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I Didn't See It Coming: Scenes of Love, Loss and Lewy Body Dementia
In this memoir of love, loss, and Lewy body dementia (LBD), Mary Lou Falcone takes readers on a cathartic journey of caregiving that is filled with hope, laughter, and tears. At the age of ten, Mary Lou's life was forever changed when her father had a severe stroke that took away his ability to speak. While her mother worked three jobs, Mary Lou cared for not only her father but two younger siblings. Echoes of her childhood challenge return when she later faces the biggest test of her her soulmate of forty-seven years, the celebrated artist Nicky Zann, is diagnosed with the little-known disease Lewy body dementia, which ultimately claims his life. As her beloved husband’s sole caregiver throughout this difficult period, Mary Lou discovers invaluable resources for dealing with LBD, all of which she shares with her readers. In addition to Mary Lou’s firsthand account of her extraordinary journey, many friends and family, including world-renowned classical musicians, opera divas, directors, and actors, share their perspectives on her resilience in these pages. She emerges from great loss transformed and energized, as will the readers of I Didn't See It Coming .
304 pages, Hardcover
Published October 3, 2023
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March 24, 2024
I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia – Mary Lou Falcone – 2023 –
In this encompassing love story, Mary Lou Falcone (known as ML) recalls the love of her life, her late husband Nicky Zann (1943-2020), a gifted musician and talented professional artist/illustrator who lost his life during the Covid-19 pandemic from conditions related to Lewy Body Dementia (LBD). Zann’s beautifully done illustrations were generously included and add to the appeal of the book.
In recalling the extensive story of her childhood, ML turned to music at an early age to ease her anxiety that was related to helping care for her (young) father after a debilitating stroke, her step-mother worked three jobs to support the family. In the 1960’s she was accepted at the Curtis Institute of Music and taught briefly at college before launching her own business in the music industry. When ML met Nicky Zann (1973) he was married to his second wife, and they were a popular power-couple in the art world.
As a teen, Nicky Zann was under professional management singing and playing the piano opening at concerts for Patsy Cline, Jerry Lee Lewis, Johnny Cash and Jackie Wilson. In 1965, Zann’s priorities shifted towards art, where he studied architecture in college. He worked for advertising agencies and illustrated comic books, posters, etc. and enjoyed oil painting. According to ML, Zann’s artwork is posthumously represented by Swann Auction Galleries.
By 2017, after being together for over thirty years and following their civil marriage nuptials, ML accompanied her husband to the hospital where he was given a battery of tests. A neurologist was alarmed by his cognitive decline that included falls, extreme fatigue, and visual and auditory hallucinations. His diagnosis was severe: Lewy Body Dementia with Parkinson’s Disease, there were no cures. However, the focus of the story is less on LBD and more on the couple’s past and present personal lives, and how ML coped and cared for her husband during his terrifying illness. The book will be of greater interest to those who contributed excerpts to the storyline and those who knew this couple. With thanks to East End Press via NetGalley for the DDC for the purpose of review. (3.5* GOOD)
In this encompassing love story, Mary Lou Falcone (known as ML) recalls the love of her life, her late husband Nicky Zann (1943-2020), a gifted musician and talented professional artist/illustrator who lost his life during the Covid-19 pandemic from conditions related to Lewy Body Dementia (LBD). Zann’s beautifully done illustrations were generously included and add to the appeal of the book.
In recalling the extensive story of her childhood, ML turned to music at an early age to ease her anxiety that was related to helping care for her (young) father after a debilitating stroke, her step-mother worked three jobs to support the family. In the 1960’s she was accepted at the Curtis Institute of Music and taught briefly at college before launching her own business in the music industry. When ML met Nicky Zann (1973) he was married to his second wife, and they were a popular power-couple in the art world.
As a teen, Nicky Zann was under professional management singing and playing the piano opening at concerts for Patsy Cline, Jerry Lee Lewis, Johnny Cash and Jackie Wilson. In 1965, Zann’s priorities shifted towards art, where he studied architecture in college. He worked for advertising agencies and illustrated comic books, posters, etc. and enjoyed oil painting. According to ML, Zann’s artwork is posthumously represented by Swann Auction Galleries.
