Sarasotans Publish Book Revealing Daily Life with Parkinson Disease

A groundbreaking book was released on January 29th, illustrating for the first time the day-to-day life of people living with Parkinson Disease. Authored by Sarasota residents and Parkinson patients Christine Ludwig and Dave Anderson, “Notes from Movers and Shakers with Parkinson Disease” is a practical guide to living with the neurodegenerative disease from the perspective of real patients.

“If you have been diagnosed with Parkinson Disease; if someone you love has been; if you're a caregiver to a Parkinson patient; if you are related to a Parkinson patient, then you know what’s not easy to come by – knowing that you’re not alone and gaining insight from those who have preceded or are accompanying you on this lifelong journey,” says Ludwig. “These real-life stories will make you laugh and cry. This remarkable collection captures the grand achievements and every day victories of our resilient peers.”

“Notes from Movers and Shakers with Parkinson Disease” is based on information from a questionnaire distributed to and completed by a wide group of people who are living with Parkinson’s. Moving chronologically from the diagnosis through mid- and late-stage PD, the authors share their experiences with emotional as well as practical issues, capturing heartwarming, humorous stories in the process. They share the uncertainties of a progressive disease, from losing the ability to drive to facing life-altering decisions. Most importantly, this book offers the more than one million people diagnosed with Parkinson Disease in the U.S. the comfort that they are not alone.

For more information or to order “Notes from Movers and Shakers with Parkinson Disease,” please visit https://www.createspace.com/3747802.

About the Authors: On her way to becoming Vice President of technology for a major financial institution in the Northeast, Chris Ludwig worked in a variety of capacities, including tax-preparer and “Weather Girl.” She traveled extensively during her corporate career, and was recruited to spend an unforgettable year in Ireland. While travelling, she noticed a tremor in her right hand and was told it probably was an "Essential Tremor.” She chose to believe the diagnosis, until her personal physician insisted that she see a Neurologist for confirmation. She was greatly disappointed when the doctor diagnosed her with Parkinson's as well as Essential Tremor. Chris is an avid exercise practitioner, and believes strongly that "exercise is medicine!" She chose to have Deep Brain Stimulation surgery, but had to discontinue the treatment. She and her doctor are presently deciding "what's next?" Chris now lives and shakes in Florida and Cape Cod with her husband Dale, where she continues to appreciate every day with joy and enthusiasm.

Dave Anderson was born and raised a small town boy, and ultimately worked in a challenging environment in international advertising with a Fortune 500 company. After taking early retirement he noticed a slight tremor in his left hand, which was diagnosed as PD. Working together with a personal trainer, a rigorous training program was put in place, which Dave credits with not only slowing the progress of PD, but actually reducing some of his symptoms. The results, both physical and psychological led Dave to write "How to Tame Parkinson's by Keeping Fit," released in 2005, which chronicles Dave's criteria for selecting a personal trainer and developing exercise routines for the various stages of Parkinson Disease.

Nation's Largest Parkinson Symposium Reaches Capacity in Sarasota Saturday

The largest Parkinson Disease (PD) symposium in the nation returned to Sarasota on Saturday. Almost 1,000 patients, caregivers and physicians filled Sarasota Memorial's Institute for Advanced Medicine and overflowed to two satellite locations, each equipped with live streaming footage of the conference. The Suncoast Parkinson Disease Symposium, now in its 15th year, was hosted by Neuro Challenge Foundation (NCF) in partnership with Sarasota Memorial Health Care System, Sarasota Memorial Healthcare Foundation, and Sarasota Magazine.

Opening remarks were given by Suncoast health journalist Heidi Godman, NCF Executive Director Judith Bell and Medical Director Dr. Dean Sutherland, Sarasota Memorial Hospital COO David Verinder, Sarasota Memorial Healthcare Foundation CEO Alex Quarles (pictured above addressing crowd, photo by Cliff Roles), and Sarasota Magazine group publisher Kelley Lavin.

Dr. Michael Okun, Medical Director of the National Parkinson Foundation (NPF) and neurologist for Mohammed Ali, presented a model of "patient-centric" care that allows an interdisciplinary approach to Parkinson's, prioritizing the individual needs of each patient. "What Neuro Challenge is doing here is absolutely transformational," said Okun, in reference to the patient-centric qualified referral network Parkinson's Partners.

Dr. Cynthia Fox, co-founder of the headline-making Big and Loud Voice Therapy and a Research Associate at the National Center for Voice and Speech, invited the capacity crowd to stand, stretch, and speak loudly. This set the tone for her presentation of the Lee Silverman Voice Therapy system, which incorporates voice and body exercise as integral pieces of the Parkinson treatment, tantamount and complimentary to neurological and pharmacological modalities.

