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 Not sure my mom really has Alz w Lewy Body variant 
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Joined: Tue Sep 18, 2012 10:07 pm
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Post Not sure my mom really has Alz w Lewy Body variant
Hi Everyone!

My 86 year old mother who lives in nursing home was recently dx with probaby Alz w Lewy Body Variant. She also has an underlying psychosis and depression dx. I was a bit surprised by this dx. I went to a new dr to follow my mother's psych care more closely after a recent geriatric hospitalization. This dr is a geri psychiatrist by training, but works with a team of neurologists in a dementia/brain clinic and i thought it might be a good fit as he's in the same hospital system that have handled a lot of her care recently.He did some testing, reviewed her history and looked at least one if not two brain scans.

Could you please let me know if any of the below symptoms sound familiar with your exp of lewy bodies? I'm a bit skeptical as my mother has had so many issues with medication reactions and other types of psych issues that I find it hard to know if this is really a correct dx. Some of her psych/med issues have included, visual auditory hallucinations. delusions, depression, agitation and anxiety etc and as a younger woman had a few issues though infrequent. ( post partum depression, a mental breakdown twice in her forties and then a short episode 17 years later. Alll cleared up mostly with no medication.) Mom also has epilepsy which she developed in her forties- had a few grand mal seizures, finally controlled with obscure seizure med when traditional meds caused psychotic issues) Also dx with very very mild case of cerebral palsy which manifests as still muscles and slower speech motor coordination..had that as a child. No spascity.

OK so here's the stuff that makes dr. think Lewy Bodies-

* One of the clues for the doctor was that mom has had mild visual hallucinations with insight into them, that is knowing that even though she sees these things others may not. Her first visual hallucinations if you can call them that, started 7 years ago and mostly were spots and shadows on the walls that she found odd. These spots and shadows were actually there…but it was like she was confused by how they got there and what they were. She was also mildly concerned( delusional) that they were coming from a light someone was shining into her house from the apartment building across the way. ( has spotlights). She was aware of these spots and would check in with us about them. She had these issues for almost a year and one dr suggested assisted living and not eing isolated would be helpful as they disappeared when she came to a hospital for an evaluation. Eventually though she had a severe psych episode and the hallucionations disappeared after being put on anti psychotics. Fast forward to early 2012 and she started saying she saw things moving in her room and colors changing on the walls, that type of thing. That happened a couple of times. Again, she kind of knew that it wasn't really there, but it still seemed real. Each of these episodes progressed to anxiety, tearfulness, auditory hallucionations and last July delusional thinking and agitation. Fortunately it's all under control for now. Anyways dr. thought the fact that she had insight into her hallucinations was indicative of Lewy Bodies…

*Mom also has a slight tremor in her hands and stiff muscles, but she walks with walker and supervision. She's had the tremor for awhile and I always chalked that up to her cerebral palsy and getting older. She needs help getting dressed, showering and getting out of bed, but still has some physical capabilities..etc see below.

*Another thing though is she complains she is drooling. I never have really seen it, but she wipes the outside corners of her mouth a lot and last week I did see a little drool coming out. ( He didn't say that, but I've read that drooling can be a symptom so I'm wondering if this may get worse? )

*Another thing the dr said, which I'm not sure I agree with is that fluctuating cognition is another sign. He used the example of her anxiety during her appt. At times she would be fine and then she would start getting agitated and anxious. ( To me she just seemed triggered by things we were talking about…) Mom is very alert, observant and attentive. Those seem to be her strengths. Short term memory and problem solving- really bad. I don't really get this fluctuating cognition thing. She's been calm ever since the day after the docs appointment.

DOESN'T HAVE THESE SYMPTOMS- falling a lot, blank stares a lot ( though she did have a few brief episodes that started with staring and stiff muscles but didn't last-either led to agitation or psychotic stuff. Hard to dx because we suspected she was having reactions to her medications which she was pulled off.) She also walks fine, stiff and a bit hunched yes but does use her walker w supervision, feeds herself, brushes her teeth, cam play cards etc.

I'm sorry this is so long...but I would really appreciate your feedback here. Just trying to make sense of what mom is dealing with so we can hopefully make better treatment choices.

