Hey, everyone! Time for Ataxia Profile number twenty…wow! Time is going so fast…it’s hard for me to believe we are here already. I have very much enjoyed writing every profile and hope to bring you more. Some of you reading this will need to step up and send me your information…I only have eight more profiles available after today’s…and for this week’s Profile I am happy to introduce you to Rosie Ruiz…
Rosie was thirty-five when she was diagnosed with SpinoCerebellar Ataxia. For two years numerous blood tests were done…as the doctors sent sample after sample to the lab in an effort to zero in on a specific type. Finally, after all the previous tests had come back negative, a positive result of SCA 8 was found. She remembers feelings of deep sadness at the news of a progressive disease…because she felt she was still quite young and was very active at that time.
SpinoCerebellar type 8 is a form of Ataxia that is marked by a slower progression. Even so, Rosie…like many…hates the attention that comes when one experiences difficulty walking. She relays that she feels very uncomfortable when people stare because she may jerk when walking, drag her foot, take small steps, or move slowly. Conversations can also be embarrassing for her…as she struggles with crisp diction and hears herself garbling her words.
Before Ataxia, Rosie worked at a desk job. She worked out regularly at a gym that she loved…and enjoyed going on nature hikes or long walks in the city. She still works and drives…although, Rosie notes that before the diagnosis she had better dexterity and loved to drive a stick…but now has transitioned to driving an automatic. She also notes a difference in the way she approaches public and social places. Before, Rosie was very energetic and loved meeting new people…but now she has become very apprehensive. She also quit the gym that she loved…for a preference that she now has to work-out alone.
Activities that Rosie finds to be helpful include working in her garden…which gets her outside…and spending time on her treadmill…which is helpful for her stiff leg and gives her time to enjoy her favorite Podcast.
When asked what her disability has taught her…Rosie’s response was an important one for all of us to hear…because she let this progressive, non-curable neurological disease develop a much deeper sense of humility and empathy in her life. This journey has been a growing experience for her…as she learned that she now has an opportunity to reach people…just by accepting herself and being who she is.
She would like people to know…especially those who are trying to come to terms with a new diagnosis in their lives…that life with a disability is not the end. Life is different…but it is not over.
Thank you for those words, Rosie…I personally, can testify that in my life and experiences I can see this disease as opening doors for me, providing opportunities, and giving me insights about myself and others…that I would not have realized any other way.
Thank you, Rosie…for sharing yourself with us, as we all deal with this neurological disease and seek to learn from the lives of others.
God Bless you all, my friends. Until next time…
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