Quad-Cities Actor/Musician/Artist Learns to Thrive With Parkinson’s
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The veteran actor-musician-illustrator (who was featured in the Black Box Theatre’s radio play in August) thinks he had symptoms of Parkinson’s disease (PD) before he was diagnosed last October. A longtime runner, Vaccaro said recently he got burned out running in 2019, and when he took a break, that’s when symptoms started.
“After a while, I started running again, and it was really hard coming back,” Vaccaro, 66, said. “I thought I was just out of shape, but it turned out the symptoms had surfaced.” Friends noticed his energy was down, he shuffled a bit when he walked and his speech was a little slurred.
“There were things I couldn’t do that I could do before,” he said of his athletic ability. While acting in “A Chorus Line” at Music Guild in 2018 (in which he played the director Zach), he noticed he had trouble dancing where he didn’t before. “I attributed it to being out of shape,” Vaccaro said.
“I noticed my handwriting was different,” he said. “With Parkinson’s, your handwriting gets very small, kind of a scribble. As an artist, I studied calligraphy in college. I always prided myself on my handwriting. Now, it was becoming scribbles. At the time, I was working five part-time jobs, working at two colleges, doing a lot of stuff. I thought, I’ve got to slow down. I’m always in a hurry; everything was done sloppily.”
“I finally discovered that it was partly because I had symptoms of Parkinson’s. My speech became a little slurred,” he said. “I’ve got to slow down and enunciate each word.”
After running for four decades – including many marathons and Bix 7 races — “I’ve reversed that inability to run,” Vaccaro said, noting one of the symptoms is stiff muscles. “I felt like a mummy. I tried to run and I just couldn’t. The flexibility wasn’t there. I couldn’t lift my knees; I had no endurance. I felt like my legs were going to collapse.”
Vaccaro started biking and that strengthened his legs, so he can run again. “I managed to reverse something that I didn’t think I could reverse. That’s why I want to meet with people and say, what has your experience been?”
PD is a neurodegenerative disorder that affects predominately dopamine-producing neurons in an area of the brain called substantia nigra, according to the Parkinson’s Foundation at Parkinson.org.
Symptoms generally develop slowly over years. The progression of symptoms is often a bit different from one person to another due to the diversity of the disease.
The disease is called a movement disorder because of the tremors, slowing and stiffening movements it can cause, and these are the most obvious symptoms of the disease, according to the website. But Parkinson’s affects many systems in the body and its symptoms are different from person to person.
There is no single test or scan for Parkinson’s, but there are three telltale symptoms that help doctors make a diagnosis: bradykinesia or slowness of movement, tremors and rigidity.
With Parkinson’s, this slowness happens in different ways – such as reduction of automatic movements (like blinking or swinging your arms when you walk); difficulty initiating movements (like getting up out of a chair); general slowness in physical actions; the appearance of abnormal stillness or a decrease in facial expression.
Nearly one million people live with PD in the U.S., which is more than the combined number of people with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease (or Amyotrophic Lateral Sclerosis).
Approximately 60,000 Americans are diagnosed with PD each year. Incidence of Parkinson’s disease increases with age, but an estimated four percent of people with PD are diagnosed before age 50. And men are 1.5 times more likely to have it than women.
Michael J. Fox (best-known as star of “Family Ties” and “Back to the Future”), now 59, was first diagnosed with young-onset Parkinson’s disease in 1991 at 29. Upon disclosing his condition in 1998, he committed himself to the campaign for increased Parkinson’s research, according to michaeljfox.org.
Fox announced his retirement from “Spin City” in January 2000, effective upon the completion of his 100th episode. Expressing pride in the
show, its talented cast, writers and creative team, he explained that new priorities made this the right time to step away from the demands of a weekly series, the site says.
Later that year, he launched The Michael J. Fox Foundation for Parkinson’s Research, which the New York Times has called “the most credible voice on Parkinson’s research in the world.” Today the world’s largest non-profit funder of Parkinson’s drug development, the foundation has galvanized the search for a cure for PD.
