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 New Member from Australia 
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Joined: Mon Oct 10, 2011 11:22 am
Posts: 2
Location: Australia
Post New Member from Australia
Hi everyone, I am new to this forum, I actually joined last October but has taken me awhile to participate. My 86 year old mum was diagnosed with LBD in July last year. I am an only child, and a mother to 3 teenagers. Sadly after mum was diagnosed (and a 9 week hospital stay) she was unable to return to independent living & we sadly had to place her in a nursing home. Prior to my mum being diagnosed I had never even heard of LBD.. What a rollercoaster ride the last 6 months has been for us all. My mum had been complaining of hearing music constantly, so we took her to her GP who prescribed Serenace, after taking these meds for a week and no improvement we took her back to her doctor, who then doubled the dose of Serenace!!. This is when things completely fell apart for her. Within the space of a week, this once independent, fully active women was completely bed ridden, unable to walk without assistance or even get out of bed. Her auditory hallucinations increased from just music playing all day to threatening voices that wouldnt stop. We ended up calling an ambulance after her GP was too "busy" to fit her in for an appointment after things became unbearable. She spent 9 weeks in hospital and was there diagnosed with LBD.
Mum is now living in a nursing home and is on the Exelon Patch and also Serequel, these two drugs have somewhat helped mums hallucinations but she is still declining slowly. Her short term memory is almost gone, and as no two days are ever the same, you just have to roll with what the day brings. Most days she is confused and forgetful but we are trying to make the most of the "good days" as we know these wont last forever.

So that is our story in a nutshell, sorry to have rambled on abit. LBD is such a horrible disease, & I have found that even with caregivers and medical personnel its still not widely known about. I have lost track of how many times I have had to explain to caregivers & the medical staff at the nursing home exactly what LBD is, most just say "yeah its the same as Alzheimer's!! :cry:

This looks like a friendly supportive place to be, and I look forward to getting to know you.
Its nice to have a place to come to like this where people really do "understand"

Hugs
Robyn


Thu Jan 05, 2012 6:20 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New Member from Australia
Welcome to the forum, Robyn! So sorry you have to be here. We care! Hugs and prayers.

_________________
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.


Thu Jan 05, 2012 10:14 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: New Member from Australia
Welcome to the forums Robyn. I too am amazed at how many medical personnel we see that have never heard of this disease.
Ellen

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


Thu Jan 05, 2012 11:00 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New Member from Australia
Hi Robyn,

Sorry to hear about your mother. It seems that Serenace is the Australian name for Haldol. What a dangerous medication! Did your mother have any parkinsonism symptoms before Serenace was given?

LBD common co-occurs with Alzheimer's, so it is likely your dear mother has both.

Robin


Thu Jan 05, 2012 2:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
Post Re: New Member from Australia
Welcome Robyn - yes, so many of us have had similar experiences. This is a great place for support and information so I hope you'll stop back often. 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.


Thu Jan 05, 2012 2:54 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: New Member from Australia
welcome robyn.. hopefully in reading the posts on here, you will find some answers, that will help with your questions, about what is going on with your mum... if not, don't hesitate to ask.. lots of wonderful folks on here, that selflessly share their knowledge....
wishing you and your family well...

_________________
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..


Fri Jan 06, 2012 12:44 am
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Joined: Fri Oct 28, 2011 1:31 pm
Posts: 29
Post Re: New Member from Australia
Hi Robyn,

Welcome! I am new as well, and my story sounds so close to yours. I am an only child and have two teenagers (13 and 16). Everyone here has been really great at answering questions and giving support. I hope you find that it is the same for you. I know it's tough dividing your time between your mother and your children. Hang in there, and know that you are not alone.


Mon Jan 09, 2012 11:25 pm
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Joined: Mon Oct 10, 2011 11:22 am
Posts: 2
Location: Australia
Post Re: New Member from Australia
Thank you for the warm welcome, it really is nice to be where people truly understand what is happening & the rollercoaster ride that we all find ourselves on.
I look forward to getting to know you all, hearing your stories, offering support & no doubt asking a million questions myself. I hope today was a good day!!

Keep smiling

Robyn


Tue Jan 10, 2012 2:45 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
Post Re: New Member from Australia
Robyn - do a search on the topics that are most important to you at the moment and read lots of other postings when you can. There is a ton of info. on here, and sometimes, just knowing that someone else is or has gone through what you and your LO are can be a comfort in itself. 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.


Tue Jan 10, 2012 2:31 pm
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: New Member from Australia
Robyn,
Sorry for the circumstances that bring you here, but glad to welcome you to the community. I don't post as often as many, but I definitely feel the support and caring that forum members offer here. Is your mum on any drugs for dementia symptoms? Aricept really helped stop Mom's slide, I believe. But each person's reactions and symptoms are unique, for sure. Welcome.

_________________
Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Wed Jan 11, 2012 12:55 pm
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