This past January I woke up with balance issues. Within a week I was using a cane. In June, my neurologist diagnosed me as having sensory ataxia. My condition seems to have progressed rather rapidly! During the past seven months, I have struggled when standing and walking. When I sit or lie down, I have no issues – I feel normal! I use a cane to stand or when taking short walks. When I take my daily 2-mile exercise walk, I use walking sticks. I struggle daily with (I wouldn’t call it dizziness), however, it is as if I have had one drink too many. During a walk I can walk straight okay, but I find it difficult to turn around or turn to the right or the left. A dark room is not my friend. I do better with my eyes open and in light. My right foot has numbness 24/7. Numbness comes and goes in the left foot. Sometimes when I stop during a walk, and just stand still, my body jerks, or I step backwards. Surprises, like noise, or an unexpected car pulling out near me, or, when walking, say I brush by an unexpected tree limb, it startles me and affects my balance, and I must stop and regroup. The good news in all this is I have had zero pain issues.
One of my biggest struggles with SA is that I don’t know anyone who has it. My neurologist said that I must learn to live with it! I am not depressed. However, I do experience occasional sadness. I am looking for hope! I will do whatever I need to do to improve my quality of life.
When Were You Diagnosed? Which Type (If Known)?
June 2024 – sensory ataxia.
How Has Ataxia Impacted Your Life?
It has changed my whole life both physically and mentally.
What is One Thing You’d Like the People to Know About Ataxia?
The ongoing physical changes.
Share Your Advice – How Can Others Support Someone with Ataxia?
Communication.
What is Your Ataxia Story?
As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.
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