I met RH, a patient living with moderate Huntington’s disease, in clinic last year. Her symptoms continue to progress rather rapidly. She and her spouse attend most of our Wellness Support meetups. Her spouse experiences high levels of caregiver stress, and while they rarely engage with the group or speak to other members, they consistently attended each month.
Last month, however, something shifted. RH spoke to me and some of the other women in the group about the physical changes and challenges of HD and the impact on her marriage. She finally opened up and stayed for the entire meeting, which is a change from her usual 30-45 minute visits. I could see a light in her as she connected with other group members and felt safe to share her story.
During the meeting, I was able to learn more about her needs and concerns from a patient perspective. She cried and hugged me afterward, telling me that she loved me and thanking me for always listening. Her husband shared that she always looks forward to clinic so she can see me. It was heartfelt and sincere.
Moments like these remind me how important it is to hold these meetups and maintain a presence in clinic. They allow us to see the firsthand impact of our services. My role is client-facing, and witnessing RH’s personal growth and change over the past year has been deeply rewarding.
