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Tales from the Bed
Jenifer Estess is a woman on the verge: She's about to launch her own company; she's looking buff and dating vigorously; she's driving in the fast lane—with the top down. At the age of thirty-five, Jenifer dreams of falling in love and starting a family. Then she notices muscle twitches in her legs. Walking down a city block feels exhausting. At first, doctors write off Jenifer's symptoms to stress, but she is quickly diagnosed with ALS, a fatal brain disease that is absolutely untreatable.
"Max out your credit cards and see Paris," suggests one doctor. Instead of preparing to die, Jenifer gets busy. She dreams deeper, works harder, and loves endlessly. For Jenifer, being fatally ill is not about letting go. It's about holding on and reaching—for family, friends, goals. Jenifer's girlhood pact with her sisters Valerie and Meredith—nothing will ever break us apart—guides them as Jenifer faces down one of the most devastating illnesses known to humankind. That same enduring pact inspires the creation of Project A.L.S., a movement started by the sisters that changes the way science and medicine approach research for ALS and the related diseases Parkinson's and Alzheimer's, and which has already raised more than $18 million. Will Project A.L.S. help scientists discover medicine in time for her?
Jenifer answers these questions and others in this beautifully written and wholly inspiring memoir that celebrates a life fuelled by memory. Tales from the Bed forces us to reconsider society's notion of "having it all," and illustrates, more than anything, the importance of endurance, hope, and, most of all, love.
"Max out your credit cards and see Paris," suggests one doctor. Instead of preparing to die, Jenifer gets busy. She dreams deeper, works harder, and loves endlessly. For Jenifer, being fatally ill is not about letting go. It's about holding on and reaching—for family, friends, goals. Jenifer's girlhood pact with her sisters Valerie and Meredith—nothing will ever break us apart—guides them as Jenifer faces down one of the most devastating illnesses known to humankind. That same enduring pact inspires the creation of Project A.L.S., a movement started by the sisters that changes the way science and medicine approach research for ALS and the related diseases Parkinson's and Alzheimer's, and which has already raised more than $18 million. Will Project A.L.S. help scientists discover medicine in time for her?
Jenifer answers these questions and others in this beautifully written and wholly inspiring memoir that celebrates a life fuelled by memory. Tales from the Bed forces us to reconsider society's notion of "having it all," and illustrates, more than anything, the importance of endurance, hope, and, most of all, love.
256 pages, Paperback
First published January 1, 2004
24 people are currently reading
1313 people want to read
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Displaying 1 - 30 of 198 reviews
July 26, 2012
This is a book about Jenifer Estess' battling with ALS, a fatal disease which has know cure and no treatment.
I think Ms. Estess' was a very intelligent woman, fierce, determined and beyond sad that she befell the fate of ALS.
That being said, I did not think this book was very inspiring, funny, touching or anything else really. At no point in the book (which was transcribed the the author's sister, Valerie) did I feel like she was being honest about the suffering of ALS or giving a true-to-heart story about her personal struggles with it. This book came across as one big celebrity name-drop after another. And another. And another.
I get the picture, lady. Celebrities clearly loved to hang out at your bedside and keep you company in your lush private jets, luxurious vacations, designer clothes and all the other fancy things you couldn't stop talking about.
Take out all the fluff and there is an inspiring story. A woman and her sisters embarked to raise a company up from nothing and turn it into the foremost (in 2003) research company for ALS (entitled: Project A.L.S.). That part IS inspiring. There was no medicine ready to use on Jenifer before her passing but the change they have brought to the neuroscience studies is incredible. In the future, I believe many people will be saved directly because of their tenacity in assembling the team and project.
Now, the last chapter was ridiculous, in my opinion. It was obviously written 100% by her sister because it opened up on the morning she [Jenifer] passed away. Yet the chapter continues on in Jenifer's POV, describing the flying feeling of death and peering down into her sister's lives after crossing over. Ho-hum to that.
I think Ms. Estess' was a very intelligent woman, fierce, determined and beyond sad that she befell the fate of ALS.
That being said, I did not think this book was very inspiring, funny, touching or anything else really. At no point in the book (which was transcribed the the author's sister, Valerie) did I feel like she was being honest about the suffering of ALS or giving a true-to-heart story about her personal struggles with it. This book came across as one big celebrity name-drop after another. And another. And another.
I get the picture, lady. Celebrities clearly loved to hang out at your bedside and keep you company in your lush private jets, luxurious vacations, designer clothes and all the other fancy things you couldn't stop talking about.
Take out all the fluff and there is an inspiring story. A woman and her sisters embarked to raise a company up from nothing and turn it into the foremost (in 2003) research company for ALS (entitled: Project A.L.S.). That part IS inspiring. There was no medicine ready to use on Jenifer before her passing but the change they have brought to the neuroscience studies is incredible. In the future, I believe many people will be saved directly because of their tenacity in assembling the team and project.
