• Posted by katie-griffith on September 16, 2021 at 10:00 am

    Last week, I was able to participate in a Kickstarter for a new book that is coming out called “From Diagnosis to Destiny” by Jacob Thompson aka TEN20. Jacob has FA, and I’m interested in learning more about him and his perspective. Have you read any books written by someone with FA or one of their caregivers? If so, please share in the comments!

    katie-griffith replied 2 years ago 4 Members · 9 Replies
  • 9 Replies
  • danita

    Member
    September 16, 2021 at 2:12 pm

    I have read:
    • Living the Decision: A Pocket Guide to Cramming 72 years of living into 27.</span></h1>
    • Shifting into High Gear

     

     

  • nelda-van-schoick

    Member
    September 16, 2021 at 2:13 pm

    Hi all–I do not have a particular book about FA but I recently bought one about a young man with SMA–spinal muscular atrophy. It is a fiction book with a mystery involved. What it so universal though is how the main character describes his disability and how it affects all aspects of his life. I think a lot of those familiar with FA will find it spot on in describing how FA affects them.

    The book was written by Will Leitch who is mostly a sports journalist. He lives here in Athens, GA and some of his family’s best friends adopted a little boy who ended up having SMA.

     

    Good book!

    Nelda

     

  • katie-griffith

    Member
    September 16, 2021 at 3:15 pm

    Thank you for the recommendations, Danita! I read Kyle Bryant’s book and loved it. I’ll have to check out “Living the Decision!”

    That sounds very interesting, Nelda! I’m sure it will still resonate. Thanks for the recommendation. Is it titled “How Lucky?”

    • katie-griffith

      Member
      September 28, 2021 at 7:51 pm

      I finished “How Lucky” today and really enjoyed it!

  • christina-cordaro

    Member
    September 16, 2021 at 3:19 pm

    I’ve read Shifting Into High Gear by Kyle Bryant!

    There’s also Stare At Me by FA Patient, Joey Mullaney that just came out!
    https://www.amazon.com/Stare-Me-Being-Blindsided-Brings/dp/1734564237

  • katie-griffith

    Member
    September 17, 2021 at 7:59 pm

    Thanks for sharing, Christina! I’ll have to order that one as well.

  • christina-cordaro

    Member
    April 6, 2022 at 1:04 pm

    I recently came across this book on Amazon Kindle.

    It is written by Kirsty McPake and she guides us through her journey of living with Cerebellar Ataxia. Her goal is to raise awareness of Ataxia and educate those who are unaware of this life altering condition.

    https://www.amazon.com/Calamity-Kirsty-My-wobbly-world-ebook/dp/B09S3XHG5S

    • katie-griffith

      Member
      April 7, 2022 at 7:35 am

      Thanks for sharing, Christina! Another one to add to the list 😊

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