My family helps me manage the symptoms of Huntington’s

Kerry Agee smiles with her husband, Cody Agee. (Photos courtesy of Kerry Agee)

This is Kerry Agee’s story:

Hello! It’s a pleasure to meet you. I’m Kerry, 44, wife of a Gen-Xer, mother to a teen, and lover of dance, travel, “Lord of the Rings,” and Hello Kitty, as well as several professional pursuits. I’m half-Filipina and half-Caucasian, with a mom who’s Filipina and a dad who’s of Irish, English, Scottish, and French Canadian descent.

The Agees celebrate on their wedding day.

More personally, I am gene-positive for the incurable “devil’s disease”: Huntington’s disease. The onset of symptoms typically occurs in one’s 30s or 40s, which is where I’m at right now. As there’s no cure for the disease, the name of the game is to slow progression by managing symptoms like anxiety, depression, and mood issues, as well as making lifestyle changes — such as a healthy diet and daily exercise (e.g., walking and yoga) — that keep the body and brain fit and fighting.

For me, stress reduction is another mandatory ingredient in managing symptoms of Huntington’s. To that end, my beloved dogs, who are both rescues of every sort, provide loyal and consistent kindness and support. If I am having a rough day, they can tell and they’re gentle. No matter what, they never play as rough with me as they do with my husband, who’s a tall, tough biker.

My family, including my husband and daughter, does their best not to stress me out, as it drives me to this chaotic edge that I can’t manage. All I can do is separate and calm myself. Deep breathing helps when I’m in that state (a la “smell the roses, blow out the candles”), along with reading my favorite poetry or supportive words, dancing, yoga, and ballet workouts. Part of the battle is finding what works for you, as well as mentally cataloging (or even outright listing) what stresses you out beyond management, so that your loved ones can help you.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #HDSpotlight, or read the full series.