Since its founding 20 years ago, the foundation has invested more than $650 million in research. Fox also is the bestselling author of four books. His most recent memoir, “No Time Like the Future: An Optimist Considers Mortality,” will be released on Nov. 17. “A Funny Thing Happened on the Way to the Future,” a compendium of wisdom for graduates, was published in April 2010.
Other notable figures with Parkinson’s
The Parkinson’s Foundation says while more than 10 million people worldwide live with PD, the general public’s understanding of symptoms is often limited to what is seen in the media. Many people only know Parkinson’s as the disease that Fox has, or Muhammad Ali had.
However, when a household name such as Ali or Fox announces their diagnosis, Parkinson’s coverage briefly spikes. While a diagnosis is upsetting, when notable figures are public about their disease, the coverage helps increase awareness and understanding, while personalizing
Parkinson’s for those with no other connection.
- Linda Ronstadt (diagnosed 2013): Over her 44-year career, Ronstadt received 11 Grammys and an Emmy while selling more than 100 million records. She retired in 2011 and announced that she had Parkinson’s in 2012, resulting in the loss of her singing voice. She has said that her voice had likely been affected for many years prior to her diagnosis. She was honored with a National Medal of Arts by President Obama and currently lives with her son.
- Alan Alda (diagnosed 2015): An actor, director, screenwriter and author, Alda is best known for playing Hawkeye Pierce in the television series “M*A*S*H*,” and diagnosed with PD in 2015. He made his diagnosis public in 2018, saying “I was diagnosed three-and-a-half years ago and I’ve had a full life since then.”
- Muhammad Ali (diagnosed 1984): He was diagnosed with Parkinson’s just three years after retiring from boxing. He worked to raise funds for Parkinson’s research through the 2000s, even bearing the Olympic Flag in 2012. Ali was a longtime friend of the Parkinson’s Foundation. He elevated Parkinson’s awareness around the world and helped establish the Muhammad Ali Parkinson Center, in Phoenix, Ariz.
- George H.W. Bush (diagnosed with vascular parkinsonism 2012): The 41st President of the United States and two-time vice president under Ronald Reagan lived with vascular parkinsonismfor several years. The World War II Navy veteran kept his hopes high and battled Parkinson’s-like symptoms. At the time of his death at age 94, Bush was the longest living president in history.
- Neil Diamond (diagnosed 2018): The popular singer/songwriter – who opened the former Mark of the Quad Cities in 1993 — went public with his diagnosis after he announced his cancellation of the third leg of his 50th Anniversary tour in January 2018. Fans of the Golden Globe and Grammy winning Hall-of-Famer donated their tickets to Parkinson’s research on his behalf, many through Parkinson’s Champions. Diamond, now 79, still plans on making music.
Vaccaro wants to start an event in the Q-C to raise awareness about PD. “I want to find a way to get that launched around here, to be an advocate, to be an active force.”
“I don’t think it’s widely known how it exists,” Vaccaro said of PD. “I want to make it something that’s known. I’m just as athletic as I was before. I’m still doing music when I can. The pandemic has been more of an interruption than the PD has.”
“I think a lot of people see Michael J. Fox as the representative and he’s done amazing stuff,” he said.
Vaccaro was diagnosed much later than Fox, at 65, which is more an average age for diagnosis, he said. Alan Alda was diagnosed when he was 80. Linda Ronstadt was diagnosed at age 66, and couldn’t sing anymore.
“I want people to know that it’s not a death sentence,” Vaccaro said. His PD is very mild, and he’s thriving with it. “I’m working, teaching. It doesn’t put me on the couch.”
“What I’m saying is, you can’t cure it. You can’t win the war, but you can win a lot of little battles along the way,” he said. “I’m still running.”
How to control it and thrive
There are medications you can take to control PD, but Vaccaro doesn’t because he wants to avoid the side effects. He’s dealing with it mainly by eating healthy, exercising, taking supplements and re-training his brain to do certain things to write clearly and speak clearly.
“Certain skills you have that are going to be inhibited by the symptoms of Parkinson’s, you just have to find a workaround, and you can,” Vaccaro said. “That’s what I want to say to people – it’s not the end. It doesn’t even have to be a bump in the road. There are ways to deal
with it, ways to compensate for it. You can still be as vital a person as you were before.”