By 2017, after being together for over thirty years and following their civil marriage nuptials, ML accompanied her husband to the hospital where he was given a battery of tests. A neurologist was alarmed by his cognitive decline that included falls, extreme fatigue, and visual and auditory hallucinations. His diagnosis was severe: Lewy Body Dementia with Parkinson’s Disease, there were no cures. However, the focus of the story is less on LBD and more on the couple’s past and present personal lives, and how ML coped and cared for her husband during his terrifying illness. The book will be of greater interest to those who contributed excerpts to the storyline and those who knew this couple. With thanks to East End Press via NetGalley for the DDC for the purpose of review. (3.5* GOOD)
November 26, 2023
The publisher’s description of Mary Lou Falcone’s book as “a memoir of love, loss, and Lewy body dementia (LBD)” caught my attention. I was interested in learning about the unique challenges in caring for a partner with a less common and less-known form of dementia than Alzheimer’s, one related to Parkinson’s disease. LBD is the same condition that drove comedian Robin Williams to suicide. Williams had been aware of his Parkinson’s diagnosis—he had the classic shuffling gait, a tremor in his left hand, and the characteristic “Parkinsonian mask,” which made his face appear blank and emotionless due to lack of control of facial muscles. However, only an autopsy would explain the psychiatric symptoms he experienced: the significant anxiety, visual hallucinations, delusions, and paranoia. Lewy bodies (abnormal clumps of protein that develop inside nerve cells affected by Parkinson's disease) were widespread in Williams’s brain, and they were particularly evident in the region of the amygdalae, the brain’s major emotional processing centres. Falcone’s husband, Nicky Zann, a versatile and charismatic artist who died of the condition in 2020, had some (but not all) of the same symptoms as Williams. In Zann’s case, a definitive diagnosis did not require an autopsy, but it certainly took time.
I was disappointed that Falcone’s book was so taken up with content other than her experience with LBD. In fact, the author only addresses her husband’s condition in the last third of the memoir. A dynamic and high-powered performing-arts publicist who in her heyday represented several big-name classical musicians and opera stars, Falcone appears to have been more committed here to providing a record of her own development, family history, and accomplishments. The publisher’s description mentions that friends and family “share” their perspectives on her resilience in the book, but that isn’t true. What the reader actually gets is chapter after chapter from the perspective of one person or another in Falcone’s life. Most are hymns of praise to her talents. The glowing testimonies from family members, teachers, friends, and famous performing artists highlight her superior communication skills, caring, ingenuity, loyalty, and integrity. These accounts are not “shared”—i.e., actually written—by the author’s friends and family at all, but rather by Falcone herself. I don’t consider that sharing. To give an example: the author adopts the point of view of her long-dead father who reflects on the unfair demands placed on his eldest child. He had experienced a catastrophic stroke in his thirties. It upended the lives of the Falcone family, forcing Mary Lou’s mother to take on three jobs and the ten-year-old girl to assume some heavy responsibilities. The major one was undertaking daily speech therapy with her dad. (This was a futile task given the degree to which Mr. Falcone’s speech centres had been ravaged.) Since the stroke left her dad disabled and unable to communicate verbally, an account from his point of view, along with the cliché-ridden and sometimes saccharine “recollections” of others who died long before this memoir was even written, appear to be what Falcone imagines these people might have been thinking about her. Perhaps they’re based on compliments she received. The impressions are unfailingly positive and flattering, and while they give the reader a sense of the author’s character and achievements, they have little to do with the purported subject of the book: providing care for a family member with Lewy body dementia. I have no particular interest in the world of classical music or opera—and even less in the career trajectory of a publicist!—so this book really missed the mark for me. As for the taking on of the personae of others in order to praise oneself: I’ve never before seen such an approach in a memoir, and I hope I never encounter it again. I found it jarring, forced, false, strange, and off-putting.
What I can say in the book’s favour is that it is attractively designed and decorated with Nicky Zann’s distinctive and stylish art. Additionally, the last few chapters finally fairly effectively address LBD, which I thought was supposed to be the memoir’s actual focus.
