PARKINSON’S OUTREACH

While Sarah Matcha makes her rounds at Bethany on 42nd, seeing several residents with Parkinson’s disease, I notice that while each has been diagnosed for roughly the same amount of time, their symptoms and progression seem drastically different. “Progression is not the same for any two people,” said Matcha, “and the hardest thing about Parkinson’s disease is that we can’t determine a single cause, so we can’t determine a single cure.” Only 15 percent of Parkinson’s cases are hereditary. The rest are considered idiopathic, occurring for reasons unknown.

With statistics like that, diagnosing and treating Parkinson’s is a complicated matter. As I sat in on the three patient visits, just a small part of an outreach care program that Matcha developed, I see that the breadth and depth of Matcha’s experiences in life and medicine have all played a role in the quality of care she brings to her patients. “There’s no way to improve on her,” said Mary Ellen Maltry, one of the residents Matcha sees on the day of my visit. “I haven’t found Parkinson’s as difficult for me as it has been for many people,” Maltry continued. “I don’t think I’m better, I just think I’ve had good treatment.”

Recalling her childhood, Matcha explained, “I was sick a lot.” She was hospitalized for infections and asthma twenty-one times before she was even three years old, often times necessitating two to three days in an oxygen-tent crib. Later she was diagnosed with an immune deficiency and began a treatment plan that stretched into adolescence. Realizing the quality of care and support she was receiving, she began to wonder what life would be like if you didn’t have good people taking care of you. “There are so many patients―kids and adults―who just don’t have people to take good care of them. So I knew from a very young age I wanted to go into medicine―so I could be there for those who needed it.”

As a pre-med student, Matcha started working in a nursing home as an aid. She began to understand the role each caregiver played in patient’s lives, and feeling a pull towards closer patient interaction, she switched majors to nursing. “I wouldn’t have had the same hands-on experience as a medical student that I would get as a nurse. And I didn’t want to wait twelve more years to take care of people.”

Matcha enrolled in nursing school right away and excelled so much that Mayo Clinic in Rochester took notice. During her last year of nursing school, Mayo recruited her for a position in neurologic rehab, mostly with adolescents with spinal cord injury. She enjoyed the work, but struggled with feeling that there was more that she could do for patients. “There were times that no matter who I talked to, or how many times I went to bat for that person, nothing really seemed to happen,” Matcha explained. So she decided to take her nursing education once step further, getting her nurse practitioner’s license. “I felt that if I was in a position to call some of those shots for my patients, I could make a far greater impact in their lives.”

As a nurse practitioner, Matcha moved into psychiatry, a field much more rewarding than she’d expected. “You don’t stop and think about how detrimental emotional distress is to somebody,” observed Matcha, “but it’s during those times when people need the most help. What better time and place to make a difference.” Matcha said her psychiatry experience still plays a major role in her ability to help the Parkinson’s patients she sees now. ”It gave me a lot of insight into what people were experiencing―why they would or wouldn’t follow treatment plans. I really think it’s made me a better provider.”

After six years in Rochester, Matcha and her husband, Pete, made the decision to move to Fargo with their first daughter to be closer to family. She took a job in the Movement Disorders Clinic at Sanford, where she was first immersed in the world of Parkinson’s. “It amazed me how much one disease, although not fatal, could affect every single part of your life, every single part of your body,” recalled Matcha. “I realized that just taking the time to listen to these issues made a huge difference in their quality of life and outcomes.”

As Matcha grew more independent in her role, she observed that while she was able to help pa- tients in her clinic, Parkinson’s patients in nursing-home care were being seen strictly by internal medicine providers. Though their Parkinson’s symptoms and other observations were relayed to Matcha, there seemed to be a disconnect between her orders and recommendations, and actual follow through. Curious why this was occurring, Matcha began calling the facilities to speak directly to staff, and her findings surprised her. “It wasn’t that they weren’t willing to do it,” says Matcha, “it was that they didn’t understand why it was so important.”

Expressing her frustrations to a pharmaceutical rep, Matcha explained how great it would be to go into nursing homes to educate staff about how with Parkinson’s treatment, the little things can make a huge difference. Surprising her, the pharmaceuticals rep went to his supervisor and got funding for Matcha to do just that. Recalling the feedback she received after these trainings, Matcha said, ”It was amazing how much difference it made and how appreciative the staff were. They’d tell me that if they’d known all this before, they would’ve done it differently.”

The success of the staff training led Matcha to develop an innovative outreach program. While Sanford provided onsite specialty clinics in several towns, they didn’t provide specialty neurology outreach to local facilities. “I thought about the people with Parkinson’s disease who are so debilitated that it’s just too difficult for them to come into the clinic,” said Matcha. “They would just get lost in follow up, and wouldn’t get specialty care anymore.” Matcha’s solution was to simply take her specialty practice into the nursing homes. Sanford was on board, and Matcha was able to start seeing patients in several area nursing facilities.

By educating nursing home staff, and through outreach clinics, Matcha has felt that Parkinson’s patient care in those nursing homes has tremendously improved. “The outcomes are improved, and the education of the staff is better. There’s no wondering if orders are going to be followed,” said Matcha. “Everything seems more consistent for the patient.” But Matcha’s outreach didn’t stop there.

Thinking about the all those in the Fargo Moorhead area with Parkinson’s disease who Matcha wasn’t seeing in the clinic, and who weren’t in nursing facilities, she began to wonder: Who was taking care of them? Knowing there was a need to bring education out to the community―to patients, family members, caregivers and medical staff beyond those she already was reaching ―another idea blossomed: a non-profit called the Midwest Parkinson’s Initiative. This project is bringing what Matcha’s seen to be beneficial and helpful in practice to everyone who wants access with a program called PD Monthly. Each month the program will cover a topic as it relates to Parkinson’s disease. “They’ll be about an hour long and interactive,” explained Matcha. “You’ll learn all the specifics on the topic of the month. The more you know, the better you’ll do at home.”

Matcha’s team is also in the process of developing a once per week, six-week caregiver transition class that would address issues surrounding adult children or spouses who find themselves transitioning into caregiver roles. “There are so many emotions and unanswered questions attached to caregiving,” said Matcha. “My goal is to make that transition an easier one, for as many people as possible.”

Matcha’s journey for better Parkinson’s care is paving the road for a new standard in care for those living with Parkinson’s, and for people working with patients or family members with the disease. Having had no prior personal or specific medical experience with Parkinson’s, it’s remarkable the time, energy and passion Matcha has for making the lives of those with Parkinson’s better. “I don’t know what it is about them,” she said, “but I have a personal connection now to each one of them. I can’t fathom leaving these people.”

What keeps her going? Maybe it’s the support and encouragement she receives from her husband who Matcha said sees how much it means to her and supports her both emotionally and at home with the kids. Maybe it’s her seven-yearold daughter, Emme, who suffers from the same immune deficiency as Matcha but has learned the credo that Matcha said was passed down in her family: Paying it forward and giving of yourself is the best gift you can give. Emme’s been dubbed the “Roger Maris Cookie Princess” making homemade treats and handing them out to all those receiving treatment and their loved ones each month while she gets her treatment too. Or maybe it’s the many lessons Matcha learned from her parents that keep her going. “From a work ethic perspective, they both had the mentality of, ‘You keep working until the work is done.’”

It’s easy to see from Matcha’s track record of one accomplished goal after another, her efforts to serve the Parkinson’s community aren’t soon done. If you ask her, she’s just getting started.

Learn about upcoming events at www.midwestparkinsons.org [AWM]