Meet Melissa Schmittler. She’s got SCA3 and is a regular at our Global Ataxia Support Group meetings.
Hi, I’m Melissa Schmittler. Ataxia had been affecting my family for generations. Unfortunately, my family did not know what was causing their lack of coordination, frequent falls, wheelchair dependence, or altered speech. I found out the hard way when I was diagnosed at the age of 51 with SCA3.
My ataxia is autosomal dominant, which means it has a 50% chance of being passed down to the next generation. I inherited SCA3 from my father, who unfortunately passed away before I was diagnosed so he never knew what limited his ability. One of my daughters has tested negative and my other daughter has chosen to not be tested at this time. I have three siblings my sister has been diagnosed with MS which concerns me. Ataxia is often misdiagnosed. My two brothers are considering being tested. This disease has taught me to respect other decisions regarding testing and lifestyle. I chose to be tested for my children and to participate in research. I am hopeful I am the last family member to be affected by the disease, but I am realistic.
My childhood and early adulthood were not affected by the disease. I was a medic in the Air National Guard, married and had 2 children by the age of 25, completed nursing school, and worked full-time in the intensive care unit. I worked for hospice and palliative care prior to my diagnosis. My work was very supportive of the limitations I developed over the years. I had worked at the hospital for over 20 years and I was committed to continuing to work. One day, I fell in a patient’s room and realized I could no longer help transfer patients. My golden years would have some stumbling blocks.
I have been able to spread Ataxia awareness by speaking to medical students regarding SCA3 and educating them on symptom management and quality of life. I am hopeful by participating in research will help future generations. My lifestyle has changed but I am thankful for every day I get to spend with family and friends.
We may not have a cure, but we do have an increased knowledge and support system. Find those gadgets that keep you walking, help you open things, make you safe, and let you do you. The disease is hard, but the world is always changing, stay positive!!!
Thanks for sharing your story Melissa Schmittler!
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