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 Newbie Introduction 
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 44
Location: Pennsylvania
Post Newbie Introduction
Hello. I am a 55 year old registered nurse with an 82 year old mother recently diagnosed with probable LBD. I consider myself pretty knowledgeable in medical matters, but must admit this LBD is a type of dementia of which I was not aware. my dad is 84 and in great health. He and I have been on this roller coaster ride for at least 5 years now. Onset was likely more like 7 to 8 years ago in hindsight. Having cared for many Alzheimers cases over the years, I knew mom was not following that typical course. My dad and I would say it over and over again to her physicians, with examples of why we felt that way, to no avail. After several years of executive functioning difficulty, word finding problems, labile moods and sleep issues, my mom started to have motor issues of shuffling gait and visual spatial issues. her psychiatrist ordered Cogentin to help with the shuffling gait which she thought was a side effect of some medications. Within 72 hours of beginning the Cogentin Mom was in a delirium and hospitalized. In my reading at that time, I became aware of LBD. I questioned the possibility of this diagnosis and was disregarded. After the hospitalization and weeks of rehab, mom returned home. I again questioned the psychiatrist about LBD and her dismissive response, was "Your mom doesn't have Parkinsonism." On we went trying to treat her worsening anxiety, psychotic behaviors, extreme sleep issues (36 hours in a row with no sleep.....pacing, agitated and apparently hallucinations and delusions.) Situation became unbearable again last month and another hospitalization. After telling my story again....what do you know....a doc walks in and asks if I've ever heard of LBD?????!!!! Medications were adjusted and thank-heavens for seroquel. I have not seen my Mom with this level of peace in years. She is now in a SNF and the chaos has settled down. This site and this forum has been INVALUABLE! I am scared for the days to come, but feel there is a lifeline with this community. My parents have been married for 62 years. This horrible disease is taking an extreme toll on my dad . Thanks for being here everyone.

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Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Sat Dec 07, 2013 4:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Newbie Introduction
Welcome to the club that none of us ever wanted to be in, and most of us had never heard of! Good for you for pushing for a more accurate dx and thank goodness you finally found a dr. who knew of LBD and was able to help with more appropriate meds. My dad was on Seroquel and it's hard to know how much it was working, but I think it at least took the edge off his incredible anxiety and aggressive actions from frustration.
When you have specific questions or need help on specific topics, you'll get more responses under the categories that most appropriately relate to whatever it is you need. Come back often, 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.


Sat Dec 07, 2013 6:03 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie Introduction
Welcome! So glad you found us! I am also an RN and had never heard of LBD when my husband was diagnosed in 2005.

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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.


Sun Dec 08, 2013 2:25 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 44
Location: Pennsylvania
Post Re: Newbie Introduction
thank-you Lynn and Pat. I have read many of both of your posts with great enlightenment.

_________________
Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Sun Dec 08, 2013 4:05 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 743
Location: LA
Post Re: Newbie Introduction
I also found myself with the plight of finding a clinical diagnosis for my husband, Mr Bobby. Never did. However, after being dismissed by several "Specialists" our Dr who was also a long time friend, put Mr Bobby under the care of a Geriatric Psychiatrist and between the two of them they treated him as if he had Lewy Body. They listened to me! It brought a certain amount of peace to our home. When this same Family Doctor received the Post Mortem report his comment to me was, "No wonder we could never diagnose his illness". I'm sure my efforts must have helped future patients in some small way.

And, YES, I first found it on this Forum when I came looking for "Dementia". That was in 2007. Mr Bobby passed away two years later after having shown symptoms for at least twelve years.

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Sun Dec 08, 2013 4:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Newbie Introduction
I hope that the experience and knowledge we've gleaned from having traveled this LBD path with our LOs will help others by making the road a little smoother, helping CGs save some time and frustration, and giving support as you travel this rough road. Have a good night 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.


Sun Dec 08, 2013 11:10 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 273
Post Re: Newbie Introduction
My father and I had a very similar start with my mother. It was a long way down the road, with lots of hospitalizations and all kinds of incidents before a geriatric psychiatrist suggested LBD. We'd never heard of it but I googled and voila - found this site - and lots of what I read on here hit home and I knew that was what my mom had (at least one of the things she had.) Welcome to the forum! :)

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon Dec 09, 2013 2:10 am
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