Alexandra Lopez-Taylor: Live Your Best Life

Hi, my name is Alexandra Lopez-Taylor. I was officially diagnosed with Spinocerebellar Ataxia Type 2 at the age of 28. Before diagnosis, I was struggling with my balance and coordination. M first neurologist and tons of tests resulted to be non-conclusive. Unfortunately, like many others, my diagnosis took 3 long years and a second opinion from another neurologist. Since being diagnosed, my family and I realized that Ataxia runs on my father’s side of the family. My Dad’s sister passed way in her early 30’s in Venezuela (we assume from Ataxia though no testing was ever done).

Before Ataxia interfered with my life, I was an Occupational Therapist for about 3 years. In my 20’s, I enjoyed going out with friends, line dancing, and running stairs. With my Ataxia, life is somewhat different. I no longer work as an Occupational Therapist, drive, or enjoy line dancing. I continue to spend time with friends but with the use of a walker. I also took part in speech and physical therapy for about 6 months. Before COVID-19, I was able to work out in the gym 5 days per week. These days, while in the house, I “furniture walk” to get around. Fortunately, I can care for my newborn niece, help my nephew with his homework, and cook with help.  I have also been able to attend 3 Annual National Ataxia Foundation Conferences in Philadelphia, Las Vegas, and Denver. I was able to socialize with others facing Ataxia and educate myself on the illness. I am also an active member of several Facebook Ataxia Support Groups.

To help raise awareness for Ataxia, I have spoken with college students pursuing Occupational Therapy. I’ve been able to publicly speak to college students on four different occasions. I spoke about my rare disease that is known by so few, the symptoms of this disease, and how I live my best life from day today. Through this work, I hope to contribute to developing awareness for Ataxia. I often grocery shop at Publix with the use of a scooter to help prevent dangerous falls. A scooter helps me to shop without having to worry about my legs giving out or tripping on my own feet. I also use a walker for this same reason. These aids allow me to be independent.

Even though I have Ataxia, I still desire to have children and a family with my husband, Tifton. I urge others to not allow Ataxia to stop living the life you’ve dreamed of or desire for yourself. The best advice I can offer others who are living with Ataxia is to not worry about what people think; put your safety first. Live your best life and do what you can. Live your new normal. No matter what your wish is, find a way to get it done.