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 "Treasures in the Darkness" -- early stage LBD 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: "Treasures in the Darkness" -- early stage LBD
Jeanne, thank you so much for recommending my book to that new caregiver and sharing it with Dr. Boeve! (Please tell me how to pronounce his name.) I do hope more LBD specialists will find out about it for the early stage folks to give them a resource that alleviates some stress, encourages pro-activity, and helps them focus on practical solutions they can control as they find their feet in Lewy world.

I want to get that other book you recommended as well. Love that title. As far as I am concerned the more resources that are out there for LBD folks, the better!

As for the lady's comment about the forum being too overwhelming for her, I agree as an early stage caregiver. Almost all of us early stage LBD caregivers really do need a space on this forum to share our concerns and help support one another without the involvement of later stage concerns that does create so very much stress. Craig, I know what you mean from the caregiver perspective...I cannot imagine how it must feel from a patient perspective.

Let's keep asking those in charge to please, please consider our needs as early stage folks. There will be more and more of us over time. Keeping the stress as low as possible at every stage of LBD is a key to better caregiving and better LBD management, so it is hard for me to understand why this is not a priority.

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]


Thu May 17, 2012 10:00 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
Pat, I've thought about the issue of early-stage caregivers and how best to serve us, to come up with a recommendation to the Powers That Be. I haven't quite figured it out yet.

For one thing, what is an "early stage" symptom? Incontinence is not typical of early stage (as far as I know) but it is not out of the question. Swallowing problems may come early or late. I think that is true of most symptoms. Early stagers probably have fewer symptoms and/or milder symptoms, but they aren't limited to a particular set of symptoms. To discuss the full range of possible symptoms, aren't we back at the main forum?

I've learned so much from caregivers who have been at this longer than I have that I'd hate to limit my contact with just other early-stagers, even though the beginning here was tough for me.

I just can't think of how to separate it out, but I do agree I wish there were a better way to address the particular concerns and needs of caregivers with loved ones in early stage.

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


Thu May 17, 2012 10:33 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: "Treasures in the Darkness" -- early stage LBD
Jeanne, I am hoping for a section like this one, "Practical Caregiving Tips", that says, "For Those in the Early Stage" or something like that.

Then if you were an early stage caregiver, you could come to the forum and go to only that section if you did not want to deal with later stage topics. That would give everyone a chance to limit their seeking out answers and sharing if they did not want to see or discuss the harder topics that just are not in their lives yet.
There would still be the freedom to choose any of the other sections to browse or share in, but at least you could limit to some degree the exposure to topics that are bound to create stress for the newly diagnosed.

I know that I ran from the forum more than once after reading some posts/threads, because I was not ready to entertain and have my thoughts go, and possibly dwell, on those comments or topics. The feelings and fears were just way too raw and my skin was way too thin to handle it. I yearned to connect with others who had found ways to adjust to the diagnosis, for practical things I could do in my house to make it better for John, for ways to deal with relationships that were straining under the pressure of this new monster in our lives.

The early stage is a time for restoration of hope, joy, maximizing the good moments together, learning the issues of LBD (but not necessarily the dirty details of possible future events), learning how to be proactive in all areas of LBD caregiving, learning how to manage stress and deepen communication with everybody in your journey who is touched by LBD. When you begin to dwell too much on what may happen in the future, your energy to accomplish these important things get drained.

Many will come to a point of wanting and needing to know more details, but the option to have some control over when that happens should be in the hands of the caregiver. Creating a better tool on this forum to assist in that process is a mission I would love to see the Powers that Be accomplish.

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]


Thu May 17, 2012 11:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3327
Location: Vermont
Post Re: "Treasures in the Darkness" -- early stage LBD
I'm not an early-stage CG, and never was really, as my dad leapt from my just finding out he had a dx of Parkinson's to a couple of weeks later being totally and profoundly disabled lying in a hospital bed. So, I can only try to imagine what early stage CGing involves.

However, isn't there a lot of opportunity already on this forum to post and read only what we want? Caregivers have lots of topic areas in which to post, and perhaps when an "early stage CG" has a comment or question, they can simply write a new topic in one of those areas that is titled appropriately, like "Early Stage IdeasQuestions on such and such". That way it is obvious what the posting is about so everyone can choose to read what they want.

There is also an area for people who have unfortunately been dx'd with LBD to post, where the rest of us are not allowed in. So, other than CGs being not allowed to even read, let alone post, in that area, isn't there ample opportunity for early stage CGs to only post and read where they want to on the forum? Am I missing something? 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.


Fri May 18, 2012 7:43 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: "Treasures in the Darkness" -- early stage LBD
I agree, Lynn, when my mother was early stage, I didn't have any problems finding what was most relevant to her on the forum.

