ALS Saved My Life… until it didn’t
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Most people know life will not necessarily go as they planned. But what do we do when nothing goes as we had hoped? How do we cope with unpredictable changes in body and spirit – changes that require constant shifting of our view of ourself, other people, and the world? Jenni, diagnosed in 2009 with Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig’s Disease), has been forced to find answers to these questions every day. With the hope of helping others move forward after life-altering events, Jenni shares her story of life with ALS, outlining both the practical and existential changes needed to adapt and thrive. Embodying the idea that courage does not always roar, Jenni reveals the combination of self-reflection, radical acceptance, grit, and social support that have allowed her to remain true to herself while living her life to the fullest.
ASIN : B07CSHQPR1
Accessibility : Learn more
Publication date : April 30, 2018
Language : English
File size : 34.6 MB
Simultaneous device usage : Unlimited
Screen Reader : Supported
Enhanced typesetting : Enabled
X-Ray : Not Enabled
Word Wise : Enabled
Print length : 291 pages
Page Flip : Enabled
Best Sellers Rank: #294,364 in Kindle Store (See Top 100 in Kindle Store) #266 in Biographies of People with Disabilities (Books) #1,765 in Parenting & Relationships (Kindle Store)
Customer Reviews: 4.6 4.6 out of 5 stars 113 ratings var dpAcrHasRegisteredArcLinkClickAction; P.when(‘A’, ‘ready’).execute(function(A) { if (dpAcrHasRegisteredArcLinkClickAction !== true) { dpAcrHasRegisteredArcLinkClickAction = true; A.declarative( ‘acrLink-click-metrics’, ‘click’, { “allowLinkDefault”: true }, function (event) { if (window.ue) { ue.count(“acrLinkClickCount”, (ue.count(“acrLinkClickCount”) || 0) + 1); } } ); } }); P.when(‘A’, ‘cf’).execute(function(A) { A.declarative(‘acrStarsLink-click-metrics’, ‘click’, { “allowLinkDefault” : true }, function(event){ if(window.ue) { ue.count(“acrStarsLinkWithPopoverClickCount”, (ue.count(“acrStarsLinkWithPopoverClickCount”) || 0) + 1); } }); });
9 reviews for ALS Saved My Life… until it didn’t
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Original price was: $9.00.$5.99Current price is: $5.99.
violingirl –
Amazing Story
Jenni’s book is an incredible story of how she has beaten the odds and the doctors’ predictions for her. At every turn, she has come up with solutions that have allowed her to function better and longer as she has been gradually losing her faculties. She is her own best advocate and is surrounded by a wonderful family that has been called upon to help her in the most extreme ways possible. She tells her story with so much openness and honesty that it inspires great compassion and empathy from the reader. Additionally, there are chapters by Jenni’s mother, husband and son, which helps to put their roles in perspective, many tributes from her “village” of helpers, and a plethora of photos. In spite of the tragic subject matter, it’s very easy to read, reads quickly, and contains plenty of humor! The cover art is phenomenal, as well.
2BoysMomma –
A candid look at ALS and living in the moment.
We are all on a journey that leads to death. On the way, we live in moments and share with people. And this book is about the hard truths of really being in those moments and present along with the people surrounding a loving, keenly observant woman with the relentless disease, ALS. The candid observations of a mother, wife, friend, and doctor reflect on the practical physical adaptations for best managing ALS while taking us through the stages of emotional realizations that acceptance of the uncontrollable conditions, her failing body, is the only way to keep true to spirit. We all have so much to learn about love and life. Jenni shows that if you really pay attention to others and yourself, and find the strength to use love to connect your community to you and to each other, you will live happy and find joy despite the hard things and sometimes because of the difficulties during the journey.
Janell –
Inspiring
What a beautiful book. Jenni’s story is certainly an inspiring one. I don’t remember the last time I cried so much while reading a book. As someone who quickly checks out during biographies and memoirs, I was constantly engaged while reading this one. I felt like I was hearing a story told by a dear friend and was engaged 100% throughout the entire book. I loved to hear all the ways she was able to persevere and extend her life well past the 18-24 months she was given after her diagnosis. This is a must-read for those touched by ALS, of course, but also for ANYONE else!
reedmother –
What a woman.
Definitely an inspiring story. It really was a saving grace for her that she didn’t lose her smile. Some people do and that has got to be so sad. One thing I didn’t understand (that kept being repeated) is that doctor’s statement of living 18-24 months. That is totally false. The general rule about ALS is a timeline of 3-5 years. That doctor was way off base by saying something like that. Unfortunately, they used his prediction throughout the book – and everywhere else in stories on-line (and the documentary) to dramatize her survival. Two of my good friends have/had ALS. Nancy lived for 7 years and my other friend is still going after 6 years. So, of course, as one doctor pointed out, nobody can actually predict life expectancy with that awful disease.
Philautia –
Author very brave
This book is written as though you are chatting casually with the author. She was painfully honest and open, and provided for her husband, young son and mother to share their honest opinions about their experience. Even if you don’t want to read the book, anyone with ALS or their caretakers,should check out the index that is filled with information. My longest and dearest friend was just diagnosed with ALS at age 68. The author was in her 30s. My friend could not get half way through the book because she knew she was not going to do so many of the things the author did to stay alive. My friend did, however, say that were she in her thirties with an infant when diagnosed, she’d do exactly what the author did. Everything.
Amazon Customer –
Excellent read!
This book was delivered on a Thursday evening and was finished by the wee hours on Friday. It obviously did not disappoint. It was a page turner full of inspiration, sadness, anger and every emotion in between. Jenni does a wonderful job of sharing things from her perspective and she’ll have you shedding tears of sadness and joy. I also love how the book looks at the point of view of those closest to Jenni, her son, husband and Mom. This reminded me of a book in the Wonder series. It allowed the reader to see the perspective of the loved ones living with someone with ALS. All we can hope for is that one day they will find a cure for this crippling disease.
Lindsay M. Baum –
Great medical resource!
Finished this book last night! Gifted it to a few close friends this week and we all just read and read. Honestly, I couldn’t stop picking it up between Sunday and Monday night! I’m so impressed with Dr. Jenni Berebitsky, Jeff Berebitsky and Joyce Kleinman, and not least of all, your son Phillip. This book is an incredible resource for anyone who knows someone with ALS- and particularly for doctors and their patients. It’s truly a story about living. Our clinic has begun recommending your book. Thank you for your vulnerable, accessible, well-written story and resources. I hope you know how many lives will be gifted your wisdom for years to come.
Ivan Farber –
It will help you empathize with people with ALS or people who are losing body functionality due to aging
ALS Saved My Life… until it didn’t… was very well written. Because of ALS, Dr. Berbitsky couldn’t even use her hands to write it. I found it very interesting and meaningful as I learned about her personal journey to increasingly greater and greater loss of simple and routine bodily functions. It even made me grateful to be able to scratch my nose—something she hasn’t been able to do for years. I feel it will help you empathize with anyone who has ALS or anyone who is aging (which all of us!) and will be losing our body functionality over time.
Amos Blanton –
Jenni Berebitsky is an incredibly strong woman, capable of living a meaningful life under the most challenging circumstances. This book will be an inspiration to anyone diagnosed with ALS, their supporters, and even those who’ve never had to face this disease.