Community Advocates

In order to stay up to date on latest treatments, drug discovery, clinical studies and how to manage Parkinson's disease everyday ParkinsonsDisease.net brings you frequent articles, blogs, points of view and advice from leading patient advocates and professional medical experts.

Current advocates

Eric Aquino

I was diagnosed with Parkinson’s on February 20, 2018. 2 weeks after my 40th birthday, a year and a half after developing one of the first motor symptoms which was resting tremors. After taking care of my grandmother who had Parkinson’s disease, along with being in health care for 14 years, the diagnosis did not come as a surprise. Read more.

John Bennett

John Bennett age 63 became a member of the Parkinson’s community when he was diagnosed in 2010. In 2016 he retired after spending 34 years teaching as a professor of marketing at four institutions the last being the University of Missouri. He looks forward to sharing his journey as a “parkie” in future posts and contributing to the discussion of PD. Read more.

Gretchen Church

Gretchen Church was diagnosed with Young Onset Parkinson’s Disease at 32 years old. 17 years later she is still going strong. 15 years ago she met and ultimately married Michael Church another contributor to ParkinsonsDisease.net who also has YOPD. Gretchen also is a contributor for Migraine.com having dealt with Chronic Migraines for 30 years. Read more.

Frank Church

Frank Church is a Professor of Pathology and Laboratory Medicine at the University of North Carolina at Chapel Hill (UNC-CH) in the School of Medicine. Frank received his diagnosis of Parkinson’s in early 2014 at the age of 60 years old. The blog entitled “Journey with Parkinson’s” describes his life with Parkinson’s. The overall goal of his writing is to translate the complexity of the medical and biological aspects of Parkinson’s to a more familiar voice and to give encouragement, along with information and other resources, to anybody with Parkinson’s or related neurodegenerative disorders. Read more.

Michael Church

Michael J Church was diagnosed with Parkinson's Disease (PD) at the age of 32. He was surprised at the diagnosis at such a young age. Typically, PD is found in older adults but has been discovered among a younger population of people. This diagnosis would have life altering changes and lead to some tough decisions that has allowed him to overcome many of the challenges associated with this disease. Read more.

Allan Cole

Allan Cole was diagnosed with young-onset Parkinson’s disease in the fall of 2016, at the age of forty-eight. Since then, he has devoted significant time and energy to supporting people who live with PD by raising awareness, providing education, garnering funds for research and support services, and writing about his own experiences of living with Parkinson’s. Read more.

Maria De León

Maria De León's long love affair with Parkinson's disease took a more intense and personal note after her grandmother was diagnosed with the disease only to discover that she too had developed symptoms at a young age of 38. Since then, she has taken her patient advocacy and knowledge of the disease to a new level in an attempt to change the science in regards to gender and cultural differences. In that regard, she authored the first Parkinson's book addressing women's issues in Parkinson’s titled "Parkinson's Diva: A Woman's Guide to Parkinson's disease." Read more.

Thea Destephano

I was first diagnosed with a neurological disorder known as Sydenham’s chorea at the age of 12. Sydenham’s is a disorder with symptoms similar to those often associated with Parkinson’s. Primarily rapid and uncoordinated jerking movements mostly affecting the face, hands, and feet. Read more.

Peter Dunlap-Shohl

Peter Dunlap-Shohl was cartoonist for the Anchorage Daily News for over a quarter of a century. Diagnosed with Parkinson's Disease at the age of 43, he has been a long-time patient advocate, using the skills he honed as a cartoonist to explain the disease and foster awareness and hope on his award-winning blog, "Off & On, The Alaska Parkinson's Rag," and in his book: My Degeneration, a Journey Through Parkinson's Disease. He is the leader of the Anchorage Parkinson's Disease Support Group. Read more.

Dan Glass

Dan Glass has had many life experiences since he was born in 1971. Growing up in suburban Pennsylvania, he developed interests in being a creative writer, hiker, science fiction fan, baseball follower, photographer, traveler, music connoisseur, and consumer of way too many cheesesteaks, chocolate iced donuts, and pizza slices. Oh, and he was diagnosed with Parkinson’s in 2016. Read more.

Melissa Halas

Melissa is a Registered Dietitian, Certified Diabetes Educator, wellness expert, and nationally recognized nutrition educator and speaker. She is the author of several books that promote plant-based eating for both children and adults, available at www.melissashealthyliving.com. Read more.

Phil Horton

In 2014, after about seven years of being misdiagnosed with “Essential Tremor” and having my abilities to fall off the edge of a carpet be a family joke, I was diagnosed with Parkinson’s. My current symptoms bounce, depending on what days it is, between Stage II and III with a Major in Balance and Falls and a Minor in Tremor. Read more.

Angie Hott

Angie Hott, while enjoying raising her young, large family, was busy being a mom, wife, and community church volunteer when Parkinson's disease (PD) came knocking on her door. She suddenly found her young husband, Dan, at home on an unexpected and surprising "early retirement". Now, as an advocate for PD research and working as a character values facilitator in the local schools, she shares her stories about faith, family, fun, and crazy days with PD on Hott Mountain, West Virginia. She is hoping her experiences will connect other young families and inspire the next generation to help and cure people with Parkinson's. Read more.

