At the age of 49, Dr. Thomas Graboys had reached the pinnacle of his career and was leading a charmed life. A nationally renowned Boston cardiologist popular for his attention to the hearts and souls of his patients, Graboys was part of “The Cardiology Dream Team” summoned to treat Boston Celtics star Reggie Lewis after he collapsed on the court in 1993. He had a beautiful wife, two wonderful daughters, positions on both the faculty of Harvard Medical School and the staff of Boston’s Brigham and Women’s Hospital, and a thriving private practice. Today, Grayboys is battling a particularly aggressive form of Parkinson’s disease and progressive dementia, and can no longer see patients or give rounds. He is stooped, and shuffles when he walks, the gait of a man much older than his 63 years. Despite the physical, mental and emotional toll he battles daily, Graboys continues his life-long mission of caring for the world one human being at a time by telling his story so that others may find comfort, inspiration, or validation in their own struggles. This is an unflinching memoir of a devastating illness as only a consummate physician could write it. One can’t help but imagine what Dr. Graboys, the healer, would say to Tom Graboys, the patient—a face-to-face scene imagined in this inspiring book. In his joint roles, Thomas Graboys finds a way to convey hope, optimism and an appreciation of what it means to be truly alive.
Two starts for the writing. One more star for the courage and strength it took to write it Two more stars for the poem at the very end, written by Tom Graboy's wife just before she died of cancer.
A moving account of a physician's decline into Parkinson's and Lewy Body Dementia. It was poignant to me because my father had Lewy Body and eventually died as a result of an overdose of an anti-psychotic drig, Olanzapine, that is sometimes used to calm down the demented elderly. Dr Graboys seemed to have been an excellent physician who had to let it go because of his disease. The book chronicles his lengthy denial and eventual submission to the diagnosis and reminds us that with serious illness, the question is not "why me", but rather, "why not".
Cried through the whole thing. No happy ending, but an incredibly honest and painful account of the author's experience as a Parkinson's/dementia patient. I met the author almost 15 years ago...it's hard to imagine this is the same person. What a testament this story is to the strength inside this man, and potentially inside all of us.
Doctor Thomas Grayboys was much too early diagnosed with Parkinson and Lewy Body Syndrome and one could feel his pain and uncertainty as a well-respected Cardiologist when he began to share his diagnosis with his patients in August 2004.
As someone very active at Bob Sierra YMCA in Tampa I was proud that our local Y has a special Spinning Program for Parkinson patients as Doctor Grayboys often emphasizes the role that exercise plays in fighting illness especially dementia.
In his cardiology practice Doctor Grayboys often imbued his patients with Hope something he offers in this book to patients and families facing Parkinsons.
I wish there was a sequel to how this brilliant medical doctor handled his disease in the intervening years before his death in 2015 at 70 years young.
“…these are not just diseases of the brain, they are maladies of the soul.”
This is not just a story about Parkinson’s and dementia, it is a deeply human testimony about what it means to live, to love, and to let go with dignity. Dr. Thomas Graboys, a brilliant physician, loving husband, wonderful father, and courageous patient, reminds us that while the body may fail, the essence, our humanity, our love, remains. From the very beginning, his voice is clear: he does not want to be reduced to a collection of symptoms. He wants to be seen in his wholeness. And he succeeds. Every page is an invitation to see illness through the eyes of the soul, to wonder what it must be like when your body begins to fade but your mind, though intermittently, remains painfully aware.
His reflections on family, patients, his daughters, and especially his wife Caroline (whose presence feels like a lighthouse of tenderness) are moving beyond words. It’s hard not to stop, underline, breathe, and give thanks for the vulnerability he offers. The inclusion of letters from loved ones is heartbreaking and luminous all at once. One personal thought/question stayed with me: Would we choose the same partner if we knew illness was coming? And more importantly: Would we choose to stay?
Graboys was not only a great doctor, he was, and remains, a powerful teacher of life. His way of making space for suffering, his non-dogmatic spirituality, his humor even in deterioration, and his unwavering love make this book a rare gem for anyone who wants to better understand the human experience in times of fragility.
