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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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Keeping Love + Faith Alive

After losing 36 to Covid-19

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What started as a “Shelter in Place” check-in with friends Barbara and Daniel Melvin, grew into this article about a family with extreme losses to COVID-19. Barb first told me they had lost 12 family members and friends from COVID-19 in mid-April. By the end of April, the number had grown to 33. The current count is 40 family and friends lost to COVID-19 as of May 18, 2020.

Daniel and Barbara lived in Detroit before relocating to Naples, Florida, in 2001. Barbara has worked in banking for 30 years and is currently a Vice President at First Florida Integrity Bank. Dan is a multi-talented singer, radio personality, and entrepreneur. They are two of the happiest, kindest, giving, and loving people you could be lucky enough to know.

Together, they have worked to give back to their community through philanthropic endeavors, as well as volunteering on numerous nonprofit boards. They celebrate their mutual birthdays, Sept 6 & 10 by holding an annual event called “Party Hearty for Charity,” formerly known as “Party with a Purpose,” their nonprofit organization., They have raised over $90K in the past six years to help support several nonprofit organizations in SouthWest FL.

Barb says, “The coronavirus is real. I first heard about it in March, but like everyone else, we didn’t understand it, and at that time, we didn’t personally know anyone that was sick from it. Then, as time went on, we started to hear about people that we knew who were dying. My husband and I hated to wake up and look at Facebook because it seemed every time we checked someone close to us or someone we knew had died.”

Barbara tells us, some of the churches in Detroit continued to hold services, after the recommendation not to gather in large numbers. The members met to seek comfort in the face of the pandemic. Barbara believes that was crucial for most of the people she knows who were infected and died.

How could one couple know so many people who have passed from COVID-19? They are an extensive close-knit family, descendants of Tom and Etta Rhoades, born slaves. Tom and Etta’s dreams were to keep their descendants together spiritually, in harmony, and in brotherly love. They have honored their ancestors by gathering each year, for 46 years, for a three-day family reunion. Friday is meet and greet (you would need it with over 200 attending). Saturday is picnic time, complete with a softball game between the North and the South. Sunday, everyone goes to a local church, followed by a family dinner. With all those family members together, not an argument or fight ever. Until 2020, when the pandemic hit the family, and they canceled the family reunion.

Barbara shares with us information on a few of those they have lost. “My aunt, Mary Rhoades, died on April 22, 2020, she was 97 years old. She was in good health, and we were praying she made it to 100.” Several of her siblings had achieved that milestone, and she was reasonably healthy for 97 years of age so that expectation was a real one. “Aunt Mary became infected in early April; two weeks later, she was gone. She went to the hospital in Philadelphia for minor surgery, and we believe she was infected there. What hurts the most is she died alone; no family or friends could visit her.”

“Jason Hargrove was a close friend of ours. He was the bus driver who went on Facebook Live to talk about a woman coughing on his bus without covering her mouth. Two weeks later, he was diagnosed with the coronavirus, and he died shortly thereafter. His death was not in vain as the Detroit Department of Transportation made many changes to enhance the safety of their drivers. Jason was a Deacon at my church.”

Barbara continues, “Another close friend of ours was Larry Griffin. He died on April 16. He sang in my husband’s band called “In Full Effect” when they were performing in Detroit. He continued to sing in a new band called “Serieux,” who performed mostly in Detroit but also in Las Vegas. He had a beautiful voice and some great dance moves. He was so healthy until he caught the virus, and, in weeks, he was gone.”

“It spread so much faster in the churches. Many Pastors we knew caught the virus and were gone. They were older and many had health issues, when the virus attacked them they could not fight it off. These 4 Pastors were all a part of the Church of God In Christ (COGIC). Many had large congregations and were still holding services after the call for social distancing. These great men are a true loss for the COGIC community.”

“On April 23, we lost a very dear friend of mine, Lynn Raimey. I called her my sister as her father was the Pastor of my church in Detroit. Her family took me in and treated me like family when I first moved to Detroit and didn’t know anyone. She had many health issues, so when she was infected by the virus, it killed her very quickly.”

