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 "Treasures in the Darkness" -- early stage LBD 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post "Treasures in the Darkness" -- early stage LBD
I have just read Pat Snyder's book, whose subtitle is Extending the Early Stage of Lewy Body Dementia, Alzheimer's, and Parkinson's Disease.

I am very impressed. In fact, when it came I intended to read just a few pages to get a sense of the style and content and then set it aside for later. I ended up reading the short book in one sitting!

It is a personal story of Pat and her husband John, in the very earliest stages of LBD -- earlier than many people are diagnosed. John is experiencing mild cognitive impairment, rather than full blown dementia, at least at the beginning of this journey. There are no descriptions in here of how to help someone transfer from a bed to a wheelchair. No practical tips for helping someone who has forgotten how to eat. But while dwelling in the here-and-now of MCI, there is also a focus on setting a foundation for the rest of the journey. Not only in discussing considerations about where to live but in dealing with communication issues with family members and establishing a support network.

Perhaps its biggest value is giving caregivers of early-stage LBD a colleague, a companion, perhaps even a role model, for this neglected stage of the journey. It is assurance for us that we are not alone.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 22, 2012 5:17 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: "Treasures in the Darkness" -- early stage LBD
Is this "Pat" from the LBDA Forum?


Sun Apr 22, 2012 6:04 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "Treasures in the Darkness" -- early stage LBD
Yes.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 22, 2012 9:14 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: "Treasures in the Darkness" -- early stage LBD
convinced me.. :)

i ordered tonight for my kindle,,

thanks, jeanne

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Apr 22, 2012 11:08 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "Treasures in the Darkness" -- early stage LBD
By the way, Dr. Daniel Kaufer, who is on the scientific advisory board of LBDA, wrote one of the Forewords to this book.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Apr 25, 2012 12:20 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: "Treasures in the Darkness" -- early stage LBD
Jeanne, thank you for your comments about my book.
I have been away from the forum for quite a while working on getting it out.
I just got back tonight from delivering books to Dr. Kaufer to share with his early stage patients. He referred to it this afternoon as a "survival manual" for early stage LBD caregivers, I guess because of the Tips section.

By the way, I understand that approximately 25% of those diagnosed with various dementias receive that diagnosis in the early stage. When John was diagnosed in 2007, there was nothing out there for guidance on how to handle the early stage of LBD. Hopefully, this will fill the gap and help some folks. That is the mission and the hope.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue May 01, 2012 12:20 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: "Treasures in the Darkness" -- early stage LBD
Congratulations Pat!


Tue May 01, 2012 12:23 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3334
Location: Vermont
Post Re: "Treasures in the Darkness" -- early stage LBD
That's great Pat! Hope you sell lots of copies to CGs who will get a lot of help from your book. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue May 01, 2012 12:01 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: "Treasures in the Darkness" -- early stage LBD
Thank you.
LBDA will receive a donation for every book sold. If any of you know of a caregiver who might benefit from this book and cannot afford it, please private message me with their name and address and I will see that they receive a copy.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue May 01, 2012 7:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: "Treasures in the Darkness" -- early stage LBD
What a nice offer, Pat. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed May 02, 2012 9:18 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: "Treasures in the Darkness" -- early stage LBD
that is really sweet, pat...

i enjoyed the book a lot and only wished i had found it 4 or 5 years ago.. but even still, i got a lot out it.. especially some of your thoughts.. many identical to things that have crossed my mind... some times it answered some lingering questions, others times just made me feel like my thoughts were normal.. as we all struggle to find a path, that works...

thank you!!
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed May 02, 2012 10:44 am
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Joined: Sun Mar 11, 2012 7:43 pm
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Post Re: "Treasures in the Darkness" -- early stage LBD
Just ordered it. Thanks Pat!

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Kim-wife of Brent, 51 yrs old, newly diagnosed


Wed May 02, 2012 11:18 am
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Joined: Sat Sep 03, 2011 2:36 pm
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Post Re: "Treasures in the Darkness" -- early stage LBD
I ordered a copy of this book also, and will be bringing the copy in for our support group library. It is made up of very short chapters that capture various incidents in Pat's life as a caregiver and her emotions and thoughts as she deals with the diagnosis and with family dynamics as she struggles to come up with the best ways to handle the situation. The last section off the book has various tips for different aspects of dealing with the disease and with care giving.

As I read the book there were moments when I thought Pat shared a little more than I wanted to know about family conflicts, but when I finished and reflected about this I realized that it was probably going to be very beneficial for a lot of people to read. When Lewy invades your life it is going to bring upset and struggle and not all decisions or reactions are going to be what you wish they were when you look back at them. Sometimes you get blindsided - sometimes you make assumptions - sometimes you feel helpless and sometimes you try too hard. You just have to keep going and work with what is facing you now.

I ended up admiring Pat very much for talking about things that went wrong. The self-examination and unfolding of how she learned to deal with various family members and situations was really involving. We have talked about this some in support group - how different family members and friends react and deal with the new reality, and how to come to an understanding with this rather than having it become another burden.

I think the most important point Pat made in this book is to not accept the "you are doomed" approach that some physicians have. The care and attention given to patients in the early stages makes a huge difference in quality of life!! Get a second opinion and find a doctor you can work with. There may not be a cure yet - but we can appreciate the time we are given and the joy of being alive even when we only get glimpses of our loved one peeking through the Lewy as time goes by.

This book is going to be comfort to many people I think - they will realize that they are not alone in their struggles and that it is worth it. I hope Pat keeps writing and puts out revised editions as time goes by. I would like to hear more about her husband and what he experiences. I often wished I could get inside my father's mind and get an idea of what his reality was like.


Sun May 13, 2012 2:54 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "Treasures in the Darkness" -- early stage LBD
We had our annual visit at Mayo, Rochester. Chatting with another wife waiting while her husband was being tested I learned that this is a fairly new diagnosis for them. I suggested caregiver support groups and these forums. She had been here but she said reading so much about later stages was overwhelming and she just wasn't ready for that yet. I understand that feeling perfectly! I recommended Pat's book as something she would probably relate to without added stress about the future. (There will be time for that as the future approaches.) I also recommended Boss's Loving Someone Who Has Dementia.

I also showed both of those books to Dr. Boeve and told him why I liked them. He was impressed that Dr. Kaufer, whom he knows well, wrote the foreword to Pat's book. He thanked me for showing them to him, saying he learns about these things by word of mouth.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed May 16, 2012 11:35 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: "Treasures in the Darkness" -- early stage LBD
She had been here but she said reading so much about later stages was overwhelming and she just wasn't ready for that yet. I understand that feeling perfectly!

I agree, Jeanne. That is why I can't post here anymore, it is a shame.
Please see post in off topic area, as I don't want to offend those who want to keep things this way.

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu May 17, 2012 4:16 pm
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