By ELLEN FUTTERMAN
John O'Donnell has a singular goal: to give each of his seven grandchildren a framed painting of his before he dies.
John O'Donnell paints for therapy and pleasure at the Muhammad Ali Parkinson Center in Phoenix. His wife Karen O'Donnell takes painting classes with him at the center. The center is part of the Barrow Neurological Institute of Dignity Health St. Joseph's Hospital and Medical Center.
Barrow Neurological Institute
Not that he's planning on going anywhere anytime soon. But for the past 25 years, the 76-year-old retired engineer has lived with Parkinson's disease. Slowly, but surely, the disease infiltrated his body, messing with his balance and causing stiffness in his limbs. Now, it's also affecting his voice and slowing down his mind.
"Everything seems duller than it used to be," says O'Donnell, who lives in Sun City, Ariz. "I have nighttime tremors, trouble being understood, and my memory is failing. I'm not as sharp as I used to be. I used to be really funny, but now I can't remember punch lines."
O'Donnell is one of the more than 10 million people worldwide living with Parkinson's disease. This progressive, neurological movement disorder occurs when nerve cells in the brain don't produce enough of the chemical dopamine. While currently there is no cure, numerous medications and therapies — including art therapies — can help treat the symptoms. Those symptoms include tremors, rigidity of the limbs, slowness of movement and gait or balance issues.
"The movement problems in Parkinson's are (isolated in) a very small part of the brain," explains Dr. Holly Shill, a neurologist who specializes in the treatment of involuntary movements such as the twisting, writhing muscles sometimes experienced by Parkinson's patients.
"What's remarkable is the rest of the brain, in terms of movement, is relatively spared. So the idea of using therapies like expressive arts is that they really tap into so many parts of the brain that can be used to guide movement effectively."
A visiting member of the Mark Morris Dance Group leads Ballet Arizona's Dance for PD class for patients of the Muhammed Ali Parkinson's Center. The Mark Morris company created the dance program to facilitate movement and balance in patients with Parkinson's disease.
Barrow Neurological Institute
Shill directs the Muhammad Ali Parkinson Center at Barrow Neurological Institute. The institute is part of Dignity Health St. Joseph's Hospital and Medical Center in Phoenix. O'Donnell is a patient at the center; he first learned to paint in classes there. The center is considered to be one of the most comprehensive facilities in the world for treating Parkinson's, with outreach programs for both English and Spanish speaking patients, including "expressive therapy" workshops in art, music, drama and dance.
"We don't think we're doing anything about the progression of the neuronal degeneration that is happening, but the idea with these therapies is that you're actually enhancing the plasticity of the brain to sort of take over that function as best as possible," says Shill. "It's essentially reducing the disability and lessening the progression from that standpoint."
Freedom to play
The Ali Parkinson Center offers painting workshops for Parkinson's patients and their caregivers. The class meets with an instructor for 90 minutes weekly for five weeks. The cost is $30 per person or $50 per couple; scholarships are available for those in need. Other expressive arts classes are free, such as a beading workshop that focuses on jewelry making and the Parkinson's Play Reading Society, held off-site in conjunction with The Valley of the Sun Jewish Community Center in Scottsdale, Ariz.
The goal of the theater workshop isn't to develop the acting chops of participants; rather, it is to improve control of facial expressions, exercise the voice, and enhance mental processes such as attention, concentration, mental flexibility, and memory, says Ali Parkinson Center recreation therapist Darolyn O'Donnell. "Plus, it's fun," she adds.
"Everyone deserves the right to play no matter their age, disability or illness. Many generations grow up thinking play is only for the young. But play can provide a freedom — that experience when you don't know what time it is because you're so lost in what you are doing.
"Art is a way people with Parkinson's can give back, when the disease may have taken abilities away," she says. "You might not be able to drive or go grocery shopping, but you can create a beautiful painting to hang on the wall, or act in a play or sing with a choir."
Song and dance
Shill notes that three-quarters of Parkinson's patients have difficulty speaking as the disease progresses. That's why singing, which addresses voice and communication problems through breathing, stretching and postural activities, can be so effective. So, in addition to voice classes at the Ali Parkinson Center, professionals there encourage those interested to join Tremble Clefs, a nationwide singing program for Parkinson's patients and their partners, or, for Spanish speakers, Voces Unidas. No audition is required.
The Muhammad Ali Parkinson Center's Voces Unidas Choir performs in April at the Mexican Consulate in Phoenix in recognition of Parkinson's Awareness Month. It is the only choir for Hispanics with Parkinson's disease in the country.
