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 any advice welcome 
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Joined: Thu Jan 21, 2010 11:52 am
Posts: 1
Location: south yorkshire england
Post any advice welcome
hi every one, im so pleased to have found this site as I have felt very alone since my dad was diagnosed in Novemberast year, I had never headr of LBD and still know very little about it, my mum is very concerned too ( obviously ) and wondered if anyone could let me know what to expect and how fast / slow he will get worse. he is seeing small fluffy animals every other night in his bed and is also in the process of being diagnosed with Parkinsons, do the 2 go together or is he just unlucky to have gotten both together ?

I would appreciate any advice as we're not getting much help from the hospital or the GP.

Thu Jan 21, 2010 1:17 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
There's no such thing as having *both* LBD and PD. You can have LBD with parkinsonism symptoms (very common).

Confirmed diagnosis is only possible with brain autopsy. I hope you will discuss brain donation with your mother. Chances are actually very low that an accurate diagnosis has been made while someone is alive.

Progression is very individual. According to a large 2007 study of DLB and PDD, researchers found: "Older age at onset, fluctuating cognition, and hallucinations at onset predicted shorter survival..."

I see you are in England. Have you been in contact with the very helpful Lewy Body Society? See Hopefully they can help you find a specialist near you.

Thu Jan 21, 2010 5:21 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi Ree13 - I just joined the LBDA forum a few days ago, have done extensive reading on the various forum topics, and feel so much better.
My dad doesn't have a concrete diagnosis either, but the more I read about LBD and Parkinsons, the more I am convinced that that is what is wrong and has been wrong with him for about 3 years.
I also have met some great people and gotten a lot of support already from people through the Chat and through the Forum.
One thing I read last night that is helping me is somewhere people were discussing making a graph with a timeline, marking signs that "something was wrong". If your dad made a precipitous decline between, say Sept. and Nov. last year, you'd put the observations appropriately on the graph. That way you can create a line that shows how steeply someone is declining. I am in the process of working on that, then I am going to put that together with a "Cliff Notes" version of his LBD/PD symptoms to share with his caregivers at the asstisted living place where he is.
In doing this, I am realizing that so many things he was exhibiting for several years are part of these illnesses. I wish I had known about all this sooner - it would have saved a lot of family grief and frustration.
Sorry you have had this condition enter your life, but you are lucky you have found this site for knowledge and support. It's really becoming part of my life after 4 days! Lynn

Thu Jan 21, 2010 5:57 pm

Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Good Free Handout
If you are trying to teach other people about LBD, I recommend a free pamphlet that anyone can order off this website called "Facts About LBD". It's concise but covers lots of important things. To find it, go to the LBDA Home page, click on the tab "Professionals" then choose Order Free Patient Handouts from the dropdown menu. You can order 30 at a time for free. I give them out at the assisted living facility where my LO lives.

Thu Jan 21, 2010 8:39 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Thanks AnnieN. Going on chat tonight?

Thu Jan 21, 2010 9:05 pm
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