Robert Hunt

Life is about living gracefully and adapting to change with perseverance and compassion in the face of life’s challenges. Rob was diagnosed with Parkinson’s disease (PD) in 2019 after a previous traumatic brain injury and stroke. Read more.

Shamsa Hussain

In 2012, Shamsa noticed her first Parkinson’s symptom. She was aged 27 at the time and had just got married, graduated with a Masters in Education from The University of Cambridge, was 3 months pregnant with her first baby, moved to a new city; and started a new job. She didn’t have time to slow down or stop and listen to her body’s warning signals. Read more.

Eric Jacobs

Hi, my name is Eric and I have Parkinson’s Disease. Sounds odd, doesn’t it. I was diagnosed in June 2016 having been rushed into hospital for a Diabetes related problem. Since then, my life has changed drastically. Read more.

Heather Kennedy

Heather Kennedy writes as Kathleen Kiddo from her home near SF, offering unique talks and film presentations about living with Parkinson's. Since diagnosis in 2011, she has collaborated with organizations such as The Davis Phinney Foundation, The Cure Parkinson's Trust, The World Parkinson's Congress, and Atlantic Health Systems. Read more.

Sharon Krischer

Sharon Krischer was diagnosed with Parkinson's Disease in October, 2009 after several years of experiencing odd symptoms. Ever since she has read everything she could find on Parkinson's with the goal of finding a way to move on - literally - and not be defeated by the disease. Read more.

Pat LaPointe

Pat always believed that she would continue to enjoy her favorite activities: playing a bit of basketball with her grandsons long walks, working with a personal trainer, trips to the beach, writing and publishing essays and stories, and traveling in her “golden years”. Read more.

Emma Lawton

Emma was diagnosed with Parkinson’s at the age of 29. Making it her mission to raise awareness about the condition and continue her life as she planned, Emma campaigns and shares her story on social media, published her own book on dealing with Parkinson’s and recently video blogged her life for 365 days. Read more.

Nikki Louiselle

Nikki was diagnosed with Parkinson’s Disease on November 7, 2017. She was 45-years-old, working at a job she loved and busy at home with her husband and four active teenagers. Parkinson’s Disease was not even on her radar. Read more.

Kathi MacNaughton

I am an experienced consumer health education writer who had a career in nursing that spanned more than 30 years, much of it in the field of home health care, working with chronically ill people, including those who suffered with Parkinsons Disease and their caregivers. Read more.

Marc Mitnick

Marc Mitnick is a certified Speech Pathologist and patient advocate. He graduated from NovaSoutheastern University, Ft. Lauderdale, FL, with a Master's Degree in Speech Pathology and specializes in Neurogenic speech, voice and swallowing concerns of Parkinson's patients. Read more.

Posy

Posy was born in England, quite a few years ago. Her parents were former Spitfire pilot/soccer players and a much-loved teacher. Read more.

Angela Robb

Angela Robb is wife and care partner for her husband, Karl, who has young onset Parkinson's disease (PD). Angela met Karl post-diagnosis and they have been married for over twenty years. Angela is an advocate who speaks and writes about caregiver/care partner issues. She has shared her experiences at various national and international Parkinson’s Disease conferences. She believes that all care partners/caregivers need to find their own self-care toolkit! Read more.

Karl Robb

Karl Robb has lived with Parkinson’s disease (PD) for over thirty years. Karl noticed some distinct changes when he was seventeen years old and received a diagnosis of young onset Parkinson’s disease at the age of twenty-three. Since his diagnosis, he has been a Parkinson advocate, entrepreneur, inventor, writer, photographer, Reiki Master, and speaker on PD issues. In 2008, Karl started his blog, A Soft Voice in a Noisy World.Read more.

Gretchen Rosswurm

Gretchen Rosswurm was diagnosed with Parkinson’s Disease in 2017 at the age of 52. Her commitment to the Parkinson’s community springs from a deep history of PD in her family while at the same time believing that what seems an impossible challenge creates opportunities for connection, healing, and hope. Read more.

TK Sellman

TK Sellman, RPSGT CCSH is a career journalist (Columbia Chicago, ’90). She was diagnosed with idiopathic hypersomnia in 2010, which inspired her to go back to school to become a sleep technologist in 2012 and a professional sleep educator in 2014. Her IH diagnosis was later abandoned when her neurologist in Seattle confirmed RRMS was to blame for her continual fatigue, as well as other symptoms of relapse (tremor, migraine, and tinnitus). Read more.

Mary Beth Skylis

Mary Beth Skylis is an outdoor enthusiast with a penchant for words. She spends her time traveling to remote spaces around the globe, using them as a medium to educate and inspire herself and others. In 2015, she hiked the 2189-mile Appalachian Trail. The 4.5-month journey took her from Georgia to Maine, where she learned how to survive on her own. Read more.