Now, the last chapter was ridiculous, in my opinion. It was obviously written 100% by her sister because it opened up on the morning she [Jenifer] passed away. Yet the chapter continues on in Jenifer's POV, describing the flying feeling of death and peering down into her sister's lives after crossing over. Ho-hum to that.
August 19, 2009
This is the story of Jennifer Estess, a real person who was diagnosed with ALS, a fatal muscle wasting disease. This book got so many good reviews and people seemed to really like it, so I was somewhat surprised that my own experience wasn't better than it was.
First the good stuff: It is an easy read, but not in a way that makes the reader feel like a moron for reading it. As expected in a medical memoir, the reader gets all the little details one would not normally think about unless one had the disease so you can really understand how insidious ALS is. The writer herself was obviously a strong person with a solid work ethic, working until the final moment she needed to go on disability and then starting a foundation to find a cure for her disease even after that, plus writing this book, working almost to the day she died.
But mostly I was left not feeling as though I really knew the writer by the end, when I had expected to from the reviews. I admire how she was able to write so much while still preserving so much privacy for the people directly involved, especially her sisters with whom she was quite close. One of them helped her write this book, including a chapter on her post-death world written in the first person (which honestly jarred me a little). There are also many famous folks making a name-dropping-only appearance when they appear to help her foundation raise some cash.
Overall, I would say this one is certainly worth a read, but perhaps don't base your expectations of it on what other people have said about it (including me).
First the good stuff: It is an easy read, but not in a way that makes the reader feel like a moron for reading it. As expected in a medical memoir, the reader gets all the little details one would not normally think about unless one had the disease so you can really understand how insidious ALS is. The writer herself was obviously a strong person with a solid work ethic, working until the final moment she needed to go on disability and then starting a foundation to find a cure for her disease even after that, plus writing this book, working almost to the day she died.
But mostly I was left not feeling as though I really knew the writer by the end, when I had expected to from the reviews. I admire how she was able to write so much while still preserving so much privacy for the people directly involved, especially her sisters with whom she was quite close. One of them helped her write this book, including a chapter on her post-death world written in the first person (which honestly jarred me a little). There are also many famous folks making a name-dropping-only appearance when they appear to help her foundation raise some cash.
Overall, I would say this one is certainly worth a read, but perhaps don't base your expectations of it on what other people have said about it (including me).
March 3, 2008
I don't think the subject could be any sadder but this is not a depressing book. I found myself encouraged by the author and the fantastic ways her sisters support her. Wonderful book.
June 9, 2024
I wanted to read this book because it was written by a woman who diagnosed with ALS. She wanted to write her story of her journey and also reflect back on her life. The story includes her two sisters who walk through this disease with her and are her support system.
Having a sister that passed from having ALS and seeing first hand how this disease affected her, and now having my brother diagnosed with it, has moved me to read and research more about ALS. This is one book of many that I have on my book shelf to read.
Having a sister that passed from having ALS and seeing first hand how this disease affected her, and now having my brother diagnosed with it, has moved me to read and research more about ALS. This is one book of many that I have on my book shelf to read.
June 16, 2007
I didn't really know what ALS was and this story really touched me. When I started my job at Carlson I found out one of my co-workers' spouse had ALS and I knew her through the last year of his life. I was so glad I had read this book so I new what she was going through.
August 25, 2007
It has been a couple of years since I read this book but I remember I enjoyed reading it. If any of her friends or family read this review I think she was amazing to first go through what she did and second not waste a day of her life. Thank you for making this book happen.
July 24, 2008
what a GREAT book. And what a sad story. It sure makes you appreciate life a lot more.
September 20, 2007
Loved, loved, loved this book!
I had to go on a waiting list for this book at the bookstore because they were sold out of all of their copies. I originally heard about Tales from the Bed when I saw the documentary "Three Sisters" on HBO. I was so deeply moved by the story of these three sisters (Jennifer, Meredith and Vanessa) as they struggled to get answers and medical treatment for Jennifer, that I wanted more.
Jennifer Estes was struck with ALS, AKA Lou Gehrig's Disease, in the prime of her life. She was living in New York, friends with several celebrities (including Ben Stiller) and having the time of her life. When she first began to develop ALS, her doctors were unable to give her a diagnosis. There were a lot of guesses. Jennifer and her two sisters, and her parents, banded together to get specialists from various medical fields to research what was going with Jennifer and what kind of treatments were available for her. This memoir chronicles Jennifer's fight for a cure, the creation of Project ALS by her and her sisters, and the beginning discoveries medical experts made with stem cell research.