Thoughts during the book (kindle %) BEWARE OF SPOILERS:
My dad was diagnosed with Parkinson's disease about 3 years ago and its symptoms are progressing rapidly. The preface and first few chapters of this book gave me profound insight into the experience of a Parkinson's patient. I learned about specific symptoms I didn't know were part of the disease and I gained much insight into the mental distress the patient feels as the dimentia and disabilities progress. Since Parkinson's takes away the patient's ability to verbalize, family members are often guessing what the patient is thinking and feeling--this book can serve as a vital peek into the head of the patient. I learned SO much and very much wish I had read this as soon as my dad was diagnosed. Given this, I very much recommend this book to family and care providers of Parkinson's patients.
About half way through this book, I couldn't read more. After about 1/3 through, the book turned to philosophizing over the doctor-patient relationship, the author's (former physician) perspective on patient care, and his transition from doctor to patient. This could be very interesting for those in the medical field, but for the lay reader, it became dry, ego-centric and plotless.
I loved this honest story of what it's like to deal with dementia, told from the perspective of the person who is struggling with increasingly higher levels of dementia. For anyone who has a family member suffering from dementia, this book is eye-opening. Thanks so much to the author for sharing his story. He truly makes the struggles come alive, and helps explore family member reactions too.
The only thing that would make this story better is to spend less time talking about the author's personal accomplishments. I like the connection between his experience as a physician and how it helped him grapple with the disease. But the book would be a better help to the average person if the author spent less time talking about his amazing accomplishments before he became ill, and instead approached the book from the standpoint of how the average person tackles dementia and Parkinson's disease.
After seeing a friend with Parkinson's a few weeks ago I sought out this book to gain more insight into the disease. Dr. Thomas Graboys was a highly trained cardiologist whose wife had just died from cancer when began showing signs of PD. His candid book is a memoir about his disease, his family, his inner dialog as he was in denial about his disease, and his angst about going forward. It gave me many insights in the disease and made me go back to hear his interview on WBUR's show On Point http://www.onpointradio.org/2008/06/t... a great follow up after reading the book.
This should be required reading for doctors to gain further insight into a patient's journey with this brutal disease and what it means to an entire community around a patient. Further testimony of the importance of work to bring Death with Dignity laws to all 50 states. Well done.
Interesting reading for anyone with a close family member suffering from this horrible disease. It got bogged down a bit in the middle with some rather personal career stuff and I wish it had been more tightly edited. The beginning description of the author's slow discovery and acceptance of his illness, and the concluding sections where his family members describe their own feelings of loss and coping were the most helpful and most moving.
I loved this book, but then I work with those suffering from Dementia daily. I feel for them and their families it is so important to understand their lives. The author did not sugarcoat anything and was very brutally honest about his own denial and its impact on those around him personally and professionally.
Very interesting book, especially for those of us who have people in our lives going through something similar. Inspirational in how to handle a chronic, progressive illness.
I learned from this one and Richard Taylor's Alzheimer's from the Inside Out that people with dementia (like people without it) are often unable to see clearly the extent of their problems, while those around can tell. I see it as a protective self-deception. I can certainly see it in my family member who has dementia.
Sadly, the hope in this book from the medications Dr. Graboys took, I found, eventually did not live up to the potential that at first they seemed to indicate.
"In the spring of 2007, you began taking the drug Namenda in combination with Aricept to improve cognitive functioning. You write near the end of your book that you felt it had helped put your disease in remission. Is that still going well?
It kind of plateaued. There's a trial going on to see whether Namenda added on to Aricept improves symptoms. I know probably half-a-dozen people now who are on both drugs, and it seems to have plateaued for them too.
I have some good days and some not so good days. It all depends on what symptoms we're talking about. For example, motor problems with Parkinson's are generally taken care of by the drugs I'm taking. That's helpful. But cognitive functioning, the ability to do math -- all the little things that indicate you're on track -- are less predictable, and frustrating.
I think there's a window of opportunity that occurs each day with the drugs, and those are the times when you communicate well, like the way you and I are speaking now.
I joke with people that you feel lousy before you take the medicine, you feel lousy while you take the medicine, and you feel lousy after you take the medicine. So what's the point?"
And now, here are my favorite quotes from his book:
page 55: How do you get angry…with someone who has dementia and can’t necessarily think quickly enough, or clearly enough, to fight back? How do you get angry at someone whose dependence on you is so great that they feel they cannot risk your ire, justified or not?