Thanks,
Caroline


Wed Sep 26, 2012 10:19 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Not sure my mom really has Alz w Lewy Body variant
caroline...

so sorry for what you and your family are going thru.. it sounds like you mom has alot going on.. its so hard to know for sure on LB. with all she has had in her life, its probably unbelievably hard...

so many things that LB has, she has an explanation or possible cause.. i certainly dont feel qualified to even venture a guess. sorry...

but wanted to wish you luck and hope you find some answers ..

please stay in touch and let us know how you are both doing...
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Thu Sep 27, 2012 2:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Not sure my mom really has Alz w Lewy Body variant
Welcome, Caroline and sorry for your need to be here. With your mom's history, it does seem like there could be various intertwining things going on. But, with your bullet points, let's just say if you read lots of the posts on this forum, you'd find everyone of those bullet points in various people's postings. They all sound "typical" of many LBD patients. Some people have all of those things, some have most plus other observable symptoms.

I spent a lot of time and angst trying to figure out a dx for my dad, and in the long run, it made absolutely no difference. For some, especially those who are younger and in early stages, it might make a big difference in terms of finding meds to help control some of the symptoms.

If I could make a couple of recommendations, they would be:
- read as much as you can about PDD & LBD in books, on the internet, this forum, etc.
- take her to the best geriatric neurologist you can find and get her to practically (something I was unable to do, due to how far we'd have to travel)
- surround yourself with lots of support because you will need it to help take care of yourself

Best wishes in dealing with the situation. 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.


Thu Sep 27, 2012 3:03 pm
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Joined: Tue Sep 18, 2012 10:07 pm
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Post Re: Not sure my mom really has Alz w Lewy Body variant
Thank you for your kind replies.

One thing I want to add is that she is doing really well right now. She's on a low dose of Abilify, Lexapro and Depakote. I hope and pray she continues to stay stable, but over the last year and a half she's had a pattern start every 5 months that would begin with very mild hallucinations, then anxiety, tearfulness, then delusions...then agitation and med/food refusal. She's been good for the last month since getting out of the hospital. These are new meds after being taken off Seroquel which I think made it worse when increased. They also took her off Namenda as they didn't think it was helping. So hopefully this pattern will be broken.

I just don't see a pattern of fluctuating conscousness that is talked about. Oh well. Sometimes I think it's just best to try to treat symptoms as they arise and not worry too much about the dx, being mindful that she is senstive to meds. About all we can do.


Thu Sep 27, 2012 3:56 pm
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Location: Vermont
Post Re: Not sure my mom really has Alz w Lewy Body variant
Just be aware that huge fluctuations in all sorts of things can happen at a moment's notice with LBD. So, enjoy her relative good health while she is experiencing that, and don't be too surprised if she has a decline that can literally happen at a moment's notice. I wish I'd known that and been prepared for it. Seems that can happen a lot with folks with LBD, not all of them, but certainly quite a few from what I've read about or known about as well as my own dad. Take care, 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.


Thu Sep 27, 2012 4:03 pm
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Joined: Tue Sep 18, 2012 10:07 pm
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Post Re: Not sure my mom really has Alz w Lewy Body variant
Well....I just have yet to see huge fluctuations that's why I'm skeptical. Ive seen a slow progression of more psych symptoms that keep getting worse and then improve when we tweak meds, but no up and downs that are moment to moment or even day to day. She may be a bit sleepy in the morning, but that's not always a given. I just don't get it.


Thu Sep 27, 2012 6:09 pm
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Joined: Mon Feb 14, 2011 10:22 pm
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Location: Portland, Or
Post Re: Not sure my mom really has Alz w Lewy Body variant
My understanding of "fluctuating cognition" is her awareness of what is going on, who and where she is, who we are, etc. Most of the time my mom is very "with it" but when she gets tired or is sick it goes downhill, sometimes very rapidly. An untreated UTI is the worst. Last year she had one and went from being able to feed herself at breakfast to sitting in her recliner thrashing her legs back and forth and calling for her mama (who has been dead for 30 years), unable to figure out how to use the spoon to eat some yogurt. We ended up in the ER and by the next day after a few doses of antibiotics she was back to her baseline. My mom also has had no falls, maybe because she was already using a walker. She has hallucinations ( mostly just people who aren't really here), but when she's sick or tired they are more frequent. One thing that helped us with her diagnosis was having her tested by a neuro-psychologist. I don't know if any of that helped you or not, these are just some of my experiences.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Sep 27, 2012 6:35 pm
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Post Re: Not sure my mom really has Alz w Lewy Body variant
empritchard- thanks for sharing this. I also read one of your posts on another thread. What sounds familiar is that my mom is very sensitive to med changes- we saw this when we decreased her Seroquel by 12.5mg. She went into a tailspin..plus a few other meds had been changed. It's interesting, she also developed a bad cough right before her last episode that started in July. In March, they found a UTI and she also had a bad episode...hmmm. And she really goes down when these things happen, but then again, I've heard the elderly can really have trouble with UTI's...or medical issues...so is that Lewy or just that they are old? I dunno, perhaps i'm resistant to this dx. I'm just so tired of the many different dx. The last dr at the hospital she was in in Aug, had a list of about 10 different dx on his discharge summary. It was a bit over the top. ( He wasn't the one that diagnosed the lewy bodies..)