Barrow Neurological Institute
The Ali Parkinson Center also offers Parkinson's Dance, in conjunction with Ballet Arizona. The program is modeled on Dance for PD, which was developed by the Mark Morris Dance Group in Brooklyn, N.Y.
The Phoenix class is taught at a dance studio by a professional dance instructor who has completed the Dance for PD training workshop. Darolyn O'Donnell explains that the classes begin with a seated warm-up leading into standing work at the bar. Standing work provides the chance to improve balance and practice connecting one movement to another, to gain a measure of control over the amplitude and scaling of movement — something that people with Parkinson's may have trouble with. The last part of the class is devoted to learning movement phrases that take the dancers across the floor.
Countering depression and isolation
John O'Donnell and his wife, Karen, who is his primary caregiver, have taken several painting classes at the Ali Parkinson Center. Both maintain they had no art skills or talent when they began. That's a familiar refrain, says Claudia Martinez, Hispanic outreach coordinator at the Ali Parkinson Center.
"I tell them even though you may be experiencing losses with your Parkinson's disease that doesn't mean there aren't many things you can still gain or enjoy," says Martinez. "We want them to explore new things that challenge their brain, like painting.
"We have a very playful and unintimidating approach. We paint not just with brushes but also sponges, masking tape, even dried flowers. Soon they start to discover they are able to do more than they thought. Many of them also express that painting is a great tool for relaxation and stress management."
Shill notes that feeling committed to a project provides Parkinson's patients with a renewed sense of purpose and increases their self-esteem. It also helps to reduce depression and isolation, which are often by-products of the disease.
"When people feel an attachment to something they work at it and it makes them feel better," says Shill. "There's also a social aspect of getting together. A lot of these people become friends over time. Caregivers also are happy knowing their person is doing something positive about the disease, and at the same time, they get a little break. There are a lot of positive benefits from the standpoint that feed the soul, and not just the clinical, medical aspects."
Karen O'Donnell agrees. "As a caregiver 24/7, my world has become a lot smaller and more isolated. The art classes allow John and me to be together but to work independently with a support staff that understands the limitations."
Ali center strikes a high note of cultural competence with Hispanic patients
Corina Villalobos, left, and Ruby Rendon, share a sweet mother-daughter moment. Rendon is the primary caregiver for her mother, whom she says had become much more engaged with life through movement and singing programs at the Muhammad Ali Parkinson Center.
When Claudia Martinez started with Dignity Health's Muhammad Ali Parkinson Center 11 years ago, she quickly realized that what worked for Anglo patients diagnosed with the disease didn't necessarily translate to their Hispanic counterparts.
Hispanics are at increased risk of developing Parkinson's disease compared to other minorities, according to a 2010 report by Washington University in St. Louis. About 30 percent of the population in the greater Phoenix area is Hispanic.
"We needed to embrace the Hispanic culture and their diversity," says Martinez, who is the Hispanic outreach coordinator for the Parkinson's treatment center, which is part of Dignity Health's Barrow Neurological Institute in Phoenix.
"That meant creating new services specific to the Hispanic culture," says Martinez. "We don't use translators. All of our Hispanic outreach programs are delivered in Spanish in a culturally sensitive way."
As an example, Martinez points to disseminating information to newly diagnosed Parkinson's patients. For English-speaking patients and their caregivers, the Ali Parkinson Center holds educational classes called PD 101 and PD 202. The 101 classes introduce participants to basic neurology and the symptoms of Parkinson's disease as well as treatments and medications. The 202 section delves deeper, concentrating on the most bothersome non-motor symptoms affecting quality of life.
"A lot of Hispanic participants haven't done college in this country so PD 101 means nothing to them," says Martinez. "Instead we cover the same material, but we call it 'Desayunos del Parkinson's.' We invite them to come and have breakfast and bring their families. We interact and eat and then we start the class.
"We do a lot of things around food in the Hispanic culture."
Support groups also are tailored to make Hispanic patients with Parkinson's feel more welcome. "We call them 'Comadres/Compadres,' which means good friends or good pals in Spanish," Martinez explains.
"Many times, the idea of a support group is not well-accepted in Hispanic culture, especially when you are new to the group," she says. "It's difficult to come to a room full of strangers and share concerns over very personal issues. That's just not something done among many Hispanics. Often, there is a loss of pride in needing help and not being able to do the things they were able to do before Parkinson's.