Jennifer spoke in front of Congress on several occassions, along with Michael J. Fox and Christopher Reeve, to gain funding for stem cell research and the hope that stem cells would be able to reverse their illnesses (Parkinson's, ALS, and spinal cord injuries). Jennifer hoped that stem cell research would reach human clinical trials before ALS took her life. The research funding was blocked by President Bush, but that did not deter Jennifer, Meredith and Vanessa from continuing to fight and fund research. Ben Stiller was able to put together several celebrity charity events on behalf of Project ALS to raise money for research.
Jennifer's story is at once heartbreaking and joyous. THrough the convictions of three women, medical professionals from different specialties came together to work for one cause: find a cure for illnesses like ALS, Parkinson's, Alzheimers and spinal cord injuries. These professionals may not have collaborated if it had not been for the love these sisters had for each other. Project ALS has had many more breakthroughs since being formed by the three sisters. Jennifer's story and determination send the message: "Never give up."
After watching "Three Sisters" and reading "Tales From the Bed", I have followed the progress of Project ALS and the efforts of the Estes sisters (Meredith and Vanessa), Nancy Reagan and MIchael J. Fox as they continue to speak in front of Congress on stem cell research. The story of Jennifer Estes broke my heart! This is the kind of book that I would recommend to anyone, it's so beautifully told and very heartbreaking real.
I had to go on a waiting list for this book at the bookstore because they were sold out of all of their copies. I originally heard about Tales from the Bed when I saw the documentary "Three Sisters" on HBO. I was so deeply moved by the story of these three sisters (Jennifer, Meredith and Vanessa) as they struggled to get answers and medical treatment for Jennifer, that I wanted more.
Jennifer Estes was struck with ALS, AKA Lou Gehrig's Disease, in the prime of her life. She was living in New York, friends with several celebrities (including Ben Stiller) and having the time of her life. When she first began to develop ALS, her doctors were unable to give her a diagnosis. There were a lot of guesses. Jennifer and her two sisters, and her parents, banded together to get specialists from various medical fields to research what was going with Jennifer and what kind of treatments were available for her. This memoir chronicles Jennifer's fight for a cure, the creation of Project ALS by her and her sisters, and the beginning discoveries medical experts made with stem cell research.
Jennifer spoke in front of Congress on several occassions, along with Michael J. Fox and Christopher Reeve, to gain funding for stem cell research and the hope that stem cells would be able to reverse their illnesses (Parkinson's, ALS, and spinal cord injuries). Jennifer hoped that stem cell research would reach human clinical trials before ALS took her life. The research funding was blocked by President Bush, but that did not deter Jennifer, Meredith and Vanessa from continuing to fight and fund research. Ben Stiller was able to put together several celebrity charity events on behalf of Project ALS to raise money for research.
Jennifer's story is at once heartbreaking and joyous. THrough the convictions of three women, medical professionals from different specialties came together to work for one cause: find a cure for illnesses like ALS, Parkinson's, Alzheimers and spinal cord injuries. These professionals may not have collaborated if it had not been for the love these sisters had for each other. Project ALS has had many more breakthroughs since being formed by the three sisters. Jennifer's story and determination send the message: "Never give up."
After watching "Three Sisters" and reading "Tales From the Bed", I have followed the progress of Project ALS and the efforts of the Estes sisters (Meredith and Vanessa), Nancy Reagan and MIchael J. Fox as they continue to speak in front of Congress on stem cell research. The story of Jennifer Estes broke my heart! This is the kind of book that I would recommend to anyone, it's so beautifully told and very heartbreaking real.
September 25, 2013
The best thing about being in a decent book club is that others get to know you (and your tastes) in a most subtle way. They can make recommendations to you that you may overlook, have not heard of, or think you'd not like. Such was the case of this book that was recommended to me by our fearless book club leader, Clacie. So first and foremost I have to thank her for the heads up. Clacie knows many things about me that others don't as I tend to be most private about my biggest issues, and difficulties.
My very close friend, Gary, has ALS and is in his final stages. He will not get the six years that Jenifer got as he has chosen not to have a trach, or breathing assistance, or food tube. Gary has battled the disease 3.5 years. We have had long conversations and/or with doctors so I know a lot about this debilitating disease and the path it takes the victim down as well as loved ones. Because of all this, I would never have picked up this book.
Ok, enough about the background noise. Jenifer had so much support and history with her sisters which comes across very well. The history of family antics and childhood provided a space to breathe and laugh. As in life, there is always both tragedy and humor. I laughed, I cried as the women became obsessed with organizing awareness and a foundation to fight not only this disease but it's cousins: Parkinson's, Huntington's,and Alzheimer's.
To me this book was written in the same raw style, less journalistic talent, as Joan Didion. The emotions run the gamut, everyday problems occur for the family while Jenifer is slowly dying. And her thoughts and wishes, and anger, and joy ... it's all there. With everything that still awaits Gary and me (the sadness) this book helped and I think it would do the same for others who are trying to console and love someone as you stand and watch, helpless.
