A poignant, powerful and moving story. This author is brave, writing about difficult debilitating illnesses, in this case, ALS. She does so with such expertise, compassion and knowledge. I did read “Still Alice’ by her and was mesmerized. A stunning piece of work as is this.

Another hit for Lisa Genova! I have never read a book about ALS but I briefly knew two people who had this disease. Every Note Played was brilliantly written and serves as a teaching tool about the disease and its progression. Lisa explicitly shares the emotional journey, as the diseases progresses, of Richard (ALS) and of Karina (caregiver) and what an emotional toll this diseases imposes on both parties. I truly felt their pain and conflict so deeply. After reading this story my heart went out to all people affected by this horrific disease. Lisa Genova continues to stay on my list of top 10 authors!!

Lisa Genova has a formula so I knew what I was getting into. A fast read, well-written and well-researched tome into whatever condition the story is about [here, ALS, previoulsy Alzheimer's], often depressing, but also informative.

Acclaimed classical concert pianist Richard ignores the symptoms, then confronts, his diagnosis of ALS. He is divorced from his Polish-born wife, who prefers jazz piano to classical music [and gave up her carreer to move from NYC to Boston with him] and estranged/distant from their daughter, Grace, now in college.

The novel describes the progressive, degenerating effects of ALS on both the inflicted person and those around him. How daily life changes. In great detail. An extremely powerful medical drama but also with some love and light [minor]. Absolutely draining, it packs a wallop as it delves into loss, self-pity, pity, forgiveness, and yes, living.

The descriptions of everything from changes and deteriorations in the conditions, to emotions and the various relationships--husband/wife/daughter/friends/caregivers/mother, father and brothers are all beautifully scripted.

Some of the descriptions that resonated:
Richard sees "... his entire motor neuron system in a death spiral."
"Silence has always been the cloak she wears to conceal her anger or fear."
"...rages into the den."
"...watches his brothers eat, massive bites of bread, ham, and cheese churning around in their open mouths like clothes in a circular dryer window..."

One of his home health aide's, Bill, is a godsend. Whenever he entered the story, I smiled. His compassion and patience were boundless. Bill, a former travel agent, took care of his lover, who died from AIDS. Now he is a caregiver par excellence. I LOVED HIM.

Yes, I absolutely guessed one of the trajectories but it didn't ruin anything for me. And of course, one has to know the ultimate end of story. But it was beautifully done. If you can manage the emotional churning, read it.

"This disease is as politically correct as they get. It has no bigotries, allergies or fetishes. ALS is an equal opportunity killer." In Every Note Played, we read about Richard's battle against ALS. I was pulled in very quickly as I read more about this horrifying disease. Lisa Genova gives just enough scientific detail for the average person to understand how ALS works and it's debilitating, terminal effects on the human body. I have read all of Lisa Genova's books and loved each one. Every Note Played is not action packed but it is most definitely a page turner!

Every Note Played
By Lisa Genova
Gallery, Threshold Pocket Books
Publishing date: 3/20/2018
Net Galley ARC read: 3/6/2018 – Review posted on Net Galley 3/7/2018

As in all her books, Lisa Genova delivers a powerful portrayal of a family dealing with a deadly neurological disease. In Richard Evan’s case, it is ALS, amyotrophic lateral sclerosis better known as Lou Gehrig’s disease. It progressively paralyzes its victim’s muscles and nerves until death ensues.

Richard is a famed classical pianist who has traversed the globe several times wowing audiences in his concerts and being unfaithful to his wife Karina. When the reader meets them, they have been divorced for three years and are both in their mid-40s struggling with life changes. Their only child Grace is in her first year of college in Chicago, Karina is giving piano lessons at their family home in Boston and Richard is cowering in his Boston condo, cancelling concerts due to a paralyzed right arm. There has been little communication between Richard and Karina over these three years and Grace distanced herself from both parents, first emotionally then geographically. These three people are seething with unspoken rage towards each other.

