Faces of Parkinson's - "Don't Worry, Be Happy"

Ned & Marianne Popkins, Loyalsock Creek, Laporte, Pa., June 2014.jpeg

Meet Marianne McClain Popkins! She and her husband, Ned, are high school sweethearts from Connecticut who have been happily married for 39 years. They’ve lived in Orlando since 1984, where they raised three sons: Taylor (34), John (31) and Duncan (23). Marianne, who majored in art history and minored in history in college, worked at Yale University in the slide-and-photograph collection and at the Wadsworth Athenaeum in Hartford (the nation’s oldest public art museum) in the art-education department – until Ned, a career journalist, dragged her off to Central Florida, where he worked for 29 years at the Orlando Sentinel as an assignment editor and newsroom manager.

Marianne fell into the child-care business upon arriving in Orlando; she started as a part-time “toddler teacher” but was soon managing three day-care centers. When her bosses left to start a private school in Maitland (the Kenworthy School, now Lake Forrest Prep), she served there for almost a decade as director of family services. But she returned to her first love, art and history, when she was hired in 1999 as the first executive director of the Winter Park Historical Association and Museum. Over the course of a decade, she helped organize more than a dozen exhibitions, produced monthly membership programs, and managed both an extensive archives and the museum inside the Winter Park Farmers Market. She switched gears again in 2009, opening an adult day care center for people with dementia in College Park for Share the Care, a local nonprofit that supports home-health caregivers.

Ironically, it was at Share the Care that Marianne first noticed the seemingly unrelated symptoms that eventually led to her diagnosis of Parkinson’s in April 2013. By then, she had had to retire from Share the Care for shoulder surgery; now, four years later, she is largely dependent on her husband for everyday activities and getting around – after a problematical surgical trial at the University of Florida revealed that she probably had an “atypical Parkinsonism” called Multiple System Atrophy. So Ned, who once attended Share the Care events as the spouse of a center director, now attends them as a caregiver who receives respite assistance from the agency.

Marianne riding her Catrike three-wheel recumbent trike, Seminole Wekiva Trail, April 2014.jpeg

Marianne and Ned, always very active outdoors, have tried to remain that way even  with Parkinson’s. Marianne, who played varsity field hockey in high school, ran the Orlando OUC Half Marathon in the mid-1980s and as recently as 2013 was a member of the Edgewater Crew masters rowing team in College Park. Although she can no longer stand or walk without assistance, she continues to pedal her high-performance, recumbent tricycle around the neighborhood, and she’s learning to use both a high-tech walker (called a U-Step II) and an electric wheelchair to get around Lake Eola Park, where she and Ned moved earlier this year after 32 years in College Park.

Marianne also enjoys reading – and baking. (Ned likes to point out, much to Marianne’s annoyance, that she was their high school’s 1973 Betty Crocker Homemaker of Tomorrow!) Most of her baking now consists of cakes, cookies and pies, but her favorite recipes initially were breads; the first year she and Ned were married, she made all they bread they ate each week from scratch – until they started gaining too much weight!

Even before the UF surgical trial in early 2016 worsened her Parkinson’s symptoms and led to the MSA diagnosis, Marianne had been getting outpatient physical, occupational and speech therapy at Florida Hospital as needed. Thanks to her and Ned’s interest in bicycling, she also found a program called Pedaling with Parkinson’s, an exercise program and social group based in the Crosby Wellness Center in Winter Park. That led her and Ned to Florida Hospital’s Parkinson Support Center, where they have become regulars not only at the Orlando support group but at several of the center’s other programs; like the cycling group, they offer valuable socialization – connecting with others facing similar circumstance – as well as group therapy for Marianne, caregiver respite for Ned, and the latest Parkinson’s information for both of them.

Marianne’s positive outlook – “Don’t worry, be happy,” she says – helps her manage the stress of dealing with a progressive disease. She chooses to focus each day on enjoying her family and friends as best she can. Her advice for those recently diagnosed: Don’t wait for a doctor to draw you a map or direct you to all the groups and services available; chances are the doctor will prescribe one or more appropriate medicines, and perhaps some therapy, but it’s up to you to look around, do some research, and tap into your local Parkinson’s community and any specialists, medical trials or educational resources available. “The more you get involved, the more you will learn about your illness, yourself, and the many opportunities you have to succeed,” she said.