My very close friend, Gary, has ALS and is in his final stages. He will not get the six years that Jenifer got as he has chosen not to have a trach, or breathing assistance, or food tube. Gary has battled the disease 3.5 years. We have had long conversations and/or with doctors so I know a lot about this debilitating disease and the path it takes the victim down as well as loved ones. Because of all this, I would never have picked up this book.
Ok, enough about the background noise. Jenifer had so much support and history with her sisters which comes across very well. The history of family antics and childhood provided a space to breathe and laugh. As in life, there is always both tragedy and humor. I laughed, I cried as the women became obsessed with organizing awareness and a foundation to fight not only this disease but it's cousins: Parkinson's, Huntington's,and Alzheimer's.
To me this book was written in the same raw style, less journalistic talent, as Joan Didion. The emotions run the gamut, everyday problems occur for the family while Jenifer is slowly dying. And her thoughts and wishes, and anger, and joy ... it's all there. With everything that still awaits Gary and me (the sadness) this book helped and I think it would do the same for others who are trying to console and love someone as you stand and watch, helpless.
May 2, 2014
I knew nothing about the author when I picked up this book, but Estess had connections with many famous people in New York City and was apparently a star in the making, at least behind the scenes, when she was stricken with ALS (aka Lou Gehrig's Disease). Although her disease progressed rapidly, with the help of her sisters and her celebrity friends, she was able to found Project ALS, which became a highly successful nonprofit dedicated to funding research for ALS and similar neuromuscular diseases.
Estess narrates the entire book, reflecting on highlights from her pre-illness days among the details of how her life changes all of those dreams and plans. Rather rapidly, the ALS leaves Estess bedridden, hence the title of the book, where she enjoys the company of friends and family, particularly male friends who she could fantasize about being the husband she'll never have, and her sisters children, who she lavishes gifts and love on since she won't get the chance to have children of her own. However, she doesn't focus exclusively on the negatives of her life, instead pouring herself into things she can still achieve, such as Project ALS and making sure to leave a legacy.
This book is rather short, and the foreword by Katie Couric tells how it will eventually end, but much like the book I was reading concurrently with this one, 'Rise Above' (about a man who also had a neuromuscular disease and founded a successful business selling electric wheelchairs and other mobility devices), makes the most of the time she was given to try to better the world of those who find themselves in the same situation as hers. Naturally, I would like it to be longer, but I'm sure Estess would say the same for her life, so it is what it is.
Estess narrates the entire book, reflecting on highlights from her pre-illness days among the details of how her life changes all of those dreams and plans. Rather rapidly, the ALS leaves Estess bedridden, hence the title of the book, where she enjoys the company of friends and family, particularly male friends who she could fantasize about being the husband she'll never have, and her sisters children, who she lavishes gifts and love on since she won't get the chance to have children of her own. However, she doesn't focus exclusively on the negatives of her life, instead pouring herself into things she can still achieve, such as Project ALS and making sure to leave a legacy.
This book is rather short, and the foreword by Katie Couric tells how it will eventually end, but much like the book I was reading concurrently with this one, 'Rise Above' (about a man who also had a neuromuscular disease and founded a successful business selling electric wheelchairs and other mobility devices), makes the most of the time she was given to try to better the world of those who find themselves in the same situation as hers. Naturally, I would like it to be longer, but I'm sure Estess would say the same for her life, so it is what it is.
January 16, 2013
Tales from the bed
Jenifer Estess and Valerie Estess
Nonfiction - Memoir
204 pages
Tales from the bed is a memoir about a woman named Jenifer Estess and has two sisters named Valerie and Meredith Estess. Jenifer is diagnosed with ALS disease. This is a very deadly disease. After testing, doctors told her to prepare to die. But Jenifer did the complete opposite, she lived. She lived for a long time after she was diagnosed from the help of her sisters, they were her everything. The quote "nothing will ever break us apart" said by Valerie inspires Jen to keep fighting. Overtime, ALS gets worse. How will Jenifer deal with it?
I really liked this book, there were a few inspiring quotes that could help anyone at bad times. My favorite character was Valerie. She did everything to keep Jen still living. She was by her side every minute and she came up with a project called ALS project. A way to find a cure. The disease, unfortunately got worse so Jen couldn't walk. She was in bed every minute unless Valerie or Meredith helped. Since she was in bed most of the time that's why the story is titled "Tales from the bed" because all the tales were told on Jenifers bed. The main part what Jen always said was never quit reaching and keep reaching because if you reach, you will always get somewhere higher. But unfortunately the disease got to bad and Jenifer passed in her sleep on December 16, 2003. Valerie and Meredith were crushed. They cried and cried. But luckily, Valerie was there to end the book for Jen. Valerie states that even though Jens not on the planet she's still with them and nothing will ever break them apart.
