“How do you unwind a lifetime of closeness? My grief is still new.” When Maureen Simmons answered my call to talk about her mom, Patricia, who passed away with Parkinson’s and Lewy body dementia last year, she said, “I’m nervous.” Maureen, who is PMD Alliance’s Chief Advancement Officer, is beloved for listening from her heart to our movement disorders community. “Being able to connect with other people—because that’s what philanthropy is all about,” she said, “feels like a tremendous gift and like no accident for me.” But this phone call was different. This story was personal. “My mom led a fascinating, brave life,” Maureen told me. Sharing her story felt like a sacred responsibility. Could she take such a rich life and faithfully distill it in one conversation? Could she offer us a glimpse of her mom’s spirit?
Patricia Simmons, who was born in 1938 in Erie, PA, was a woman ahead of her times. She was into the organic food movement long before it was trendy. In the 1960s, she volunteered with La Leche League, a nonprofit that has been at the forefront of breastfeeding education and advocacy. And she was a community leader, serving as the first Co-Director of Richard Rohr’s Center for Action and Contemplation in the late 80s and the Executive Director of Big Brothers Big Sisters of Central New Mexico in the 1990s.
She was also deeply rooted in her Catholic faith, a faith that seemed to pervade rigid institutional borders into a more expansive spirituality. “Her favorite part of the mass,” Maureen said, “was eucharist,” a reminder of the bread we share, of our sacred bonds with each other. She believed in and actively worked to build an inclusive world.
In fact, Patricia was a woman people were often “drawn to.” Perhaps because she did everything with an abiding sense of care. “With food,” Maureen said, “everything she made was from scratch and done with great love. When I was a little girl, she would lift me up on the counter and we would do it together.”
But Pat’s life was not free from pain; she lived intimately with grief. She lost two of her sisters (sisters she had helped mother) in a tragic accident, and then lost her husband to a heart attack. Maureen was only 19 when her dad died and remembers things shifting between her and her mom. “I had such compassion for her for what she had been through,” Maureen said. “When my dad died, I fell into that role where I felt like we were partners.” Maureen paused for a moment. “Of course, we weren’t. My mom continued to nurture me throughout my life.”
Perhaps it was these losses that imbued Pat with a sense of life’s preciousness. Maureen remembers growing up with her mom’s “Patisms,” or beloved sayings, like, “Before you speak, first ask yourself: Is it kind? Is it necessary? Is it true?” As Maureen got older and focused intently on her work, her mom would remind her: “Mo, don’t give it all away.” Save some life for yourself.
In 2018, Maureen started working for PMD Alliance, a role that would envelop her in the Parkinson’s and movement disorders community. But, personally, Parkinson’s wasn’t on her radar. About 15 years prior, her mom had lost her sense of smell. She and her family thought that was odd, but didn’t think much else of it. Eventually, when a tremor emerged in her mom’s hand, Pat went to her primary care doctor. But the doctor dismissed it as “old age.” Her tremors continued.
“If it wasn’t for PMD Alliance,” Maureen said, “I don’t know that we would have ever gotten a diagnosis.” As Maureen dove into her new work, she began to put together the puzzle pieces of her mom’s symptoms (loss of smell, a stiff walk, constantly running nose). When Maureen learned about the importance of a movement disorder specialist (MDS), she found one for her mom at the University of New Mexico. “Mom’s MDS was amazing and saw symptoms the family had missed,” Maureen shared. “They noticed that my mom didn’t blink, which explained why she had dry eyes. My mom always smiled, even during the toughest times. Her MDS said that because she had such an expressive face, this symptom would be easy to miss.”
And that’s when they heard it officially: her mom had Parkinson’s.
A year later, a new diagnosis rocked them: Lewy body dementia (LBD), a progressive disease that affects over one million Americans. “My mom was such a fine writer and thinker,” Maureen said. “Her biggest fear was losing that,” a part of her that felt essential. As Maureen describes it, LBD is different from Alzheimer’s in that “it begins in the back of the brain and moves to the front, so it affects executive functions last,” instead often impacting sleep, cognition, movement, and behavior. Symptoms also frequently include hallucinations.