In his mid-seventies, Zann’s initial LBD symptoms were non-specific. They included forgetfulness, fatigue, and some erratic behaviour. Zann was discovered to have coronary artery disease, and there was some hope that triple bypass surgery would provide a remedy. It did not. After the surgery he experienced severe hallucinations. It was convenient to blame these on anesthesia, but over the next 12 months Falcone noted a slew of other complaints: hand tremors (while awake and asleep), dreams that seemed real, halting and erratic speech, high levels of anxiety, and inordinate amounts of time required to complete simple tasks. Writing a cheque, for example, took 20 minutes. Four months after Zann received his diagnosis of Lewy body dementia with Parkinsonian aspects (in 2019), it was taking him two hours to shower and dress. In time, auditory and visual hallucinations increased. Zann heard faucets producing voices and pillows emitting music. Falls increased, as did hours spent sleeping. Bowel control and appetite declined.
Falcone emphasizes that no two cases of the condition are alike and that LBD is often misdiagnosed as Alzheimer’s, Parkinson’s, or a psychiatric disorder. Her best, but perhaps least surprising, piece of advice is for caregivers to link up with a dedicated support network. Given the variability of the symptoms, what emerges from this book is that those who care for such patients need to be observant, flexible, and adaptable. One thing Falcone is brave and frank enough to comment on is the sexuality of LBD patients. She is clear that she had limits in this area and Nicky had what amounts to telephone sex with some old flame to satisfy very real needs.
In the end, I Didn’t See It Coming shed some light on a condition I wasn’t well acquainted with. However, I’m doubtful that it’s the best place to start if you want to find out about Lewy body dementia. There’s just way too much other stuff you have to get through first.
I was disappointed that Falcone’s book was so taken up with content other than her experience with LBD. In fact, the author only addresses her husband’s condition in the last third of the memoir. A dynamic and high-powered performing-arts publicist who in her heyday represented several big-name classical musicians and opera stars, Falcone appears to have been more committed here to providing a record of her own development, family history, and accomplishments. The publisher’s description mentions that friends and family “share” their perspectives on her resilience in the book, but that isn’t true. What the reader actually gets is chapter after chapter from the perspective of one person or another in Falcone’s life. Most are hymns of praise to her talents. The glowing testimonies from family members, teachers, friends, and famous performing artists highlight her superior communication skills, caring, ingenuity, loyalty, and integrity. These accounts are not “shared”—i.e., actually written—by the author’s friends and family at all, but rather by Falcone herself. I don’t consider that sharing. To give an example: the author adopts the point of view of her long-dead father who reflects on the unfair demands placed on his eldest child. He had experienced a catastrophic stroke in his thirties. It upended the lives of the Falcone family, forcing Mary Lou’s mother to take on three jobs and the ten-year-old girl to assume some heavy responsibilities. The major one was undertaking daily speech therapy with her dad. (This was a futile task given the degree to which Mr. Falcone’s speech centres had been ravaged.) Since the stroke left her dad disabled and unable to communicate verbally, an account from his point of view, along with the cliché-ridden and sometimes saccharine “recollections” of others who died long before this memoir was even written, appear to be what Falcone imagines these people might have been thinking about her. Perhaps they’re based on compliments she received. The impressions are unfailingly positive and flattering, and while they give the reader a sense of the author’s character and achievements, they have little to do with the purported subject of the book: providing care for a family member with Lewy body dementia. I have no particular interest in the world of classical music or opera—and even less in the career trajectory of a publicist!—so this book really missed the mark for me. As for the taking on of the personae of others in order to praise oneself: I’ve never before seen such an approach in a memoir, and I hope I never encounter it again. I found it jarring, forced, false, strange, and off-putting.
What I can say in the book’s favour is that it is attractively designed and decorated with Nicky Zann’s distinctive and stylish art. Additionally, the last few chapters finally fairly effectively address LBD, which I thought was supposed to be the memoir’s actual focus.
In his mid-seventies, Zann’s initial LBD symptoms were non-specific. They included forgetfulness, fatigue, and some erratic behaviour. Zann was discovered to have coronary artery disease, and there was some hope that triple bypass surgery would provide a remedy. It did not. After the surgery he experienced severe hallucinations. It was convenient to blame these on anesthesia, but over the next 12 months Falcone noted a slew of other complaints: hand tremors (while awake and asleep), dreams that seemed real, halting and erratic speech, high levels of anxiety, and inordinate amounts of time required to complete simple tasks. Writing a cheque, for example, took 20 minutes. Four months after Zann received his diagnosis of Lewy body dementia with Parkinsonian aspects (in 2019), it was taking him two hours to shower and dress. In time, auditory and visual hallucinations increased. Zann heard faucets producing voices and pillows emitting music. Falls increased, as did hours spent sleeping. Bowel control and appetite declined.