“I was very active – musically, with theater, running and all that stuff,” he said. “You can remain just as vital, for as long as possible. I don’t know where it’s going to go. Everyone progresses differently. You have a Michael Fox and an Alan Alda; you’re diagnosed at different times in your life. You approach it differently, the results are different.”
“For me, I’m doing pretty well, and I think my lifestyle has something to do with it,” Vaccaro said. “I’ve always been physically active, eaten healthy, and always lived a healthy lifestyle. I think that helped delay it as long as it did. I think it’s helping me now, to remain vital and active. Most people don’t even know I have it.”
He teaches virtual English Language Arts 12 hours a week for Scott Community College, which he’s done since spring 2019. Students have a choice whether to attend in person or online.
One couple he teaches is Vietnamese, and they work during the day, so he teaches at night for them.
“Even after the pandemic is over, we’re going to continue to do that,” Vaccaro said.
He was the foley operator (sound effects) for “The 39 Steps” radio play at Black Box Theatre in August, similar to what he previously did there for an “It’s a Wonderful Life” radio play.
“That went great; I had a blast,” Vaccaro said of the most recent one. “I was so proud of the Black Box for being that adventurous and that creative. The show went well and lent itself to dealing with the pandemic issues because of the social distancing.”
“The microphones could be placed far away from each other, like an old radio show,” he said. “They’re reading from scripts and playing multiple characters. We didn’t have the person-to-person interaction you would have in a regular play. We were a safe distance away.
Everyone who entered the theater had to have their temperature taken – audience and actors.”
The actors all wore clear face shields, which were virtually invisible, Vaccaro said. “It was really very cool, very easy to do in a safe way,” he said. “I thought it was really cool the theater was taking on that kind of adventure, showing that it can be done. Theater won’t be denied, you know?”
“I have to commit to whatever I do – if I run, then I have to run,” Vaccaro said. “I have to concentrate more than I used to. Like the show, I was doing my thing out there and I couldn’t do it in a lackadaisical way. I had to be very energetic and on for the performance.”
It was his first indoor staged production since last year. Vaccaro was in the Black Box production of “Assassins” in August 2019, in which he played Charles Guiteau (who assassinated President James Garfield in 1881).
“I think it’s very cool the way Black Box has found a way to keep it alive,” he said of theater since July. Audiences have been appreciative, “that we’re being creative and doing it in a safe way, so people could have a break from all that was going on,” Vaccaro said.
“I was really excited to be part of it, and the performances were fantastic,” he said. “The thing most exciting to me was, we were making history. Everything we do now is making history. We’re living in the middle of history; you don’t always realize it when it’s happening. This way of doing theater, to me, was making history.”
He was planning to perform in the BBT musical “Pump Boys and Dinettes,” which has been postponed. Vaccaro said playing guitar is good
therapy, since “anything that is mind-body connected – running, tai chi, playing guitar, ballet – anything that causes your brain and body to connect to do something is good therapy.”
“Playing guitar is perfect, because my mind has to tell my hand what to do,” he said. “Sharpening that skill – communicating between body and mind – is really important, because Parkinson’s is a brain thing. It’s a breakdown where your brain doesn’t communicate with your body in the same way.”
His group, The Generations Band, is on break because of the pandemic, Vaccaro said.
“I’ve seen some outdoor events, where people don’t wear masks; they don’t keep their distance. It’s just as bad as being indoors,” he said. He’s working with a couple friends on playing outside for tips. “It can be done safely, and I just gotta play some music. It’s been so long since I’ve done anything.”
“All the opportunities I had, not only for social interaction, but for music, all that’s on hold right now,” Vaccaro said. “Part of the advocacy is, I want to do something. I don’t want to sit around and wait. I need to do something, so I’m trying to create opportunity.”
“It’s not only because I miss playing music, but it’s good therapy for me,” he said. “It’s a parallel, when you have PD, I think in my experience, I find that I have to challenge it. I have to push at it.”
“I think it’s mostly mental,” he said of overcoming PD. “I’m going to run again; I’m going to get out there with my band. There’s no alternative, I will do it. A lot of it, I just think that has a lot to do with it.”