Karina invites Richard to move back into their home after his money and functional ability greatly decline, taxed by the cost of home health care in his expansive fourth floor condo. The first-floor den is made into his bedroom with his gear which includes a hospital bed, power wheelchair, leg braces, and BiPAP (breathing) equipment. Even at this point, months after Richard’s ALS diagnosis, neither parent has informed Grace of her father’s condition. This tendency to not deal with things also affects Richard’s disease progression. He is encouraged by a specialist to do his “voice banking,” i.e. recording his voice before it deteriorates further not only to clearly communicate with those around him but so that he can remember what his voice sounded like before it was ravaged by his disease. Instead, he opts to use alphabet letters to communicate and will do the voice banking “later.” Neither Richard nor Karina grasped how quickly his body would go downhill.

As she does in all her novels, Ms. Genova weaves the reality of neurological disease into the backdrop of the emotional lives of her characters. The more deteriorated Richard’s body becomes, the more he comes to grips with his own emotional turmoil. He dares to make himself a little vulnerable which in turn generates a similar response from his wife and daughter. The reader comes to recognize that Karina betrayed Richard as grievously he did her, though not with lovers. It is mesmerizing to see each of these two characters recognize and take responsibility for their part in the destruction of their marriage and then try to reconcile with each other, all while Richard’s demise is edging closer each day.
I gave this book 4 stars. I enjoyed the musical references very much and even had several of them playing in the background on YouTube while I read the book (which I finished in one sitting). I cried when Richard died and again in the epilogue when Karina discovered what Richard left for her. I Googled ALS research to see what is currently happening in that field. I thank Lisa Genova and the people who assisted her in writing this book. Her books do a service to humanity in that they raise awareness of these ravaging neurological diseases that cut adults down in their prime in addition to telling a good story.

Every Note Played
Lisa Genova

MY RATING ⭐️⭐️⭐️⭐️⭐️
PUBLISHER Gallery/Scout Press
PUBLISHED March 20, 2018

An emotional profound chronicle of the terrifying effects of ALS disease and the opportunity for redemption it brought to one family.

SUMMARY
Richard Evans loves the attention and applause when he plays. He’s an accomplished classical concert pianist and has played in the most famous concert halls all over the world. His fingers are finely calibrated instruments that dance across keys, making music come alive. But now Richard has ALS and his right arm is paralyzed, his left is not far behind. Karina, his forty-five year-old ex-wife is also paralyzed, paralyzed by excuses and fear, and stuck in an unfulfilling life as a piano teacher, having given up her dreams of a jazz pianist long ago. She’s despises Richard and blames him for their failed marriage and her lost career. As Richard’s ALS progresses and he is no longer able to live on his on, Karina becomes his reluctant caretaker.

“He counts five other people close enough to hear him if he yells, but they might as will be in Timbuktu because he’ll never asked any of these strangers for help. And he’ll never ask his father or brothers in New Hampshire or his daughter in Chicago. And he can’t ask Trevor in New York or his medical team at Mass General or even Bill, who is somewhere with his next client. He is alone in the Public Garden. He’s alone in his home, He’s alone in his ALS. And he’s suddenly, overwhelmingly terrified.”


REVIEW
Every Note Played is about much more than ALS. It is about taking something as horrific as ALS, and using it to make amends, to set things straight and to apologize for all the hurt Richard and Karina have caused each other, before it’s to late. Basically it’s about forgiveness. The feelings and emotions brought out in the story were striking and the character development was superb. Lisa Genova’s writing is amazingly lyrical, much like the beautiful Schumann’s Fantasie in C Major that Richard played at Carnegie Hall. Genova derived her vivid descriptions of Richard’s symptoms and her understanding of the disease and its progression directly from several very dear friends with ALS. Similar to her 2009 book Still Alice, and her mother’s Alzheimer’s disease, for her, it’s personal. That is precisely what makes Every Note Played one of the best books of 2018.

Thanks to Netgalley, Gallery/Scout Press and Lisa Genova for an advanced reading copy of this book in exchange for a honest review.

“Every note played is a life and a death. “

I've just finished reading this gut-wrenching, beautifully written novel about a devastating subject...ALS (Lou Gehrig's Disease).

Lisa Genova, the author of Still Alice, gives us another tale of the horror of a failing body but the beauty of a peaceful mind.

From the publisher's blurb: "comes a powerful exploration of regret, forgiveness, freedom, and what it means to be alive.

An accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago.

Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce—his divorce.

He knows his left arm will go next."

And of course, it does.The rest of his body and organs soon follow.