Jenifer Estess and Valerie Estess
Nonfiction - Memoir
204 pages
Tales from the bed is a memoir about a woman named Jenifer Estess and has two sisters named Valerie and Meredith Estess. Jenifer is diagnosed with ALS disease. This is a very deadly disease. After testing, doctors told her to prepare to die. But Jenifer did the complete opposite, she lived. She lived for a long time after she was diagnosed from the help of her sisters, they were her everything. The quote "nothing will ever break us apart" said by Valerie inspires Jen to keep fighting. Overtime, ALS gets worse. How will Jenifer deal with it?
I really liked this book, there were a few inspiring quotes that could help anyone at bad times. My favorite character was Valerie. She did everything to keep Jen still living. She was by her side every minute and she came up with a project called ALS project. A way to find a cure. The disease, unfortunately got worse so Jen couldn't walk. She was in bed every minute unless Valerie or Meredith helped. Since she was in bed most of the time that's why the story is titled "Tales from the bed" because all the tales were told on Jenifers bed. The main part what Jen always said was never quit reaching and keep reaching because if you reach, you will always get somewhere higher. But unfortunately the disease got to bad and Jenifer passed in her sleep on December 16, 2003. Valerie and Meredith were crushed. They cried and cried. But luckily, Valerie was there to end the book for Jen. Valerie states that even though Jens not on the planet she's still with them and nothing will ever break them apart.
January 12, 2008
What a wonderful and amazing, yet incredibly sad and tragic book. Before even reading it, I knew how the end would go...anyone who knows about ALS knows what the end result is..yet as I kept reading I would think "No, there has GOT to be way she gets out of the this." I also found myself almost not wanting to get to the end of the book because I knew that then the story would be over. I wanted it to keep going.
The courage Jenifer Estess exhibited throughout the course of the book was amazing. I wish I could say I would have the same courage if I was faced with the same situation...in fact,I wish I could have just half the courage she showed. She also had a killer sense of humor that made me laugh out loud many times.
While Jenifer was definitely the main focus of the book, several other supporting people played an important role. Her sisters were always there for her, and the bond they had was unbreakable. I find their continued work with Project ALS to be incredibly inspiring.
I'd like to close with a quote from Ben Stiller that describes the book better than I ever could:
"Jenifer Estess writes with such humor and honesty that you feel as if you know her. Her story is one that we all look at and think, What would I do in her situation? To read this story is not only to be inspired, it literally makes you see the world around you differently."
I really really really recommend this book to anyone. While it is sad (its the first book that made me cry in a long time), it is also very inspiring and beautiful.
The courage Jenifer Estess exhibited throughout the course of the book was amazing. I wish I could say I would have the same courage if I was faced with the same situation...in fact,I wish I could have just half the courage she showed. She also had a killer sense of humor that made me laugh out loud many times.
While Jenifer was definitely the main focus of the book, several other supporting people played an important role. Her sisters were always there for her, and the bond they had was unbreakable. I find their continued work with Project ALS to be incredibly inspiring.
I'd like to close with a quote from Ben Stiller that describes the book better than I ever could:
"Jenifer Estess writes with such humor and honesty that you feel as if you know her. Her story is one that we all look at and think, What would I do in her situation? To read this story is not only to be inspired, it literally makes you see the world around you differently."
I really really really recommend this book to anyone. While it is sad (its the first book that made me cry in a long time), it is also very inspiring and beautiful.
September 4, 2009
I fell in love with Jennifer Estess and her sisters. The Estess’s sisters have a beautiful bond; always there for each other; they are an unstoppable force. Jennifer is doing what we are all doing; working, being busy, working-out, reaching for the dream, meeting up with friends and then her leg muscles begins to twitch. Jennifer, perfectly healthy was suddenly diagnosed with ALS. I did know that much about this disease prior to reading this book. The book is upbeat, a tribute to Jennifer’s life and what she accomplished while her body continued to fail her. The sisters are ever present and much is accomplished as they rally war against this disease. Jennifer and her sisters start a nonprofit business for the awareness of ALS; it is called, Project ALS. Jennifer had a previous job at Naked Angles and used that experience for her business model. What became clear is that science researchers rarely collaborated; a shocking reality. The sister’s, got the scientists to begin talking to each other. Jennifer and her sister’s accomplishments are phenomenal and Jennifer’s wit is stellar. I am humbled by Jennifer; for those who have commented on the name dropping, I request that you rethink your judging. Jennifer worked among theater people; to not speak of them would be like not mentioning the scientists or anyone else that touched Jennifer’s life. Jennifer’s voice gives the reader a huge gift, a message about life.