“Although we have lost many family, friends, and associates, we know God is good, and he continues to show us favor even through the midst of this storm. Even though we know of many deaths, we also know of many survivors and to that we are grateful. These people are given a second chance so their test can become their testimony. I know of an entire household, The Washington family of Detroit, who are survivors. Pastor Jamonty, his wife Tamela and their daughter Ariel Washington all recovered and are doing well.”

Barb specifically finds strength in the Beatitudes; “Jesus said in Matthew 5:4, Blessed are they that mourn, for they shall be comforted. It is during these tough times of losing loveda ones that I can refer to scripture to give me the comfort I and my family needs. The question is have you ever suffered? Please know that we all have. But I have come to know through leaning on God and his word, he meets me at my very point of need. As believers, the Bible speaks about plagues and famine and death, and its teachings prepare us for what life has to offer. Oftentimes we don’t understand the current situations, but when we look back, we realize this had to happen.”

As of May 5, 2020, there have been over 72,000 deaths in the United States, and over 257,000 deaths Worldwide. It is critical to find strength either within or in a higher power, focus on the positive, and stay connected.

It is GRAM’s honor to recognize this incredible family.

Blessed are they that mourn, for they shall be comforted.


In Memoriam

Family & Friends Lost to Covid-19 (35 as of 5/5/20)

Mary R. – PA

Jason H. – MI

Rachelle Lynn R. – MI

Rev. O’Neil S. – MI

Gerald H. – MI

Curtis H. – MI

Larry G. – MI

Rosalind C. – MI

Rev. Gerald G. – VA

Skylar H. – MI

Rev. David F. – MI 

Laneeka B. – MI

Ejuan W. – MI

Darnielita B. – MI

Bishop Phillip B. – MI

Bishop Robert S. – MI

Bishop Robert H. – MI

Tatia W. – MI

Rev. Lonie J. – MI

Carrie W. – MI

Helena J. – VA

James J. – VA

Robert J. – VA

Annette W. – NY

Helen L. – MD

Walter H. – DC

Carol T. – DE

Benjamin T. – DC

William B. – KY

Daniel R. – TX

Karen S. – NC

Denise B. – NC

Doris M. – OH

Trina D. – MI

Earl T. – VA

Nathaniel S. – MI

Lonnie L. – MI

Nathaniel S. Sr. – MI

Nathaniel S. Jr. – MI

Angel R. – IL

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Americans for Safe Access + Covid

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Americans for Safe Access (ASA) is a 501(c)(3) nonprofit with the mission of ensuring safe and legal access to cannabis for therapeutic use and research. The organization began in 2002 and has been helping educate people, change laws, and get more research out there about the therapeutic benefits of medical cannabis. “We also care about safety, and we want to make sure patients are using cannabis safely and legally throughout the United States,” explains Debbie Churgai, Interim Director for ASA. 

GRAM sat down with Churgai to discuss how they are handling COVID-19 for patients throughout the U.S. She tells us, “When it first started, patients were really concerned about there being a lack of access to their medicine. So, one of the first things we did was host a stakeholders call. We contacted a bunch of people: patients, industry professionals, medical professionals, legal professionals, and within two hours, 15-20 people were on the phone strategizing. From that phone call, we then created a letter that we sent to Governors, medical cannabis commissions, and health departments urging them to keep medical cannabis businesses as essential, not just the dispensary but also cultivation and manufacturers so that there was no stop in production or supply chain.”

“It also meant, we needed to make sure patients were receiving safe products, that employees were also being kept safe. Then we started thinking about delivery for states that did not have that yet, and the states that did not yet offer telehealth – we wanted to encourage the changing of regulations at least temporarily to help accommodate the patients. As well as things like tax relief and adding additional caregivers, it wasn’t just about keeping businesses open, it was about making sure that patients were being protected and that products and employees were safe.”

In Colorado, we have seen dispensaries adapt to this crisis by adding hand sanitizer at checkout counters, wearing gloves and masks and only allowing one person in the purchasing area at a time. 33 states now have some sort of medical cannabis program.

