When Debbie Shapiro was diagnosed with Parkinson’s, her doctor’s advice was to take her medications, take it easy, and come back for another appointment in six months. Her response: “No way.”
Instead, she read everything she could about Parkinson’s and what steps she could take to feel her best. She learned, first through literature and then through real-life experience, that exercise is key to living well with Parkinson’s. She learned that many people in her hometown of Jerusalem and worldwide see Parkinson’s as an ending. And she learned how much she wanted to help them respond as she did to that notion: no way.
“Here in Israel, there are some people with Parkinson’s who don’t leave their homes,” Debbie says. “Many people feel embarrassed by their Parkinson’s, and they think there is nothing they can do but wait for the end and stay home. I wanted to shatter the stigma.”
Connecting her Community
As a first step, she organized a Parkinson’s event for her community. She and her grandchildren arranged the seating in a school auditorium and prepared for a small gathering of friends and family of people with Parkinson’s. “Right before we started, I realized we’d set up too many chairs, that not even half of them were going to be used,” Debbie says. “Then we opened the doors and saw a line of people stretching around the block waiting to come in. It was astonishing.”
They were there, she believes, because they had finally been invited to a place where they could talk openly about Parkinson’s.
Although Debbie had planned and advertised the event for Parkinson’s care partners and friends, more than 300 people with Parkinson’s joined the gathering, which was not only educational but deeply cathartic for almost everyone in attendance. “People were crying because they were so moved that they weren’t alone,” Debbie says.
“People had thought for so long, ‘I’m the only person in the world with this.'”
The entire night became about “breaking all barriers,” Debbie says. “It was a very, very emotional evening. People started to ask what they could do to better their situation. Everyone was asking for help. They asked what my organization was going to help them do.”
Debbie didn’t run an organization. She’d thought of the event as a one-time gathering to bring people together. But afterward, she felt called to do more. And Tikvah for Parkinson was born.
Tikvah for Parkinson
With a mission to provide the Parkinson’s community in greater Jerusalem with support and encouragement, to provide education for the Parkinson’s community, and to raise awareness of Parkinson’s among the general population and governmental bodies, Tikvah for Parkinson offers classes, support groups, lectures by Parkinson’s experts, and a community for people with Parkinson’s in Jerusalem who began to feel empowered and connected.
For the first few years, Debbie ran a brick-and-mortar center where people could take classes and attend support groups and other gatherings. However, with the arrival of the COVID-19 pandemic, everything changed, and the organization shifted to an online model. Although they were still offering dozens of exercise classes, speech and occupational therapy sessions, support groups, choir practices, lectures, and private sessions, they could only reach people with Parkinson’s who were online. And many people in Jerusalem are not.
Barriers to Access
“A lot of people joined the online classes, and many decided to buy computers so they could join us online,” Debbie said. “But there are many, many people in Jerusalem who don’t have access to a computer, or they don’t have access to the internet.”
And for numerous reasons. Many people in Jerusalem, Debbie says, don’t want to have internet access in their homes. They don’t want to have that influence in their house. They want families to play board games and have fun together rather than look at their phones.
For others in her community, it was not the desire to avoid the internet but a lack of computer skills that presented a barrier.
So, how do you share online resources and tools with a community that isn’t online? You get creative.
Working with a team of technology experts, Debbie developed a handheld device that contains Tikvah for Parkinson’s classes and events without the need for an internet connection. Because the devices connect through SIM cards that are built-in, the resources are available anytime, anywhere.
They are also incredibly user-friendly. You turn on the device, and a screen loads with the list of upcoming classes. If you click the button within 15 minutes of a class start time, you will be allowed into the class. If you’re not interested in that class, you go back to the main menu to see what else you might like to join that day.
“That’s all you can do with it. You can’t mess it up,” Debbie says. And to make it even easier for her community to use, she included stickers by each button to make it clear where users can adjust the volume, plug in earphones, and plug in the charger.
Debbie believes the devices will help people with Parkinson’s in her community get moving and enjoy the benefits of exercise and connect as well—which is just as crucial for living well with Parkinson’s.
Empowerment through Woman-Talk
One such connection can be seen through Tikvah for Parkinson’s “Woman-Talk” support group. Currently held online, the group invites women with Parkinson’s to share their stories—where they were when they were diagnosed, where they are now, where they want to be, how Parkinson’s has impacted their families and other areas of their lives. And how they respond when their community asks questions.
One member recently shared a story that empowered the others to advocate for themselves and Parkinson’s as a whole. “When people noticed that my hand was shaking, they’d ask what happened, why it was shaking,” she told the group. “Finally, I decided to start telling people the truth. One day I was in the pool with several friends, and this conversation came up, so I told them, ‘Well, I have Parkinson’s.’ And everyone reacted like I had said I was about to die. They all started crying on my shoulder. They acted like it was the end of the world. So, I went over by the lifeguard and borrowed the megaphone, and I said, ‘I want everybody to listen. I want everybody to hear it. I have Parkinson’s. And that’s it. Let’s go back to swimming.'”
The Woman-Talk members have built a bond through the screen that would have seemed impossible a few years ago. “We didn’t realize that we could become so close, that we could make such a strong connection even though it’s not in person,” Debbie says. “It’s one dimensional. But when you’re sharing what’s in your heart, it becomes much more than one-dimensional. We’ve become a real group.”
And although Tikvah for Parkinson is run according to Orthodox tradition, the support groups are inclusive and welcoming. More than half of the people who make up the Woman-Talk group are not followers of Orthodox Judaism. “They just love our group,” Debbie says. “We have some very secular group members who say they’ve never felt such a strong connection with other women. They love the feeling, the certain understanding that we all share.”
Filling a Community Need
Debbie says that with the founding of Tikvah for Parkinson and now with the creation of its new devices, she is reaching a specific niche in her community. For those interested in doing something similar in their communities, she says the first step is getting to know your community at its deepest levels – the needs, the barriers, and the culture.
“It’s important to understand the culture of the people you’re working with,” she says. “What is going to speak to them? In our community, for example, we have rabbinical letters saying that our services are wonderful projects. Being endorsed by these renowned rabbis is very important for our community because it’s a community that listens to the rabbis. For our community, these endorsements matter. For other communities, it would likely be something else. Every community has its beliefs and its stigma. When working in a community, you have to speak to people within that community and find out what they hold as being precious and what they hold as taboos. You might be surprised by what you learn.”
How to act in your community
Explore the stories and resources about our new Healthy Parkinson’s Communities™ initiative, led by the Davis Phinney Foundation to help support community leaders, volunteers, and advocates in the pursuit of making the places where we live, work, and play more inclusive and supportive for those living with Parkinson’s.