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Voor ik vergeet - mijn leven met jongdementie
Op haar 46ste kreeg Christine Bryden het verpletterende verdict van haar neuroloog : ze leed aan jongdementie. Binnen 5 jaar zou de topwetenschapper en adviseur van de Australische regering voltijds medisch verzorgd moeten worden, langer dan acht jaar had ze niet meer te leven. Haar wereld stortte in.
Intussen zijn we ruim twintig jaar later.
Christine bleek een wonderpatiënte te zijn : haar dementie vorderde veel trager dan de artsen hadden voorspeld. Ze werd de eerste ervaringsdeskundige die kon uitleggen hoe het voelt om je taal, je oriëntatievermogen, je persoonlijkheid... te voelen afbrokkelen, om vaak bang en wanhopig te zijn en je zo verdomd alleen te voelen, maar ook een zinvol leven te kunnen leiden, ondanks de ziekte.
In dit boek vertelt ze haar unieke en inspirerende levensverhaal en deelt ze haar tips & tricks. Voor ik vergeet is een onmisbaar boek voor mensen met dementie, hun geliefden en zorgverleners.
Intussen zijn we ruim twintig jaar later.
Christine bleek een wonderpatiënte te zijn : haar dementie vorderde veel trager dan de artsen hadden voorspeld. Ze werd de eerste ervaringsdeskundige die kon uitleggen hoe het voelt om je taal, je oriëntatievermogen, je persoonlijkheid... te voelen afbrokkelen, om vaak bang en wanhopig te zijn en je zo verdomd alleen te voelen, maar ook een zinvol leven te kunnen leiden, ondanks de ziekte.
In dit boek vertelt ze haar unieke en inspirerende levensverhaal en deelt ze haar tips & tricks. Voor ik vergeet is een onmisbaar boek voor mensen met dementie, hun geliefden en zorgverleners.
254 pages, Hardcover
First published August 15, 2015
12 people are currently reading
174 people want to read
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Displaying 1 - 22 of 22 reviews
August 19, 2017
Heb al veel boeken gelezen rond dementie maar dit is het eerste boek dat eigenlijk helemaal vanuit de persoon zelf komt. Verhaal leest als een trein.
Achteraan het boek geeft Christine veel tips voor het omgaan met personen met dementie
Achteraan het boek geeft Christine veel tips voor het omgaan met personen met dementie
April 15, 2020
This book was amazing. My father also has Alzheimer’s and it resonates with me on such a deep level. This book also has some wonderful resources for anyone who has it or is a carer of someone. Would love to read her other books.
October 26, 2015
Just wonderful. I learned so much. Huge respect, Christine, for you and the incredible work you do. AMAZING.
April 11, 2021
Such an honest and confronting biography - gives great insight into young-onset dementia as well as abusive relationships.
June 7, 2020
3.5 stars, rounded up
Christine’s story is remarkable as someone who was diagnosed with dementia whilst in her 40’s but still capable of touring the world, inspiring other sufferers and carers with her speeches. Like many, I read this book because of an interest in the disease after seeing family members succumb to it. The information provided by Christine was interesting and well written, albeit not new news with regards to the disease itself, other than her amazing case of longevity post diagnosis.
My reason for the 3.5 stars is more personal in that I could not relate to Christine’s life, with her having stayed in a domestic violence situation and also her belief that life is lived for a relationship with God. More than that though, the writing was relatively non emotive given it is a memoir detailing what has been quite a tumultuous life. the fact that it was however written by someone with dementia who is carrying on living a long, successful life is quite exceptional.
Of note is Christine’s summary of what she thought that assisted living should comprise of for patients with dementia. I hope that such wonderful ideas could be implemented, thus changing the final years of life for so many to be so much more positive and happy.
