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!