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A Mother’s Journey: Navigating Ataxia Telangiectasia with Love and Resilience

Michael MantzJuly 12, 2024Ataxia Awareness, Resilient Voices

In 1956, Josephine’s son was born healthy and seemingly normal. By nine months, he walked with assistance, and his language skills developed well, though speaking proved difficult. Frequent falls and coordination issues marked his early years. At 5, doctors discovered severe vision problems, and while glasses helped, his balance and coordination continued to worsen. His...

Ian’s Story: Living with Ataxia-Telangiectasia

Michael MantzJuly 11, 2024Ataxia Awareness, Resilient Voices

Ian, born in 1956, shares his life experiences with ataxia-telangiectasia (A-T), an autosomal recessive condition. At a young age, teachers noticed he fell more than other children, and at seven, he was misdiagnosed with cerebral palsy. Despite his challenges, Ian enjoyed his childhood, especially piano lessons, until spasms forced him to stop. At eleven, Ian...

How the Right Shoes Can Make All the Difference for Mobility Issues!

Michael MantzJuly 3, 2024Ataxia Awareness, My Story

Right shoes take you good places Shoes have always been important to me. I remember begging my parents for the newest and “coolest” styles, mainly basketball shoes. I know I am not the only one – almost everyone has gone through the same routine at some point. As my Ataxia has progressed, I have searched...

Embracing Gratitude: Finding Joy in Life’s Little Blessings

Michael MantzJune 29, 2024Ataxia Awareness, Resilient Voices

Change the way you look at things, and the things you look at change. Wayne Dyer Perspective Changes Everything is how Lily Pierce feels…… Perspective means realizing that others’ life experiences may completely differ from ours. What we view as normal and what we expect depends on how we grew up, what we see around us,...

Faces of Ataxia: Yesenia Ramos’ Journey and Poetry

Michael MantzMay 21, 2024Ataxia Awareness, Resilient Voices

At twenty-three, Yesenia Ramos from Edmond, Oklahoma, reflects on her life with Friedreich’s Ataxia (FA), a condition she was diagnosed with at the tender age of six. Her Mexican heritage is a significant source of pride, and she lives with her supportive parents and an older brother who also has FA. Yesenia’s path to diagnosis...

Wheelchairs are not Embarrassing!

Michael MantzMay 14, 2024Ataxia Awareness, Resilient Voices

At least, they shouldn’t be. But here we are… Lily Pierce It’s sad when people limit their lives rather than use a mobility aid. Many feel embarrassed to rely on a walker or wheelchair due to societal stigma. At 19, Lily’s Friedreich’s Ataxia progressed, leading to frequent falls. After resisting, she finally bought a rollator...

Practical Tips for Living Well with Ataxia

Michael MantzMay 6, 2024Ataxia Awareness, Resilient Voices

Life is about accepting the challenges along the way, choosing to keep moving forward, and savoring the journey Roy T. Bennett In Richard’s insightful blog post, he shares his journey of adapting to life with Ataxia through practical solutions and supportive technology. When he and his wife moved into their forever home in 2013,...

Incorporating Mobility Aids: A Journey from Stigma to Empowerment

Michael MantzMay 2, 2024Ataxia Awareness, Resilient Voices

When we think about mobility aids, we often overlook the emotional journey that accompanies their use. In her blog post, Elise explores this journey, reflecting on the stigma and internal struggles she faced before fully embracing the use of mobility aids. This story resonates deeply with many of us who have felt hesitant or embarrassed...

Embracing Change: Chanda Huy’s Journey with Hereditary Spinocerebellar Ataxia

Michael MantzApril 13, 2024Ataxia Awareness, Resilient Voices

In a heartfelt account shared by Jason Wolfer, we meet Chanda Huy, who is courageously navigating the challenges of a recent diagnosis of hereditary Spinocerebellar Ataxia. Just a year ago, Chanda received this life-altering news, inherited from her father, which has profoundly impacted her daily life. Simple tasks that were once effortless for Chanda—like walking,...

Empowering the Ataxia Community: A Journey Towards Hope and Collaboration

Michael MantzApril 8, 2024Ataxia Awareness, Resilient Voices

Individually, we are one drop. Together, we are an ocean. Ryunosuke Satoro As a person with a lifelong movement disorder, I understand the challenges that we all face living with Ataxia. We see the world differently than most! But through the ups and downs, there’s a definite spirit of resilience. We are all living our...