And for my part, as the dependent party…can I risk venting my own anger? Do I every have a right to complain…about anything? Or is my indebtedness…so great that I have forfeited that right?
page 70: But should I be driving, even the mile to the coffee shop? It’s a question that dogs me every time I make the trip…Am I a danger to others? To myself? Given how desperate I am to continue to drive, can I ever be honest enough with myself to call it quits before it’s too late? And yet, despite being weighted with all this stress, that little drive means everything to me.
page 71: When Vicki and I put the driving question to Growdon, I was struck by the sensitivity of his response…his eyes betrayed an understanding of how desperately I want to hold on to my car keys, and what a powerfully loaded issue driving is to me. The safe and easy answer for him, the least morally ambiguous, would have been “no.” He knows I can afford to take a cab. He listened to me describe the limited driving I do, and without mandating any particular course of action he then said, “Let’s see what we can do that will allow you to drive safely to and from the few nearby places you need to go.”…For not taking the easy road himself, for not taking away that one small remnant of independence and freedom of movement, for not playing it absolutely safe, for leaving some room for me to come to my own judgments, I am grateful to Growdon. If he believed my limited driving posed a danger, he would have said so.
page 124: [Referring to writings about his disease and its effects on them by his loved ones] The most painful thing about these statements, what I was least prepared for, is the degree to which my dementia has progressed. The picture painted of my ability to connect and communicate is worse than I imagined. It’s a bitter pill to swallow.
page 126: But how to I tell them everything without adding to their burden?...I do confide in them when I am not feeling well, but some aspects of illness, no matter how strong the support structure around you, are borne alone—not sharing every dark moment, every morbid though, and every fear is how the ill can help ease the burden of the well.
page 166: Even as I am losing control over my mind and body, I can still, today, exercise some control over my future by expressing my wishes to my family. But how do I articulate those wishes when the possible scenarios are so varied, when ambiguity rather than clarity, subjectivity rather than objectivity, hope and dread attend almost every aspect of the dilemma? Who is to say how much dementia is too much to live with? Who will know what really goes on in my head when I lose the ability to communicate? And, assuming that all the members of my family and I come to a clear understanding of the point of no return, how exactly—both medically and legally—does one go about ending a life when the body is intact but the mind is gone? If I ask others to help me hasten the end, will I be putting on their shoulders an unbearable burden? [Judy’s answer: yes, unbearable.] And if they shoulder that burden and act according to my wishes, will I be sentencing them to a lifetime of guilt and doubt, especially if they are uncomfortable with the decision? [Judy’s answer: they should say no to something they cannot in good conscience agree with. I do note that the author died in Jan. 2015 of his disease, so I think it was a natural death.]
page 169: I have seen and experienced for myself the relief and release that follows the death of a person held very dear. There is no shame in that. Death is, in some ways, the grievously ill person’s gift to the living. It is what releases the survivors from the gloomy twilight of debilitating illness, back into life… Though it is natural and normal to feel relief when a loved one suffering through a terrible illness dies, it does not make it any easier to make the difficult decisions that surround end-of-life care. Because death is so final, family members are terrified that they may give up early and be burdened with a lifetime of guilt, that the next day might bring some unexpected hope of miraculous recover, though…rare. But the fact that they do occur once in a blue moon plants seeds of doubt…We feel that there is no room for error, yet erros are a part of medicine and of life.
page 171: Upon examination by the neurologist, it turned out that Mr. H was not suffering from Alzheimer’s or an organic dementia at all. He had something that I had never even considered: normal pressure hydrocephalus, an obstruction in the brain that was causing fluid to collect in the brain casing…relieved with a simple procedure, and the dementia-like symptoms disappeared immediately.
page 173: [the author’s] …my general wish that I not live when I am too demented to know my own family, no specific plan of action…[was] laid down. And as I learned just a week later in a slightly different context, the clarity one reaches on such issues can go right out the window when the time comes to make real life-and-death decisions…no matter how much we intellectualize and plan for the day when a critical life-and-death decision will have to be made, when that day comes all bets are off. There will be nuanced options, emotions will be unpredictable, and any clarity achieved months earlier will dissipate. Muddling through may be the only real option, no matter how hard we try today to plan for my life tomorrow.
