Jo Rosen is a powerhouse—someone who knows how to make lemonade out of lemons.
Rosen was born in Minnesota, the seventh of nine children. At the age of 17, she had two opportunities: She could go to Alaska, or she could go to California. She chose California—in part because she knew someone in the state. Unable to initially afford college, Rosen started a business in her 20s, because she wanted to be in charge of her own destiny. It was a bookkeeping company that evolved into a financial management business.
Rosen went to Santa Monica City College to sign up for accounting classes, but she was told she could not attend, because she lived three blocks out of the district. Undeterred, Rosen spent hours at home poring over the books she’d already purchased, and learned it all on her own. Rosen took extension classes at Loma Linda University, and eventually achieved great success as a financial manager.
At the age of 35, she met her true love, Alan Rosen, on the golf course; they married in 1990. Rosen relocated from Los Angeles to Alan’s Palm Desert home, where he’d retired after a successful career as a commercial architect.
A year before their wedding, Alan was diagnosed with Parkinson’s disease. Rosen’s mother had also battled the disease.
“I didn’t pay attention to what was going on with Mom and Parkinson’s,” she said. “I attributed all her symptoms to old age. With Alan’s situation, it hit me: This must mean I need to check into this Parkinson’s thing.”
Rosen had trouble finding good information. Some doctors wouldn’t talk to her, because she was “just” a caregiver. She couldn’t find the kind of support group that she wanted—so she created it, even though she knew nothing about nonprofits. The Parkinson’s Resource Organization (PRO) was born.
“I just decided there had to be a way to teach other people,” Rosen said. “I made a deal with God: If She would teach me everything I needed to know about quality of life for Alan, I would share it with the world. I did that work for 35 years, and I grew that entity from this little nothing into a very well-known national organization.”
After about 34 years with PRO, Rosen decided she wanted to hand off day-to-day management duties, to focus more on speaking engagements and to build a resource directory called the Wellness Village. Not long after, the board of directors decided to let her go.
“It was one of the more hurtful things I have ever gone through,” Rosen said. “My resignation became effective at the end of December last year. … I had worked extraordinarily hard all those years for virtually no money. I was really bullied.”
Rosen has started a new organization, the Neuro Wellness Foundation, whose mission is to improve the quality of life of those with Parkinson’s, autism, multiple sclerosis and Alzheimer’s until cures are found.
Because of her knowledge and experience, Rosen received a three-month contract from PRO to do speaking engagements and handle the support groups and new cases that came in.
“After three months, I asked the executive director if she was going to renew the contract,” Rosen said. “She said they can’t afford my services. This was despite the fact that I’d left them with $1.5 million in the bank!”
As painful as this all was, Rosen said she firmly believes that everything happens for a reason.
“I love what I do,” she said. “I love helping people, and I have amassed a tremendous amount of knowledge and resources in my 34 years with Parkinson’s Resource Organization.”
Rosen has started a new organization, the Neuro Wellness Foundation, whose mission is to improve the quality of life of those with Parkinson’s, autism, multiple sclerosis and Alzheimer’s until cures are found. Her team members are located all over the United States, so they communicate via phone call or Zoom.
In addition to supplying resources on a virtual basis, the Neuro Wellness Foundation is starting a subscription-based marketplace. The businesses in the marketplace will pay to be there, but it’s essentially free to the consumer. Excess revenues will be given back to the communities. If there’s someone, for example, with Parkinson’s who cannot afford a service, the organization will try to negotiate with the provider to get the price down.
“We’ll try to guide them through their journey,” Rosen said. “This just warms my heart. My dream is that we can make their quality of life the best we can for whatever time they have left.”
Alan Rosen’s journey was helped by his great partnership with Jo. He was willing to look for answers outside of Western medicine and the pharmaceutical industry. At first, Alan was not interested in exercise other than playing golf—but that changed when they found an adorable female personal trainer. Supplements and massage helped as well.
For 15 years, Alan was in good shape, but then the disease started progressing. His decline was quick in the last three years. Together, they made the decision that she was not going to be his caregiver, but his care manager; eventually, they had to bring in 24-7 care.
“I said to him, ‘As much as I love you, I do not want to change your diaper or bathe you, but I will manage the people who do,’” she said. “I teach that to caregivers. He passed away in 2007 at age 82. We had 18 magnificent years together. I would do it all over again.
“I would say that what I learned through this Parkinson’s journey is that there is support out there, but you have to look for it. Also, it’s not the end of the world. You can work through this.”
Rosen sums up her philosophy this way: “I think our purpose is to help others. The reward is how your heart feels at the end of the day.”
Bonnie Gilgallon also writes theater reviews for Independent and hosts a weekly radio show, The Desert Scene, on Mutual Broadcasting. Her website is www.bonnie-g.com.