February Be The Change: St. Peter’s ALS Regional Center

By Natalie Criscione

The first line of an Emily Dickinson poem comes to mind as I reflect on my visit to St. Peter’s ALS Regional Center in late November: “‘Hope’ is a thing with feathers….”. It is fragile, delicate, and asks for nothing in return. Sometimes hope is not about finding answers or thinking that a miracle will happen, but rather being in a space of kindness and compassion, surrounded by those who are present—those who understand the storm. A village of support and care. The ALS Regional Center is such a village. 

Co-op members Laura Garrison and Harriet Seeley whose late husbands’ Ed Miller and Dan Carroll passed away from ALS within a year of each other in 2017 and 2018, understand too well the disease and its accompanying struggles. “The disease had its own way—there is no cure,” says Garrison. “It’s multi-faceted, expensive, and devastating,” adds Seeley. For both women and their partners, the ALS Regional Center became a hub where they could come for appointments and discover their way forward through both physical and emotional needs as the disease progressed. It also became a space for them and other families to gather for ongoing grief counseling. 

From nurse case management, social work, and respiratory therapy to massage therapy, caregiver and patient support groups, equipment loans, and more, the ALS Regional Center strives to help families manage the illness’s progression, which, as Melissa Morrison, the Community Liaison says, is “complicated—it’s not like managing other diseases.” Housing everything in one space means that patients do not have to travel to multiple appointments throughout the area to get the care or adaptive equipment they need. They can come for a single appointment, see all their care providers, and leave with a wheelchair and special tools to assist in their daily lives. Providers and practitioners work together to develop treatment plans and strategies. 

In collaboration with St. Peter’s Hospital, some of the services provided, such as doctor visits, OT, and PT are billed through insurance, while a broad range of additional support is available at no cost to the patients or their families. “Quality care that we offer free of charge is maintained through fundraising,” says Karen Spinelli RN, BSN, and manager of the Center, who was instrumental in the Center’s founding in 1990. Her early career experiences as a hospice nurse led her to search for improved ways of caring for ALS patients. Yet, despite many technological and patient care advances, because the disease presents so differently in each person, “the patients are still teaching us,” says Spinelli. 

Within the field of ALS research, there have been some significant discoveries during the last decade, which were boosted in 2014 by the worldwide “Ice Bucket Challenge” fundraising event. However, the disease’s cause and cure are unknown. Approximately, ninety percent of ALS cases are “sporadic,” meaning there is no genetic connection. “We are starting to think that if you get sporadic ALS it is a culmination of stress, something neurological, environmental, and maybe a mutation,” says Spinelli, “but research remains inconclusive.”

St. Peter’s Regional ALS Center is tucked into the Pinebush area of Albany, on Warehouse Row. It is, as Seeley says, “a funky location” and then adds with a smile, “it is my passion to spiff it up.” I was not surprised when I met with her and others at the Center in late November that she pulled some daffodil bulbs (purchased with gift cards provided by Honest Weight) out of her bag. Seeley’s experiment with the outdoor flowerbeds has resulted in successful growth of butterfly weed, a few flowers, and ongoing experimentation with the temperamental sandy soil. “I love to garden, and I wanted to do something to give back,” she says. For family members like Seeley, small gestures like planting flowers become symbols of hope, reminders that there is support for those whose lives have been touched by ALS. 

During the month of February when you round up to the nearest dollar at Honest Weight, you are choosing to Be the Change within a village of care that supports patients and their families at St. Peter’s ALS Regional Center.

For more information about additional ways you may donate or volunteer at St. Peter’s ALS Regional Center visit their website.

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