When You’re Smiling
How a Non-Profit Uses Music to Mend Minds with Neurodegenerative Diseases
Carol Rosenstein, Founder and Director of Music Mends Minds (MMM), singing with husband Irwin Rosenstein.
By Dano Nissen
The drumbeat of John Philip Sousa’s marching music woke up the benighted regions of Irwin Rosenstein’s brain with a lightshow of firing neurons. He tapped along in 4:4. But that’s about all he could do.
Somewhere in those withering memory cells was a young Irwin in the marching band at University of Pennsylvania. He played the saxophone. It was the 1950s. In 2006, Parkinson’s came for Irwin’s basal ganglia and substantia nigra. Three years later, Dementia came for his hippocampus.
In 2020, Irwin is practically non-responsive. When he hears Sousa’s Stars and Stripes Forever, though, accompanied with an “I love you” from his wife, he can muster a thumbs up.
“I can see a full distance down a continuum of fifteen years,” Carol Rosenstein says of the amount of time Irwin is expected to live post-diagnosis. “It’s pretty close to the end and the beat still registers.”
Irwin is Carol’s husband. They met after Carol had put an ad in the singles’ column in the newspaper. “I had ninety responses and Irwin was the one of ninety,” she says.
In earlier stages of Parkinson’s and dementia, Irwin would march around the house like he used to do on the 50 yard line for the Penn Quakers. The marching music, “that’s what has ignited his engines everyday to get out of bed,” says Carol. Now, he can only tap.
Carol watched her husband’s mental and physical faculties precipitously decline as he slid further down the continuum. In 2014, Irwin’s Parkinson’s medications began inducing hallucinations.The doses were lowered, leaving a weakened buffer to his neurodegeneration.
Then Carol watched as Irwin played piano.
Some of that marching band Irwin, that one-out-of-ninety Irwin, was brought back. “What am I looking at?” she thought. She witnessed him “re-engage with his environment.” The doctors told her, “You’re watching the power of music change brain chemistry.”
Recognizing the regenerative power of music, Carol put out feelers to convene others with neurodegenerative disorders into a group musical healing experience. Around thirty strangers showed up at a school in Culver City. Carol rolled out a banner she had made at a print shop; it read: “Music Mends Minds.”
“Four souls came up out of the thirty,” says Carol. “One went to the Steinway piano. One to the drum kit. Irwin pulled the saxophone off the wall full of a myriad of instruments. One brought out a harmonica from his coat pocket. Four souls bonded as musical brothers.”
That jam session of four strange souls rejuvenated by music gave birth to Music Mends Minds’ flagship band: “The Fifth Dementia” (name credit to Carol).
Today, Music Mends Minds is a non-profit that serves hundreds of people with neurocognitive disorders around the world. The Fifth Dementia has sister and brother bands spread around the continental United States and overseas—in the United Kingdom, Canada, and Rwanda. Members typically come together with their families to sing and play music at local houses of worship or schools. The pandemic has moved these outings to Zoom.
I sat in, or logged on, to a Zoom session on Monday, August 3rd. The music therapist and zoom host Laura Fonseca, who works with Meli Music, started the group off with a warm up “mmmmm.” Muted participants warmed up their voices with a cacophony of silent mmmmm’s across the Zoom mosaic, each tile providing a window into the pictures lining the living room wall, or a background sighting of an aide, or a family member mmmmm’ing in unison.
Pre-pandemic, participants would sing and play music in groups. In virtual times, internet lag has consigned everyone to go solo. Inter zoom account harmonies are a mess. They’ve tried it.
Laura un-muted eager soloists and some intra zoom account duos to take their turns. They were practicing their songs for an upcoming CNN feature on August 7. One participant performed “When You’re Smiling.” He opened, “See if this song brings back something.” He took out his trumpet and played.
“When You’re Smiling” was written in 1928 by Larry Shay, Joe Goodwin, and Mark Fisher. The song has been covered by many artists over many decades: Louis Armstrong, Dean Martin, Rufus Wainwright, Billie Holiday, Fats Domino, Louis Prima, Frank Sinatra, Ella Fitzgerald, Duke Ellington, Nat King Cole and Michael Bublé have all played the tune. Each person in the zoom room could have been taken to a number of different places and decades, listening to that song, by any number of different artists.