Falcone emphasizes that no two cases of the condition are alike and that LBD is often misdiagnosed as Alzheimer’s, Parkinson’s, or a psychiatric disorder. Her best, but perhaps least surprising, piece of advice is for caregivers to link up with a dedicated support network. Given the variability of the symptoms, what emerges from this book is that those who care for such patients need to be observant, flexible, and adaptable. One thing Falcone is brave and frank enough to comment on is the sexuality of LBD patients. She is clear that she had limits in this area and Nicky had what amounts to telephone sex with some old flame to satisfy very real needs.
In the end, I Didn’t See It Coming shed some light on a condition I wasn’t well acquainted with. However, I’m doubtful that it’s the best place to start if you want to find out about Lewy body dementia. There’s just way too much other stuff you have to get through first.
October 4, 2023
I Didn’t See it Coming was a very timely read for me as a friend’s husband has been diagnosed with Lewy body dementia. I was engrossed in the day to day progression of this disabling disease on poor Nicky. It was so heart wrenching to read. I so appreciated all the information I was able to glean about LBD by reading this book.
I read this on my kindle and I did find it frustrating for about the first half of the book as the title and chapter heading were frequently interspersed and repeated within the text which interrupted the flow of Mary Lou’s memoir. At times the font was so close to the background and I was unable to change the settings to adjust for that. I think it was meant to denote who was telling that particular section of the story. I did struggle with trying to determine who was telling several parts of her story.
Their lives together were so very very special and I was in tears as she struggled with coming to terms with the rapid progression and his fading away, but most of all when she was expected to deal with “the other woman”. I hope writing this memoir deal with her tremendous loss of a great love. So sad that it happened during Covid which truly limited her ability to seek more support and help. An eye opening read for sure.
Many many thanks to Mary Lou Falcone and NetGalley for affording me the opportunity to read an arc of this just published book. Four stars for the day to day passages and the information and 3 for the memoir - 3 1/2 stars.
I read this on my kindle and I did find it frustrating for about the first half of the book as the title and chapter heading were frequently interspersed and repeated within the text which interrupted the flow of Mary Lou’s memoir. At times the font was so close to the background and I was unable to change the settings to adjust for that. I think it was meant to denote who was telling that particular section of the story. I did struggle with trying to determine who was telling several parts of her story.
Their lives together were so very very special and I was in tears as she struggled with coming to terms with the rapid progression and his fading away, but most of all when she was expected to deal with “the other woman”. I hope writing this memoir deal with her tremendous loss of a great love. So sad that it happened during Covid which truly limited her ability to seek more support and help. An eye opening read for sure.
Many many thanks to Mary Lou Falcone and NetGalley for affording me the opportunity to read an arc of this just published book. Four stars for the day to day passages and the information and 3 for the memoir - 3 1/2 stars.
July 1, 2023
I received a copy of this in exchange for my honest review. Thank you NetGalley.
Wow. This book was raw and heartbreaking. I went into this not knowing much about LBD, and I left with a whole new outlook on life.
I can't imagine how difficult it must have been for her to experience this and become a caretaker for her own husband.
What a beautiful but heartwrenching story.
Wow. This book was raw and heartbreaking. I went into this not knowing much about LBD, and I left with a whole new outlook on life.
I can't imagine how difficult it must have been for her to experience this and become a caretaker for her own husband.
What a beautiful but heartwrenching story.
August 20, 2023
I received an ebook from Net Galley for review, the format of which didn't work well on my Kindle. The odd page breaks and ever-changing formatting made it difficult to navigate through the book. While that doesn't influence my evaluation of the contents of the book, I also found the non-linear storytelling difficult to track at times. Jumping back and forth between voices made it difficult to determine exactly who was narrating certain passages. The most poignant part of the book was, of course, Falcone's retelling of the day-to-day difficulties of watching her beloved lose all his faculties, and the challenges of caring for him as he slipped away bit by bit. This is something many of us fear as we get older, both becoming the person with the fatal diagnosis, as well as possibly becoming the one thrust into the caregiver role. I thought she was incredibly brave and committed to undertake the journey on her own with no other caregivers.
