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 Devastated by LBD 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Devastated by LBD
The very offensive comment may have been removed by an administrator, not necessarily the person who posted it.

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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 Jul 04, 2012 8:41 am
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Devastated by LBD
I don't know what the remark was, but I gain strength from this group and hope you find the same. God Bless.


Wed Jul 04, 2012 8:56 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Devastated by LBD
And BTW, since the offensive post was removed, it looks sort of like Avasmommy is upset with me, so I would like to make it clear that it was not I who wrote the offensive post and I was shocked as well when I read it.
Have a good 4th everyone, 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 Jul 04, 2012 9:58 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Devastated by LBD
Just so we are clear, I removed the post and the offensive post was not posted by Lynn and I would really like to move on, it all old news and keeping the subject active is not good for any of us !

Have a great 4th everyone !

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Irene Selak


Wed Jul 04, 2012 11:24 am
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Joined: Sat May 05, 2012 1:25 pm
Posts: 14
Post Re: Devastated by LBD
Sorry about the sudden decline in your Dad.
I can't help but question drugs.

Hospital doctors put my Dad on Risperdal and Depakote and i thought it was the end for him. Hallucinations were horrible. He went back in time to his life decades ago, and was completely delusional, and totally out of touch with reality. Once released from the hospital, his neurologist put him back on track, but it was a tremendous setback for my Dad because of what the hospital doctors did to him with these anti-seizure/antipsychotic drugs. It was a VERY long recovery from it but he is much better now than then. Not without difficulties, by any means, but no longer lying in bed hallucinating.

LBD meds, as far as i can tell from my experience, are very personalized, and treatment seems to depend on very careful guidelines with meds due to the unusual characteristics of this particular form of dementia. I have come to understand that LBD is a very different animal and great care must be taken w/ meds.

My Dad has a wonderful specialist in CA who is an expert in LBD, and he explained to us what went wrong w/ hospital meds and why certain drugs should not be given to LBD patients. Perhaps yours are needed for your Dad, but that's my story. I wish you luck and hope that resolving the med issue will improve your situation, if it turns out that is the right thing to do in your Dad's case. I am an advocate of seeking second opinions, and that is how I found my Dad's current doctor. I wish you good luck and hope that your Dad's condition improves.

_________________
daughter of father with LBD, age 84
present stage described by neurologist as moderately severe
presently receiving several hours of professional care in home


Thu Jul 05, 2012 2:33 am
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Joined: Sat May 05, 2012 1:25 pm
Posts: 14
Post Re: Devastated by LBD
sorry, I posted before reading through. didn't read far enough in thread to realize the progression of your Dad's disease. my best to you, in the situation you now find yourself and your family in.
sounds as though you and doctors are trying to do right by your dad.

_________________
daughter of father with LBD, age 84
present stage described by neurologist as moderately severe
presently receiving several hours of professional care in home


Thu Jul 05, 2012 2:52 am
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Joined: Wed Aug 06, 2008 2:24 pm
Posts: 40
Post Re: Devastated by LBD
A comment from LBDA -

Thank you to all for sharing your support and concerns on this thread. Understanding medication sensitivities is extremely important in LBD caregiving and we appreciate the feedback that you all have shared. I would like to thank our volunteer moderator, Irene, for bringing this thread to my attention several days ago, so that I could send an email offline to avasmommy.

I would also like to take this moment to remind everyone here that traditional antipsychotic medications like haloperidol can be dangerous in LBD due to severe medication sensitivities, BUT there are situations where it may be necessary to use it for a short time to protect the person with LBD from injuring themselves or others. If medications like this are necessary, the patient must be watched carefully for side effects and switched to a safer medication as soon as possible. Doctors should discuss the risks of medication side effects with the family so that the family can make informed decisions.

Now, a word about the forums. LBDA's discussion forums are designed to be an informative and understanding environment. We understand that there are issues that tend to be emotional ones, and this is a good example. But this thread is taking a turn from its original intent. To ensure that the forums remain a positive environment, I am locking this thread and appreciate your understanding.

Sincerely,
Angela Taylor
Director of Programs
LBDA

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Angela Taylor
Director of Programs
Lewy Body Dementia Association


Thu Jul 05, 2012 10:28 am
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