Christine’s story is remarkable as someone who was diagnosed with dementia whilst in her 40’s but still capable of touring the world, inspiring other sufferers and carers with her speeches. Like many, I read this book because of an interest in the disease after seeing family members succumb to it. The information provided by Christine was interesting and well written, albeit not new news with regards to the disease itself, other than her amazing case of longevity post diagnosis.
My reason for the 3.5 stars is more personal in that I could not relate to Christine’s life, with her having stayed in a domestic violence situation and also her belief that life is lived for a relationship with God. More than that though, the writing was relatively non emotive given it is a memoir detailing what has been quite a tumultuous life. the fact that it was however written by someone with dementia who is carrying on living a long, successful life is quite exceptional.
Of note is Christine’s summary of what she thought that assisted living should comprise of for patients with dementia. I hope that such wonderful ideas could be implemented, thus changing the final years of life for so many to be so much more positive and happy.
February 12, 2022
Quite remarkable. A brilliant & brave bio from the author who was first diagnose with dementia, probably Alzheimer's, in the late 90s & has managed to be an advocate for sufferer's of this disease ever since.
I was a bit bored with the early life which seemed to be about a third of the book, but fascinated by everything just prior to & since her diagnosis. Her dementia has been progressing very slowly which is how she has managed to achieve so much. I can understand why she'd be miffed by people doubting her diagnosis - why on earth would anyone say they had it if they didn't? She has also battled with depression & anorexia nervosa.
Of particular help to other dementia sufferers & their carers would be Bryden's insistence of working on what you can do & not ruminating about the things you can't. The chapter entitle A Dark Day with Dementia illuminates that not every day is entirely positive, but "the challenge is to live in a world of hope, alternatives, growth and possibility" p.229. The appendices are very useful & I can only hope that the world is moving towards those ideas about the future of dementia care.
Bryden's website is worth looking at: christinebryden. com. au (remove spaces) & has links to other useful Australian & international sites.
I was a bit bored with the early life which seemed to be about a third of the book, but fascinated by everything just prior to & since her diagnosis. Her dementia has been progressing very slowly which is how she has managed to achieve so much. I can understand why she'd be miffed by people doubting her diagnosis - why on earth would anyone say they had it if they didn't? She has also battled with depression & anorexia nervosa.
Of particular help to other dementia sufferers & their carers would be Bryden's insistence of working on what you can do & not ruminating about the things you can't. The chapter entitle A Dark Day with Dementia illuminates that not every day is entirely positive, but "the challenge is to live in a world of hope, alternatives, growth and possibility" p.229. The appendices are very useful & I can only hope that the world is moving towards those ideas about the future of dementia care.
Bryden's website is worth looking at: christinebryden. com. au (remove spaces) & has links to other useful Australian & international sites.
June 25, 2019
An absolute winner and I read it in one sitting on a rainy day - she is highly educated and lucid and relates the experience of ill health and the effects of family trauma well. I think in her case of dementia the degeneration was lucky to be slow so something like this could be published, it will help a lot of others in similar circumstances. However you don't need to have experienced this illness to get quite a lot out of reading this. Highly recommended read.
June 18, 2020
Christine Bryden is a remarkable woman. She had a mother who played logic games with her as a child, for fun. She developed one of the most efficient human brains in the world during her adult years whilst suffering domestic violence and anorexia. Her story is one of triumph and overcoming adversity, even without considering she was diagnosed with younger-onset dementia at 46. I liked her story of hope and continuing to fight everyday to give your brain the best chance at not-deteriorating.
September 15, 2020
I found this book gripping. Unlike other biographical pieces, this felt so put together and yet really interesting and easy to read. Reading Christine's story helps to bring into focus that anyone from any walk of life can have dementia. I also really enjoyed her writing about how important having a spiritual base in her life was. I would 100% recommend this book. It was a tremendous help in understanding the pain behind having such a debilitating condition would be like.
