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 Father who I suspect may have LBD 
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Joined: Wed Aug 01, 2012 9:23 pm
Posts: 2
Post Father who I suspect may have LBD
My father has had mobility issues for the past 3-4 years or so. Shuffling walk lots of falls etc. Had a bad uti earlier this year, hospitalised for several weeks, whilst there had some very strange hallucinations. Had a mini stroke in November last year loosing vision in left eye, now says he has someone sitting on his shoulder. He has good and bad days and has recently been prescribed Aricept , I would appreciate anyone's comments please, as they don't seem to know what the issue is, putting it down to 'old age'. My mother, who,is 82 is,his full time carer and this is putting a lot of strain on her, she is type 2 diabetic.


Thu Aug 02, 2012 2:04 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Father who I suspect may have LBD
Jackie,

Sorry to hear of your dad's issues. I would suggest that you find him a neurologist who is knowledgeable about dementias, especially LBD, and have him evaluated. I can't imagine hallucinations being considered just "old age," let alone the shuffling walk. As you may have read on this forum, it's amazing how many doctors are unfamiliar with dementias and especially LBD. Hope you can get him to a knowledgeable doctor.

Good luck,
Julianne


Thu Aug 02, 2012 8:45 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Father who I suspect may have LBD
I totally agree with Julianne! Finding a good neurologist is essential, especially early on, because there are effective treatments available if they are properly administered. If there is a joint neurology practice in your area, find out which practitioner is most experienced with 'movement disorders' like Parkinson's because they often have the most up-to-date knowledge about LBD. Far too many physicians want to call all dementias 'Alzheimer's' or, as you have found, just chalk it up to 'old age'. Much can be done! Don't give up!

Oh, and welcome to the forum! God bless you for caring for your parents in this difficult time!

_________________
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 Aug 02, 2012 9:52 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Father who I suspect may have LBD
Hi Jackie,
I totally agree with previous replies a DX will go a long way in treating and understanding the needs of a loved one. If you have a teaching medical universities that maybe a starting point. Good Luck ! Welcome !

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Irene Selak


Thu Aug 02, 2012 4:28 pm
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Joined: Wed Aug 01, 2012 9:23 pm
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Post Re: Father who I suspect may have LBD
I think the problem is that I live in the UK and I don't think that we are quite as advanced or don't know enough about various dementias as you do I The States.
Thanks for,your comments - appreciated


Thu Aug 02, 2012 5:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Father who I suspect may have LBD
Jackie, some of the best research articles I've read on LBD and PDD have come from the UK. As Irene suggested, maybe you could contact some of the leading medical teaching universities to find out who might be in your general area. Obviously, you don't want to have to travel too far but my husband only sees his neurologist every six months. I can access him by phone or fax in between visits. As long as the primary care physician is aware that the neuro must have the last word on medication decisions, he/she can take care of the day-to-day issues.

_________________
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 Aug 02, 2012 5:45 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Father who I suspect may have LBD
Jackie,
Here is a link for the Lewy Body Society in the UK, perhaps they could help you locate a Physician through them !


http://www.lewybody.org/

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Irene Selak


Last edited by irene selak on Thu Aug 02, 2012 7:33 pm, edited 1 time in total.



Thu Aug 02, 2012 7:32 pm
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Father who I suspect may have LBD
My best care came from contacting Mayo Clinic via an email. Don't worry, it's work but use every option. Hugs.


Thu Aug 02, 2012 9:01 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Father who I suspect may have LBD
Welcome Jackie and sorry you need to be here. You've been given good advice by others so check out all the links and contacts till you get some satisfaction. All the best, 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 Aug 03, 2012 9:38 pm
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