True Goodwill Ambassadors
Although as professionals, we play an important role by helping to guide patient care, it is true that our patients are the real experts. Nowhere is this more clearly demonstrated than with the Deep Brain Stimulation (DBS) Ambassadors Program. Our most recent meeting in April, 2019 captured the kind of synergy that can happen when an atmosphere of learning, sharing and caring is provided. The Ambassador’s Program helps individuals contemplating Deep Brain Stimulation (DBS) surgery learn about the surgery and understand the many pre and post visits with the team that are necessary. While perspective DBS candidates have many outlets to learn about the surgery (videos, online information, face to face discussions with their health care team) the Ambassadors Program is the real deal. I hope we have whetted your curiosity to read on.
The program is offered a few times a year at our Parkinson’s Center of Excellence at Beth Israel Deaconess Medical Center. The program primarily serves PD patients, but individuals with other movement disorders such as dystonia and essential tremor participate from time to time. Members of the neurosurgical team begin the 1.5 hour meeting, with discussion about the benefits of the surgical intervention, the steps involved in the interdisciplinary workup for surgery and a realistic description of the actual surgical intervention. There is a short question and answer exchange after the presentations from the neurologist and the neurosurgeon. Most of the questions asked during this portion revolve around what symptoms the surgery will and will not treat, and who is a good candidate for DBS. There is a lot of anxiety and curiosity related to whether patients need to be awake during the surgery or if they can “be put under”.
As is to be expected, potential DBS patients and their family members or care partners have a lot of questions for the Neurosurgical team given the complex nature of decision making around DBS. However, experience has been our teacher such that we have learned that this portion of the program needs to be kept brief, since what follows is the most valuable exchange of the “Ambassadors Program”. In this portion of the meeting our DBS Ambassadors who have had surgery share their experiences openly and candidly. We allow plenty of time for the robust cross talk between Ambassadors, DBS candidates, and their family members or care partners.
At the most recent meeting we had five Ambassadors, two spouses of DBS patients, eight patients considering the surgery, and seven family members. The Ambassadors varied in terms of how recently they had the DBS surgery. Three of the Ambassadors had surgery recently: one just 4 months prior to the program and the two other five months prior. The more “veteran” surgical patients underwent surgery five and eight years ago. These differences allowed for different perspectives to be shared; the more recent surgical patients still felt they were adjusting and healing. The only coaching our Ambassadors had to guide the discussion was to share openly and to appreciate that each person brings a different perspective to the program. Two spouses of Ambassadors were invited to talk about their experiences during the surgical workup and during the recuperation. The testimonials given by the spouses and care partners revealed that not only is the surgery a decision making process that involves both spouses, but that adapting to life after surgery has to be a team effort.
The themes on that April afternoon meeting were powerful. Ambassadors shared their fears of the actual surgery. More than one talked about terror related to “having your head cut open”. Both men and women expressed distress with the idea of having their head shaved for surgery. Two Ambassadors joked about having met for the first time when they ran into each other at a wig shop as they prepared for the “trauma” of having their hair shaved. One person, still working at the time of his surgery, had been anxious about how much time off he would need after the procedure. One active man, having surgery in early winter, wanted to be sure he’d be well enough to return to snowboarding before the ski season ended in the Spring.
One of the most poignant stories shared was from a woman who described being terrified about the surgery. She joked that she had never been willing to have her ears pierced because of her fear of needles. Her husband, in an effort to support her moving forward with surgery, offered to buy her diamond earrings after surgery, as a way of motivating her choice. Other program participants enjoyed this humor and joked about whether her husband’s offer might extend to them!
Here are some of the overarching themes shared during the meeting:
1. Surgery won’t solve all problems. For example, if you have marital strain before surgery this won’t be cured by the surgery.
2. Counseling from mental health professionals on the team can help before and after the surgery; don’t be ashamed to ask for needed help.
3. DBS works differently for everyone, depending on symptoms and specific goals.
4. Don’t put off the surgery if your team thinks it is a good option for you.
5. Family support is essential for the decision making process and recovery.
6. Don’t get discouraged just after the surgery; it can take months for all of the adjustments of the DBS and medications to start to feel the benefits.
7. Try to think positively. If you have symptoms of anxiety or depression, get them treated.
8. Trust your team.
Our Ambassadors and spouses shared the benefits of DBS which included:
1. Returning to treasured activities. One man is back to snowboarding. Some considering surgery used humor to contemplate whether if they had surgery, they could start to snowboard! For the same Ambassador, being able to return to playing the piano with both hands after surgery is a major accomplishment. His music is his “medicine”.
2. One grateful patient, after DBS, dedicated himself to running the Boston Marathon with his wife by his side as his support and coach! He raised money for the hospital’s PD program as part of his marathon run that he successfully completed.
3. Improved marital communication was the highlight for one Ambassador. His wife feels that since surgery he is more expressive and has greater facial expressions. These changes allow them to feel a closer connection
4. Being able to take less medication; having longer “on” periods
5. Improved self esteem
6. Better social connections, One individual is delighted to be able to entertain again and can host dinner parties without “decorating the kitchen” with food spillage during food preparation.
7. More social comfort; feeling liberated to “just go out”.
8. Higher quality of life.
All of the above aspects of the Ambassadors program are compelling. However, we were most moved by the experience of what being an Ambassador was like for our DBS patients and their spouses. They each expressed the wish to give back to a program that they felt had given them so much. It felt empowering for them to have experiences they could share that might help others with their decision making about DBS. There were many offers to have follow up phone calls or meeting with potential DBS candidates. Some Ambassadors provided personal contact information, offering 24/7 availability. This patient-to-patient follow up is tremendously helpful. It’s a win-win exchange.
As described, we did have a Boston Marathon runner as an Ambassador. His accomplishment served as metaphor for the group about taking control of your PD and wellbeing. Be active. Hold on to hope. Inspire others. With their generosity of spirit, our Ambassadors promote goodwill. They deliver the best medicine that can be offered.
Lissa Kapust, LICSW presented at the Fourth World Parkinson Congress in Portland, Oregon and the Fifth World Parkinson Congress in Kyoto, Japan. She helped launch the Care Partner Lounge at the WPC 2016. She is a clinical social worker at the PD Center of Excellence at Beth Israel Deaconess Medical Center and also coordinates “WellnessWorks”, a series of exercise and education programs.
Stephanie Burrows, BS is the Clinical Research Coordinator at the Parkinson’s Disease and Movement Disorders Center at Beth Israel Deaconess Medical Center. She works with Lissa Kapust to facilitate the Ambassadors Program.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®