“Some of her hallucinations were scary,” Maureen said. Like when Maureen’s sister called her saying their mom was insisting that Maureen, who wasn’t there, was in her living room and she was worried something was wrong because Maureen wasn’t talking. “That’s when we really knew it was progressing,” Maureen said. But most of her hallucinations were friendly, like the little black and white dog she frequently envisioned.
There were other changes, too. “There was a big shift from my cool mom who was ready to go anywhere to someone who spent the last two years of her life in a wheelchair,” Maureen said. “It was hard for her and hard for us. The last month of her life, she was not able to move at all, she had to be turned in bed. There were times when I was angry and resentful. She’d say, ‘I’m sorry,’ and I’d say, ‘I’m sorry,’ and we’d both cry. And it sucked. It was very hard to see the physical decline of someone you love so much. But she did it with grace—and it reminded us we had to give ourselves grace, too.”
When Pat was first diagnosed, her four children were all still working. They’d take turns, one week at a time, living with their mom, caring for her as fully as they could. But as her dementia worsened, they realized the best choice for all of them was to move their mom to an assisted living facility. Rather than this being a loss, Maureen says it allowed them space to “reclaim our relationships with her. It gave us space to not constantly be caregiving.” Towards the end, when Pat couldn’t move, Maureen would sit by her side and, together, they’d listen to one of her mom’s most loved musicians, Andrea Bocelli. “She’d turn to me,” Maureen said, “and just say, ‘Mo, I’m so glad you’re here.’” In this way, Maureen says she is grateful for assisted living. “It’s never perfect but, for us, it was a gift.”
Three weeks before Pat passed away, she had another hallucination, except this one felt like a premonition. “I came to visit her one day,” Maureen said, “and my mom said, ‘They completely redid my room.’ She talked about the walls being repainted and she kept saying, ‘Look how bright and beautiful it is.’” Maureen thinks this hallucination was her preparation. “She wasn’t afraid to go; she had such grace around death.” The evening of her passing was peaceful; in the middle of the night, as her spirit left her body, Maureen and her brother sat beside her, their hands gently pressed to her body.
In the wake of her mom’s passing, Maureen said she felt like her heart was broken. When Maureen worried about the impact of her grief on her work, her husband reminded her, “The organization you work for is in the business of caring and compassion. This is who they are.” And that is exactly what Maureen has felt. “At PMD Alliance, I was given the space to be able to move through my grief. Because grief does not start and stop; it’s a process. To be able to have that compassion and support and encouragement from the entire team is so rare.” In fact, Maureen believes that this care emanates from the top: “Andrea”—PMD Alliance’s CEO—“is totally unwavering. She’s so consistent in her care and her compassion and her leadership. I’m blown away. I’ve worked for a lot of CEOs, but it’s rare to find someone who is gifted, bright, committed, and compassionate.”
Pat was so proud of her daughter for working for an organization that supported people with Parkinson’s and other movement disorders. “She’d tell everyone,” Maureen laughed. Maureen, too, feels like this work is an honor. “One thing I love so much is our focus on the Ecosystem©,” Maureen said. “It’s so inclusive. We support the person who supports the person with a movement disorder. If you’re an adult child or a care partner like I was, we recognize your challenges traveling that journey with someone you really love.”
As the time since her mom’s passing stretches further into the past, Maureen wants to keep her mom with her. “My mom got me into music at a really young age,” she said. “Right before she died, she said to me, ‘Maureen, are you playing the guitar?’ When I told her yes, she said, ‘Don’t stop.’ In her honor, I’ve started to take guitar lessons and to sing.”
Maureen still talks to her mom; “I want her to know how proud I am of her,” she said, “how brave she was, and how she never gave up. Anything she did, she did it fully and with abandon.” Next month, to mark her mom’s birthday, Maureen will travel to Erie, PA, where she grew up. “I haven’t been there in almost 15 years,” she said. “I’m going to sit by the water, put my feet where my mom was, and just be there. I’m going to get lost in it.”