November 4, 2007
I read this books in two days. I saw a movie about Jenifer Estess in London the summer after Mom’s diagnosis. Doug had watched it before and thought I would like it. I was always a little interested in ALS since watching ‘Pride of the Yankees’ as a child. Now, my ears perked up every time I head something mentioned about the subject.
The book gave more insight into Jenifer’s personality and her relationship to two of her sisters. She had a wry sense of humor and was a magnet to everyone she met. It was so bittersweet to read about her struggle and how she gave up things on a weekly basis. Her descriptions of the bi-pap and feeding tubes were all too fresh in my memory of Mom’s fight.
Mom always said she didn’t want to lose her mind, that Alzheimer’s was a terrible thing, but I think having a bright mind that knows everything the body is doing to betray it is pretty awful too.
One review on the cover of this book said you could laugh and cry at the same time. That was definitely true; and I cried at the end when she died like she was someone I had actually met and visited with.
The book gave more insight into Jenifer’s personality and her relationship to two of her sisters. She had a wry sense of humor and was a magnet to everyone she met. It was so bittersweet to read about her struggle and how she gave up things on a weekly basis. Her descriptions of the bi-pap and feeding tubes were all too fresh in my memory of Mom’s fight.
Mom always said she didn’t want to lose her mind, that Alzheimer’s was a terrible thing, but I think having a bright mind that knows everything the body is doing to betray it is pretty awful too.
One review on the cover of this book said you could laugh and cry at the same time. That was definitely true; and I cried at the end when she died like she was someone I had actually met and visited with.
December 20, 2008
While living in San Antonio I became "friends" with a woman who was in the latter stages of ALS. I would go by weekly and visit- standing at her bedside chattering about anything that came to mind- carrying on this monologue until I ran out of things to say and then I would leave. I cannot imagine now how inane all that conversation must have seemed to her- as she lay there trapped in a body that had betrayed her. Jenifer Estes also had ALS. Instead of laying down to die, she and her sisters were able to pool resources to begin Project ALS. The idea behind it being that all the various scientists and doctors working to find a cure for this and other diseases such as Parkinsons and MS should share information and work together- duh! While the book ends as expected, she dies, it carries a message of the love of sisters- a commitment to family and friends and hope.
May 3, 2011
This book is heartbreaking! It is a memoir written by Jenifer Estess, who died of ALS (Lou Gehrig's disease)in 2003. She starts the book as a healthy 35 year old, active woman. As soon as she finds out she has the disease, she begins to deteriorate over the next 6 years. From shakes in her legs to being bedridden by the end, she is supported by her 2 sisters through a bond that only sisters share. Her story, though depressing, is uplifting in its own. She stresses the importance of her sisters, her friends, and it is because she had ALS that she started an organization, Project A.L.S. to recruit the world’s best research scientists and clinicians to work together toward an understanding of, and the first effective treatments for ALS.
October 14, 2007
My boyfriend's mother has PLS and a dear friend is dying with ALS. This memoir of Jennifer Estess teaches about the disease and the beginning of Project ALS. At times the story was personal, at other times it was the chronicle of Project ALS.
I dont't generally like to interrupted while reading, however I kept this book in my car to read while I was waiting for various things. It went well in small doses and I was rarely frustrated when my reading was interrupted because my waiting was complete.
I dont't generally like to interrupted while reading, however I kept this book in my car to read while I was waiting for various things. It went well in small doses and I was rarely frustrated when my reading was interrupted because my waiting was complete.
March 6, 2008
A woman in her 30's discovers that she has ALS (Lou Gerigs' disease.) This memoir is the story of the progression of the disease but also her close bond with her sisters and how together they figure out how to fight the disease on a much bigger scale than just within their family. While it is a serious topic it isn't the bummer you might think. It is hopeful and interesting as she faces this disease that bit-by-bit takes away her ability to do everything. I bought it at the airport on the way to San Francisco and had it finished by the next morning before I got on the cable car!
October 11, 2011
I feel like I will be judged by saying that this book was really boring. I don't really understand what in her life was so exceptional that it was turned into a book. Maybe it's because I'm a science person and can't see how she's any different from any other person with a terminal illness. I'm not a cold person. It is sad that she passed away but the book was pretty dull.
April 29, 2007
This was a tear-jerker! This is an amazing story of how three sisters fought together to find an impossible cure for a debilitating illness. It is a story that teaches the important lessons life through a heart-wrenching tale. Keep a box of kleenex close!
January 12, 2008
Jenifer Estess shows us that even in the most difficult times of your life you can live and love to the fullest. We forget that our lives can change in an instant and we should live like there is no tomorrow.
June 25, 2008
I did CNA work for 7 years and took care of patients with ALS (Lou Gherigs disease), so for me this was a beautiful way for her to record the last years of her life and how she loved every minute of it before she died.
