Veronica Denis: My New Normal

Hi, my name is Veronica Denis and I reside in Southern Maryland, 30 minutes outside of Washington, DC. I am a wife, mother of 2, sister, aunt, and friend. I was diagnosed with Spinocerebellar Ataxia Type 2 (SCA 2) in 2018 at the age of 46. My SCA symptoms began in my 30’s with bouts of unusual fatigue, imbalance, and the classic staggered walk. Over the years, my symptoms became increasingly worse with hand and head tremors, shakiness of legs, extreme fatigue, and inability to stand for long periods of time.

Prior to my diagnosis, I was in a career I loved; a middle school teacher of 21 years in both math and English. As a teacher, I prided myself on encouraging my students daily; an inherent skill I find useful today. My hobbies included shopping in the mall for hours; reading various fiction and non-fiction books; attending Sunday Services, Women Conferences, and Couples Ministry through my church; and spending time with friends/family. My days are now primarily spent on self-care including exercising, resting, bible study, and managing my new normal. My new normal includes shopping online with free delivery because I’m unable to physically shop in the malls, reading books, attending online Church services, and spending quality time with friends/family.

Since my diagnosis, I am on disability retirement full-time and have been more intentional about living my best life. I have seen my favorite artists from the 90’s: Mary J. Blige, Keith Sweat, Kem, Bell Biv Devoe with Bobby Brown, SWV, Xscape, Jill Scott, and Fantasia. I also jump at any opportunity to tutor kids, my life-long passion. I rely on my faith to help me navigate this illness and my Ataxia friends, Mary Beth Farley, Damar Smith, Jo Greenslet Jones, Stacie Reddish, Marilyn Hostrawser, Terry Shepherd, Norma Lutkenhouse, Kathy Rowland, and Angela Bonney. I am also happily involved in spreading get-well sentiments, sympathy, or encouragement through the Card Ministry at my church, First Baptist Church of Glenarden in Landover, MD.

I am also a member in several Facebook groups (over 20) involving those suffering from Ataxia or their caregivers. My most significant insight during this illness has been to work within your new normal, do what you can, and to find your purpose amidst this illness. My purpose is to raise awareness to a disease with no cure or treatment and to mother my young adult children, ages 18 and 19. I frequently use this platform to educate myself, encourage and motivate other Ataxians, and receive support from those with Ataxia. I am involved with the National Ataxia Foundation, Walk n’ Roll to Cure Ataxia DMV (DC, MD, VA area), African American Ataxia Support Group of the DMV and Hope for Ataxia. I am currently participating in the Biohaven clinical trial at the University of Southern Florida.