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

ROOTED RESILIENCE

ROOTED RESILIENCE
Gustavo Pavon

Gustavo Pavon

ROOTED RESILIENCE

When Gustavo’s left hand started to twitch in 2005, he didn’t think much about it. When his symptoms evolved from trembles to tremors, he sought a doctor’s advice and was diagnosed with Parkinson’s. Neither Gustavo nor his wife and care partner, Marcela, were surprised, instead the couple felt relief. Learning that Gustavo’s challenges were a result of Parkinson’s meant they could move forward, accept his diagnosis and learn how he could live well with Parkinson’s.

Gustavo began seeing a Movement Disorder Specialist to manage his Parkinson’s and OFF symptoms. Marcela would go to as many doctors’ appointments with him as possible. Over time, Gustavo uncovered strategies to manage his symptoms, which gave him the ability to accept that there are both good days and bad days. Having Parkinson’s can be an isolating experience for many, and for the first 10 years, Gustavo told only his family and close friends about his condition. Sharing his diagnosis with his tight-knit community allowed him to deal with the challenges of Parkinson’s on his own terms.

Both Gustavo and Marcela know that Parkinson’s affects his abilities daily. His OFF symptoms include shaking, as if he’s shivering from the cold, and a stiffness that makes it difficult to walk. But Gustavo and Marcela are determined not to let Parkinson’s change their perspective on life. Marcela advises other spouses and care partners that “there always has to be laughter.” She supports Gustavo through the good and bad days by being patient, loving and maintaining a sense of humor.

Gustavo manages his Parkinson’s and OFF periods by maintaining his close connections and making it a priority to live in the present. Despite physical challenges from his OFF periods, Gustavo still works as an engineer and visits with family and friends as often as he can. He and Marcela also volunteer and he serves on the Board of Advisors for Shake It Off, a nonprofit organization dedicated to raising awareness and money for Parkinson’s research.

The artwork created by Tim has a dual meaning. First, it depicts the way Gustavo described his OFF periods, as they are oftentimes unpredictable and can last for an hour or more each day. The transition from the dark roots to the brightness of the leaves and sky illustrate the transition within Gustavo when OFF periods occur. When Marcela saw the painting, she immediately picked up on this and noted that when Gustavo is in a dark place — in an OFF period — he’s quiet and doesn’t smile; then, Gustavo’s bright smile that she loves reappears and he returns.

Second, Tim used the branches and colors to depict how Gustavo is blooming more now than he did in the past. Gustavo not only feels grounded by the support of his family and friends, but he is also “branching out” as signified by the green and bright colors of the leaves. His growth has enabled him to speak more freely and openly about his Parkinson’s, talk more with his doctor and be active in the Parkinson’s community.

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Perspectives

Gustavo Pavon

Gustavo was diagnosed with Parkinson’s in 2006 at age 42. In August 2014, Gustavo was named a member of the Board of Advisors of Shake It Off, a non-profit organization which raises awareness of Parkinson’s, funds Parkinson’s research and promotes a higher quality of life through exercise therapies for those living with Parkinson’s.

Gustavo was diagnosed with Parkinson’s in 2006 at age 42. In August 2014, Gustavo was named a member of the Board of Advisors of Shake It Off, a non-profit organization which raises awareness of Parkinson’s, funds Parkinson’s research and promotes a higher quality of life through exercise therapies for those living with Parkinson’s.

In his role on the Board of Advisors of Shake It Off, Gustavo volunteers his time to help organize various yearly fundraising events such as the PD500 bike ride and the Philly Rabbit Run 5K. Gustavo has over 20 years of experience in solutions architecture and standards development within the telecommunications industry and received his Bachelor of Science degree in Electrical Engineering from Universidad Iberoamericana in Mexico City, Mexico. He currently resides with his wife, Marcela, in Pennsylvania.

Gustavo Pavon

Marcela Del Bosque

Marcela Del Bosque has been an advocate for people with Parkinson’s since 2006 when her husband, Gustavo Pavon, was diagnosed. She is a mother of two successful young women and also works as a teller at a local bank in Pennsylvania. She approaches living with her husband’s Parkinson’s positively and reminds Gustavo daily that “he has Parkinson’s, it does not have him.”

Marcela Del Bosque has been an advocate for people with Parkinson’s since 2006 when her husband, Gustavo Pavon, was diagnosed. She is a mother of two successful young women and also works as a teller at a local bank in Pennsylvania. She approaches living with her husband’s Parkinson’s positively and reminds Gustavo daily that “he has Parkinson’s, it does not have him.”

Marcela has participated in a number of local events with Shake It Off, a non-profit organization which raises awareness of Parkinson’s, funds Parkinson’s research and promotes a higher quality of life through exercise therapies for those living with Parkinson’s.

Marcela Del Bosque

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

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