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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Turmeric is a root vegetable commonly used as a spice in various Indian and other cultures’ dishes. Turmeric is in the zingiberaceae family, as is ginger. The turmeric plant is native to the southeastern region of Asia and commonly harvested in places like India, Sri Lanka, China, Indonesia, and Taiwan. It is responsible for curry’s signature orange color, and its vibrant pigment will give essentially any meal an orange hue.
Turmeric contains a substance called curcumin, and curcumin has been shown through research to offer anti-inflammatory and other therapeutic benefits. The scientific name for the turmeric plant is Curcuma Longa, and likely where the name curcumin comes from. When people are talking about the health benefits of turmeric, they are referencing curcumin so you may hear the two names used interchangeably. Curcumin is part of a group called curcuminoids, with curcumin being the most active and the most beneficial for health. Flavonoids are another substance found in various plants and give these plants their color. Curcumin is a flavonoid and is responsible for providing that bright orange color to turmeric. In addition to providing aesthetic value, flavonoids are also strong antioxidants with anti-inflammatory and immune-boosting properties.
The Journal of Biological Chemistry published a study done by Sanjaya Singh and Bharat B. Aggarwal of the Cytokine Research Laboratory at the world-renowned cancer hospital, M.D. Anderson. The study found that curcumin suppressed NF-κB, a protein complex responsible for controlling inflammatory responses. In other words, turmeric shuts off the body’s inflammatory response. Anti-inflammatories can be beneficial for many different ailments, including chronic pain and digestive disorders. A lot of CBD companies even put curcumin in their products because of its benefits. It is believed to be a synergistic pair with complementary therapeutic properties. The thought is that the two plant medicines are powerful on their own; as a combination, they can deliver even more anti-inflammatory and medicinal benefits.
Many people simply add turmeric to their dishes as a way to easily incorporate it into their daily routine. It is pretty mild in flavor and can be added to many dishes without changing the overall taste too drastically. Some say that turmeric isn’t strong enough on its own to receive the anti-inflammatory properties that curcumin provides, and therefore recommend a curcumin supplement. Research varies on that, so in the end it is just up to personal preference and your doctor’s approval. Curcumin supplements come most available in capsules. Pregnant women can safely use turmeric as an addition to their food, but should avoid taking high-dosage supplements. Those who are interested in supplementing with curcumin products should talk with their doctor first.
M.D. Anderson Cancer Center did another study in 2007 exploring curcumin for cancer treatment. The study found that curcumin inhibits ovarian cancer growth and angiogenesis (the development of new blood vessels). It does this by targeting and manipulating the NF-κB pathway, the same protein complex responsible for controlling inflammatory response. According to a report published by the National Center for Biotechnology Information, “The nuclear factor NF-κB pathway has long been considered a prototypical proinflammatory signaling pathway, largely based on the role of NF-κB in the expression of proinflammatory genes including cytokines, chemokines, and adhesion molecules.”
The trend with curcumin seems to be it’s ability to control inflammatory responses in the body. It does this by multiple pathways, but a commonly researched one is the NF-κB protein complex. Because this pathway is able to be manipulated by curcumin to encourage anti-inflammatory expressions, its potential for successfully treating various ailments is there.
Psilocybin + Magic Mushrooms
When many think of plant medicine, specifically those plants with psychoactive effects, they think of “magic mushrooms,” or fungi containing psilocybin and psilocin that can cause hallucinations depending on the dosage consumed. In many states, there are active efforts to decriminalize these otherwise scheduled substances, lowering penalties for their use and possession. But what value do psilocybin-containing mushrooms offer? New research suggests a range of therapeutic and psychological value ranging from the treatment of substance abuse to anxiety and depression management.
What are Magic Mushrooms?
Magic Mushroom use dates back to 10,000 BCE and references continue throughout the era. Their modern popularity began when the term “magic mushroom” was coined by two etnomycologists who learned of a Harvard study on local doctors in Mexico using these substances, noting the substance’s ability to affect the nervous system. These findings were eventually published in Life magazine in 1957, and the term became the universal reference for psychoactive fungi and truffles, specifically those containing high concentrations of psilocybin and psilocin.
Psilocybin & Psilocin: The “Magic” in Magic Mushrooms
Psilocybin and psilocin are part of a family of psychedelic compounds found in magic mushrooms. Psilocin is pharmacologically active, and psilocybin is converted into psilocin when consumed or activated. Similar in structure to serotonin, there are more than 50 species of mushrooms and a variety of truffles that produce both the precursor, psilocybin, and the psychoactive compound, psilocin. Unlike LSD, magic mushrooms do not affect dopamine receptors, solely targeting serotonin sites.
How are Magic Mushrooms used?
Magic mushrooms are often used for recreational, therapeutic and medicinal reasons. “Effects range from mild feelings of relaxation, giddiness, euphoria, visual enhancement (seeing colors brighter), visual disturbances (moving surfaces, waves), to delusions, altered perception of real events, images and faces, or real hallucinations.” Recreationally, this is often known as “tripping.” As an alternative health option, these fungi are being used for anxiety, depression, PTSD, and trauma, as well as psychological disorders such as substance abuse disorders, and science is beginning to back the potential for these applications.
Research on Mushrooms
Evaluations of currently available scientific studies suggest a growing number of therapeutic benefits and treatment options. “In the past few years, a growing number of studies using human volunteers have begun to explore the possible therapeutic benefits of drugs such as psilocybin…looking at psilocybin and other hallucinogens to treat a number of otherwise intractable psychiatric disorders, including chronic depression, post-traumatic stress disorder, and drug or alcohol dependency.”
Magic mushrooms have been respected as a “safe & natural healing sacrament for millennia throughout Mexico, Central America and the world,” and are known to be beneficial for depression, recidivism (the tendency to repeat past transgressions), and encourages openness, creativity, as well as personal and spiritual growth. UCLA and NYC have done studies on the applications of magic mushrooms in the treatment of end-of-life anxiety and other studies have backed up the use of psilocybin and psilocin in the treatment of substance use disorders, depression (especially in cases of terminal conditions like cancer as well as treatment-resistant depression), and reducing depression and anxiety overall.
Best way for people to consume?
When it comes to the consumption of mushrooms, advice on dosage is about as specific as it was with cannabis under prohibition. Consumers must purchase on the black market and are subject to whatever may be available.
“Recreational doses range from 1–5 grams of dry mushrooms depending on the species and individual strength of the specimens… After ingestion, the psilocybin is enzymatically converted to psilocin. Absorbed from the gastro-intestinal tract, hallucinogenic effects usually occur within 30 minutes of ingestion with a duration of effect of 4–6 hours.”
My recommendation as someone who has used magic mushrooms both for recreational and therapeutic purposes, is to grind the mushrooms into a fine powder and either encapsulate them in small increments and/or combine with lemon juice. Capsules will allow you to titrate your dosage as needed with a recognizable increment, while lemon juice will expedite onset time.
The Legality of Magic Mushrooms
In the United States, psilocybin is a Schedule I controlled substance, with no accepted medicinal value and a high potential for abuse. In contrast, the Drug Policy Alliance states that “Physically, psilocybin mushrooms are considered to be one of the least toxic drugs known.” With that being said, local efforts such as Decriminalize Nature – Oakland and Decriminalize Denver have pushed for and successfully passed initiatives and legislation to reduce penalties and make enforcement a low priority, as was done in the early days of cannabis activism. This has spurred multiple local and international efforts to “Decriminalize Nature,” efforts that we learn more about in this month’s feature.
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