The Dancing Warrior with HD

As November rolls around, I find myself reflecting on everything I’m thankful for this year. It’s the perfect time to pause and appreciate the many blessings in my life. Sharing My Story First and foremost, I’m incredibly thankful for the opportunity to share my journey through this blog. Starting it earlier this year has been such a rewarding experience. It’s given me a platform to connect with others and put my thoughts and experiences into words. While I had hoped to post more frequently, I’ve learned to embrace my husband’s wise advice: do my best, let go of rigid schedules, and focus on the joy this brings me. My Rock, Fernando I can’t express enough gratitude for my husband, Fernando. He has taken on so much this year, especially since I’m no longer able to drive. From managing our finances and property to cooking, cleaning, and driving me to countless appointments, he does it all with love and patience. Navigating the challenges of my disability hasn’t been easy, but God truly k...

  The next topic I’d love to share with you is the HDSA National Youth Alliance (NYA). This incredible group brings together young men and women, ages 9 to 35, from across the country, empowering them to get involved with their local HDSA chapters, fundraising events, and advocacy efforts for Huntington’s disease (HD). It's a space where young people can connect, share their experiences, and support each other. I’ll never forget my first national convention in Atlanta, Georgia in 2004. I had heard so many wonderful things from people on the HDSA board about how life-changing these conventions could be, and I was beyond excited. When I arrived, I immediately felt like I had found my tribe. For the first time since testing gene-positive, I wasn’t alone. I was surrounded by others my age who understood what I was going through because they had similar stories. It was truly eye-opening. One of the best parts of the convention is NYA Day, where the group gets together for fun activities...

  I want to share the story of how I got involved in organizing the first five years of the Team Hope Walk - Sacramento. This is the Huntington’s Disease Society of America’s (HDSA) fundraising and awareness raising event in Sacramento. I had been actively volunteering with HDSA, helping with various events and activities. After attending several walks, I remember when Penny Riley, a wonderful woman who worked for HDSA, asked me if I’d like to host and organize the first walk in Sacramento. Penny has always been like a mother figure to me, and even after all these years, she’s still a part of my life—a true angel. I was beyond excited that Penny thought of me for this. My best friend, Kristen Stoll, and I co-ran the event. We pulled together an amazing team of friends and family to help with planning. We held our first walk in William Land Regional Park, a place that holds special memories for me, as it’s where I grew up. Friends and family, including my dad, helped gather raffle d...

  Hey everyone, I wanted to share an update about my new neurologist, Dr. Gates. I feel incredibly blessed to have the opportunity to work with him. Back in April, I had my first appointment with Dr. Gates. Along with the usual HD-type tests, he also conducted an eye test, which was new for me. During our conversation, Fernando mentioned that he’d noticed that I had a stiff neck and a peculiar way of turning my head. The eye test and other evaluations revealed a weakness on my left side, which was mind-blowing to discover. On that first appointment Dr. Gates gave me some simple brain exercises to do throughout the day, and he also recommended a vitamin to help manage my stress and keep me calm. Dr. Gates also put me on a very strict anti-inflammatory paleo diet for the first four weeks, similar to an elimination plan, to identify which foods affected me negatively. I met with him weekly during this period, and every week I saw significant improvements. By my last appointment, I had...

  The next chapter in my life that I want to share with you in chronological order is about my husband, Fernando. I met him soon after I had been genetically tested for Huntington's disease (HD). One of my best friends, who was dating Fernando's friend, invited me to visit her boyfriend at work, and that’s when I first met Fernando. Later, he told me that the moment he saw me, he told his friend, "I’m going to marry that girl one day." We were friends at first because he was in a different place than I was then. We started hanging out casually for months until one day on his boat, he asked me out, and I said yes. My best friend, Bryan Medrano, who I mentioned before, had been living with Fernando as a housemate for a while. We were all hanging out one day, and together Bryan and I told Fernando that we both had Huntington's disease. He cried with and for us both. We have been inseparable ever since that day. We started going to church together and doing all of our...

  As May rolls around, it brings with it Huntington's disease awareness month, a time when I typically flood social media with awareness posts. But this year, I wanted to share something special with you because it's also the month of the annual Huntington’s Disease Society of America (HDSA) convention. For me, one of the most crucial aspects of my journey with HD is the incredible community I've found along the way. I vividly recall the time when I was diagnosed as gene positive at 18 years old and how getting plugged into the HDSA changed everything for me. It was there that I met some of my closest HD brothers and sisters, including my dear friend Bryan Medrano. Bryan and I quickly bonded and became inseparable. We joined forces to help out at events and fundraisers, and I found solace and support within the welcoming embrace of the Northern California chapter. I also found the Johnson family (or maybe they found me), who took me under their wing with boundless love and ...