re on the East Coast and the West Coast. We have been dabbling with the idea of a Midwest show at some point. We’re also really strongly looking at international markets. We’d love to, potentially, do a show in Germany where cannabis is just starting to develop.”
“This year, one of the new things is in addition to our analytical science, medical cannabis, and cultivations tracks, we’ve also launched a whole 2-day hemp/CBD track.”
Adding the hemp/CBD track is just one way Josh is continuing to educate medical professionals and patients. He is also involving the academic community by shining a light on their contributions to the cannabis science through developments in the curriculum at Johns Hopkins, Rutgers, and Northern Michigan University, and the University of Maryland School of Pharmacy.
“We really feel that knowledge is power and empowered patients can make the best decisions about their cannabis care.”
Dr. Lisa Roark
Physician Shares about MS Diagnosis
Missouri officially legalized medical cannabis in November 2018, with the passing of Amendment 2. The state first started accepting applications from qualifying patients and caregivers for medical cannabis cards on June 28th, 2019. Since then, the state’s list of registered medical patients has quickly grown into the tens of thousands, with the approval of qualified recommending physicians, like Missouri’s own, Dr. Lisa Roark. Her clinic, Roark Family Medicine, was the first in the state to offer telehealth options, where patients could meet with her office remotely. Because of this, Lisa quickly became one of Missouri’s leading recommending physicians.
“We were the first clinic to offer telehealth in Missouri, so we became very busy, very fast. I already had a full patient panel, so I had to do a lot of scheduling adjustments, work more hours, and adjust as needed.” It was during this exciting time of growth and expansion when Lisa was officially diagnosed with multiple sclerosis, which she first shared publicly on social media in October of last year. “For my birthday, I got a diagnosis. I have multiple sclerosis. I’ll follow up at Barnes next week to discuss options to help with my vision. Sucky birthday present, but better than not knowing.”
She may have MS, but she’s not letting it stop her, and she’s grateful for the incredible support she continues to receive. Lisa is a local doctor, with local values. Raised in Exeter, MO, she graduated from Exeter High School before moving to Kansas City, MO, where she completed her medical training at the University of Missouri-Kansas City School of Medicine. Afterwards, she completed her medical residency at Cox Family Medicine Residency in Springfield, MO, where she trained in all areas of primary care, including obstetrics, pediatrics, chronic illness management, women’s health, geriatrics, and many outpatient procedures.
Don’t buy into the ‘there isn’t enough research’ crap.
Now she lives on a small farm with her husband and four children in Cassville, MO, where Lisa tells us they “Enjoy spending time outside tending to the animals, gardening, hunting, playing and making memories. We are fortunate to have a large number of family members in the Cassville area.” This is also where her practice is located, which she loves for many reasons. “I love taking care of entire families, from babies to great-grandparents. It is very fulfilling to not just know a single patient, but to also understand their home and family dynamics. Family practice allows me to know my patient as a person, not just a body. I also love that I actually have time for my family and community. I worked several years for a large health system, got paid well, but missed my kid’s parties at school. I didn’t get to take them to school or pick them up, and had absolutely no community involvement. Now my office is one block from the school. I can walk up the street and have lunch with my kids, or they can even walk to the clinic after school. I also enjoy how much time I get to spend with my patients. As a Direct Primary Care practice, I have no billing/insurance/coding and can spend significantly more time with my patients.”
Lisa was inspired to become a physician by her role as a middle child and problem solver in her family. “This led me to medicine in general. I view most medical cases as a jigsaw puzzle, and I just have to figure out how to put it back together.” This passion for helping solve medical problems for her patients lead to her becoming a recommending physician in Missouri’s new medical program. “Prior to Amendment 2 making it on the ballot in Missouri, I had a patient ask me to help treat her child’s seizure disorder with CBD. I had to admit, I had absolutely no knowledge regarding cannabis or hemp, so I agreed to do research. The more I read, the more I realized physicians have been duped. I found significant research showing the medical benefits of cannabis and many therapeutic uses for this safe, effective plant. The more I learned, the more I wanted to know. I attended several conferences, met Dr. Sue Sisley on several occasions, did medical education credits related to cannabis, and joined several physician groups who have helped educate me, so that I can help educate patients. I became a recommending physician because I believe that all people should have the right to utilize cannabis as medicine.”
“The process of choosing to do physician certifications was easy, the implementation not so much. With this being a new program in Missouri, I’ve had to spend more time educating patients than doing the actual certification. I try to educate them regarding the law, medical uses, as well as the process of getting their medical card. There have been A LOT of changes in our clinic in the last year.”
Lisa’s advice for other physicians in states who have yet to legalize, and those who now find themselves in newly legalized states is, “Get educated. Don’t accept what you’ve been taught or told to influence your opinion. Don’t buy into the ‘there isn’t enough research’ crap. There is a lot of research (much from Israel), you just have to read it.” She tells medical students interested in medical cannabis to “Talk to patients. Learn how this plant has helped people for millions of years. Learn everything you can about it, and don’t forget to ask why. Why was it taken away from patients in the 1930’s? Why was it replaced with expensive, dangerous, opiate medications? And why can’t patients pick it up in a pharmacy?”
As far as her MS goes, she was reluctant to share any updates since first making the announcement last year. “Mostly because I didn’t have anything nice to say. I was formally diagnosed with multiple sclerosis in October, 2019. Since then, I’ve been on Tecfidera (crazy expensive MS med) with the hopes of keeping my disease in remission. Unfortunately, I haven’t seen any slowing in the progression (just fantastic side effects like hives, hot flashes, and heat intolerance). I’ve had steroid shots in my eye sockets, also in my eyeball, IV steroids, by mouth steroids for Trigeminal neuralgia (crazy painful). Physical therapy for weakness in my left leg, a muscle stimulator to try to keep my muscles working. I’ve only been working part time and sleeping excessively. I’ve cut out wheat, dairy, sugar and go to yoga as much as possible. I’ve been exhausted constantly, depressed, tearful and have felt hopeless,” she bravely shared, “for accountability. I choose to no longer be miserable or fearful. I have scheduled a stem cell transplant for March in Mexico. I will go through chemo, lose my hair, and Griff will have to go with me to care for me the entire month. I am hopeful this will put this monster in remission, and I will again be a functional mother, doctor, and wife. I am thankful to have a supportive family to help care for my babies, coworkers who will take care of my patients for the month, and a husband that will hold me up when I’m ready to fall.”
In the meantime, she is including cannabis as part of her treatment plan. “I am currently using cannabis as medicine. I make a cannabis smoothie for breakfast every morning, (no THC, so no concerns about working under the influence) and then treat myself before bed. It has been immensely helpful with my pain (especially trigeminal neuralgia), muscle spasms, nausea, insomnia and anxiety. It hasn’t cured my MS but it has given me reprieve.”
In her plan to help patients by becoming a recommending physician, Lisa never imagined also becoming a patient. “I didn’t plan to get my card, due to the risk of losing my medical license, until my MS diagnosis. There isn’t really a law that physicians can’t use cannabis in Missouri. It’s really up to the state licensing board. I took a huge risk, got my card, and have been very verbal about it. I believe it takes risks, as well as people questioning the system, to make change.”
GRAM couldn’t agree more with taking risks and asking tough questions to change the system. We also believe in the power of sharing personal stories to normalize cannabis and those who consume it, and we want to give a special thank you to Dr. Lisa Roark for choosing to share her powerful story with us. From everyone at GRAM, we wish you the quickest and most healing journey.
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