Picture yourself with a life-altering illness like Parkinson’s disease. You’ve got a variety of physical symptoms like tremors, an unsteady gait and maybe back pain. Then, there are the psychological issues — anxiety and depression. When these symptoms arise, it’s known as the “off period.” It can be difficult to explain to loved ones and even nurses and doctors how you feel and how the disease affects daily life and medical care unrelated to Parkinson’s.
Framing OFF Through Art, an innovative program sponsored by pharmaceutical company Accorda Therapeutics, aims to help patients tell their story. Accorda has hired artists to create work that depicts how patients with Parkinson’s feel regarding the motor or non-motor symptoms of Parkinson’s. The art is currently on tour, most recently at the World Parkinson Congress in Kyoto, a major international medical conference.
Waterbury resident Sarah Diaz was paired with Oklahoma painter Tim Kenney, who interviewed her about her Parkinson’s experience, then began creating a painting about it. Kenney painted a stand of trees with one tree in the middle brighter than the others and titled the work “Light in the Darkness.” That center tree depicts Diaz.
“I think it’s beautiful,” she says. “He has all my emotions in that piece of art — my good days, anxiety, happiness, feeling overwhelmed and my pity party days.”
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"Sometimes I feel like the Tin Man. It's a horrible disease that takes your livelihood from you," says Sarah Diaz, 58, of Waterbury, who was diagnosed with Parkinson's disease nine years ago. Framing OFF Through Art, an innovative program aims to help patients with Parkinson's be able to describe their experiences with the disease. Oklahoma artist Tim Kenney recently painted a picture to help her explain how Parkinson's makes her feel. The painting is currently at a medical conference in Japan. (Patrick Raycraft/Hartford Magazine)
Kenney is an abstract expressionist and colorist who began painting only 10 years ago after he needed to work at home because he was caring for his mother. He used a palette knife and oil paint to create the 20-by-24-inch painting. He primarily paints pictures of Aspen trees.
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“Even though Sarah has a dark diagnosis, she was bright and cheery,” Kenney says. “I wonder, how does she get up every day? She said, ‘God gets me through every day, God’s going to make this happen.’ It was very emotional on my end.”
Several of Kenney’s friends have been diagnosed with Parkinson’s, including Dr. Nicole Jarvis, an obstetrician, who was only 38 at her diagnosis. In 2014, Kenney embarked on a 50-state tour with the goal of creating 50 paintings in 50 states in 50 days. He donated a portion of the proceeds to the Nicole Jarvis Parkinson’s Research Foundation and the Michael J. Fox Foundation. About 1 million Americans have Parkinson’s.
Accorda developed “Live Well. Do Tell,” an initiative created to build awareness of off periods and develop an approach to fill communication gaps among people with Parkinson’s, their care partners and health care teams. Framing OFF Through Art is an extension of that program, according to a company spokesperson.
For Diaz, part of the issue about talking about Parkinson’s is that she doesn’t particularly look sick. Diagnosed in 2010 at age 49, she said her off periods, when her symptoms emerge, occur several times a day. She has a variety of symptoms including back pain, tremors, anxiety and depression, and she has also lost her sense of taste and smell.
Initially, she leaned on her best friend, then eventually opened up in a Parkinson’s support group. She takes medication and is under the care of a neurologist who specializes in Parkinson’s. Diaz worked for a number of years as an office assistant while coping with Parkinson’s and recently retired.
“There are not enough specialists to take care of Parkinson’s patients. People need to be more aware and educated,” Diaz says. “Even other health care providers are uninformed about Parkinson’s.”
The disease affects each patient differently, and it helps to listen to others’ stories and symptoms. Diaz said she sometimes feels insecure and wonders if people are staring at her because she’s walking slowly, for example.
“It’s not a good feeling. You get isolated, I just wanted to stay in the house," she says. “It’s hard for me to play with my grandkids because of the stiffness. I don’t get on the floor, because I need someone to help me up.”
"My grandchildren come to visit me. They're my inspiration," says Sarah Diaz, who was diagnosed with Parkinsons disease nine years ago. At left is her granddaughter, Harper Nailing, 4, of Wolcott, and at right, is her grandson, Cane Nailing, 1, of Wolcott. Diaz says she also has a 2-month-old grandson, Reign, in Georgia. Diaz is a Michael J. Fox Foundation ambassador. (Patrick Raycraft/Hartford Magazine)
Diaz, who is Hispanic, is working toward raising awareness in the Hispanic community because she believes the people in the community find it difficult to express what they are going through.
Kenney says he will send smaller paintings to Diaz and her close friend who supported her in her illness. The three are seen here discussing Kenney’s painting: livewelldotell.org/framing-off/light-in-the-darkness.
“I feel grateful to be involved with the Framing OFF Through Art program,” Diaz says. “It gives me hope at least that people care about you and are trying to find a cure for this horrible disease.”
https://www.courant.com/hartford-magazine/hc-hm-parkinsons-artwork-patients-experiences-20190728-20190710-yhmuxxefuzgh3frxatxmyibzqq-story.html
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