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Partners in Parkinson's Comes to Orlando

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In October the Michael J Fox Foundation chose Orlando to host Partners in Parkinson’s educational seminar. This free event had over 1,200 people in attendance from many cities and states across the nation. The event’s resource fair included several national organizations, care centers & trial sites, allied healthcare providers and local resources.  Among those included Florida Hospital Parkinson Outreach Center, Bioclinica and the Parkinson Association of Central Florida. 

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Several Central Florida community members were represented and spoke on a variety of different panels. PACF Board Member, Don Bartlett, Nydia Burgos and Advisory Board Member, Tonya Walker were represented in the morning panel, The Many Faces of Parkinson’s.  John and Dorothy Gabriel provided information on Seeing a Movement Disorder Specialist lead by Dr. Soania Mathur.  In the afternoon Anissa Mitchell, LCSW Florida Hospital Parkinson Outreach Program Manager, Nettie Levett and Richard and Kathi Wells were represented during the You, Your Loved One and Parkinson’s Disease. Each panel helped provide a different perspective on Parkinson’s and many ways on how to manage it. 

Partners in Parkinson’s helped provide resources and education to the public and helped shed light on the importance of resources in the community. Local organizations, such as the Florida Hospital Parkinson Outreach Center, Bioclinica and Parkinson Association of Central Florida who are dedicated to working hard to provide resources and research to the community and to one day find a cure. 

Peacock Ball Honors PACF Board Member, Dr. Rita Bornstien 


Photo Credit to the Orange Observer

Photo Credit to the Orange Observer

Each year a worthy member of the community is recognized at the Winter Park History Museum’s Peacock Ball. This year, Dr. Rita Bornstein, our beloved Rollins College President Emeritus, and leader in the community was honored at this celebration.

On Friday, November 10, hundreds of people were in attendance for the black tie affair at the Alfond Inn, in Winter Park, Florida  to celebrate the 11th Annual Peacock Ball. A cocktail hour followed by a dinner was concluded with dancing to the Orlando Big Band as they preformed favorites from Tangos to Waltzes; Glenn Miller to Cab Calloway; and many more.

The Honoree,  Dr. Rita Bornstein was acknowledged for her accomplishments with Rollins College as they rose from number 6 to number 1 among Regional Universities in the South in the US News & World Report. During her 14 year tenure as President. Upon her retirement she was named Citizen of the Decade by the Winter Park Chamber of Commerce. Dr. Bornstein currently serves on many boards including the Parkinson Association of Central where she helps to raise funds and awareness at the annual Walk for Parkinson in April of each year.

“Someday, we will find a cure”.

Welcome New Board Member Tonya Walker

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Tonya is married to Chad Walker and together they have a son named Chase, dog named Callie, and a family fish named Jaws. When she's not working, Tonya enjoys running, watching her son play football, football games, and blogging about fashion. She became involved with the Parkinson's Association of Central Florida through Anissa Mitchell, the Florida Hospital Parkinson Outreach Program Manager. Tonya wishes to increase its presence in the Central Florida community by increasing community awareness of the many wonderful resources available to people with Parkinson's and their caregivers. 

Welcome New Board Member Blair Hull

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Blair Hull has been married to Bill Hull for 23 years. They have three children, Bradley (19), Michael  (16) and David (10). She heard about PACF through the Parkinson Support Group Meetings that she attends with her Mother who was diagnosed with Parkinson's for over 23 years. Blair wants to help spread the word about Parkinson's disease, what it is, and how it affects people. She hopes to continue raising money for programs as well as research for treatments and eventually a cure. 

Video Games Exercise Motor and Memory for Parkinson's Community Member

Meet Scott Thompson. He is a loving husband, video gamer and huge Star Trek fan. Scott and his wife Ravyn have a dachshund corgi mix named Harley who they love dearly.

Scott has a deep love for Star Trek related series, and movies, as well as DC and Marvel Superheroes. When he was five he decided to follow his positive role models and chose to stay out of trouble. His love for Star Trek began in 1972, when he first discovered it in reruns. The fascination with a positive view of the future grew stronger as he learned more from it, and it's ideals for where mankind was headed technologically. Many of the devices we take for granted today, came from the ideas of Star Trek. Yesterday's communicator, is today's cell phone for example.

In 2009 Scott was diagnosed with Parkinson’s disease. He first noticed symptoms when he was playing video games. His timing was off and he wasn’t able to push the buttons as quickly. Along with the delayed response, he also experienced pain and stiffness in his right arm. Once his doctor made the official diagnosis the news was tough to hear, however Scott and Ravyn remained optimistic about living life.  They later realized how medication can improve his motor skills so Scott decided to test his skills in the best way he knew how to by playing video games. Playing these games has helped challenge Scott with his hand and eye coordination.