March 28, 2020
Absolutely loved this book. I’m in awe of this amazing woman. Absolute must read for anyone who has a person with dementia in their life
August 17, 2020
Christine is inspiring in her determination to keep her memories, despite being diagnosed with Alzheimer’s at age 46. 3.5 stars
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December 27, 2024『東大教授、若年性アルツハイマーになる』若井克子著
April 16, 2016
I do like reading the insights from someone who is in the midst of experiencing what they write about. In this case, early onset dementia (of some type - still being worked out). It is written by Christine, with some assistance from others, and therefore is a little detached in tone (I think it probably reflects where her mindset is at), but amazing to read how she has managed, for so long, to continue a very full, and productive, and joyful life, despite the fact that her brain scans show the deterioration. The mindset to work around this is amazing - and indeed, to carve out a whole new career, as an advocate and influencer around better awareness and treatment options, from a high level public sector role, is so impressive.
Some quotes:
'The first few years after my diagnosis were some of the hardest of my life....I stopped trying something if it was difficult. I felt everything was hopeless and that is was not worth trying. I became more and more helpless and far more reliant on my daughters. I felt grief about the steady loss of all the things I would no longer be able to do. Fear of the future - of loss piled upon loss - paralysed my for several years. But ... I began to realise that all this grief had disabled me perhaps more than the actual dementia, so I needed to claw my way back again. It was not before I was able to overcome my sense of hopelessness that I was able to overcome my actual helplessness.'
'As I've said, lots of people who meet me or read my books - or both - find it hard to believe I have dementia. I've mentioned how upsetting this to me, Perhaps I should be flattered, but the truth is I work so very hard to appear normal every day and it feels as though that hard work is for nothing if it just results in people disbelieving me, At one of my talks you might see a woman who seems polished and confident but what you don't see if what it costs me to appear like that - or how fast, articulate and clever my presentations were when I was in the prime of my career, before I had dementia. ... I'm also bothered about this very fixed idea some people seem to have of what someone with dementia should look like and should behave. Dementia is a slow, progressive condition that can take many years to do its damage. There are people who seem 'normal' - especially to those who don't know them very well. There are people who have moments of lucidity, or who are able to converse quite happily as long as the conversation is about certain topics. There are people who seem just a little forgetful or a little tired.'
Dementia is often described as a 'loss of self', implying that the person with dementia at some stages loses what it means to be human. But what self are we talking about? Which one of my various selves on my life's journey - child, wife, mother, grandmother? And is it my cognitive, emotional or spiritual self? At what stage in dementia can you deny my my selfhood? This talk of losing self, of becoming an empty shell, means at diagnosis I faced the awful fear of ceasing to be; not just a physical death, but a gradual emotional and psychological death,m the long goodbye. But I reject this idea, and want to focus on what I can still do. I can live a new life in the slow lane. The challenge is to live in a world of hope, alternatives, growth and possibilities'.
Some quotes:
'The first few years after my diagnosis were some of the hardest of my life....I stopped trying something if it was difficult. I felt everything was hopeless and that is was not worth trying. I became more and more helpless and far more reliant on my daughters. I felt grief about the steady loss of all the things I would no longer be able to do. Fear of the future - of loss piled upon loss - paralysed my for several years. But ... I began to realise that all this grief had disabled me perhaps more than the actual dementia, so I needed to claw my way back again. It was not before I was able to overcome my sense of hopelessness that I was able to overcome my actual helplessness.'
'As I've said, lots of people who meet me or read my books - or both - find it hard to believe I have dementia. I've mentioned how upsetting this to me, Perhaps I should be flattered, but the truth is I work so very hard to appear normal every day and it feels as though that hard work is for nothing if it just results in people disbelieving me, At one of my talks you might see a woman who seems polished and confident but what you don't see if what it costs me to appear like that - or how fast, articulate and clever my presentations were when I was in the prime of my career, before I had dementia. ... I'm also bothered about this very fixed idea some people seem to have of what someone with dementia should look like and should behave. Dementia is a slow, progressive condition that can take many years to do its damage. There are people who seem 'normal' - especially to those who don't know them very well. There are people who have moments of lucidity, or who are able to converse quite happily as long as the conversation is about certain topics. There are people who seem just a little forgetful or a little tired.'
