Carol Rosenstein’s husband, Irwin, was diagnosed with Parkinson’s disease in 2006. Three years later, he was diagnosed with dementia.
With the progressive nature of the diseases, Irwin had ups and downs. Medication caused him to experience hallucinations. As his condition worsened and the couple grew increasingly isolated, Rosenstein said she could feel Irwin slipping away.
“Every day was like a roller coaster ride,” Rosenstein said. “When a terrible disease befalls a family, even your close friends don’t know what to say. It feels like you have leprosy because people don’t want to come near.”
June 2014 was a particularly difficult period for the couple, when Irwin was not responding well to medications. Then something seemingly miraculous happened: Rosenstein heard him playing the piano.
Irwin had played saxophone and piano throughout his life. But this was the first time she heard him play in the eight years since his diagnosis. Rosenstein observed that he seemed more aware, responsive, energetic and communicative.
“I was at my wit’s end, and finally something positive happened,” she said. “The music actually resurrected him.”
Rosenstein contacted a doctor to tell him what was happening.
“He told me that I was watching music change brain chemistry,” she said. “Playing the piano caused him to release dopamine, and that was giving him the lift. … I realized that no medications were more powerful than music.”
The experience led Rosenstein to start a band for Irwin and other people who have neurodegenerative diseases.
“We needed to get some musical buddies so we could all party together,” she said.
The band called itself The 5th Dementia.
“They were having so much fun playing music and socializing. … And people were jumping on to get involved,” Rosenstein said. “We never looked back.”
Since 2014, her nonprofit, Music Mends Minds, has created 20 bands across the country that have improved the quality of life for more than 200 people.
CNN’s Laura Klairmont spoke with Rosenstein about her work. Below is an edited version of their conversation.
CNN: After starting The 5th Dementia, what inspired you to turn this experiment into a nonprofit?
Carol Rosenstein: It didn’t take long before I recognized that we were on to something really grand. So, Music Mends Minds was born. We’re in the business of creating bands in different cities where we can find people with neurodegenerative diseases who love to play music and are ready to jump on and have a good time.
Bands practice once or twice a week. (It’s) a safe zone for patients, for caregivers, for family members and for the entire public to come to a rehearsal and feel the magic of music and change their moods. Everybody is high on life after a rehearsal. We also organize concerts a couple of times a year for all the bands. The concerts bring great pride to our musicians and singers and offers them an opportunity to shine again.
We’re jamming all over the country. We’ve reached patients that were lost and lived without music and then we introduced them to the magic of music, and they in turn came alive and have an extension on life.
CNN: As your husband’s dementia progresses, what are some of his daily struggles and how has playing music helped?
Rosenstein: People with dementia recognize that what they could do yesterday, they’re having difficulty doing today, even if it’s just articulating their wishes. They get tongue tied, their vocabulary is not accessible to them, and it’s very frustrating.
In Irwin’s case, it’s moving quite quickly now. His cognition is deteriorating. Irwin’s conversational ability is deteriorating quite rapidly. And as a spouse, you recognize it because your conversational buddy is not able to articulate like he’s been doing for over 30 years. And of course, I turn away and I’m heartbroken, because the reality is not pretty. But you have to be a rock and you keep on keeping on. We’re making every day count.
Science does show us today that playing a musical instrument is like a full body workout for the brain. It pushes natural neurotransmitters. Until science gives us a cure, we have natural medication available by playing music. The music has had such an impact on Irwin. It makes him more conversational and happier and more functional. The music resurrected him.
CNN: Your work isn’t just helping the band members. How do their loved ones benefit as well?
Rosenstein: Living with a spouse with dementia is a difficult journey. Loneliness is something very real in a household where there’s neurodegenerative disease. We are so close to all our members and their families. For caregivers to be able to socialize and make new, strong friendships, to love and hug and cry together is such a blessing.
We are no longer alone on this journey. We all understand the trials and tribulations confronting all of us, and there’s no explanation that anyone needs to give because we’re all in the same boat. We find that this program is a powerful support group. We create extended new families, and we’re just rocking. We sing at the tops of our lungs and just feel blessed that there’s music in our lives.
Want to get involved? Check out the Music Mends Minds website and see how to help.