My name is Jo Ann Kovar. I’m a 60-year-old resident of Ames, Iowa. I moved here 22 years ago from South Louisiana. When I first moved here, I led an average life and was able to jog, do dance aerobics and climb on chairs to reach high things in my house.
My husband and I struggled with infertility, and after eight years of marriage, I became pregnant through IVF at the age of 38. About five months into my pregnancy, I had a bad cold. After that illness, I developed slurred speech. I went to see a neurologist, and I was diagnosed with Ataxia. I could no longer jog, do aerobic dance, or climb on chairs. I had various medical tests and saw a neurologist occasionally over the next 21 years but really did not see that medical attention was improving the quality of my life.
Because I was busy raising my family, I did not pursue much medical care. My Ataxia progression has been slow enough to allow me to adjust to changes over the years. In recent years, I use handholds and some grab bars to get around my house. I use a wheeled walker in public settings and use my small dog as a walker in my neighborhood. Winter has gotten progressively more difficult for me, to the point that I avoid leaving my house. Being cold makes my body stiffer, and I fear falling as a result.
Recently my Ataxia was evaluated by doctors and staff at Mayo Clinic in Rochester, Minnesota. Through various medical tests, I have learned that my Ataxia is not autoimmune, but genetic. Tests have shown that my Ataxia was not caused by one of the most common Ataxia genes. I am awaiting the results of extended testing. My doctor at Mayo believes my condition is not life-shortening; however, no treatment exists for it. I can expect the same slow progression for the rest of my life.
I encourage you to continue research to find treatments to help people like me. I am always heartened at the innovative ways that researchers look at Ataxia and related disorders. Thanks for what you do. Research gives us all hope!