Based upon the subject matter and the blurb, as well as the fact that this disease along with Alzheimer's, is one that all of us dread the thought of having, I thought this would be an exceedingly hard book to read. Because of the beauty of the author's words it wasn't. Passages about music, life, love, and illness mingle effortlessly. Still, it is a hard hit in the stomach as we face life with Richard after his diagnosis.

There are so many practical messages from Richard's doctors and other caregives, that I feel the need to keep this title handy should anyone I know ever need them. Thank you, Lisa, for once again sharing your knowledge of a difficult subject.

Don't be frightened off by the subject matter, this is an important book and Lisa is the author to write it. She has a degree in biopsychology and a PHD in Neuroscience. She speaks around the world about these subjects.

Any reader or movie goer by now has at least heard of “Still Alice”, about Alzheimer’s and dementia by Lisa Genova, which was first published in in 2009.
I read that book back in 2009...before the entire world had started raving about it — which they should rightfully so - for being one of the best books they had ever read about the disease —hearing specifically from the person who ‘has’ the disease. I have bought the book myself many times and given it as a gift.
I’ve never thought of Alzheimer’s the same again since first having read Lisa’s book. “Sill Alice” literally change to me.

I’ve since read all of Lisa’s books. In each one I’ve learned about a disease from a PERSON WHO HAS IT .....and/or such as the people ( family), whom the disease also most effects in a very real/personal - raw way —while also being accurately educated on the grueling gut wrenching factual details of the disease itself — the developmental stages - the care involved - not leaving out any of the painstaking realities. Every book has been worthy of my time to read.
Lisa’s comprehensive research- being a brilliant Harvard/linguistics teacher and researcher....along with being a wife and mother brings so much compassion and sincerity to her books, that I can barely pull myself away.

I had recently read a couple books on ALS. One was an excellent graphic memoir , about how one wife coped with her children when her husband was diagnosed with ALS, called “Last Things”, by Marissa Moss...which was very moving and powerful..... so, although I wanted to read Lisa’s book, before I began, I had mixed feelings because I already knew this was a horrifically sad disease. I thought I pretty much knew everything.
WHO WAS I KIDDING? Geeeee. What I knew only skimmed the surface.
Lisa COMPLETELY CHANGED how I see *ALS* - my relationship to it if you will - not sure how to express it — my association with ALS has completely been shifted- elevated - and turned upside down and around! ( and I knew about this disease) —-I actually didn’t know about Alzheimer’s in 2009, when I read Still Alice.
Today I do know more. Lisa opened the door to Alzheimer’s awareness ...with more research being done maybe even because of her.

I’m suggesting that ANYONE who reads this book will walk away with MORE INFORMATION ABOUT ALS than any other mainstream book. ( unless this is your field of study or you have the disease yourself or are living with someone who does). I’m shocked and humbled by just how much I really didn’t get — not the nitty-gritty details which Lisa gives us. Lisa actually trusts us - the reader to hear the truth leaving nothing out. And its not pretty. Wasn’t for me.

I thought this book was brilliant, and possibly Lisa’s best book to date. It was GUT WRENCHING— I MEAN GUT WRENCHING for me to read some of the chapters —-
GRUELING- PAINFUL - I WAS IN TEARS:
....reading about feeding tubes, choking, shitting, pissing,breathing, swallowing, all the equipment, the details about the ASL clinic, the neurologist, pulmonologist, radiologist, speech-language, pathologist, gastroenterologist, barium mixed in applesauce, x-rays, special wheelchair, the BiPAP cart, the HeadMouse, liquid shakes, worry not to lodge the windpipe, aspiration pneumonia, food syringes....all of it could make me cringe.
Honestly- I just wanted THE SUFFERING to end - I WISHED FOR A MERCY KILLING.
I HATE HEARING ABOUT THIS DISEASE- THE FRICKEN WORSE!
I’m sooooo sorry for those who have it - and God Bless the caretakers.

BUT WAIT.......THERE IS ALSO STORY IN HERE TOO... about love, family, regrets, forgiveness and music.
I’m a weeping mess.....THIS IS LISA’S BEST!