After finishing the song, he put down his trumpet and said, “I hope that brings back a memory.”
Looking over the rows of Zoom rectangles, I found that the individual smiles had blurred into a gestalt of unadulterated joy. It wasn’t that everyone was pining for earlier, better years, it seemed. Rather, it looked as if they were all luxuriating in the great power that music has to restore the mind. It’s about reclaiming memories, not reliving them.
“Reminiscence is not the goal of the group,” says Laura. The goal is to move forward, to improve. “I can visibly see there’s a difference in the neurochemistry,” says Laura. She can explain to participants and herself the science behind it all. Musical expression releases oxytocin and dopamine. Slower songs trigger the release of serotonin. And so forth. “It’s one thing for me to say that to someone, but for them to feel those physiological responses themselves—that’s beautiful,” she says.
After the red mute icon disappears, participants burst out of the gate with full confidence. Some who are barely verbal can belt out Sinatra lyrics with perfect recall. Others, with Parkinson’s tremors, can sway soundly and spontaneously to a Dean Martin tune.
Carol says many new participants come in feeling alone and full of self doubt. But music can also mend the psyche. She says, “The diagnosis comes and these people are scared out of their wits. Phone stops ringing. Doorbells stop ringing. People treat you like you’re a leper. People that were ostracized have come together and are joyful. They relive a new life that has been thrust into their laps.” She adds, “We have watched these people in quarantine. That’s total isolation. But even on Zoom, you’re watching them sparkle. Personalities continue to flower. They have the courage and confidence to be able to be un-muted and have their moment of open mic, to be able to sing. I am floored every single session.”
Sam and Paula Namer, a married couple, filled one of the Zoom tiles during the session. They sang their signature duet: “La Vie En Rose.” It’s a classic 1940s song in French, one of the six languages Sam speaks.
Sam was born in Istanbul, Turkey, in 1926, three years into the post-revolution rule of Mustafa Kemal Atatürk. He was stationed in the country during World War II as a cavalry captain. The couple keeps a black and white photo of a young Sam donning a Turkish military uniform on a rearing horse.
He lived in Cuba when Fidel Castro overthrew Fulgencio Batista’s regime and took control of the island. Sam’s business and savings, too, fell under control of Castro. Penniless, he fled to the United States. His children from a previous marriage, who had also fled Cuba for the US, were being held in foster care until Sam could earn a supportive income and find housing. He got work as a janitor. “I was working at night to clean the factory. When the workers would come back the next day, it was clean. That was my job,” he says. He was reunited with his children and rebuilt his wealth from scratch. “ There’s no better country,” he says of the United States. “There’s nothing to discuss.”
In old age, Sam’s peripatetic lifestyle has slowed down; the radius has shrunk. Before the coronavirus pandemic, Sam and Paula would frequently go out to dinner and the movies. Their world is even smaller now: the confines of their house. But, they can still see faces from Africa to Europe to a few traffic-heavy LA miles away on the Music Mends Minds Zoom every week. Sam has lived through a World War, a revolution, a putsch, and personal poverty. Yet, he says the virus is worse than all of that. “This is not the America I was dreaming I’m going to come to,” says Sam. “The only wish I have: when it finishes, we’re going to have a better America.”
Sam was diagnosed with dementia five years ago. Paula sat by his side during our interview. She repeated my questions to him and kept him on track when he recounted his life. He wore a fedora and spoke in simple sentences, with a Turkish accent smattered with multi-national affects he picked up along the way. After we were done, Paula shared with me a poem she wrote earlier this year, titled “My Husband is Leaving Me”:
My husband is leaving me,
Tho not by his design,
My husband is leaving me,
The man who was all mine.
Day by day,
Inch by inch,
He vanishes from me
Moment by moment,
Step by step,
To a world I cannot see.
What is this rare and frightful thing,
That’s taken his keen mind,
How could it happen,
Just like this,
That I am left behind.
I try to keep a happy face,
And laugh with him when able,
I try to keep his spirits up,
And keep him at my table.
But I know that surely
The end is near
And I must face the day,
That I am alone
Without my friend
My lover and my dear.
My husband is leaving me
Tho not by his design,
My husband is leaving me
And I am right behind.