According to news around the U.S., cannabis is now considered essential. But it wasn’t that way at first. According to Churgai, “Some states seemed to hold back on making any temporary changes in regulations. Within two weeks though, all the other states began implementing the suggestions we recommended.” 

We needed to make sure patients were receiving safe products, that employees were also being kept safe.

“California has reached out more than any other state, I believe that is due to the fact that every single county there is different, from its tax structure to its implementation of the laws. Massachusetts was high with the questions as well because of them deciding to close down their recreational dispensaries for adult use. Now there is an influx of new patients. Now there are new concerns.” 

Each state has a different set of rules and regulations surrounding their medical cannabis programs. “We wanted businesses to all have the same information so we offered a live training on health and safety during COVID-19, that can now be purchased as part of our Patient Focused Certification.1 In the training we provide information such as how to properly put on and take off gloves, how to properly touch things, how to properly sanitize surfaces, and more to make sure that businesses are being as safe as possible during this time.”

“When we realized that we helped assist in making these services essential, we wanted to learn how they actually worked for patients throughout the U.S. We wanted to understand, what do they still need during this time? Are their needs being met as patients? Would they like to see services like telehealth and delivery continue after COVID-19? We realize that we really need to streamline our advocacy efforts at this time, and we felt the survey would be a great way to learn what we can do for patients out there,” Churgai explains.


Help ASA discover what patients need around the United States.

Take the survey here: https://www.safeaccessnow.org/covid-19_survey


COVID-19 Patient Experience Survey asks questions like:

• How do you obtain cannabis?
• Do you feel you are at risk for covid and why?
• Rate your state’s response to the covid crisis.
• How should your state be assisting you more?

Patients are at greater risk for a variety of reasons so ASA is working to ensure that the needs of patients are taken into account. So, in addition to creating this survey, Americans for Safe Access has also created a page on their website dedicated to resources for patients seeking information surrounding COVID-19.2

Churgai says, “Cannabis is real medicine. I have been in this industry for so long, and I am a realist, and I know things will not change overnight. But I do feel the pandemic has highlighted the need for this medicine to be seen as real medicine. At ASA, patients are our priority, we are unbiased, we are not paid to play, and patients will always be our top priority.” You can learn all about Americans for Safe Access by visiting their website: https://www.safeaccessnow.org/


References:
1. http://www.patientfocusedcertification/training/a-la-carte-trainings/
2. https://www.safeaccessnow.org/covid-19

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Trends in Endocrinology + Metabolism

The quest for a healthy
Endo-Cannabinoid System (ECS)
Emphasis on immunoregulation

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The ECS is a disperse system, extending throughout the body; it is in constant interplay with all other organ systems promoting homeostasis in almost every aspect. Despite that, the ECS is still neglected and not included in the curricula of medical schools. For this reason a few introductory notes are in order (Battista et al, 2012). The ECS is the regulator of cognition, mood, nociception, energy metabolism, oxidation, inflammatory processes and a disease modifier as well (Tantimonaco et al, 2014).

The ECS consists of receptors, ligands to these receptors and enzymes that synthesize and degrade these ligands. The number of known endocannabinoid receptors is still growing to more that 55; the two most outstanding receptors are CB1R, mainly distributed throughout the nervous system and responsible for the psychoactivity of cannabis, and CB2R, mainly distributed on immune cells, even those “disguised” as specialized cells within other organs. Other receptors include TRPVx, GPR55, PPaRs etc; all these receptors form dimers between them as well as heterodimers with other types of receptors, like opioid, dopamine, serotonin, adenosine, catecholamine receptors and many others, thereby promoting a universal regulatory interplay throughout the body. The ligands to these receptors are the endocannabinoids (ECs): lipids of the eicosanoid family, derivatives of arachidonic acid (AA); the latter abounds in cell membranes; five of these are well characterized to date, but two are well studied: Anandamide (AEA) and 2-Arachidonoyl-Glycerole (2AG). ECs in the nervous system act in negative feedback loops, more or less like neurotransmitters, but, unlike them, they are synthesized and degraded on demand, and not stored in micro-vesicles. Several formerly unrelated morbid conditions are now recognized as ECS deficiencies, including, among many, migraine, autism, fibromyalgia, irritable bowel syndrome, etc (Russo, 2016).