.....You’ll meet Richard Evans- concert pianist.
......You’ll meet Karina - who not only was once an excellent pianist herself who now teaches piano out of her home - but that woman can cook Polish food like nobody’s business. She’s the ex-wife to Richard. They had one hell of a nasty divorce.
.......Grace- is their daughter in college.
.......Elise — ( always fun to read about a character with my own name) is Karina’s friend.
.......Bill — Richard’s loving - fun - gay caretaker

My heart is enraptured ........I have a much deeper understanding for what it feels like to live with ALS.

Lisa invited readers to take a moment to make a donation to ALS.....@
www.LisaGenova.com. “Readers in Action: ALS”. - button to donation.
ALS ONE, is an organization determined to deliver treatment or cure for ALS by 2020 and dedicated to offering improve care now.
For more information on ALS ONE, go to www.ALSONE.org

Thank You Gallery/Scout Press, Netgalley, and the inspiring dedicated Lisa Genova

I work in the healthcare field, so it is always fascinating for me to read patient-perspective pieces, especially in fiction. The onset of ALS is so debilitating, and this story outlines the struggles with it so eloquently. Richard and Karina face many of the same issues that families face everyday with chronic disease, and Lisa guides them through the process perfectly. Great read!

4 sad sad stars

Perhaps you have heard of Amyotrophic lateral sclerosis, Lou Gehrig's disease commonly referred to as ALS. To receive a diagnosis of this disease is a death sentence coming in the form of the destruction of your neurons that control all your voluntary muscles. These nerve cells affected are located in you spinal cord and your brain ultimately leaving one trapped in a body that doesn't work, doesn't move, doesn't function, while your mind stays fully functioning. The cause for most patients is unknown while in a very few, it can be traced to a genetic link.

For Richard, a renowned concert pianist, this is the diagnosis he has received. He will experience the loss of the use of his hands, then his arms, and as this disease progresses he will be person locked within a body that will no longer work. He will no longer be that concert pianist receiving those standing ovations, being acclaimed, being loved by many. Who will care for him? Who will travel this road with him? Who will be able to make that journey and be strong for him?

Richard was formerly married to another pianist, Karina. They had a daughter, now in college, but now they are divorced and Karina has many painful memories of what her life with Richard had entailed, the unfaithfulness, the absences while Richard jetted around the world giving concerts, the giving up of her career to be mother to their daughter. However, once she learns of Richard's illness she makes a decision that will change her life, bringing her a level of acceptance and ultimately finding the peace that comes with forgiveness.

Ms Genova gives us an intimate look into ALS. She shows us its devastation, the way in which it robs one of life and perhaps of hope as well, since right now, there is no cure. She writes of the care givers, generous loving people who provide for ALS patients and the support system the family so desperately need. She takes us into the mind, heart, and soul of not only the one affected but also the toil it takes on family. It was not an easy book to read. There is no happy ending for ALS patients, but perhaps there is hope for the families they leave behind when they know that all has been done to provide the best quality of life for their loved ones through the various organizations that provide care for these patients. Perhaps you know someone with ALS. Perhaps you have heard of their trials and illness. Perhaps the goal, fostered by the ice bucket challenge to cure ALS will be achieved by 2020. I have known of three people with ALS. All of them were wonderful people, loved by family and friends, productive, accomplished, and sorely missed by the family and friends they left behind. I hope and pray that soon this disease will become a memory, that it will no longer terrorize and destroy lives that are so worth living.

Thank you to Lisa Genova, Gallery Scout Press, and NetGalley for providing this reader with an advanced copy of this most moving and heartbreaking book.

Every once in a while you're lucky enough to come across a book that lodges itself in your heart and doesn't let go. For me it's this book. I don't give away spoilers but I will tell you that this book is emotional, lyrical and heart breaking. I am not a crier and this book definitely had me sniffling. This book is so far my favorite by Lisa Genova and this is a must pre order because if you miss this book you will miss out on one spectacular and well told story. It will stay with you long after you have finished the last page. Happy reading!

This was good, and it gave me a lot of insight into ALS, but it certainly didn’t capture me like “Still Alice” did. Perhaps it is because neither main character, a famous classical pianist diagnosed with ALS and his ex-wife, were very likeable. I am glad I read it, but mainly because I now know more about the disease. The characters are very forgettable.

