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 Anyone experience very extreme atypical fluctuations? 
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Joined: Sun Jan 06, 2013 7:37 pm
Posts: 7
Post Anyone experience very extreme atypical fluctuations?
I'm new to posting to this forum, and I'm trying to understand my mom's extreme fluctuating symptoms. She's 72 and has an atypical PDD/LBD with no hallucinations, but rem sleep disorder.

Between Christmas and New Year's she was worse than ever. Wheelchair bound, slumped over, urine incontinent, unintelligible speech, barely feeding herself independently. A week later she went to the emergency room with an acute bowel obstruction following 4 days of unreported constipation, and related aspirational pneumonia (her first bout, and a mild case) from constantly vomiting. After 24 hours of hospitalization where she had an NG tube, was understandably exhausted, and in occasional pain, she woke up, had a bowel movement, and had absolutely no difficulty speaking, holding herself up, and having completely normal sounding conversations. When I talked to her on the phone it was like talking to someone I hadn't spoken to in years. I rushed back to the hospital and had her get on the phone with her sister who was just floored. Later I brought my 3 children to the hospital to visit her before she faded away again. This isn't the first time she's been uncharacteristically "on" in the hospital, but this was definitely the most dramatic. After she was discharged back to her apartment in Assisted Living, she sent me a few emails, perfectly written and sensical, referencing different people and things that were taken care of during the day, etc.

I notified her neurologist, we went over her medications, took away the Robinul for drooling, and that was it. Over the past 2.5 weeks she has quickly, yet gradually declined and she's now unintelligible on the phone, using few words, and totally incontinent. We hired a private caregiver to be with her 4 hours each in the AM and PM to help more than the AL staff can. I called her neurologist again, and he is attributing it to fluctuations in her dementia, but is ordering an EEG just in case.

Please, has anyone ever heard of or experienced this with their LO? She seemed appropriate for hospice a month ago, had a complete reawakening, and then a steep yet gradual slide right back to where she started. I know there are very few answers to find, it's just so frustrating wondering if there is something I or our doctor is missing. Thanks so much.


Wed Jan 30, 2013 1:38 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Anyone experience very extreme atypical fluctuations?
Hi, Annie! I'm not sure what you mean by 'atypical' fluctuations, as fluctuations--even extreme ones--are very typical of LBD. The showtime performances will drive us nuts because often other family members and friends who only see our LO occasionally will not believe what we tell them about their true condition. Eventually, they lose their ability to perform but even late in the disease they can sometimes rise to the occasion. Frustrating, yes. Lewy, for sure!

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.

Wed Jan 30, 2013 3:14 pm

Joined: Sun Jan 06, 2013 7:37 pm
Posts: 7
Post Re: Anyone experience very extreme atypical fluctuations?
Well, atypical for her, I guess. And from any anecdotes I've read from other people. Normally it's the good day/bad day (almost all bad and getting worse for several months now) or AM vs. PM thing. I do remember showtime very well, and haven't seen it in a lonnng time. But you make a good point I hadn't thought of, as if this is an extreme showtime event brought on by an extremely stimulating environment which is being in the hospital. I would have thought it would be a sudden regression but it was very gradual over 2 weeks, losing one ability every few days. I had just started the autopsy paperwork the weekend before she got sick and was *this* close to taking the neurologist up on his offer of hospice, and of course hospice was completely denied by every physician upon discharge.

Due to the obstruction and hospitalization with the tube, I figured she was off her meds for at least 36-48 hours, so I wondered if it could have been med related, but there's nothing obvious, and she's in no shape to be a guinea pig. So as a last option, neurologist ordered an EEG to rule out an seizure activity (she has med-controlled epilepsy), but it's probably a longshot.

Hey, if this kind of fluctuating is normal in later stages, I believe it. It's soooo crazy!!

Thu Jan 31, 2013 1:41 pm

Joined: Thu Jan 17, 2013 9:22 pm
Posts: 6
Post Re: Anyone experience very extreme atypical fluctuations?
Annie I would think that the obstructed bowel had some influence on cognition. it sounds as if she was better after evacuating. how is bowel movement now. And of course this is a progressive disease with fluctuations


Sun Feb 03, 2013 3:29 pm

Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Anyone experience very extreme atypical fluctuations?
I was going to suggest the same thing relative to the bowel obstruction. Due to the issues with autonomous bodily functions, constipation is a common problem. Just as cognition and other symptoms go along with urinary tract infections, it makes sense they would also occur with bowel irregularity. I have to keep a daily record of my LO's bowel movements to ensure he remains regular. He takes fiber capsules and stool softeners twice daily with prune juice in the morning. If he goes two days without a bowel movement, I give him Miralax. Bowel obstruction very dangerous. Good luck and I hope you find a solution to your problem.

All the best,

Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.

Sun Feb 03, 2013 4:56 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Anyone experience very extreme atypical fluctuations?
Yes, Annie, "extreme fluctuations" seems to be the name of the game for many of our LOs. From my experience, this is not atypical at all, in fact it is normal and characteristic of LBD for many of our LOs. 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 Feb 07, 2013 12:34 pm
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