Dementia is often described as a 'loss of self', implying that the person with dementia at some stages loses what it means to be human. But what self are we talking about? Which one of my various selves on my life's journey - child, wife, mother, grandmother? And is it my cognitive, emotional or spiritual self? At what stage in dementia can you deny my my selfhood? This talk of losing self, of becoming an empty shell, means at diagnosis I faced the awful fear of ceasing to be; not just a physical death, but a gradual emotional and psychological death,m the long goodbye. But I reject this idea, and want to focus on what I can still do. I can live a new life in the slow lane. The challenge is to live in a world of hope, alternatives, growth and possibilities'.
December 8, 2015
I applaud any book that raises awareness of mental illness. I felt the subtitle was a bit misleading - 'survived' seems a term you would use to indicate a full recovery. What Christine describes is pre and post her Alzheimers diagnosis. One message is clear in the book - she is one tough lady. With great resilience, she tackled challenge after challenge and became a world-renowned advocate for people with dementia. Was her slow progression of the disease due to her intellectual life, or pushing herself to try harder, or just an atypical form of the disease? We'll never know but her story is inspiring. I'm not sure why I only gave it three stars. I think I felt a bit removed from Christine herself - I guess as a former genius and high level scientist, the writing was precise and factual, but not very emotive.
October 13, 2015
4 Inspirational, Moving stars
I don’t read a lot of non-fictional, real life stories, but when I read the blurb to Before I Forget, I was taken with Christine’s story as dementia is a disease that took the life of my grandmother. I know, it’s not exactly the same, but I saw my grandmother struggle and I always thought it was a disease for older people. How wrong was I?
This was a moving, inspirational real life story of a young woman’s struggle with younger-onset dementia.
Through her story, Christine taught me that you can accomplish anything if you believe in yourself and your worth. That hard work is what life is all about. Never give up.
Thank you to House of Rusher for providing an advanced reading copy.
I don’t read a lot of non-fictional, real life stories, but when I read the blurb to Before I Forget, I was taken with Christine’s story as dementia is a disease that took the life of my grandmother. I know, it’s not exactly the same, but I saw my grandmother struggle and I always thought it was a disease for older people. How wrong was I?
This was a moving, inspirational real life story of a young woman’s struggle with younger-onset dementia.
Through her story, Christine taught me that you can accomplish anything if you believe in yourself and your worth. That hard work is what life is all about. Never give up.
Thank you to House of Rusher for providing an advanced reading copy.
November 23, 2015
Wow, that was a wonderful and powerful read. I love Lisa Genova books and have read them all and I thought this would be an interesting perspective on the subject of Dementia. Christine Bryden certainly did not disappoint and it only made me look to her for inspiration for life. Not only that I feel that I would love to do more to help sufferers of this illness. A great read and one I found myself drawn to and wanting to read at every chance I had
May 1, 2016
For someone who cannot remember what she ate for breakfast, Christine holds the reader's attention as she vividly describes her earlier life, the trauma of diagnosis and her life beyond.
As a medical professional, I have learned so much from Christine and I only hope there are more writings of hers to come.
As a medical professional, I have learned so much from Christine and I only hope there are more writings of hers to come.
June 7, 2017
Before I Forget is an excellent read and a delightful consolidation of Bryden's previous bibliographic accounts of living with dementia and her advocacy work. It brings us up to the present day in her journey, and pulls the parts together well. Thank you for your inspirational writing Christine!
October 20, 2015
Really interesting perspective of early onset dementia. Well written
May 2, 2016
Very informative read with an advice section in back of book.
February 4, 2017
Brilliant book by an amazing lady!
Displaying 1 - 22 of 22 reviews