[HOPE]: page 187: I often wrote small notes that I gave to patients as they left…to demonstrate my faith in their future…one patient…told me of his deep remorse that he might not be alive for his daughter’s wedding a few months hence. To him I wrote, “You will dance at your daughter’s wedding. Show me this note at our next meeting.” Dr. H did dance at his daughter’s wedding and proudly pulled the note out of his pocket at his next appointment. He lived for a few more years. Did these notes, often kept close by…stave off death? No, but I believe the hope they inspired absolutely prolonged the lives of many a patient.
My husband was diagnosed with Parkinson’s Disease about four years ago. At first, we followed the conventional route prescription meds, physical therapy, and regular doctor visits. Unfortunately, despite our efforts, his condition gradually got worse. His memory declined, coordination became a challenge, and daily life was growing increasingly difficult for both of us.About a year ago, feeling like we were out of options, we decided to explore a more natural route. That’s when we came across NaturePath Herbal Clinic. To be honest, we didn’t expect much. But we were surprised within just a few months of starting their herbal program, there were noticeable improvements. His alertness sharpened, his mobility improved, and he seemed to have more strength and energy.Today, he’s more active, confident, and independent than he's been in years. It’s been a transformative journey, and I truly believe this natural approach made a real difference for him. If you or someone you care about is dealing with Parkinson’s, I’d definitely suggest taking a look at what NaturePath offers. Their website is www.naturepathherbalclinic.com info@naturepathherbalclinic.com
Sending Prayers and Support❤️.. My Husband had Parkinson's disease and was dealing with shakes, stiffness and balance issues – it was like his body was in rebellion. Meds ( Levodopa ) and therapies were not doing much, so we thought about trying alternative methods as we heard interesting stories about Ayurvedic herbs with this disease. We explored the path and it changed his life with all symptoms totally reversed - Shakes calmed down, stiffness took a hike. My husband is living proof that natural Ayurvedic herbs can be a game-changer in the face of Parkinson's as he is totally cured and fine now. The journey wasn't always smooth, but the results speak for themselves. If anyone out there is facing a similar battle, consider giving Ayurvedic herbs a shot. We got the Ayurvedic herbs which cured him from natural herbs centre. com I recommend Ayurvedic treatment from Natural Herbs Centre for Parkinson’s disease This is how my husband reversed his PD. This isn’t some scam or some made up nonsense.
In Parkinson’s and dementia, “anxiety, fear, depression, and anger are almost always part of the clinical picture; for, in the final analysis, these are not just diseases of the brain, they are maladies of the soul.” Life in the Balance is a brutally honest look at a brutal disease. Where some memoirs about a person and their disease retreat to the clinical and objective, Tom Graboys talks about the emotions of living with his. In writing his book “[he is] taking as much control as [he] can over a life in which losing control is the central theme, the defining characteristic.” Like Abraham Verghese, Tom Graboys was a physician who took a holistic approach to caring for the patient. He sought to understand his own Parkinson’s and dementia in the context of its relation to his family and friends and in relaying his story he gives hope and courage to all who are dealing with a chronic illness.
I wanted to read this book because as a caregiver of someone with Lewy Body Dementia, I was hoping for in “insider’s view” of what it’s like to be the one with the disease. I wasn’t quite satisfied on this count, because the book was written relatively early in his diagnosis, before he had the worst manifestations of LBD, and he presented with more Parkinson’s symptoms than LBD. That said, it was mostly interesting to read, especially learning about his extreme denial at the beginnings of having symptoms. There are ways that people who live with money and privileges the rest of us don’t enjoy can be tone deaf to the way they present themselves. I’m happy for him that he was able to hire housekeepers, gardeners, accountants, etc., but it brought home to me the stress of being a full time caregiver AND filling all those other roles.
I was diagnosed with Parkinson’s Disease Dementia (PDD) at 55, experiencing tremors, muscle stiffness, and balance issues. Despite treatments like Foslevodopa-Foscarbidopa and physiotherapy, my symptoms worsened. After seeing a YouTube testimonial about Dr. Madida Sam and EarthCure Herbal Clinic where someone shared their successful treatment for Motor Neurone Disease (MND) then I visited "w w w .earthcureherbalclinic .c om", and reached out to them. They put me on a 6-month treatment protocol, and after just 3 months, my symptoms drastically improved. By the end of the treatment, I felt like I had never had PDD, and my medical tests confirmed I no longer suffer from it. I’m so grateful to EarthCure Herbal Clinic and Dr. Madida Sam for helping me, and I’m sharing this to give hope to others.