Wow! what a book. Following Richard's battle with ALS was heartbreaking. The fact that his ex-wife took him into her home to care for him speak volumes about a woman who gave up her life for her husband's career. The progression of the disease was certainly eye-opening. Combining Richard's music with the disease was unique, especially when one can almost hear the music. From beginning to end the characters grew and changed and were lucky enough to have time to forgive each other.

Genova takes readers on another journey of a character struggling with an incurable, irreversal disease. While early onset Alzheimer's was relatively tidy, ALS is gross and messy. Genova spared no detail from diagnosis to the inevitable demise. A painful truth of how one's past "comes home to roost," will get all readers to consider past choices, decisions, and make plans for making amends. Thoughtful, emotional, and informative.

I enjoyed reading Lisa Genova’s “Still Alice” and had high hopes for this book and I was not disappointed. I especially enjoy reading her books as her point of view sometimes is different being a neuroscientist. This is a story of the effects a degenerative neurological illness has on everyone and everything, more specifically ALS. Beautifully written and honest but you will may need tissues nearby.

I recieved a copy of this title from the publisher and NetGalley for my honest review.

This was an emotional book written unemotionally. It was excellent. Heartbreaking, frustrating but ever so true. I love the way the author writes and her knowledge is first hand. Just a beautiful story. Live your life because we only have one!

I love how much can be learned by reading the books of Lisa Genova. In this case, while fascinated by the disease, I found I had to scan through much of the second half of the book, partly because I wasn’t interested in the musical aspect of the story and partly because I was getting tired of the repeated interactions. All this said, I cried my way through the ending and into the author’s notes. . What a horrifying disease and a terrible, fearsome way to live. I sincerely hope that the recently approved medication that Lisa Genova talked about will prove to be a magic bullet.

Every Note Played is somber, but never morbid despite the omnipresence of an unwelcome mien. Richard, a fragile artist, and a selfish prick. Karina on the first meet is dejected and miserable. Their divorce is typical of a couple who had so much in common but couldn't find some common ground. One of their joint successes is their daughter, but her departure for college leaves Karina and Richard with no reason to interact. Until ALS. Obligation, resentment, and regret dot their new normal. Their reconfigured relationship may seem like an odd place to find, kindness, redemption, and if not love, then empathy, but if you're not getting a little misty by this time you may want to check your faculties.
Every Note Played educates more than any ice bucket and moves you in a way that is sad, but also sanguine. Let the characters acknowledgements, revelations, and amends motivate you to act. The power of confession is incredibly freeing no matter the destination.

Lisa Genova gives the reader a front row seat on the progression, treatment, and heartbreak of ALS.

Whenever Lisa Genova releases a new novel, it is automatically my must read book of the season before I've even read the first line. Each of her books focus on a neurological disorder and the emotional impact of the disease on the patient and those close to them. A PhD neuroscientist, she uses her thorough knowledge of the brain to enrich and fill out her novels while also creating interesting and complex characters and compelling storylines. I have loved every one of her books and this one is no exception.

Every Note Played centers on Richard, an accomplished classical pianist, his ex-wife, Karina, and his estranged daughter, Grace. When Richard first notices clumsiness is his fingers, he tries to ignore it and even allows his manager to write it off as a case of tendonitis. But when his symptoms worsen, he is forced to seek medical attention. The diagnosis, ALS, also known as Lou Gehrig's disease, shocks and devastates him. He is forced to rely on strangers to care for him and eventually on Karina, who makes the incredibly generous offer of allowing him to move back in to their family home so she and Grace can help care for him. Richard is a self-centered, rude and not very likable man, but as his condition inevitably worsens, his humanity shines through and he manages to repair some of the damage he has caused to those closest to him.

While I adore all of Genova's books this one hit particularly close to home for me. My husband's spunky and adorable grandmother died of the the bulbar variant of the disease a few years ago, and completely lost the ability to speak for the last several years of her life. One of my closest friends lost her father to the disease when he was in his early sixties. ALS affects people of all races, ages and walks of life, but even if you've never witnessed the disease up close, you're sure to be moved by this deftly told and emotional story. Just keep the tissues easily accessible.

And for bonus material, her TED talk on things you can do to prevent Alzheimer's disease is fascinating and educational.

https://ed.ted.com/featured/JbufIwmt