Thu Sep 27, 2012 11:24 pm
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Post Re: Not sure my mom really has Alz w Lewy Body variant
A really good book that has been very helpful to me is " A Caregivers Guide to Lewy Body Dementia" by James & Helen Whitworth. I checked it out at our county library first and found it so informative
that I bought 3 copies for myself and two siblings. It really does answer every question I've had about this disease.

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Oct 01, 2012 11:54 am
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Post Re: Not sure my mom really has Alz w Lewy Body variant
Caroline,
Welcome to the LBDA forums ! I know you will gain a great deal here with many caring people!

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Irene Selak


Mon Oct 01, 2012 6:41 pm
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Post Re: Not sure my mom really has Alz w Lewy Body variant
Hi Caroline, I was drawn to this post from a more recent post you wrote regarding moving your mom to Philadelphia. We live in the Philadelphia area and my mom was diagnosed by a great neurolgosit from the University of Penn. I would be happy to share her information with you if you would like. By the time my mom went to her (6 month wait!) we had already pretty much figured out she had LBD and her PD had started her on Aricept. The dx is probably not as important as finding the right meds to fit her symptoms.
I know my mom's hallucinations were different from your mom's in that she 100% believed what she was seeing and no one can talk her out of it. Whereas my dad (Parkinson's dx) had a reaction to one of his meds and was seeing caterpillars on his doorknob but really knew they were not there. Interestingly my dad is the one who drools, which is from his PD. My mom has the runny nose thing always going on though. It's hard to distinguish what all your mom's symptoms might be from. Any time my mom's hallucinations were really bad we discovered she had a UTI and after antibiotics her hallucinations subsided. I've seen others share similar stories. They are infrequent for her at this time.
Not sure if any of this is helpful to you but I know I always find it helpful to hear others experiences
Good luck with the move and please let me know if you need any information on the local doctor.
Cmt


Wed Oct 03, 2012 2:38 pm
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Post Re: Not sure my mom really has Alz w Lewy Body variant
Hi cmt,

Haven't been up here for awhile. Sure, yes I would be interested in getting the name of the neurologist you took your mom to. That would be great. I'm also curious if you ever had to take your parents to a geri psych unit in the area and if so, which one and were you happy with it?

Are your parents at home or in a facility? Curious to know where. i'm moving mom to the nursing home at Springhouse Estates in the Ambler area.

I'm so terrified at the moment to do this. It's a huge change for both of us. I was really comfortable with the people there so having to start all over is a little daunting. I'm hoping the loss I feel won't be as great for her with her memory not so good, but it's still enough there that I'm so worried she might get very depressed.

Thanks for your post!


Fri Oct 12, 2012 4:21 pm
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Post Re: Not sure my mom really has Alz w Lewy Body variant
Caroline, My mother was seen by Dr. Carol Lippa at Drexel University (I originally said U of Penn). She is a Professor of Neurology there and is actually on the LBDA Advisory Council. We were unhappy with my mom's original neuroligist and when we called her primary doctor and explained what was going on he recommended Dr. Lippa. In the six months we waited to see her my sister did some research on Dr Lippa and when we read about LB we realized it fit my mom. In a way we credit her primary with pointing us the right direction and maybe he knew it was LB and that is why he sent her there. We only saw her one time. She felt that the primary could manage her. He did and made any med changes until she moved on to the SNF at her facility. She is now seen by the doctor on staff.
Thankfully, we have not had to send my mom to geri psych unit. We have educated staff at Paoli Hospital and Delaware County Memorial Hospital about LB. The brochures form LBDA have been helpful when she has been in the hospital.
My parents currently reside at Wellington at Hershey Mills in West Chester. We found that to be the best fit when my parents moved 2 1/2 years ago and both required Assisted Living. After 8 months she moved to the SNF unit on the first floor. Overall we have been pleased with the place.
Is your mom moving from your home to Springhouse or from a different faciltiy? I think any change is hard on our LO's. But I also feel that if my mom moved to the room next door that would be hard for her. Change is never easy (for any of us). I know when my parents moved to AL I was just relieved that someone was always going to be there for them. That was a huge relief.
My mom does exhibit depression symptoms and I wonder if it's just another hallmark of her disease or if it's something else. We have had no luck with medication for her and she cries/ moans a lot.
Please let me know if you have any other questions. I am happy to help.
cmt


