In August, Quest had the privilege of spotlighting published authors living with neuromuscular disease and sharing their books in celebration of National Read A Book Day. With so many talented and accomplished writers in our community and holiday shopping right around the corner, the second installment of our Spotlight on Community Authors blog series is an opportunity to share even more books. We selected a compilation of books from a wide variety of literary genres that showcase the strength, passion, creativity, expertise, and personal stories of authors in the neuromuscular disease community.
Including motivational books, personal memoirs, fiction, poetry, and books about parenting, you’re certain to find something here for every book lover on your holiday shopping list – or to add to your own wish list!
Don’t Let Your Struggle Become Your Standard by Jose Flores
Forty-eight-year-old Jose Flores, who lives with spinal muscular atrophy (SMA) and resides in Fort Lauderdale, Florida, is a best-selling author and professional speaker. In his book, Don’t Let Your Struggle Become Your Standard, Jose shares his insights and expertise about overcoming struggles, harnessing a positive mindset, and recognizing the power within to triumph through life’s challenges. The “mindset disruptor” joined us in 2023 on the Quest Podcast Episode: New Year, New Mindset to share his experience growing up with a physical disability and to give advice on using the power of your mind to overcome anything that life throws your way. The podcast and his book both dive into a truth that he is eager to share with others: “In life, struggles are inevitable. But being defeated by them is optional.”
“I wrote Don’t Let Your Struggle Become Your Standard to show people that your circumstances don’t define you—your choices and mindset do. As you dive into the pages of this book, I will show you creative and practical ways to overcome many struggles through my own personal stories and experiences. I will also show you ways to manage your mind and get rid of the negative thoughts that try to hinder your success,” Jose says. “I want to empower others to rise above life’s toughest challenges, break free from limiting beliefs, and realize they were created for more. This book is a reminder that your struggle can be the steppingstone to your greatest success.”
Check out English, Spanish, and Audio Book options.
Courage, Motivation, and Tenacity by Ed Linde
Ed Linde, 68, shares his journey living with Charcot-Marie-Tooth disease (CMT) in his memoir Courage, Motivation, and Tenacity. The MDA Ambassador and Riverview, Florida resident invites the reader into his personal experiences living with a progressive disease – the challenges, insecurities, disappointments, successes, and adaptations. As his disease progresses, Ed embraces the question “What do I want to do and how can I do it”, learning to adapt to ever-changing conditions with an unwavering faith in the ability to overcome obstacles.
“I wrote this book to share my journey of living with a progressive disease, not as a story of struggle, but as a testament to resilience and the power of a never-give-up attitude,” Ed says. “My goal is to offer hope, strength, and encouragement to others facing their own challenges—reminding them that even in the face of uncertainty, we can choose determination over defeat.” Read more about Ed’s story here.
The Art of Living, The Joy of Fighting ALS by Michelle Yelland
Michelle Yelland, a 53-year-old Pennsylvania author living with amyotrophic lateral sclerosis (ALS), invites readers into her life with raw honesty, grace, and humor. Her memoir, The Art of Living, The Joy of Fighting ALS, shares her deeply personal experiences finding strength, love, and joy in the fight of her lifetime. Michelle invites us to seek hope and strength – and to remember that joy can coexist with pain.
“The Art of Living, The Joy of Fighting ALS is not just about surviving a chronic illness — it’s about embracing life more fully because of it. It’s about abiding through illness, finding meaning in everyday beauty, and showing others that we are more than our diagnosis,” says Michelle. “I wanted everyone to know what I was doing every day and to share what life with ALS is really like. A lot of people don’t know much about it—even people I worked with didn’t really understand. Writing the book was a way to give people that insight.”
Learn more about Michelle’s journey here.
As Life Went On, Caste Aside, and Life without Love is Impossible by Pinky Patel
Pinky Patel is a 43-year-old, multi-book author living with Friedreich’s ataxia (FA). Born in India, Pinky now lives in Cartersville, Georgia, and has published a personal memoir, a novel, and a collection of poetry.
- As Life Went On is a collection of articles and essays recording Pinky’s life experiences. She wrote the autobiography with hopes of raising awareness about the deceptions that society tells us about life with a disability. Focusing on the aspects of our culture that sometimes base perceived abilities on appearances, Pinky challenges false narratives about living with a disability and embraces empowerment.
- Caste Aside is a romance novel set in Australia that includes themes of living with a disability, cultural differences, family loyalty, and love. The story is a blend of deep moments and comic relief, following the fictional romantic journey of Preya Patel as she battles herself between following her heart and honoring her family and culture’s expectations of her relationships. “It’s a tear-jerker with comical moments,” Pinky says. “This multicultural romance novel can take your mind off of a long day!”
- Life without Love is Impossible is a collection of romantic poems (available as a Kindle ebook) inspired by Pinky’s own experiences with love. She shares her own deeply personal insights that universally resonate with anyone who has ever been in love or searching for love.
Just say, Oscar by Oscar Coto
Thirty-three-year-old Oscar Coto is a California-based poet who lives with Duchenne muscular dystrophy (DMD). His book, Just say, Oscar, is a collection of poems dedicated to the greatest love that he ever had – and lost. Oscar takes his readers on a rollercoaster of complicated emotions through a journey of falling in love, losing love, lingering regret, and the lasting impressions they leave on the heart.
“I wrote this book to honor the most profound love of my life – a connection that left echoes in every corner of my soul,” Oscar says. “Through poetry, I have captured the ache of loss, the beauty of longing, and the dreams that still refuse to sleep.” Read Oscar’s poetry compilation here.
Mothering with Muscular Dystrophy by Savannah Jordan
Savannah Jordan is a California-based, 32-year-old mother of two, living with limb girdle muscular dystrophy (LGMD) 2B (R2). She describes her book, Mothering with Muscular Dystrophy, as a “how-to-guide” for mothers living with neuromuscular disease. She documents her personal experiences from diagnosis, pregnancy, delivery, and infancy – through her current chapter parenting school-aged children. Savannah hopes to reach others living with disabilities who might be hesitant or concerned about pursuing motherhood and that her book can provide them with empowerment and tangible tools to navigate parenthood.
“I wrote this book because I wished someone else would have written one before I became a mother. There were truly no resources available for disabled mothers that I could find, and this is my opportunity to offer my knowledge,” Savannah says. “My story is meant to empower other women with disabilities who are struggling with confidence about being a parent. My hope is that, through my story, they can learn how to manage each parenting phase with ease. Motherhood is the greatest blessing in my life, and I want others to know that it can be for them too!”
Read more about Savannah’s parenting journey here.
Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease by Nikki McIntosh
Nikki McIntosh has learned a lot about parenting a child with a rare disease throughout her journey with her 13-year-old son, Miles, who lives with spinal muscular atrophy (SMA). She wrote Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease as a compassionate and actionable guide to help other mothers navigate the complexities of rare disease parenting – noting that it is the guide that she wishes she had when her son was first diagnosed. She also hosts The Rare Mama Podcast and provides strategies and resources for parents to navigate their child’s rare disease on her website.
Nikki aims to empower mothers with hope, strength, and a sense of sisterhood on a unique path by helping caregivers feel less alone and better equipped for their journeys. “It’s a blend of heartfelt encouragement with practical tips for advocacy, self-care, and community connection,” Nikki says. “Drawing from over a decade of hard-won lessons, I poured everything I’ve learned into this book – to save other moms time, help them feel empowered, offer an infusion of hope, and ensure that no rare mama ever has to walk this road alone.” Read more here.
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