|Nancy Xenakis is a certified clinical social worker at Mount Sinai Medical Center in New York, where she devotes most of her time to the MDA/ALS center.
Q: What is the role of the social worker on the ALS clinical care team?
A: A medical or clinical social worker on an ALS care team really has a twofold role: First, there’s the counseling component; and second, there’s the "case management" component.
I see the counseling part as being able to provide a safe environment where patients and caregivers can discuss their thoughts and feelings and receive emotional support.
The case management part entails obtaining the necessary resources for patients and families, as well as helping them to navigate through the complex systems that exist in today’s health care environment and advocating on their behalf.
Q: Do people readily accept the idea of a social worker in the ALS clinic?
A: It can be hard for people to admit that they need help, whether it’s from family and friends, a support group, social worker, or professional association like MDA. But seeking assistance in whatever way is needed is a good strategy.
Q: How does a person with ALS or his or her family arrange to see a social worker?
A: That depends on the institution, of course. But here, the physician would explain the MDA/ALS center program and its purpose and how it could benefit the patient and family.
The program here is multidisciplinary, including medical care, nursing, speech therapy, occupational therapy, physical therapy, social work services and MDA services. When patients enroll in the program, they automatically see someone like me during their visits.
Q: In your experience with people who have chronic diseases, what factors help them and their families to cope?
A: With a chronic, degenerative illness like ALS, it’s important not to think too far in advance and speculate about the future but to stay focused on the here and now. I also think it’s important that people know when and how to seek help.
And staying as active as possible in all areas — physically, mentally, socially and emotionally — is critical to obtaining maximum health.
For instance, we have one patient who recently went to a nursing home. It was a very difficult transition for him; most of the other residents are much older than he is and not very coherent.
But he’s made the best of it by developing relationships with the staff, and he’s now doing staff education on ALS. He uses the MDA materials as handouts and has conducted in-service programs with the staff. They’re grateful, and he’s staying involved.
Then there’s another man with ALS in our program who used to be on a sports team and unfortunately can’t play anymore. He’s now a coach for the team and is excited about the season starting up again. He enjoys the recreation and the competition, and even though he’s no longer able to play, he’s still engaged and able to help the team in another way.
Q: I understand that your group at Mount Sinai is starting a new program that involves "complementary" or "alternative" medicine techniques.
A: Yes. It’s called We CoPE, which stands for Wellness Complementary Program for Empowerment. It’s a comprehensive program to enhance wellness in people with chronic neurologic diseases, their families and caregivers.
We’re now looking at funding possibilities through foundation or other grants to defray the costs for these services, which are not reimbursable by insurance.
Q: What does the program consist of?
A: The program, which is slated for two hours, one evening a week for a six-month period, will involve an individualized plan for each person with a core set of activities and some elective activities.
We plan to offer chiropractic treatments, acupuncture, nutrition counseling, yoga, exercise, massage and imagery. We’ll also offer two Eastern techniques called tai chi and qigong that involve postures, breathing and mental techniques to help control stress and guide energy.
There’s also a social component. Patients who need assistance coming to the program will be accompanied by caregivers and/or family members, so we’re opening up the program to them as well. They have the option to participate or wait in the waiting room. Either way, both patients and caregivers are likely to meet informally and socialize with other people at the center.
Q: What was the impetus for We CoPE?
A: The program’s concept was developed by Dr. Lange [Dale Lange, co-director of the MDA/ALS Center at Mount Sinai], who had done some reading on complementary medicine and decided to try to enhance the overall health and sense of well-being of our patients by combining traditional Western medicine with complementary medicine approaches.
Q: How did you get involved?
A: I was hired to be the administrative coordinator for this program as one part of my job.
I also offer general social work services to patients and family members at the MDA/ALS center here, and I’ve recently started a group offering education and support for caregivers.
Q: How do you think complementary medicine will help people with ALS?
A: I think that doing things that are constructive and being part of a program is healthy for patients. I think it’s a way to engage them on a variety of levels. A lot of these modalities are physical, so they’re keeping muscles working as much as possible.
They’re also part of something, seeing other people and perhaps sharing this experience with their caregivers.
Many people like the feeling that they’re doing something in addition to traditional Western medicine that may be helpful.
Frankly, I can’t imagine that it would not improve quality of life. Specifically, we’ll be doing a pilot program and then adjusting it based on feedback from participants and practitioners. We’ll be using a quality-of-life questionnaire as a measurement tool.
Q: How would you describe your main focus in the ALS program?
A: I try to empower patients and families, to create an alliance between us. My role extends well past the clinic visits. I’m available to talk with people, on the phone or in person, beyond clinic hours, and I try to keep the lines of communication open between me and the patient or family member.