Scott also attends the Orlando support group and has attended many of the other classes offered by Florida Hospital. He is a regular at the support group that meets every second and fourth Thursday of the month. To Scott, the support group is a family and he strives to know every member. Socialization is key to helping him manage his Parkinson’s. Staying active and developing relationships has helped him realize he can continue to do the things he loves.

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New Board Member: Leslie McClelland

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Welcome Leslie Mcclelland!

Leslie is the Marketing and Recruitment Director for Compass Research and has a background serving on many other non-profit boards. Leslie and her husband Andy have a daughter who is 2 ½ years old. Leslie enjoys reading, visiting museums, and going to playgrounds and splashpads all over Central Florida with her family. She first heard about the Parkinson Association through facebook and was able to learn about the support PACF provides for patients and caregivers. Leslie is most excited to help the organization meet the changing needs of families impacted by Parkinson’s disease through diverse programs and therapeutic offerings.  

PACF DONATES $20,000 TO PARKINSON’S PROGRAMS & RESEARCH

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Top image shows PACF Board Members and a check donation for $10,000 to the National Parkinson's Foundation, bottom left image shows a check for $8,000 to the Michael J Fox Foundation and the bottom right image shows $2,000 donated to the Brian Grant Foundation.

PACF DONATES $20,000 TO PARKINSON’S PROGRAMS & RESEARCH

The WALK FOR PARKINSON’s event raised an outstanding $106,000! These efforts aren’t possible without the help from the Central Florida community reaching out to friends and family members. Some of the contributions from the WALK, will be donated to three organizations, the National Parkinson Foundation, Michael J Fox Foundation, and the Brain Grant Foundation.

National Parkinson Foundation is helping people with Parkinson's live a better life today and conducting ground-breaking research for a better tomorrow. In August 2016, National Parkinson Foundation and the Parkinson’s Disease Foundation merged to form a stronger organization investing  in promising scientific research towards improving the lives of people living with Parkinson’s and their families. Last year the National Parkinson Foundation spent $7,090,460 towards public education, patient care services, and research, all of which impacts the greater Parkinson’s community. The donation will be specifically for the fellowship program to help support the next generation of Movement Disorder Neurologist.

The Michael J. Fox Foundation is leads in research helping to find a cure for Parkinson’s disease and has funded more than $700 million dollars to speed a cure for Parkinson’s. The Parkinson Association of Central Florida has helped donate towards research through the Michael J Fox Foundation’s Team Fox through two local community members. Through their efforts 100% of these donations go towards research and helps to raise awareness at the local level.

Earlier this April, Brian Grant was the featured speaker at the Brain and Beyond Conference where he shared his story and his mission at the Brian Grant Foundation. The Brian Grant Foundation focuses on exercise, wellness and nutrition and offers tangible resources to improve the quality of life for people with Parkinson’s. Brian continues to speak out about Parkinson’s and the affects the disease has had on his life.

Giving back to these organizations helps make a difference in improving the lives of people living with the disease today, and hope for a cure in the future. All of this is made possible by your generosity. Together we can improve the quality of life for all people impacted by Parkinson’s disease!
 

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New Board Member: Scott Herring

Welcome Scott Herring!

Scott is PACF’s newest board member. He is the Chief Financial Officer at Florida Citrus Sports and will serve as Treasurer on the PACF Board of Directors. Scott is married to Debbie Herring and they have three sons, Brett, Sean, and Kendall. His hobbies are playing and watching sports especially the Steelers, Penguins and the Pirates. Scott heard about the Parkinson’s Association through a close friend, and current board member, John Gabriel. John encouraged Scott to join the board and assume the position as Treasurer. Scott wants to help those living with Parkinson’s, their caregivers, and families so everyone can live life to the fullest.

Donation to the Michael J Fox Foundation

The Parkinson Association of Central Florida donates $8,000 to the Michael J Fox Foundation in support of two Central Florida community members, Rose Babcock and Tonya Walker.

Rose Babcock and her husband Chris organize the Pints for Parkinson’s event to raise money for Team Fox. The event is held at the World of Beer in Dr. Phillips and includes a variety of assorted raffle items. Tonya Walker hosts The Art of Fashion where many clothing styles are presented as well as art items created by local artists.

Both events help raise awareness and funds for Parkinson’s research. The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of therapies for those living with Parkinson's today.

 

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