Bolstered by their faith, Dean and Elaine Salisbury face Parkinson’s head on with grace, acceptance and hope for the future
In 2001, at age 62, Dean Salisbury was not particularly thinking of retirement, but he felt it was the right choice to make.
He’d been having difficulty writing by hand and typing on the computer, which led to several appointments with neurologists. Dean was diagnosed with Parkinson’s disease, and five months later, he retired — before symptoms began to severely impact his life.
Seventeen years later at age 78, Dean and his wife of 55 years, Elaine, are grateful for the ongoing care he has received at Mercy Health Hauenstein Neurosciences. During their journey with Parkinson’s, they feel they’ve been surrounded by angels at every turn.
As active members of the Catholic Church, Dean and Elaine have always turned to Mercy Health for their inpatient care. In recent years, Dean has not only received care at the Hauenstein Center for Parkinson’s, but he has relied on the hospital at the Mercy Health Saint Mary’s Campus for several back surgeries, a hip replacement and prostate surgery.
Dean began his journey at Hauenstein under the care of Leslie Neuman, MD, and subsequently with Rebecca Lüders, RN, NP-C, Jessica Hedeman, DO, and Susan Price, RN, NP-C. Over time, his providers have modified his medications, allowing him to enjoy many happy years. “It’s just in the past two years that I’ve had serious symptoms,” Dean said with gratitude.
Mercy Health’s interdisciplinary approach to patient care has positively impacted the lives of this couple. When Dean was hospitalized for his various surgeries, Elaine asked that his post-operative care be at the Hauenstein Center.
“The nurses there understand Parkinson’s — and the importance of medication being given on time. They know how to treat both the patient and the caregiver. If anyone were to ask what medical facility in Grand Rapids would best address their neurological needs, I would say Mercy Health. There is no question in our minds that it’s the place to be,” Elaine explained.
Surrounded by Support
Thanks to additional support from family, neighbors and church members, Dean is still enjoying his life. When a new symptom surfaces, he adapts. His balance issues led him to turn in his two-wheel bicycle for a tricycle, which he enjoys riding around the cul-de-sac in his Cowan Lake neighborhood.
Staying active and having a positive attitude go a long way toward quality of life. “I am in the church choir, and the members have been very helpful,” said Dean. Although his volume and articulation are beginning to not be what they were, “the director wants Dean in the choir,” added Elaine. The men in the choir even help Dean get to Communion safely during Mass.
The Salisburys’ three sons are also a source of support and comfort, as well as Elaine’s family members who live in Grand Rapids who have helped the couple whenever either of them has been hospitalized on the Saint Mary’s Campus.
Other guardian angels live close by. “Our neighbors have been exceptional,” said Elaine. “When people suggest that we might want to move to assisted living, we wonder where we would be able to live that would provide more support. Everyone watches out for Dean. Our next door neighbor is the one who found Dean when he had his first big fall. God is watching over us, by way of family, friends, and neighbors.”
Caring for the Caretaker
Elaine has felt the challenges of care taking that can weigh heavily at times, but she does so with grace. She attends two support groups to help her adapt to her new normal.
“Mercy Health’s Caregivers Group for Those Caring for Someone with Challenging Neuro-Cognitive Behaviors meets monthly, and it is extremely helpful to know that what is happening at our house isn’t unusual. We’re not alone. They understand how caregivers are ‘on alert’ all the time,” said Elaine.
Group co-leaders Karen Bugg Foley, RN, LMSW, and Susan Malmer Woolner, CPXP, offer professional resources and emotional support that Elaine truly appreciates.
“Our neuro patient support program is the only one in West Michigan that provides ongoing supportive care for both patients and caregivers, and direct referrals to our palliative programs as well as other community resources that help participants continue to provide care at home and keep their family member safe,” said Woolner, Hauenstein Neurosciences, Patient Support and Community Partner Coordinator.
The Role of Palliative and Supportive Care
Elaine first heard about Mercy Health’s Palliative and Supportive Care and Joel Phillips, DO, while attending Mercy Health’s support group. She had known of palliative care for terminally ill people.
“When the leader of our group mentioned palliative care for people with chronic conditions, I was surprised that no one had thought of it before. It helps you deal with what is happening today. It helps you to live more comfortably with the proper medication, counseling or whatever you need,” she said.
When it comes to the cognitive challenges that Parkinson’s patients often face, Elaine has found Dr. Phillips’ help invaluable. When she and Dean don’t agree about what is safe for him to do, it can cause tension between them. “Sometimes advice is better coming from someone other than a wife,” she admitted.
During the year that they have worked with Dr. Phillips, he has helped to provide a framework for expectations and realistic responses to limitations. “I’m amazed at how aware he is, at how well he listens, and by how observant and knowledgeable he is,” said Elaine. “He is able to offer us perspective and sound advice.”
“My goal is to provide patients and caregivers with support and resources to improve day-to-day life with progressive neurologic disease. This may include brainstorming solutions to new problems, relieving bothersome symptoms, or developing a long-term plan of care while working in partnership with other providers involved in care,” said Dr. Phillips.
A Healthy Regimen — for Both of Them
Respite is part of their weekly routine. A half day each week, Elaine brings Dean to a local respite facility, where he is well cared for and engaged in their activities. This service gives Elaine an opportunity to run errands, attend her own appointments and shop without interruption.
Staying physically active is another commitment the Salisburys have made for their health. The couple works out regularly at a local fitness center, where yet more angels (staff) willingly look out for Dean — while he complete his 13 different aerobic and anaerobic exercises, and Elaine completes her workout in another part of the facility.
And the Future?
Dean feels blessed to live a community where the Van Andel Research Institute is searching for a cure for Parkinson’s. Although he hasn’t participated in clinical trials, Dean said, “I’m considering giving my brain to research upon my death. I feel very positive about the state of research for many diseases, including cancer.”
Elaine, too, offered her perspective about the future for patients diagnosed with Parkinson’s. “Neither one of us is assuming that research will benefit us directly, but with Parkinson’s, we’re hopeful for our sons and grandchildren by the time they might need it.”
Her hope springs from a seminar she and Dean attended in 2017, where a researcher began his talk by saying, “If you’re a mouse or a rat living in Grand Rapids, you’re in luck. We’ve found out how to cure Parkinson’s in them.”
Grateful for all medical advances and the care they’ve received during this journey, Dean and Elaine Salisbury continue to count their blessings and to treasure their ever-present angels.
Dean’s Advice to Newly Diagnosed Patients
- Get the best neurological care you can.
- Stay faithful to your medication schedule.
- Be patient with yourself. You have an ongoing condition.
- Don’t hesitate to ask for Palliative Care to manage your pain so you can continue to enjoy life and stay active.
Learn more about the services of Mercy Health Hauenstein Neurosciences
Learn more about Mercy Health Palliative and Supportive Care