Dr. James Schumacher, Sarasota Memorial Hospital neurosurgeon led the audience through the processes of deep brain stimulation, neurotransplantation, and dopamine cell replacement. He then talked about the groundbreaking science of creating dopamine cells from one's own skin cells.

Dr. Dean Sutherland, NCF Medical Director and founder of the Southeastern Center for Parkinson Disease, presented an overview of current scientific theory about the causes, risk factors, and methods for diagnosis of Parkinson Disease.

Heidi Godman then facilitated a panel discussion and Q & A with the speakers. Topics discussed included causes for dyskinesia, deep brain stimulation for older patients, specific medication and amino acid efficacy, acupuncture for Parkinson treatment, and physical and behavioral tasks that can release dopamine.

"I especially enjoyed Dr. Okun's information about Parkinson patients and hospitalization; I am about to have surgery, and will definitely be taking this knowledge with me," said Sarasota's Linda Hatfield, diagnosed with Parkinson Disease in 2001. "Like last year's symposium, this extremely informational. Just excellent."

It is estimated that as many as 1.5 million people in the United States have PD. In Southwest Florida, it is projected that approximately 9,000 people have PD and another 5-10,000 are directly affected as professional or family caregivers. The Annual Suncoast Parkinson Symposium is held annually in Sarasota, Florida. For more information, please visit www.neurochallenge.org, or call (941) 926-6413.

About Neuro Challenge Foundation: Neuro Challenge Foundation is dedicated to the fight against Parkinson Disease (PD) in Southwest Florida through service, education and research. We are a 501(c)(3) charitable organization that offers online, in person and phone recommendations about local PD resources. A free resource guide is available online. Printed guides can be ordered online, viewed in the January 2012 issue of Sarasota Magazine or picked up at any Sarasota YMCA or HealthPlex location. NCF funds programs and activities that promise to ease the burden of Parkinson Disease through patient-centered professional education, community forums and scientific and clinical research. Patients, caregivers and nationally recognized scientific experts advise us and lead the way as we invest in the science and services that will lead to a cure. For more information, please call (888) 623-4483 or visit www.neurochallenge.org.

Cause 4 Fashion in One Month

A night of high fashion is returning to Sarasota to raise much-needed funds for Parkinson Disease programs on the Suncoast. Sarasota-based Neuro Challenge Foundation will host the 3rd annual Cause 4 Fashion gala event at Michael’s on East on March 1st from 6:00 to 9:00. Last year’s event received a “Standing O” from Sarasota’s Observer Group as a Standout Event of the year. All of the models in the show will be Parkinson patients or their caregivers, family members or friends. Proceeds benefit Parkinson Disease programs and research in Sarasota & Manatee counties.

An estimated 15,000 people are coping with Parkinson Disease in Sarasota and Manatee Counties alone. Neuro Challenge Foundation is the only local community-based voluntary health organization dedicated to enhancing the quality of life of people with Parkinson Disease and their caregivers through service, education and research. Neuro Challenge offers one-on-one advice with skilled professionals, workshops, seminars and the largest and most respected annual Parkinson Disease Symposium in Florida, co-sponsored by the Sarasota Memorial Health Care System.

The Cause 4 Fashion event features spring lines from Dreamweaver Planet, Exit Art, Lafayette 148, Lilla P, Lilly Pulitzer, Peace of Cloth, Robert Graham, T. Georgiano’s, and Tommy Bahama. The evening’s hosts are Sarasota personalities Cliff Roles and Heidi Godman, with special guest appearances from New York fashion designer Alex Garfield, Mayor Suzanne Atwell, Michael's on East's own Michael Klauber, and performances from Circus Sarasota. The event is being chaired by Dr. and Mrs. David Napoliello and by David Verinder, COO of Sarasota Memorial Hospital, and his wife Monica.

Tickets for the evening are $95 and can be purchased by calling Neuro Challenge at (941) 926-6413 or visiting www.neurochallenge.org. A cocktail hour and stellar shopping opportunity precede a five star meal and best-of-boutiques fashion show. A “bucket list” live auction during the show includes a private wine tasting with Michael Klauber, a custom portrait session from renowned Sarasota artist Gale Fulton Ross, a VIP package to the Sarasota Film Festival, and more. The event is presented by Amicus Foundation, Larry and Nola Heitbrink and Richard and Gloria Stevens, as well as and generous sponsors, patrons and community partners. Sponsorship is still available. Call 926-6413 for details.

About Neuro Challenge Foundation: Neuro Challenge Foundation is dedicated to the fight against Parkinson Disease in Southwest Florida through service, education and research. We are a 501(c)(3) charitable organization dedicated to serving you through online, in person and phone recommendations about local PD resources. We train and recommend the best Parkinson Disease professionals and support research that will lead to a cure. A free resource guide is available online. Printed guides can be ordered online, viewed in the January issue of Sarasota Magazine or picked up at any Sarasota YMCA or HealthPlex location.