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 Don't be condescending, Honey 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Don't be condescending, Honey
There is a specific place on the forum where people with LBD can get support from one another. Does that not happen anymore? I would think it would be a fantastic place to get some support from one another, as well as the many, many suggestions in this particular discussion.

_________________
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 Sep 25, 2011 8:29 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Don't be condescending, Honey
Lynn…..I am smiling…cracking a few teeth and biting my tongue….thanks…..

it is typical to talk about patients like they aren't in the room….

I am in the room…you can talk to me…

I do use the back room….there are two of us active…struggling…we depend on you to stay sane...

imagine if there were only two on the caregivers side and everyone else was in the back room….and they had all the answers….

I do appreciate the back room…..

but I need the front room….I know one day I won't be able to post here

_________________
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


Sun Sep 25, 2011 8:58 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Don't be condescending, Honey
I was talking to anyone and everyone who is reading the posts. Since CGs cannot get into the discussion area of the people who have been dx'd with LBD, there is no way for me to know if people are there supporting one another.

_________________
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 Sep 25, 2011 9:10 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Don't be condescending, Honey
my wife and I are talking more…

there is progress in communication…

this thread has been helpful in many ways….

thanks….


Jeanne….I am taking every script given to me by Dr. Boeve…and others...

I am not refusing to take anything that has been prescribed for me….

I did state that I am resistant in circumstances that you are not totally in knowledge of….give me that….

I give you that I am sure that I am not fully aware of my problems….I do have them….

Kate….yes…I need more local medical support…..it is overwhelming….

Control….yes an illusion…

I am more into faith and confidence…
I retain the faith….not so much anymore in the confidence…

I know I am losing…

I have faith that I will honest to myself….hopefully when the hard decisions are necesary that honesty is still reality….

_________________
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


Sun Sep 25, 2011 9:16 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Don't be condescending, Honey
The Serenity Prayer applies here, too. Doesn't it?

"God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference."

I think its hard for anyone to accept that there is something they can't change, but even more so for someone who has had "control" over so much for so long. This is not something we are taught in our childhood. We are taught that we can do anything, overcome anything. Reality is an ugly awakening.

I have a lot of respect for people who have gained the grace to accept a difficult situation and make what they can of it. Craig, I have a lot of respect for you.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Sep 27, 2011 1:47 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Don't be condescending, Honey
Coy has this version on a t-shrit. Craig may find it applicable, too.

God grant me the senility to forget the people I never liked anyway,
the good fortune to run into the ones I do…
…and the eyesight to tell the difference.

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


Tue Sep 27, 2011 2:15 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: Don't be condescending, Honey
Thanks Jeanne, love the t-shirt saying!! :lol:
Ellen

_________________
Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Tue Sep 27, 2011 3:26 pm
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