Vaccaro hopes to start a benefit event for PD after the pandemic has past, and dreams of getting a celebrity like Alan Alda or Neil Diamond to speak for it.
“I want people to know, life doesn’t have to change that much,” Vaccaro said. “I know there are people with more severe symptoms. I can’t possibly imagine what it’s like to be in their shoes. From where I’m at right now, I know there’s a lot you can do, to minimize the symptoms, to deal with the symptoms. I went from saying I’m living with Parkinson’s, to say I’m thriving with Parkinson’s.”
“I want to do more than just live with it,” he said. Being active helps slows the degeneration, Vaccaro said.
“Things that I used to be able to do so easily are a challenge, but when I’ve changed my mindset to – this is a challenge, a task I’m gonna take on, I’m gonna not beat it but work with it the best I can. It kind of gave me a new purpose. Whether it’s a personal one, or talk to the Quad-Cities or the whole world, when you have a purpose, it drives you. I actually function better physically because I’m more driven.”
BBT owner admires his passion
Lora Adams, co-owner of Black Box Theatre, and director of “The 39 Steps,” admires Vaccaro’s passion on the issue. He will become a new board member for the nonprofit theater at 1623 5th Ave., Moline.
“We’ve discussed how we might incorporate what is going on in his life with regard to Parkinson’s within the context of things that we
produce or fundraising for Parkinson’s research,” Adams said.
“He is passionate about getting the word out regarding this disease, but he is certainly not looking for sympathy. I believe what he wants to do is to open people’s eyes to it.”
“I don’t know that there are very many people in our area who have made their diagnosis a cause,” she said. “The other thing I think he wants people to know is that it manifests itself in many different ways. So if anything, I think what he’s looking to do is to put a face in our area to Parkinson’s and of course to continue doing what it is that he loves to do — be that drawing, painting, running, playing guitar — and even with him doing those things now, the adjustments he has to make to keep his life as rich as he wants it to be.
“I think often when people are diagnosed with a disease, they make a choice of how they will live with it instead of how it will define them,” Adams said. “It’s my belief that Tom simply wants to remain Tom, and he also opens people’s eyes to how to live with Parkinson’s.”
With no history of PD in his family, Vaccaro said he doesn’t want to be pitied, comparing it to blind people he’s known.
“They don’t want you take their arm,” he said. “They’d rather have you tell them what’s ahead; if they want you to take their arm, they’ll ask. You don’t offer. The visually impaired don’t want you to do for them. They want you to enable them to do themselves. All I do is give them the knowledge to do it themselves.”
“It’s the same with me – I don’t want special accommodations, sympathy, anything like that,” he said. “I just want people to support and be
the way I am.”
“I don’t really know what I can do with the pandemic going on,” Vaccaro said. “We can’t hold a major event.”
Vaccaro has had a long career in TV broadcasting, theater and music, and has taught courses on film history at Black Hawk College, Moline. Also, for 35 years, he has provided audio description services at theaters for visually impaired audience members.
Blind or otherwise impaired audience members get wireless receivers and use an earbud to listen to Vaccaro offer narration, describing sets, costumes and actions of actors, while taking care to not talk over dialogue or songs.
“Our slogan is, ‘The visual made verbal,'” he said, noting he usually sits in an area where other patrons can’t hear him speak into a mic. “It’s like if you turn on your TV, turn away from the picture so you can’t see. How much did you miss?”
“It’s all about equality; I’m very much a person who believes in equality, inclusion,” Vaccaro said. “Theater should be based on our desire, not on our ability or disability. My favorite quote from somebody is, they said, ‘I feel like I actually saw the show tonight.’”
He treasures the communal experience people get through theater productions, films and live concerts.
“You go with people, talk about it, sit together, laugh together, and you cry together,” Vaccaro said. “It’s a reflection of the human experience.”
A life creating star portraits
He’s also created a special niche by his superbly accurate portraits (often pencil or charcoal drawings) of celebrities over decades.
The first one Vaccaro did was of Robert Kennedy, after he was assassinated in June 1968. Vaccaro, who then lived in Rock Island, was 14 at the time. “I had a fascination with the Kennedys. When I was about 6 years old, I got to meet John F. Kennedy when he was campaigning in Rock Island,” he said.