My Husband was diagnosed with Parkinson’s when he was 62 years old 2 years ago. The Levodopa did very little to help him. The medical team did even less. His decline was rapid and devastating. It was tremors at first, then hallucination. Last year, a family friend told us about Natural Herbs Centre and their successful Parkinson’s Ayurveda TREATMENT, we visited their website natural herbs centre . com and ordered their Parkinson’s Ayurveda protocol, i am happy to report the treatment effectively treated and reversed his Parkinson’s disease, most of his symptoms stopped, he’s able to walk again, sleep well and exercise regularly.he’s active now, I can personally vouch for these remedy but you would probably need to decide what works best for you
Not a great or even a good book. The book seemed to vacillate between how the author led a charmed life-athletic, good looking, well-educated to being a pre-eminent doctor-and how his disease made him a miserable person. Just depressing. It would have been nice to get more background-how he became a doctor-what made him tick, etc.
But there we're some nuggets in here-he mentioned how sitting next to a patient is much more therapeutic then sitting across from the patient, as well as how human touch can make a huge difference. Additionally, The importance, and the tough questions, of when to "pull the plug" was highlighted.
This memoir makes you understand why doctors can't treat themselves. The lengths that Graboys and his colleagues go to, to deny and cover up his condition are rather shocking. He chose to conceal his diagnosis from his fiancee until after they wed and that was a bridge too far for me. This memoir is certainly heartfelt but it made me furious at times because Graboys denial is so strong and unrelenting.
Minuteman. Boston physician develops Parkinson's, denies it for years, doesn't tell his second wife-to-be til symptoms worsen after marriage. Has cognitive impairment, written with a professional writer
This entire review has been hidden because of spoilers.
Ouvrage éclairant, touchant qui permet de mesurer ce que l'expérience parkinsonienne a de semblable et de différent pour chaque individu et je dirais chaque famille atteinte.
Well-written, and fascinating as a memoir for anyone interested in Parkinson's and/or dementia, but, oh, so discouraging and depressing because this many found no hope in his journey.
Dr. Thomas Graboys was a distinguished heart doctor who seemed to have it all. He had lost his first wife to cancer but was newly married to a wonderful, smart, sexy woman and he was at the top of his profession. Then he was struck by an aggressive form of Parkinson's Disease called Lewy body disease that not only attacked his body but also his mind.
I have a personal interest in this book. Someone I love deeply has been fighting Parkinson's for years, though thankfully not the same kind that struck Graboys. Her mind is still intact. He is suffering from creeping dementia.
Graboys is painfully honest in this book. He talks about how he tried for months to continue his work, battling through exhaustion and mental lapses, until he was forced to admit he could not carry on. Being a doctor defined him -- and now it is gone.
He also discusses his attempts to preserve a form of physical intimacy with his wife and the pain of watching a virile, physically fit body decay along with his sexuality.
Graboys also frankly speaks about his marriage. He was already experiencing early symptoms of the disease when he married his wife Vicki -- but he was in a state of deep denial. She thought she was marrying a capable, virile man. Instead, she got an invalid who needs virtual around-the-clock care. This "original sin" placed a tremendous burden on the marriage.
The most significant service this book performs is to restore the dignity of a man who has lost so much. Graboys teaches us that a person should not be defined by his sickness. His determination to fight every step of the way against his inevitable decline is inspiring.
The weakest part of the book are the segments contributed by the author's children, step-children and in-laws. They are repetitive and seemed designed to pad out the book. They weaken the overall message by diluting the force of the author's own words.