If the forum creates an early stage section, then what next, a late stage section? Who gets to decide what goes where? Seems like there are already plenty of sections for CGs to stay in areas of interest. If an early stage CG happens to get into an area about later stages and doesn't want to read it, it's pretty easy just to leave that area.

Julianne


Fri May 18, 2012 8:46 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: "Treasures in the Darkness" -- early stage LBD
And Lewy is such a 'roller coaster' that our LOs can slip from one stage to another overnight--and back again!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri May 18, 2012 9:02 am
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Joined: Wed Apr 11, 2012 9:32 pm
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Post Re: "Treasures in the Darkness" -- early stage LBD
Pat...like several others I read your book in one sitting, and although my husband is not "early" anymore, I did really connect to the chapters on keeping yourself healthy, and connecting to friends, and finding out who your friends are. Because it can really become a lonely journey for the CG. I also agree with some others in this thread about who is truly early stage. I had a long time to adjust to the Parkinsons, and we kind of blindly went on ... maybe even pretending that we wouldn't be one of the 30% of PD patients who develop PDD with a lewy variant. When it hit, it hit with a bang and has been going fast, now with fewer ups than downs. Yet he can still walk 1/2 to one mile a day, and although misses his aim alot....can make it to the bathroom. It is the cognitive issues, the hallucinations, the dilusions that are bad. So it is hard to tell what stage on what day. Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Fri May 18, 2012 3:17 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
I started this thread. I know that doesn't mean I own it. In public forums the threads take on a life of their own. But I would like to suggest we leave this thread for the discussion of Treasures in the Darkness and start another one to discuss ways the LBDA discussion forums could be made more useful to caregivers of persons in the early stage, if some wants to discuss that. I just think that keeping the topics separate would add to clarity.

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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


Sat May 19, 2012 11:12 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3327
Location: Vermont
Post Re: "Treasures in the Darkness" -- early stage LBD
Great idea Jeanne! They DO take on a life of their own sometimes, so taking an off-topic discussion elsewhere seems to always be a good idea, IMHO. I hope you have a good day. Lynn

_________________
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.


Sun May 20, 2012 4:02 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: "Treasures in the Darkness" -- early stage LBD
I agree.
Good points made by all, though, and continued discussion would be a good thing.

_________________
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]


Sun May 20, 2012 6:24 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: "Treasures in the Darkness" -- early stage LBD
Jeanne, how do you pronouce Dr. Boeve's name phonetically? So glad he has seen the book. Thanks again for sharing it with him and the lady in the lobby!
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]


Sun May 20, 2012 6:27 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: "Treasures in the Darkness" -- early stage LBD
boe -vay accent second syllable

_________________
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 May 20, 2012 6:42 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: "Treasures in the Darkness" -- early stage LBD
Thank you. Mystery resolved! :lol:

_________________
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]


Sun May 20, 2012 7:54 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: "Treasures in the Darkness" -- early stage LBD
Helen Whitworth, coauthor with her husband Jim of the best known book on LBD, just posted a review of Treasures in the Darkness on Amazon in the past few days. Jim Whitworth is one of the co-founders of the LBDA. They have a great website of resources for LBD at this address--- http://www.LBDtools.com Here is the review:

"5.0 out of 5 stars A must-have for every LBD family, May 24, 2012
By Helen Whitworth - See all my reviews
This review is from: Treasures in the Darkness: Extending the Early Stage of Lewy Body Dementia, Alzheimer's, and Parkinson's Disease (Paperback)
My husband and I read this book while traveling...I read, he drove. The large print and short chapters were perfect for this. As a retired nurse, I loved the part about home renovation--what a wonderful bathroom! We found the chapters on communication valuable--especially the idea that improvement is circular--that even if only one makes an effort to change, it will still be effective. As our loved ones lose their ability to learn new skills, this becomes very important to remember! And we both liked the author's focus on decreasing stress. Such an important aspect of care and so often ignored! This was a wonderful story of love and readjustment. But the back pages are where the real value is: So many ideas, brought out in the story, highlighted here in clear lists of what a family needs to do as early as possible after receiving an LBD diagnosis. This book goes into our LBD library and we recommend it as required reading to all new LBD families."

_________________
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 29, 2012 6:29 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 188
Location: Portland, Or
Post Re: "Treasures in the Darkness" -- early stage LBD
I just finished Pat's book yesterday ( while I was waiting at the denturist for 2 1/2 hours with Mom!), and thoroughly enjoyed it.
I ditto everything that Helen said.
Congrats, Pat, you did a wonderful job.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Wed May 30, 2012 2:44 pm
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