Allison Smith

Allison Smith was diagnosed with Young Onset Parkinson’s disease in 2010 at the age of 32. As a licensed Marriage and Family Therapist, she helps those challenged by chronic illness. In 2013, she launched her blog, The Perky Parkie, which details her Parkinson’s adventures with a touch of humor. When not battling Parkinson’s, she enjoys spending time with her dog, Crash. Read more.

Karen St. Clair

Karen St. Clair is a caregiver to her husband, musician, singer & songwriter, Rob Barteletti. Rob has lived with Parkinson’s (PD) for over twenty years. Read more.

Juwairiya Syed

Juwairiya Syed’s father was diagnosed with Parkinson’s Disease almost two years ago. At the time, she was living at home with him and helping her mother and family figure out the next step of their journey. Read more.

Elrica Tanu

For the bulk of her decade-long career as a video news reporter and producer, Elrica Tanu had strived to make current affairs palatable to viewers in Singapore - by telling the human story behind numbers and statistics. Read more.

Suzanne Troy

Suzanne has been involved with two people with Parkinson’s Disease. First, she was a caregiver for an elderly neighbor with PD some years ago. She enjoyed being able to take care of Shirlee while her daughter worked. It was a learning experience for Suzanne as she had not been exposed to PD before. Read more.

Lorraine Wilson

Lorraine Wilson is an educator and joy seeker; thus, sharing her experiences after being diagnosed with Parkinson’s provides opportunity to reach out to others with helpful information and positive energy. She retired from her role as a professor of kinesiology but continues to work with former colleagues in exercise research studies related to PD. Read more.

Former advocates

Sarah Hackley

Sarah Hackley is the author of "Preparing to Fly: Financial Freedom from Domestic Abuse," "Finding Happiness with Migraines: A Do-It-Yourself Guide," and the poetry chapbook "The Things We Lose." She's also a regular writer on ParkinsonsDisease.net, Migraine.com, and AtopicDermatitis.net, and her personal blog, The Migraine Chronicles, has been called "one of the Top 50 Migraine Blogs on the planet." Follow her on Facebook or Twitter, and learn more at www.sarahhackley.com. Read more.

Kirk Hall

Kirk Hall, a Parkinson’s disease (PD) advocate, author, and speaker, lives in the Denver area with his wife, advocacy partner and caregiver, Linda. He began to experience neurological symptoms including essential tremor and swallowing problems in the early 90’s and was diagnosed with PD in 2008. Kirk had successful deep brain stimulation surgery in 2011. Read more.

Brooke Huminski

Brooke Huminski, MSW LICSW is a contributor and moderator for Parkinson's Disease.net as well as a psychotherapist in Providence, RI. Prior to starting her own practice, she worked intensively with patients and families, including those living with Parkinson's Disease, in her role as a medical social worker on an acute inpatient medical/surgical unit. Collaboratively, she helped families navigate the complex medical system and offered support during times of crisis or end of life. She is familiar with many of the mental health and cognitive aspects that impact those with Parkinson's over the course of the disease. Read more.

Judy Parker

Judy was caregiver for her dear husband Marvin as he began his journey with Parkinson’s Disease in January 1991 when he received his official diagnosis. Other than “off days” the early years were considered good and he continued to work as a school bus driver and driver for a company that offered shuttle services for FedEx workers in Indianapolis. Read more.

Tonya Walker

Tonya began experiencing Parkinson’s symptoms in 2006 at the age of 32. Two years later she was diagnosed with Young Onset Parkinson’s disease. In 2013 she underwent Deep Brain Stimulation. Tonya is active in the Parkinson’s community. She has shared her Parkinson’s journey at the 2016 World Parkinson’s Congress, health-industry related corporate meetings, and various community Parkinson’s forums. She shares her love of fashion and shoes on her blog, The Shoe Maven, which also serves as a platform for Parkinson’s awareness. Tonya also works full-time as a Legal Research & Writing professor. Read more.

Kelly Weinschreider

Kelly was diagnosed with young onset Parkinson’s disease in 2002 at age 29. She has since started two young onset support groups and is active in the Parkinson’s community. She underwent bilateral DBS surgery in 2016 and is doing very well. She enjoys traveling and spending time with her husband, David, and their Golden Retriever, Cooper. Read more.

Peter Whyte

Peter Whyte, is 66 years old, and is a semi-retired founder and investor in startup technology companies. He has been mostly sidelined with his Parkinson's Disease for more than a decade. "Some executive function is not working like it used to due to this disease, and it's hard (not to mention irresponsible) to take investor's money knowing one is not going to be at their best," says Peter. So, he is busy learning, writing and until recently speaking to Parkinson's support groups about one of the most insidious symptoms of Parkinson's, namely depression. Peter has now lost most of his voice to PD. Read more.

Matthew Zepelin

Matt Zepelin is a mindfulness teacher, Certified Feldenkrais Practitioner®, and PhD candidate (University of Colorado) located in Boulder, Colorado. Matt has worked with people with Parkinson’s disease in workshops, classes, and private sessions since 2013, and he runs the Mindful Movement for Parkinson’s Audio Library. Read more.

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