Framing Off Through Art

"There's nothing better than collaboration to get answers you're looking for" - Steve DeWitte, living with Parkinson’s since 2005

LIGHT IN THE DARKNESS

LIGHT IN THE DARKNESS
Sarah Diaz

Sarah Diaz

LIGHT IN THE DARKNESS

People often forget Sarah has Parkinson’s. Sometimes, she’s so relaxed that she has no tremor, and even she wonders if she still has Parkinson’s. But Sarah’s OFF periods can hit her at any time of day and then she’s fully aware of the diagnosis she received in 2010 at age 49. When this happens, Sarah says “the power goes off,” but people around her may not see or realize it. Sarah’s OFF periods are marked by fatigue, stiffness, lower back pain and non-motor symptoms like anxiety and feeling overwhelmed.

Sarah’s best friend, Brenda, stayed by Sarah’s side when she was diagnosed. They first met when their children were young and have remained close friends for nearly 30 years. Brenda’s support has helped carry Sarah through some of her hardest days. Right after Sarah’s diagnosis, Brenda attended doctor’s appointments with her, took meticulous notes and followed up with Sarah every day to make sure she adhered to the doctor’s orders.

Sarah waited five years before going to a support group, but it’s central to her life now, offering her a safe place to speak openly about her experience living with Parkinson’s. Sarah has found that the more open she is and the more she talks about her Parkinson’s, the better she feels. She has attended the annual Parkinson’s Advocacy Day and is active in her community in Connecticut. In addition to working full-time as an office assistant, Sarah is the primary caregiver for her mother.

The artwork created by Tim depicts Sarah’s world. The variety of colors illustrates the range of emotions she experiences on a daily basis related to her Parkinson’s and OFF periods. Tim portrayed Sarah as the brighter tree in the foreground to signify how she feels “lighter” and more hopeful after becoming more involved in support groups and the community. Tim sees Sarah as the “light in the darkness,” the name of the painting.

Read More
Share: Share on LinkedIn Share on Twitter Share on Facebook

Perspectives

Sarah Diaz

Sarah was diagnosed with Parkinson’s in April 2010. With such shock and uncertainty about her future with Parkinson’s, Sarah fought courageously, taking Parkinson’s head on. Sarah became a leading pioneer for the Parkinson’s community, joining the Connecticut Advocates for Parkinson’s, in which she provided awareness, advocacy and support to minority communities.

Sarah was diagnosed with Parkinson’s in April 2010. With such shock and uncertainty about her future with Parkinson’s, Sarah fought courageously, taking Parkinson’s head on. Sarah became a leading pioneer for the Parkinson’s community, joining the Connecticut Advocates for Parkinson’s, in which she provided awareness, advocacy and support to minority communities.

In April 2018, Sarah formed the Parkinson’s Awareness Bi-lingual Event, a milestone event with a special focus on targeting the Latino/Hispanic and African American communities for those affected by Parkinson’s. Sarah’s keynote speaker was world renowned Dr. Maria DeLeon, a Movement Disorder Specialist. Sarah has attended several professional conferences, including the Parkinson’s Policy Forum for the last three years.

Sarah Diaz

Brenda Stallings

Brenda Stallings began a close friendship with Sarah Diaz nearly 30 years ago and has been an advocate for people with Parkinson’s since Sarah’s diagnosis in 2010. Sarah and Brenda met through their children and have remained friends throughout much of their lives. When Sarah first began her journey with Parkinson’s, Brenda assisted however she could, including attending doctor’s appointments to driving and helping with other daily activities.

Brenda Stallings began a close friendship with Sarah Diaz nearly 30 years ago and has been an advocate for people with Parkinson’s since Sarah’s diagnosis in 2010. Sarah and Brenda met through their children and have remained friends throughout much of their lives. When Sarah first began her journey with Parkinson’s, Brenda assisted however she could, including attending doctor’s appointments to driving and helping with other daily activities.

Brenda’s professional life also provides her with firsthand insight into life with Parkinson’s. As a software trainer at a school for the developmentally challenged, Brenda interacts with residents, many of whom live with Parkinson’s.

Brenda Stallings

Pedro Gonzalez-Alegre, M.D., Ph.D.

Dr. Gonzalez-Alegre is an Associate Professor of Neurology at the University of Pennsylvania, with subspecialty training in Movement Disorders and Neurogenetics. He is currently Co-Director of the Parkinson’s Disease & Movement Disorders Center at the University of Pennsylvania, founding Director of the Penn Huntington’s Disease (HD) Center of Excellence, Director of the Neurogenetics Program in the Department of Neurology at the University of Pennsylvania, and Director of Clinical Programs at the Raymond G. Perelman Center for Cellular & Molecular Therapeutics at The Children’s Hospital of Philadelphia.

Dr. Gonzalez-Alegre is an Associate Professor of Neurology at the University of Pennsylvania, with subspecialty training in Movement Disorders and Neurogenetics. He is currently Co-Director of the Parkinson’s Disease & Movement Disorders Center at the University of Pennsylvania, founding Director of the Penn Huntington’s Disease (HD) Center of Excellence, Director of the Neurogenetics Program in the Department of Neurology at the University of Pennsylvania, and Director of Clinical Programs at the Raymond G. Perelman Center for Cellular & Molecular Therapeutics at The Children’s Hospital of Philadelphia.

In addition to providing clinical care for patients with movement disorders, he is an active investigator who has made significant contributions in the areas of dystonia, Huntington’s disease and gene therapy development for movement disorders. For these research efforts, he received the 2003 S. Weir Mitchell Award from the American Academy of Neurology, the 2012 Jon Stolk Award in Movement Disorders from American Academy of Neurology, the 2004 Junior Award for Excellence in Basic Research from the Movement Disorders Society and the 2012 Stanley Fahn Award of the Dystonia Medical Research Foundation.

Pedro Gonzalez-Alegre, M.D., Ph.D.

Tim Kenney

Tim is an abstract impressionist and colorist who paints with bold colors and strokes to create paintings with feeling and excitement. Several of Tim’s friends have been diagnosed with Parkinson’s, including his close friend Nicole who was diagnosed with early-onset Parkinson’s.

Tim is an abstract impressionist and colorist who paints with bold colors and strokes to create paintings with feeling and excitement. Several of Tim’s friends have been diagnosed with Parkinson’s, including his close friend Nicole who was diagnosed with early-onset Parkinson’s.

In May of 2014, Tim embarked on a 50-day tour with the goal of creating 50 paintings in 50 states in 50 days. The subject of his 50th painting was his grandmother’s house in Santa Fe, New Mexico, which is now the home of the Georgia O’Keeffe Museum Research Center. From this tour, he created artwork and will donate more than $15,000 to the Nicole Jarvis Parkinson’s Research Foundation and the Michael J. Fox Foundation.

Tim Kenney

Additional Resources

Join the Conversation

Be alerted when new content becomes available.