This is one of the books I would most likely by-pass on my visit to the bookstores. Since none of my family members neither my friends suffer to this terrible disease I did not feel compelled to educate myself on this subject. However, I am forever in he debt to my lovely niece, Barborka, for presenting it to me as a Christmas gift. My first thought was; do not put this book on your pile of "to read in the future", because you may never find a suitable time to read it. So I picked it up right away and I am glad I did so. In his book Tom Graboys offers an increadibly personal and truly informative account of one's dealing with stages of Parkinson's disease, Lewy disease and Dimentia. He offers it not only from the point of view of a person suffering it but also from the point of view of a physician, a neurospecialist who understands it. I find it really helpful that he also does touch the other aspects of the aftermath of his diagnose and that is the effect of it on his personal carier as well as on his new marriage. Especialy the marriage part was well covered.I am grateful to Dr. Graboys for his openess and honesty with which he describe his perception and feelings as they unroll on this new journey in his life, his new marriage and the diagnose of the Parkinson disease, which both hapened to come into his life simulteniously. In this day society, where on an average marriage has statisticaly 50/50 chances to survive, a posibility of the second marriage is fairly high. Dealing with the emotional, spiritual and physical issues of your normal day-to-day life can be quite overhelming even if you have a person who shares every day of your life for a decades by your side. Dr. Graboys's book chalenges one to view life chalenges in a perspective of a brand new relationship where expectations of the glamor of the life together with a new partner are fairly high. Well written book, I would suggest it to everyone and anyone who will feel "compelled."
Dr. Graboys was a happily married, renowned cardiologist who also won a Nobel Prize. Then his wife died of cancer, and he was diagnosed with Parkinson's Disease AND Lewy Body Dementia shortly after remarrying, forcing his retirement from medicine.
This is a different sort of memoir in that it isn't really a linear biography of what happened when or why. Rather, the author chooses to take different aspects of his diseases and examine his personal experiences for the reader in each chapter. So in one part he tells what having Parkinson's is like, then does an excellent job of illustrating the separate symptoms of Lewy Body dementia. He tells of his denial both before and after diagnosis, how his own practice of medicine has shaped his doctor choices now, his therapy sessions, and how he stays (re)married through it all. He lets all the warts show, and he even has a section where his kids and stepkids tell what the experience is like from their vantage point.
Because of the LBD, the author has a coauthor for the book, who does an introduction and wisely stays mostly out of the story so that the reader feels there is a singular voice in the telling. You can also see how who Dr. Graboys is as a person shapes his experience with the disease, emphasizing that everyone's journey is different. These diseases suck, and there isn't much overt inspiration here (beyond the fact that he has them and he still managed to write a book) but it's a real story of a real person who goes on living in spite of it all.
For individuals and families suffering from serious, chronic, progressive disease, this book offers empathy, some useful tips and information, and a bit of hope.
The author, a renowned Boston cardiologist once led a seemingly charmed life. But he has had to retire from medical practice because he has Parkinson's disease and Lewy body dementia, a progressive, degenerative disease similar, in some respects, to Alzheimer's. With the help of a writing partner who put his often incoherent thoughts in readable order, Graboys recounts his experiences as the disease has taken hold of his mind, his body, and his life. The courage and determination this project must have taken is unimaginable.
The book could use a great deal of editing. The writing is pedestrian and the text contains many redundancies. In fact, it could more effectively have been shaped into a long essay.
But for those, like my husband and me, who must deal with this illness or others like it, this book is a godsend. I highly recommend it to those who find themselves in Graboys's situation and to family and friends seeking a glimpse of a loved one's struggle.
The author, a renowned Boston cardiologist once led a seemingly charmed life. But he has had to retire from medical practice because he has Parkinson's disease and Lewy body dementia, a progressive, degenerative disease similar, in some respects, to Alzheimer's. With the help of a writing partner who put his often incoherent thoughts in readable order, Graboys recounts his experiences as the disease has taken hold of his mind, his body, and his life. The courage and determination this project must have taken is unimaginable.
The book could use a great deal of editing. The writing is pedestrian and the text contains many redundancies. In fact, it could more effectively have been shaped into a long essay.
The account of how it feels to have a severe, debilitating, progressive disease, written while it is happening is insightful and enlightening. It is not an easy read because of the diagnosis of Parkinson's with dementia, but describes the symptoms and resulting problems in a very personal (as well as clinical) way. I am finding it we'll worth reading to help in understanding the emotional turmoil of chronic devastating disease, as well as the realities of ADL. But the book needed better editing as the author deals with patient-doctor relationships and social relationship, and becomes rather self indulgent and I thought tedious to read.