January 9, 2024
I really liked the last part of the book. I think it gave good insight into the life of LBD and their caregivers. The first part was good but was confusing with the author going from her perspective to her friend’s perspective.
November 13, 2023
If there is minus stars, I would have given -3.
I read it because a) my father has LBD, and b) univ hospital lead support group is hosting author event, i was going to go. I struggled to finish this book, and needless to say, i’m not going.
The depth of sharing is too shallow for my liking and as a result, I cannot say I learned anything new.
If you want to have some info on where to find more info, go straight to chapter 50. But honestly, you could also Google it.
Side note, I keep wondering what else money can buy.
I read it because a) my father has LBD, and b) univ hospital lead support group is hosting author event, i was going to go. I struggled to finish this book, and needless to say, i’m not going.
The depth of sharing is too shallow for my liking and as a result, I cannot say I learned anything new.
If you want to have some info on where to find more info, go straight to chapter 50. But honestly, you could also Google it.
Side note, I keep wondering what else money can buy.
June 29, 2023
We go on a journey through time with Mary. After a childhood of helping care for family members.
She is only dealt another ordeal when her husband health declines. She express how it felt and how she tries to overcome things.
She is only dealt another ordeal when her husband health declines. She express how it felt and how she tries to overcome things.
May 30, 2025
In I Didn’t See It Coming, Mary Lou Falcone shares her life journey. This memoir narrates how she navigated love, loss, and Lewy Body Dementia (LBD). From caring for her speech-impaired father at 10 to becoming the main support for her husband Nicky Zann, who had LBD, Mary Lou’s story is filled with not only highs and lows but also hope and laughter. The book offers practical insights into dealing with LBD, and it includes thoughts from friends and family. It’s a stirring story of how Mary Lou faced tough times and found strength amid life’s challenges.
This page-turner unveils pivotal moments in the life of the author. What Falcone has so adeptly achieved with this book is subtlety transitioning the story from a captivating coming-of-age story to an insightful guide on how to care for a loved one with Lewy Body Dementia. This is dexterously done to blend with the exploration of her romantic life over the years. Yet, the alternation between perspectives from the author and other individuals with their own accounts never felt out of place.
No truer statement than this captured in the book describes I Didn’t See It Coming better than “The pendulum swings; it just doesn’t make any local stops.” Mary Lou Falcone’s life has been one of pendulum swings. Motion is dampened every now and then by good fortune, luck, laughter, love, and difficult times. Yet, an unmistakable take-home from all of them is Falcone’s great strength of character.
Falcone’s ability to couple storytelling with insightful observations makes this book not only a literary gem but also a mirror reflecting the complexities of debilitating diseases such as dementia. The art illustrations by Nicky Zann, Falcone’s now-late husband, add a visual layer to the entire journey. I Didn’t See It Coming by Mary Lou Falcone is a poignant exploration of what patience and love can achieve in a world of pendulums that don’t stop swinging.
This page-turner unveils pivotal moments in the life of the author. What Falcone has so adeptly achieved with this book is subtlety transitioning the story from a captivating coming-of-age story to an insightful guide on how to care for a loved one with Lewy Body Dementia. This is dexterously done to blend with the exploration of her romantic life over the years. Yet, the alternation between perspectives from the author and other individuals with their own accounts never felt out of place.
No truer statement than this captured in the book describes I Didn’t See It Coming better than “The pendulum swings; it just doesn’t make any local stops.” Mary Lou Falcone’s life has been one of pendulum swings. Motion is dampened every now and then by good fortune, luck, laughter, love, and difficult times. Yet, an unmistakable take-home from all of them is Falcone’s great strength of character.
Falcone’s ability to couple storytelling with insightful observations makes this book not only a literary gem but also a mirror reflecting the complexities of debilitating diseases such as dementia. The art illustrations by Nicky Zann, Falcone’s now-late husband, add a visual layer to the entire journey. I Didn’t See It Coming by Mary Lou Falcone is a poignant exploration of what patience and love can achieve in a world of pendulums that don’t stop swinging.
