Treatment for movement disorders goes beyond providing medical care. Adjusting to a life with Parkinson’s, Huntington’s, or other conditions requires requires lifestyle changes, planning for the future, and coping with the stress and waves of emotions associated with a diagnosis. Anne Kosem, LCSW, at our Morreene Road Clinic helps people with movement disorders and their loved ones navigate these and other complex challenges. In her "Spotlight" interview, Kosem talks to us about this work, how it compares to her previous work helping people diagnosed with cancer, and looking forward to seeing family and patients in person once the COVID-19 pandemic is over.
What are your current responsibilities within the Neurology Department?
I am a licensed clinical social worker and Center of Excellence co-coordinator in the Movement Disorders Clinic. I have a clinical role providing assessment and counseling to patients with Parkinson’s and Huntington’s disease and their families. I have an administrative role helping to ensure our division fulfills the obligations to maintain our COE status with the Parkinson’s Foundation and Huntington’s disease Society of America. This role also allows me to plan educational programs for the PD and HD community and also lead support groups.
What does a typical day look like for you?
One aspect of my job I love is that no two days are the same. I meet with patients and their carepartners in the clinic (and virtually) to provide education, counseling and support around a new diagnosis, adjustment to changes in the disease process, impact of disease on work and relationships, carepartner stress, as well as crisis intervention and connecting families to community resources.
How and when did you first get interested in social work? How are you able to help patients with movement disorders?
I am able to use my experience working with people with chronic illness and their carepartners to provide support throughout the disease process. One of the most challenging times is adjusting to a new diagnosis and often they need someone who understands both the illness and the range of emotions they are experiencing. I also can help people navigate changing needs throughout the process and help them find solutions to challenges they encounter.
For example, often people I meet aren’t yet ready to tell their family or friends about their diagnosis or their usual support system doesn’t understand the diagnosis or are dealing with their own emotions around it so aren’t able to offer the support they would normally. This can cause the patient to feel alone with their diagnosis. My role allows me to provide support while helping them to learn how to talk to their friends and family.
Before coming to the Movement Disorders Clinic, you worked for the Duke Cancer Institute. How does that work compare to what you’re doing now? What about the population needs of those two patient groups?
I worked with both pediatric and adult oncology patients and their families for 20 years prior to joining the Movement Disorders team almost two years ago. Although the diseases are different, there are similarities in the experience of the patient and family. The diagnosis of these illnesses seem sudden even if they had been experiencing symptoms for some time. I have seen that the most stressful time for patients and families is the “knowing something is wrong, but not knowing what it is” journey to actual diagnosis. Most people don’t know about these diagnoses until they are in the middle of it and it can feel very scary.
Contrary to what people often assume for both childhood cancer and Parkinson’s disease people can live with these illnesses for a very long time. Much of what I do is help them with the adjustment to the illness and help them navigate this “new world” and changes in their life. When I worked in Pediatric Oncology the majority of my work was with the parents, helping them to cope. Similarly, I spend the majority of my time working with spouses, significant others and children of movement disorder patients learning how to cope with their own emotions, changing roles and meeting the needs of their loved one.
What do you enjoy most about your work?
I get to meet really wonderful people going through a difficult time. I enjoy using my clinical skills and experience to provide emotional support and also help with practical solutions. It's very special to witness the resilience of people on a daily basis. I also enjoy connecting people to others who are experiencing similar challenges. It is powerful when a patient meets another person who “gets it” and all that goes along with their specific diagnosis. Our support groups and educational programs allow for those connections.
What’s the hardest part of your job?
When I am helping someone with a challenge that doesn’t have a good solution. In the medical field we often want to “fix” but sometimes there isn’t a fix and we just need to listen, support and help them learn to cope with what is.
What’s one thing you wished more people with movement disorders and their carepartners knew about their visit?
Perspective plays a role in how people do physically and emotionally. In my experience, those who cope best are flexible, adaptable and can modify their life and the activities they most love. Sometimes when things get challenging due to PD either physically or emotionally, people stop doing what they love. However, if instead you can approach the challenge by thinking “I may not be able to do this exactly as I always have, but how can I still participate and get enjoyment out of it, even if it looks different?”
For example: I may work with a person with Parkinson’s who loves to play golf. If they start experiencing fatigue, tremor or some balance issues there are some who just stop playing golf altogether. If they don’t have many other activities they enjoy they are at risk of becoming sedentary- which is not good for people with Parkinson’s. However, if that same person( when they started to experience the same challenges) modified their usual 18 hole, day-long outing walking the course with friends, to 18 holes with a cart or reduced to 9 holes, or went with a friend to the driving range and had lunch? It may not be the way they are used to enjoying the game, but they can still participate, get exercise, be outside in nature, and socializing.
What are you most looking forward to once the COVID-19 pandemic is over?
In my personal life: Seeing my mom regularly. She lives in an assisted living facility in Michigan and prior to COVID I was going once a month to spend time with her. Now that we are both vaccinated, I am planning a road trip to go see her for Mother’s day. Professionally: I look forward to resuming in person programs. I see great value in our patients and carepartners being able to meet and connect with others who truly understand what they are experiencing.
What other passions or hobbies do you have outside of the Department?
I enjoy travel, spending time with friends, trying new restaurants and breweries, reading, walking my big Bernese Mountain dog, Paisley, and visiting our adult children who live in Wilmington and Hawaii. During the pandemic I started a small garden and became passionate about “Marie-Kondo-ing” my home.