Another one of the Zoom tile inhabitants during the session was Don Gettinger. He sang “All of Me” by Billie Holiday. He is also one of the directors on the governing board of Music Mends Minds. He describes his relationship with the non-profit by imitating the old slogan for Hair for Men Ads. “I'm not only the Hair Club president, but I'm also a client,” mimics Don.
Don is in the early stages of Parkinson’s disease. “I’m helping them. They’re helping me. It’s an equal exchange,” he says.
Don was not always a singer. He used to be a sporty Jewish kid from Baltimore. “When I went to the glee club in school, the first thing we sang were songs about Mary bearing Jesus Christ. I felt really uncomfortable about that. I didn’t go to the glee club. I was more of a jock,” says Don. Don played lacrosse at Yale and still remains physically active.
“Now I have to work for it. You have to relearn what you took for granted before,” says Don. “There was stuff that you knew how to do. Now you don’t know how to do it anymore.”
A few years ago Don tried throwing a baseball, but the mechanics broke down. “I didn’t know how to do it anymore,” says Don. “I couldn’t physically coordinate it. It took me a while. I used to be able to throw a baseball from the outfield to home plate.” He visited with a nephew, who was an active baseball player. Don had to ask him, “How do you make the throw?” They ran through the motions until Don could relearn the muscle movements that were once automatic.
Don’t father also had the disease. “They told him, ‘Don’t take too many risks.’ Now the prescription is exercise, exercise, exercise,” he says. “Singing and vocal exercises make a difference in my voice and how open I can be.”
But the effect of music can be difficult to measure. Music can, at best, only slow down the insurmountable tide of neurodegeneration. He says, “It’s hard to know if you’re doing something and it doesn’t get worse. When they tell you that you have Parkinson’s disease, they say it’s a degenerative condition that’s just going to get worse.”
Don Gettinger
Before Don’s diagnosis he had a “zigzagged” career as a Wall Street lawyer, an HBO executive and professional actor. He says, “I was in the entertainment business because my father was a movie theater owner. I needed to identify with him in a very unspoken way.” Later in his career he became a wealth planner and has recently retired.
Don recommended I read Oliver Sacks’ “Musicophilia.” Sacks is a prolific bestselling author who gives humanity to the cognitive diseases he profiles by writing with the curiosity of his patients’ lives first, and then of the scientific curiosities of their diseases. Robin Williams captures his gregariousness and good nature in the 1990 film à clef “Awakenings,” based on Sacks’ memoir of the same name. In “Musicophilia,” Sacks writes, “The Parkinsonian is stuck, so to speak, in a subcortical box and can only emerge from this with the help of an outside stimulus. The most potent un-locker here is music.”
Here we are during a global pandemic and Irwin, Sam, and Don are all together making music, at different stages of their respective neurodegenerative diseases and in different physical locations. That’s all thanks to the impresario, Carol Rosenstein.
As my final question, I ask Carol if music ever triggers memories of her days with Irwin before the diagnosis. She could’ve told me how a certain song brings back memories of their “charmed life.” They travelled the world. The Rosentein duo were the “Jetsteins” back then, as she dubs it. “Wherever a discount ticket took you, we were there,” she says. The “Jetsteins” turned into the sedentary Rosenteins after the diagnosis. Perhaps there’s a song that Carol hears that takes her back to a romantic outing in a foreign country with Irwin, when both of them were young.
But that’s not what she hears when listening to music.
“With my wisdom that comes with 75 years on this planet: you can’t live in yesterday, because it’s gone. The only moment that you have and I have that’s for keeps, and for real, is this moment right now. Why go back? You’re going to think about loss. It’s about gain. What today offers you is an opportunity to think positive, to think joy, to think sunshine. I’m grateful—and as much as I have on my plate, and god only knows I have a huge load now—that I’m carrying this project. The greatest joy that I had when I woke up this morning—other than last night’s sleep was better than most—is that I woke up on the right side of the grass. What a gift. Regardless of all of the negatives around me, I’m making positives around me. Otherwise I’d be in a heap in the corner of the room wishing I were dead. So, consequently you keep on having to pull yourself into the moment. And to see that glass half full, because if you don’t, you go down with the glasses half empty.”
She tells me this with a big smile.
Dano Nissen is a journalist who has covered everything from red carpets to World of Warcraft romance to Kim Kardashian’s Twitter. He graduated from UC Berkeley in 2018 and had a hell of a time. What he loves most in the world? The Big Lebowski and memes, in that order.