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 Why is LBD called the roller coaster disease? 
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Joined: Wed Oct 03, 2012 3:34 pm
Posts: 2
Post Why is LBD called the roller coaster disease?
My mother came to live with me 7 months ago. She was wheelchair bound, incapable of getting in and out of car or into bed without basically being physically lifted. Her rigidity from PD was so bad I had to put on an oversized winter coat and still could only get one sleeve in. Took her to a neurologist and he diagnosed her with stage 5 PD and severe dementia(LBD).
After several months she started having basically one large, loose stool every morning in her Depend. Every morning I would have to shower her it was so bad. The doctors could not get it stopped and went on until she was so weak she ended up in the hospital. The doctors said if she didn't tolerate tube feeding either she would only live another 2 wks(tube put in Nov 2011). She was entered into hospice care. That was mid-June. She was put on an automatic drip tube feeding and finally after a month or so the diarrhea stopped.
She has steadily improved and is now walking, eating well, and much more coherent. It is as if there is nothing wrong with her at all. She gets into bed and the car herself. When her hospice expires in December, she will obviously not qualify anymore. Is this normal? Is this what they mean by the roller coaster disease?
Sorry for the really long post. Why this is all terrific that my Mom is doing so much better, I am dreading to see her backslide. Is this the on/off period of PD? What is going on? Thanks for your help in advance.

Wed Oct 31, 2012 6:53 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Why is LBD called the roller coaster disease?
While Lewy is an 'up and down' disease, it's rare to see such a drastic improvement unless an underlying infection is resolved. Infections almost invariably cause extreme decline. There is no 'normal' in Lewy, as far as I know, except that, over time, it progresses. I'm sorry you are having to deal with such a confounding situation but it's good your mother has recovered some independence.

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 Nov 01, 2012 1:33 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Why is LBD called the roller coaster disease?
Wow - that's amazing that your mom is functioning that well after all her health issues. Enjoy it while she is like that and don't be caught unaware when her behavior/health deteriorates. Maybe this will be a long period of her doing well, it is so hard to predict with this disease. All the best, 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 Nov 01, 2012 7:49 pm

Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Why is LBD called the roller coaster disease?
I hope that your mum's good period lasts for a long while. The thing I like least about this illness is that you never know what each day will bring, or each hour even.

Sat Nov 03, 2012 1:00 pm
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