May 29, 2010
This was a really good book!
February 22, 2020
This was not my usual type of book, but I'm glad I took a chance on something different (sometimes I feel like reading so many thrillers and watching murder documentaries is *maybe* not the healthiest choice). This is a memoir about a woman with ALS and how after diagnosis, she and 2 of her sisters created Project A.L.S. The work they did and continue to do is truly inspiring! Having worked for Muscular Dystrophy Association for a number of years- I am all too familiar with this horrible and ugly disease. It is 100% fatal. I expected this book to be terribly sad and yet it was more about being inspired to start this organization and changing the way research for ALS is funded. Really interesting! Don't get me wrong- I bawled my eyes out over the last 10 pages 😭😭😭
A few things that I did not particularly love about this book...
* It jumped around in timeline constantly so it was difficult to follow the progression of the disease. It would sometimes even be mid-paragraph and then flashback to when she was a kid and then stay on that subject for a few sentences/paragraphs and then jump back to the original thought. It felt choppy.
* She name drops constantly. I think it was her way of thanking and letting people know how much they meant to her but it read more like a diary. It didn't feel like bragging that she had celebrity connections, but it still felt weird. Some of the stories she tells from her past and boyfriends she had- there was no real point or purpose of telling it other than to document it in the story. (If that makes sense) Or if they donated a large enough amount to Project A.L.S. that she would add their name to her book.
* What was the deal with Jenifer and her mom? She went into such detail about some aspects but then any talk about her mom ended after she was diagnosed. What happened??
* What happened to her brother?? Did he live with her dad? That was weird & unfinished. Also her other sister Alison. Was she jealous of the close relationship of the other 3 sisters? Why was she left out?? No explanation.
* I wish the book went into more detail about the progression of the disease and how it felt to lose control of muscles one at a time. I wanted more insight into how she made medical decisions.
* What was Reed's deal? Were we supposed to like him or hate him in the end?
* I think I would have been much more hopeful and inspired if I read this book when it was released in 2004 as opposed to now in 2020. Knowing that there have not really been huge strides to cure ALS made me just feel really sad and defeated at the end. There have been developments over time and learning more about the brain, stem cells, and gene therapy, but the prognosis for those diagnosed with ALS is still 100% fatal.
A few things that I did not particularly love about this book...
* It jumped around in timeline constantly so it was difficult to follow the progression of the disease. It would sometimes even be mid-paragraph and then flashback to when she was a kid and then stay on that subject for a few sentences/paragraphs and then jump back to the original thought. It felt choppy.
* She name drops constantly. I think it was her way of thanking and letting people know how much they meant to her but it read more like a diary. It didn't feel like bragging that she had celebrity connections, but it still felt weird. Some of the stories she tells from her past and boyfriends she had- there was no real point or purpose of telling it other than to document it in the story. (If that makes sense) Or if they donated a large enough amount to Project A.L.S. that she would add their name to her book.
* What was the deal with Jenifer and her mom? She went into such detail about some aspects but then any talk about her mom ended after she was diagnosed. What happened??
* What happened to her brother?? Did he live with her dad? That was weird & unfinished. Also her other sister Alison. Was she jealous of the close relationship of the other 3 sisters? Why was she left out?? No explanation.
* I wish the book went into more detail about the progression of the disease and how it felt to lose control of muscles one at a time. I wanted more insight into how she made medical decisions.
* What was Reed's deal? Were we supposed to like him or hate him in the end?
* I think I would have been much more hopeful and inspired if I read this book when it was released in 2004 as opposed to now in 2020. Knowing that there have not really been huge strides to cure ALS made me just feel really sad and defeated at the end. There have been developments over time and learning more about the brain, stem cells, and gene therapy, but the prognosis for those diagnosed with ALS is still 100% fatal.
March 29, 2021
I was less than impressed with this memoir.
While it was easy to read and a heartbreaking story from the perspective that a life was taken far too soon, I did not find I could relate to her at all. It felt like the true suffering she must have felt (ALS is a terrible disease) was glossed over and instead the memoir focused mostly on which celebrities she was spending time with and where she was being flown. I recognize that she became a bit of a celebrity with her foundation but as a reader I had the impression she was already in a position of wealth and influence as these seemed to be key pieces she highlighted in her story (she knew most of these celebrities before she got sick, she lived in a mansion, she had a nanny, etc).
The last chapter came across as really cheesy too - I would have much preferred to just end with her death (instead of a chapter post-death in the first person) or a chapter where family weighed in. It made me question how much of the memoir was truly written by her, vs her sister (as they clearly wrote the entire last chapter).
Overall It really lacked substance for a a medical memoir. I can’t imagine the suffering she went through but it really didn’t come across in this one.
