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 Life expectancy and symptoms 
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Joined: Mon Oct 15, 2012 8:49 pm
Posts: 2
Post Life expectancy and symptoms
Is there a list of symptoms that indicate stage and life expectancy of LBD? My husband was diagnosed 7 years ago and until the past year has had a fairly active, alert life. I think it is because, by luck of the draw, we got to a neurologist who was a researcher in LBD and it was treated as such. When someone asks how he is, I say, previously it was a marathon, now it is a sprint to the finish. All hospice will say is it is end-stage LBD. I would like to know a little mores specifically where we are. I am currently caring for him at home with the help of paid caregivers and hospice and hope to continue that but do not know how much worse it will get. My MIL had LBD (undiagnosed at the time-28 years ago) and was gone in 8 months. At the time the neurologist diagnosed it as Parkinson's and even said to me near the end of her life, "There is something going on here besides Parkinson's, but I don't know what." Is there a Magic 8 Ball for LBD?


Thu Jan 09, 2014 1:58 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Life expectancy and symptoms
Victoria - if your husband is receiving hospice services, that should give you some idea on life expectancy. Acceptance into hospice means that the person is not likely to live beyond 6 months. Of course that can be very different from one person to another - some people on this forum have had LOs who have been on and off hospice for a few years. For some of us, our LO did not make it 6 months. DId the hospice folks provide you with their pamphlet that talks about behaviors/symptoms and stages? If not, I'd ask the hospice nurse for one of these and I'd discuss what he/she thinks about your LO and longevity.

Some of the most telling symptoms of a person being at the end of end of life are: sleeping almost all the time, greatly reducing or stopping eating and drinking.

If your LO is on a plateau or somewhat better at the end of 6 mo. many hospice organizations will stop services until the next decline, in which case you then have the opportunity to have your LO assessed again for hospice services.

Big hugs, hang in there. 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 09, 2014 2:14 pm
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