"We want our Hispanic Parkinson's patients to feel comfortable, remove all barriers and let them know we understand where they come from."
Ruby Rendon recalls how her 69-year-old mother, Corina Villalobos, was reticent to leave her home after she was diagnosed with Parkinson's disease 11 years ago.
"She wouldn't go anywhere because she didn't want people to see her trembling," says Rendon, a wife and mother of three who also serves as her mother's primary caregiver. "She felt such a loss at not being able to carry her own weight. She felt as if she would become a burden."
Today, says Rendon, her mother is much more engaged and a lot less depressed, thanks to the Ali center. She has taken several painting workshops there, all in Spanish, along with a Saturday morning yoga class. She also has made many friends singing with 'Voces Unidas,' the only choir for Hispanics with Parkinson's in the country. The group, which rehearses weekly for two hours, performs in the greater Phoenix area. Choir members practice breathing and voice exercises to keep their communication skills strong. No audition is necessary to participate.
"They have their own CDs and DVDs," says Martinez. "Members really enjoy the camaraderie and working together. The main focus is not to become great singers but to maintain their ability to communicate so that they can be active in their community and with their families."
As a caretaker, Rendon, too, has become very involved as a health promoter, or health promotore, for the Ali center. She helps educate Hispanic patients with Parkinson's about the disease and does so in 13 weekly sessions conducted in the patients' homes.
"These patient navigators are Spanish-speaking volunteers from the community whom we train," says Martinez. "They work in a storyteller format, engaging (Hispanic) Parkinson's patients to tell their story.
"It's about building relationships and gaining trust," says Martinez. "We try to meet our Hispanic Parkinson's population where they are and hope that over time, we can remove whatever barriers exist and make sure they get the best care possible."
— ELLEN FUTTERMAN
Ali put the weight of his philanthropy and celebrity into Parkinson’s center
Muhammad Ali may best be remembered as the world's greatest heavyweight champion, but his legacy extends far beyond the boxing ring. As a humanitarian, he was a fighter for many causes, including finding treatment advances and a cure for Parkinson's disease, which he lived with for 32 years, until his death in 2016.
Muhammad Ali and his wife Lonnie Ali, right, attend the 2009 ribbon-cutting reception when the Muhammad Ali Parkinson Center moved to its current location in the Lonnie and Muhammad Ali Pavilion at Barrow Neurological Institute, part of Dignity Health St. Joseph’s Hospital and Medical Center in Phoenix. Barrow Neurological Institute
In 1997, Ali helped establish the Muhammad Ali Parkinson Center in Phoenix, a clinic, outreach and research center dedicated to the wholistic treatment of patients with the disease. Its walls are adorned with photos of the champ in his prime. Including repeat visits, the center logs about 10,000 patient visits each year and provides cutting-edge treatment for people with Parkinson's disease and other movement disorders.
According to Dr. Holly Shill, director of the Ali Parkinson Center, Ali became interested in supporting the facility and lending his name due to a fondness for his Parkinson's disease neurologist, Dr. Abraham Lieberman, and the promotional efforts of a Phoenix insurance salesman and philanthropist, Jimmy Walker.
Walker began organizing an annual Celebrity Fight Night fundraiser in 1994, which over the years has raised more than $85 million, with the Ali center as primary beneficiary. Recognized today as one of the nation's elite charity events, Celebrity Fight Night attracts celebrities and professional athletes from all over the country for an evening filled with incredible auction items and live musical performances.
"Jimmy Walker and Dr. Lieberman, who was the founder of our center, approached Muhammad some years after his diagnosis and asked if he was interested in being a part of this," says Shill, explaining that Ali and his wife, Lonnie Ali, had a home in the Phoenix area. "Fortunately, for us, he said yes, and over the years, they have been very supportive in helping us to what we do."
Ali cut the ribbon in 2009 when the center moved from a 5,000-square-foot space to its current, much larger and recently expanded 26,500-square-foot facility at the Barrow Neurological Institute on the campus of Dignity Health St. Joseph's Hospital and Medical Center. He and his wife also regularly attended the Celebrity Fight Night in Phoenix and other special events at this namesake center.
"He said to us, 'Take care of my folks,'" says Shill, referring to the more than 60,000 Americans diagnosed with Parkinson's disease each year. "I think one of the things most appealing to Muhammad was our mission to take care of all people with Parkinson's, regardless of their race, backgrounds, or ability to pay. He wanted us to help make life easier and enriching for them."
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