While it was easy to read and a heartbreaking story from the perspective that a life was taken far too soon, I did not find I could relate to her at all. It felt like the true suffering she must have felt (ALS is a terrible disease) was glossed over and instead the memoir focused mostly on which celebrities she was spending time with and where she was being flown. I recognize that she became a bit of a celebrity with her foundation but as a reader I had the impression she was already in a position of wealth and influence as these seemed to be key pieces she highlighted in her story (she knew most of these celebrities before she got sick, she lived in a mansion, she had a nanny, etc).
The last chapter came across as really cheesy too - I would have much preferred to just end with her death (instead of a chapter post-death in the first person) or a chapter where family weighed in. It made me question how much of the memoir was truly written by her, vs her sister (as they clearly wrote the entire last chapter).
Overall It really lacked substance for a a medical memoir. I can’t imagine the suffering she went through but it really didn’t come across in this one.
March 12, 2024
ALS is a cruel disease. My mum is 83 and had great difficulty speaking and swallowing much of anything. Food was getting trapped in her throat and blocking her air way was happening more often. she battled for each breath. The riluzole did very little to help her. The medical team did even less. Her decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of our primary physician, there she would have died. There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased her anxiety a bit. this year our primary physician started her on Natural Herbs Centre ALS/MND Ayurvedic treatment, 6 months into treatment she improved dramatically. It has been a complete turnaround with her speech, she no longer needs the feeding tube to feed, the treatment is a miracle. She recovered significantly! Visit Natural herbs centre. com
July 29, 2024
Last year, my 68-year-old partner was diagnosed with Lou Gehrig's disease also known as ALS. Speaking and swallowing were two of his challenges. His collapse was swift and catastrophic, and neither the riluzole nor the medical staff did much to aid him. He would not have survived if our primary care physician hadn't given him attentive care and attention, as the hospital center didn't provide any psychological support. His fall was abrupt and catastrophic. His hands and legs gave way to weakness in his arms. This year our family physician suggested using vine health centre com ALS/MND treatment, which my husband has been receiving for a few months now. I'm delighted to say that the treatment greatly reduced and reversed his symptoms of ALS, he no longer requires a feeding tube, sleeps soundly, works out frequently, and is now very active. In the hopes that it could be useful, I thought I would relate my husband's tale; in the end, you have to do what suits you the best.
September 7, 2018
Reading this book helped me understand better what a awful disease ALS is and how it affects the whole family. I didn't find the book funny, witty or terribly sad. It was a loose account of her battle with ALS and the founding of Project ALS.
Timelines were off, it jumped around, tales were not completed and you were left hanging, and the over use of celebrity names and designers was about to drive me crazy. She came across as a very narcissistic kind of person, from wanting to look great and be in the in crowd every night to the part where she should have been thin with this disease and she got fat.
Her love of family is undeniable. Interesting book but just not as well done as I had hoped.
Timelines were off, it jumped around, tales were not completed and you were left hanging, and the over use of celebrity names and designers was about to drive me crazy. She came across as a very narcissistic kind of person, from wanting to look great and be in the in crowd every night to the part where she should have been thin with this disease and she got fat.
Her love of family is undeniable. Interesting book but just not as well done as I had hoped.
July 28, 2021
Looking back from the vantage point of fourteen years I don't recall why I read this book. Did I run into it at the library and just pick it up on a whim? Did someone recommend it? I don't recall. Herein lies the importance of keeping better notes here on Goodreads or whereever one keeps track of their reading choices.
Jennifer died of ALS a disease which recently took the life of a cousin. The book was heartbreaking because one knows that it won't work out well. The book is finished by a sister after Jennifer's death. Oddly the whole book is written in first person including the chapter about her death. That was strange.
(Catching up on reviews for books read before blogging/Goodreads days, made from notes made at the time the book was read. Written on 7/27/21.)
Jennifer died of ALS a disease which recently took the life of a cousin. The book was heartbreaking because one knows that it won't work out well. The book is finished by a sister after Jennifer's death. Oddly the whole book is written in first person including the chapter about her death. That was strange.
(Catching up on reviews for books read before blogging/Goodreads days, made from notes made at the time the book was read. Written on 7/27/21.)
September 25, 2021
ALS is a horrifying disease and one I have long been terrified of. I can not imagine the horror of having your body shut down while your mind is as alert and healthy as ever. Jenifer Estess’ 2005 book, as told to her sister, describes the slow but relentless progression of the disease as she mourns all that she has lost and what she will never have. It also spends a good deal of time talking about the establishment of her foundation, Project A.L.S., to raise funds for research and hopefully a cure. Well, here we are MANY years later and an average of 15 people a day are newly diagnosed with ALS — more than 5,600 people per year. As many as 30,000 Americans may currently be affected by ALS. Annually, ALS is responsible for two deaths per 100,000 people. So very sad.
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