Bob Hope (1903-2003) was the subject of the first portrait Vaccaro got autographed. That happened in 1976, when the comedian was commencement speaker for Vaccaro’s St. Ambrose graduating class.
Each portrait takes about six to eight hours to complete. Early on, he hand-drew his copies, but in ensuing years, he has started making copies of the portraits, giving the originals to his subjects, then having them autograph the copies.
“They’re so nice about it,” Vaccaro said of the celebrities who have signed his portraits.
“Not that I’m on the level of Paul McCartney. But here’s my art; you bring your art,” he said. “We meet artist to artist, instead of just some guy handing him a piece of paper. That’s what I really enjoy about it, that personal connection. Usually it’s used to get to them, to get their attention.”
Among the subjects he’s drawn and received autographs from are Ringo Starr in 2000 in St. Louis, Peter Noone of Herman’s Hermits in 2001 in Dubuque, film star Mickey Rooney (1920-2014) in 2001 at Circa ’21 Dinner Playhouse in Rock Island, Davy Jones of the Monkees in 2011 in Bettendorf, and Mike Love of the Beach Boys at Milwaukee’s Summerfest a few years ago.
Vaccaro even has got to meet his idol – Sir Paul – twice, and has seen him perform live over 10 times, since his first as a kid in ’65 with the Beatles at Chicago’s Comiskey Park.
The first time Vaccaro met McCartney was in 2005 at a concert in Des Moines. Vaccaro, who was sitting in the 11th row, held up a charcoal drawing he had done of Paul and his then-wife, Heather, which got McCartney’s attention.
“He’d look over and smile, give me the thumbs-up. After the show, he autographed it for me. He was enthusiastic, energetic.”
Vaccaro met Paul and his then-fiancee, Nancy Shevell, in 2011 in Las Vegas at the Cirque de Soleil production of The Beatles “LOVE.” Vaccaro gave the couple a drawing he had done of them, and McCartney autographed a copy for him.
“Usually the picture opens the door. It’s personal,” he said of the many celebrity portraits he’s done that helped him meet the subjects. “When I saw Paul in Vegas, I was the only person he stopped for on the red carpet.”
“He put his arm around Nancy and said, ‘Nancy, you’re a star,'” Vaccaro recalled. McCartney and Shevell were married in October 2011 (Friday was their ninth anniversary, and the 80th anniversary of John Lennon’s birth.).
In 2012, Vaccaro did separate drawings of Paul’s older children — Stella, Mary and James — and brought them to St. Louis, hoping he’d get another chance to give them to the former Beatle.
Vaccaro saw Shevell at St. Louis’ Scottrade Center before the show, introduced himself, and gave her the drawings. He also made a poster of three copies that he held up from his seat during the concert.
During the last song, he walked down to the front row and held up the poster, and McCartney looked at him, smiled, and gave a thumbs-up sign. When Vaccaro got home at 4 a.m., he found an email from the ex-Beatle that said: “Just saw the lovely pictures of my kids you drew. Thank you very much. Cheers, Paul.” The email the star sent was from Shevell’s business account.
Of course, Vaccaro was among the sold-out crowd at the TaxSlayer Center in Moline in June 2019, for McCartney’s first-ever appearance in the Quad-Cities.
Like his idol, Vaccaro plays bass and sings. The Generations Band specializes in songs from the ’60s and ’70s, and they performed a pre-McCartney show that day at Rascals Live, Moline.
Vaccaro said recently that PD hasn’t yet affected his drawing ability.
“I haven’t had an opportunity to do any portraits recently, but I can tell that the skill will not be diminished. I still enjoy the portraits — just haven’t had any except for a couple of commissions. Music is occupying my life these days. I have plans to do a portrait for Mike Campbell of the Heartbreakers when he resumes his tour after Covid and one other idea.”
“I find that I’m more obsessed with exercise than before. My health has become more of a focus, if that is possible, and my daily life has to include doing something to that end. A 3-hour class is wearing on my voice more than before.”
“Daily life is very different since the pandemic began, so it’s hard to say how much of that is PD,” Vaccaro said.
Still, he said, the show must go on.