The endocannabinoid system is involved in immunoregulation through the CB2 receptor and through receptor independent biochemical pathways. The mechanisms of immunoregulation by ECs include modulation of immune response in different cell types, effect on cytokine network and induction of immunoapoptosis; in brief, ECs down-regulate the innate and adaptive immune response in most, but not all, instances. Manipulation of endocannabinoids in vivo may constitute a novel treatment modality against inflammatory disorders.

It is obvious that the health of the ECS is of great importance in many ways, including the facing of a viral infection like COVID-19. A healthy ECS depends on many factors, most importantly from proper nutrition (McPartland et al, 2014).

Dietary ω3 fatty acids seem to act as homeostatic regulators of the ECS, acting in opposite directions if consumed by obese or non-obese individuals. Little change in EC levels are seen in individuals with normal weight, not fed a high ω6 diet.

Dietary ω6 fatty acids are also essential, but should be in a balance to ω3s; suggested balance is ω3:ω6=1:1 to 1:3 for proper ECS signaling and prevention of peroxidation in general. Arachidonic acid is an essential component of the ω6 fatty acids.

Probiotics and prebiotics play a significant part in ECS health, but, for a bizarre reason, they are generally not mentioned: They up-regulate CB2Rs residing on immune cells of the gut; they also modulate CB1Rs, depending on conditions, for instance, they down-regulate CB1Rs in obese individuals and help them gain less or no fat.

Some flavonoids, like kaempferol, genistein, epigallocatechine gallate, and curcumin enhance the ECS; same happens with some anthocyanidins, like cyanidin and delphinidin, although with a different mechanism.

Phthalates, pesticides, additives to pesticides like piperonyl butoxide act as ECS disruptors, meaning that consuming organic food may be a sound protective measure, along with intake of detoxifiers, in case of health problems consistent with ECS deficiency not otherwise explained.

Chronic stress impairs the ECS by decreasing levels of AEA and 2AG, and possibly through changes in CB1R expression too. Stress management may reverse the effects of chronic stress on ECS signaling. Anecdotal reports and common experience suggest that techniques such as meditation, yoga, deep breathing exercises and practicing of sex as well, exhibit mild cannabimimetic effects, thereby balancing the system.

Exercise is also an ECS regulator: Long-term exercise leads to sustained elevations of ECs, and predictable CB1R down-regulation.

Chronic alcohol consumption and binge drinking likely desensitize or down-regulate CB1R and impair EC signaling. Alcohol is not compatible with a healthy ECS.

Nicotine is an ECS deregulator: It induces EC production in some areas of the brain, while decreasing them in others. It should be avoided too.

Caffeine, acutely administered, potentiates CB1R-mediated effects through antagonizing adenosine at the A1 receptor (AA1R). At the undisturbed state, AA1Rs tonically inhibit CB1R activity; Caffeine antagonism on AA1Rs sets CB1Rs free of inhibition, thereby enhancing ECS function, for example by letting 2AG activate CB1Rs. During chronic administration of caffeine, the effects are blurred by individual differences in adaptation. In general, CB1Rs are down-regulated.

Chocolate: Cocoa contains sm-all amounts of at least three N-acyl-ethanolamines with cannabimimetic activity, expressed either directly by activating cannabinoid receptors, or indirectly, by increasing AEA levels (di Tomaso et al, 1996).


Selected Bibliography:

Battista et al, 2012: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3303140/

Tantimonacco et al, 2014: https://pubmed.ncbi.nlm.nih.gov/24526057/

(Russo, 2016): https://pubmed.ncbi.nlm.nih.gov/28861491/

(McPartland et al, 2014): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3951193/

(di Tomaso et al, 1996): https://pubmed.ncbi.nlm.nih.gov/8751435/

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