NORMAN, Okla. — For individuals with Parkinson's disease, motor fluctuations, also known as "off" times, occur when medications aren't working well and disease symptoms return or intensify.
Some patients struggle with expressing the symptoms they experience during these off periods, but, with a paintbrush in hand, Norman artist Tim Kenney illuminated those symptoms.
In July of 2018 Acorda Therapeutics, Inc. contacted Kenney and asked him to be an artists involved in their Framing OFF Through Art program. Through the program Kenney and two other artists, Julie B. and Anita Kunz, were each paired with two patients diagnosed with Parkinson’s disease and they painted or crafted the individuals' description of their off periods.
The completed program involved patients Steve Peters, Jennifer Parkinson, John Pelchat, Linda Berghoff, Sarah Diaz and Gustavo Pavon.
“Research has consistently shown that off periods are among the most common issues for people living with Parkinson’s disease,” said Dr. Ron Cohen, Acorda’s President and CEO in an Acorda press release. “This re-emergence of Parkinson’s symptoms can occur unexpectedly, up to several times a day, despite daily medication regimens; this causes enormous disruption and distress to the people who experience this.”
Cohen added, each person’s experience with off periods is unique and can be difficult to describe. He said they believe that people with Parkinson’s will be able to see aspects of their experiences with Parkinson’s and off periods in these works of art, and use this as an opportunity to discuss their symptoms with their healthcare team.
“During an off period, where your medication is suddenly not doing its job, and this happens sort of out of nowhere unexpectedly, it can be very traumatic," Dr. Nicole Jarvis, a Norman OB-GYN and founder of The Nicole Jarvis Parkinson’s Research Foundation, said. "It depends on what you’re doing, but not only can it physically impair you from being able to walk or speak, but it is a very frightening feeling to be sort of stuck in a place.”
Jarvis said every patient is different, but when medications are working well, most Parkinson’s patients function fairly normally.
“I won’t say that we are not aware that we have Parkinson’s disease, I myself have Parkinson’s disease so I am always aware of it, but when my medications are working well, I can still function and probably nobody else would even know that I have Parkinson’s disease,” Jarvis said.
When patients are experiencing off periods, Jarvis said, it can be very isolating having the inability to explain the feeling.
“I think that these paintings that Tim did, those patients described to him specifically what they feel like during their off times and he represented that through his art, and to be able to do that it just blows me away that he is just incredibly talented,” Jarvis said.
Kenney said that’s the main goal of this project, showing how a patient feels during off periods and encouraging communication with family and physicians. He said Jarvis is a good friend and learned more from her about off periods before the program began.
His work features a medley of bright colors and uses the color and characteristics of the trees, in both his paintings, to portray the off periods for Diaz and Pavon. Mid-February he interviewed each for about four hours.
All six individuals have a video about each piece of art and their story written out on the Live Well Do Tell webpage.
“It’s been a real honor to work on the Framing OFF program with this company who is trying to create more awareness for Parkinson’s patients to communicate with their physicians and their families,” Kenney said. “The more they communicate with their doctor about every little thing, especially during their off periods, then the physician can help them fine tune their treatment.”
Kenney said this project was unique, because he had never painted feelings before. When he first heard about this project he wasn’t sure how he was going to paint them, but that all changed when he met Diaz and Pavon.
Diaz has been a Parkinson’s patient for 11 years. She was hesitant to disclose her diagnosis and has struggled with family support while taking care of her mom, Kenney said. However, he said she has a positive outlook on life and he wanted to portray that.
“The painting I did for her was the aspen painting with most of the trees dark. There was one light tree and, to me, that signified what Sarah was, which is the light in the darkness,” Kenney said.
Pavon was the same way, Kenney said, in not wanting to share his symptoms with family and physicians when he was first diagnosed.
“He has now learned to go to more groups and he is blooming a little bit and learning how to get back out in the community a little bit more,” Kenney said. “The oak tree was, he has got a real strong family so he is rooted to the ground and the oak tree has lots of roots that are going through the ground.”
Kenney said Pavon’s wife, Marcela Del Bosque, described the tree as his personality with him branching out and blooming more.
Acorda Therapeutics announced on Monday that all six pieces of art are on display at an art gallery inspired by people with Parkinson’s at the 5th World Parkinson Congress this week in Kyoto, Japan. All of the artwork, stories and videos for Framing OFF Through Art can be found at livewelldotell.org under the Framing OFF tab.
Standlee writes for The Norman Transcript, a CNHI News Service publication.