Fri Oct 12, 2012 4:55 pm
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Post Re: Not sure my mom really has Alz w Lewy Body variant
Hi cmt,

Thank you for the doctor info. I will look into this. I need to figure out if this is really her dx or not. The one thing that seems consistent with LB is her sensitivities to meds, however, she's always had issues with meds, even in her 40's with seizure meds...

I'm sorry you haven't been able to find anything for your mom's depression. What have you tried? Have you looked at Lexapro? My mom was put on that in her last geri psych stay. She was also put on Ablify which I was pretty sure would work as I had seen it bring her back from a dark place a few months earlier. Though Abilify is an anti psychotic, it's also used to support anti depressants. I wonder if that is something to think about for your mom? When my mom was in the hospital for seizure monitoring, she got very down and was refusing meds, food and care. They have her a low dose of IM Ablify and she came back! It was amazing..we should have switched her to it and gotten her off the seroquel back then, but that's another story. The combination of these two meds has been great for her.

My mom is currently in a nursing home in the cleveland area that's part of a retirement community she's lived in for 14years. I'm really struggling with this move, there's a lot of grief here for me. Even though it's so far away I've been out there quite a bit this past year and have grown very fond of the staff and very at home there. It's hard having to think about starting over. Yet, the travel and anxiety is wearing me out. Mom's had a few cycles that had started with mild misperceptions, then anxiety/crying//delusions...combativeness. Each time we got her off another med that we thought was causing a problem( pain meds..), but we never took her off Seroquel( long story), but this last time that was finally stopped. I really think the Seroquel has been a disaster for her. What I don't know is if the Seroquel was causing her symptoms or just not controlling her issues well. She had been on Zyprexa for 4 years with no problems at all till she had a change in mental status and then was put on Seroquel. What a mess. After this last hospitalization i just hit the wall and realized I couldn't keep driving out like this

Anyways...so here we are with a new place and now I'm terrified to go through with it. Her spirits are better than ever..memory a little worse. ( they also took her off Namenda in the hospital...) I pray this won't destabilize her, but but the nursing home is convinced it will happen again and they can't take care of her. Sigh.....so it's kind of forced me to get off the fence and make this move, but I'm sad about it. I need to get in a better place before we tell her. I had been feeling more hopeful and relieved before, but kind of slipped.


Fri Oct 12, 2012 11:28 pm
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Post Re: Not sure my mom really has Alz w Lewy Body variant
We tried Lexapro for my mom a few years back when she had a short rehab stay in a SNF. Her symptoms at the time were just generally being down in the dumps. After a few months we all agreed it made no change and she was taken off it. Last year we tried another (I'm drawing a blank on the name) because of her crying/moaning. After only a few weeks she asked to be taken off the drug. She has such little say in her care anymore that I never thought twice about taking her off it if she was vocalizing her wants. But I do know she really wasn't on it long enough to see if it helped. She has a weak stomach and new drugs are always a challenge. The SNF hasn't really pushed us on trying anything else.
I can see your reservations about moving your mom. It will be hard on both of you. But it sounds like in the long run it will be for the best. You need to take care of yourself and traveling that great distance is draining physically as well as mentally. Just remember that the new facility might be different but they will also take good care of your mom. As long as you are vigilant and stay in communication with the staff it will all be okay. Your ability to be there right away if needed should be a great comfort. My mother is 30 minutes away and is right between me and my sister. We are thankful for that.
Good luck with sharing the news with your mom. (We usually wait until the last minute to share news with my mom. That way she has less time to get anxious and confused about when it will happen. Of course our plans only involve day trips). Good luck also with the move itself.


Mon Oct 15, 2012 2:41 pm
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