“My company is both a personal and professional thing for me,” said Marcia Cotter. “My father-in-law was diagnosed with Parkinson’s disease (PD) in 2004, and he passed away in 2013 at the age of 85. His journey with PD is the reason my company specializes in caring for people with this disease.”
Marcia was one of her father-in-law’s hands-on caregivers. “I spent a lot of time researching resources to support my father- and mother-in-law, and then explaining the unique needs of PD to the people involved,” she said. “I was the person who made the decision that my father-in-law needed to move out of his home and into a facility. I was the one whom the nurses called when something happened and decisions needed to be made.”
Marcia owns and manages Parkinson’s Specialty Care in Golden Valley, Minnesota, which provides in-home health services and community-based residential housing for people who live with PD. “It all came together for me in 2003,” Marcia said. “At that time my company was offering in-home health services, and I had decided to expand the company by adding residential housing to home health support. I was also talking to Rose Wichmann, Manager of the Struthers Parkinson’s Center in St. Louis Park, Minnesota, about what care my father-in-law needed. During those conversations Rose asked if I would be interested in having my company specialize in serving people with PD. So we started to brainstorm what housing would look like for people with the disease.”
It took a couple of years for everything to come together and for Marcia to refocus her company. Today she has up to 36 in-home health clients and six homes, all of which focus on movement disorders. Seventy-five percent of her clients have Parkinson’s. “Even though my residential locations look like assisted living facilities to people on the outside, they are different,” Marcia said. “We’re providing what are essentially private residences with a home health license. It’s their home, not a facility.
“Parkinson’s is different from other chronic diseases – and even different from other movement disorders too,” Marcia explained. “PD symptoms are often treated with medication; those medications are complicated – how you give them, when you give them and how to coordinate their timing with meals. The meds often have side effects; and many times, additional medications are given to treat those side effects as well. It becomes a downward spiral.
“People with PD often have problems swallowing, so that liquids don’t always go down the right way. They need tests to determine their ability to swallow and they may need to drink certain kinds of thickened liquids. And, of course, there are changes in walking and behavior, ‘good’ days and ‘bad’ days – the list goes on. There are so many variables that need special training to understand. We are constantly training our staff.”
Marcia has worked with others to build educational resources for people with PD and their caregivers. She utilizes “TULIPS: for Better Parkinsons’ Care”, a training program developed by Struthers for senior residential facilities. The acronym emphasizes what people with PD need – Time, Understanding, Quality of Life, Increased awareness, Pills on time, and Support. She is on two national boards — the American Health Care Association and the National Center for Assisted Living.
Marcia plans to continue focusing on providing specialized care to people with Parkinson’s. She would like to open more residential facilities, including one for people with early-onset PD in the Minneapolis – St. Paul area, and homes in South Dakota as well. “The people in South Dakota have nothing like this,” she said, “and they have one of the highest incidences of Parkinson’s in the country.”
Marcia’s business model was built on having a majority of private–pay residents, but over time she has taken in more people on public assistance. “It’s harder to run a business when the government controls your pricing – at a significantly lower level than private–pay,” she said. “But if I didn’t do it this way I would not be serving the people who need it. Research shows that people with PD do better in a smaller residential environment, like the homes we offer.”
For this sharp and dedicated businesswoman, her business is more than a business, and her job is more than a job. “This is the work I was meant to do,” she said. “It feeds my soul and I know why I get up in the morning.”
Story written by Susan Gangsei, author of The Light in the Middle of the Tunnel: Harrowing but Hopeful Stories of Parkinson’s Family Caregivers and Stuck With It, Not In It: Redefining Life with Parkinson’s Disease.
Ruth Hagestuen started preparing for her place in the Parkinson’s professional community when she was a nurse working overseas in Bangladesh and Madagascar. “I gained a different and more global perspective from my time there. I can see the value of different viewpoints and learned to think outside the box,” Ruth explained. This has served her well.
“People with PD need to see a neurologist that specializes in PD. There has been so much change in the field since I started. We now know that Lewy Body is not as rare as what was assumed. Medication options continue to change. Everyone with PD is different. They have different symptoms and need a different combination of medications. There can be non-motor symptoms that need to be addressed such as mood, memory, constipation, sleep issues, etc. Each PD patient is a unique puzzle and I try to make all the pieces fit together as best I can.” Dr. Stein said.
Living well with PD is much more than medication, and the person with PD and their care partner are the decision makers. We need to provide the right information at the right time based on what the patient and care partner tell us are their goals and what needs they have. Those things are different for everyone.