August 1, 2023
This is a beautifully written, poignant memoir. It deals with the hardships of life as well as the beauty it can bring. The author is a born caregiver beginning with her father's illness and taking care of her siblings in her youth. In many ways, she is also taking care of her mother dealing with the transition of a very different life than she thought she was going to have.
Later on, as a very successful publicist, she takes on another chapter. This chapter deals with her introduction to Lewy Body Dementia through the love of her life, Nicky Zann. As the disease progresses, the author researches and reaches out to find out everything she can regarding this disease.
As you read this book, you will find that the author has had a fascinating life and has also delved into the world of Lewy Body Dementia. This turns out to be not only a memoir but also a wonderful tutorial of all the questions you may have about the disease.
I suggest reading this book to anyone who is dealing with any form of dementia. You will find it to be a valuable tool in recognizing the signs, dealing with the disease, and giving your loved one the grace and dignity to navigate through it.
Later on, as a very successful publicist, she takes on another chapter. This chapter deals with her introduction to Lewy Body Dementia through the love of her life, Nicky Zann. As the disease progresses, the author researches and reaches out to find out everything she can regarding this disease.
As you read this book, you will find that the author has had a fascinating life and has also delved into the world of Lewy Body Dementia. This turns out to be not only a memoir but also a wonderful tutorial of all the questions you may have about the disease.
I suggest reading this book to anyone who is dealing with any form of dementia. You will find it to be a valuable tool in recognizing the signs, dealing with the disease, and giving your loved one the grace and dignity to navigate through it.
July 8, 2025
I started this book with the hopes that it would be a memoir and information source about Lewy body dementia. And it was, but it really didn’t start until chapter 40. Not to offend the author, but all the beginning portion was of no interest to me. It really didn’t need to be in the book and I think readers who wanted to know about Lewy body really didn’t care to hear The beginning portion in that much detail of her life. The gist of what we wanted, starts at chapter 40 and anyone who watched someone suffer from this disease, It really hit hard. Small trigger warning as she tells you it’s definitely graphic read as far as unearthing emotions From this cruel illness. As a recent survivor of a loved one lost to this disease it brought me to tears, so it’s not easy to read this. It’s good to know that you’re not alone, but if it’s fresh in your life, be careful because she really does hit all the Truth and play-by-play of what it’s life living with this ruthless disease
January 9, 2026
I was looking for a book that educated me about Lewy Body Dementia. This book was recommended on the Lewy Body Dementia Resource Center page so I expected it would be an informative read. However, only the last third of the book was really about LBD. The rest of the book was about the author's life and she told it from the point of view of other people she had met throughout her life. You never really knew who was talking. I later found out the author is or at some point served on the board of directors for the Lewy Body Dementia Resource Center which is probably why her book was recommended there. If you are new to LBD, I would probably find a different book or just skip to the last third of the book.
August 7, 2023
Mary Lou Falcone , daughter, and Lou Falcone, father are lovers of people and especially their family. Mary Lou will suffer through hard times, but like sticky glue Mary Lou Falcone does not run away. She is there for the good times and the bad times. And the hard times are manifold. My goodness, life can look like all the stars have stopped shining and will never shine again. Lou Falcone at thirty-seven years old will never speak again. It is not because he does not try. It just does not happen. His family, Mary Lou Falcone and three children are there for him in every way.Light the stars, please. Thank you to Net Galley and East End Press.
November 25, 2023
A beautiful love story becomes an even more poignant story of love and compassion as a love is lost. This not only tells a remarkable story of a life that began with loss but ends in loss in a way that elevates the human spirit. It is also a personal journey through Lewy Body Dementia and what a terrifying journey it is. Caregivers who are living this story will benefit from hearing Mary Lou's experience with this terrifying disease. She is on a mission to increase awareness of this dreadful disease which is far less recognized than Alzheimer's but far more deadly.
May 17, 2024
I thought I had reviewed this book, but it was so powerful that I just gave it thought. Mary Lou, may I be familiar, your stories just amazed me. What an interesting life.
As LBD changed your husband, your love for him was so powerful.
I know I will read your story again and again as my husband is 5 years into LBD. Changes with paranoia have begun
Thank you for sharing the hardest story.
As LBD changed your husband, your love for him was so powerful.
I know I will read your story again and again as my husband is 5 years into LBD. Changes with paranoia have begun
Thank you for sharing the hardest story.
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