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 remember three things should be eliminated 
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Joined: Thu Aug 26, 2010 7:11 pm
Posts: 31
Post Re: remember three things should be eliminated
robin wrote:
Those are certainly parkinsonism symptoms. Whether, in your mother, these symptoms are caused by parkinsonism is a different question.

Personally, I would never expect a primary care physician to know anything about dementia or even that symptoms are dementia-related. Indeed, the symptoms you have mentioned in this particular post could be caused by several neurodegenerative disorders, not LBD alone.


We had the conference over at UCI this morning where we went through the test results and recommendations. The reason that they came to the LDB diagnosis is that she has two of the cores (visual hallucinations and cognitive fluctuations) and she scored low in two of the visual-spatial areas. Also, while her short term memory scored pretty low, she was above normal in 5 min and 20 min recognitions. They said that this means she has the ability to form new memories. She was one point away from above average in those two. They said AD typically shows that new memory isn't stored at all where with LBD, it often can.

In fact, they call hers diffuse LBD because there are not any signs of AD. He said that ~50% of those with LBD also have AD. Her ability to multi task and 5 min and 30 min recalls are near severe, but I was so pleased to see how many areas she scored in the normal range. Especially since this morning she had an episode of confusion and thought she was supposed to use her blood sugar lancet in the stomach area where she gives herself her insulin shot.

She did not have any of the Parkinsonian features. In fact, they said that the motor changes affect 25% of those with dementia thought to be lewy body. This is inconsistent with what I read here, but the doctor even said that the neurologist commented on easy my mom was able to move. Zero rigidity, nada in the way of tremors and no slowness of movement.

Her aricept will increase to 10Mg/day and she will start on Nemenda once she adjusts to increased dose of aricept. She will be attending adult day care two days a week. I think this is going to be GREAT for her because she needs more activities and socializing. The fact that she will be participating in games and such that are beneficial for her cognition gives me great relief. This may be wishful thinking on my part, but I have this sense that her day to day life might actually get better with the all the activities. Presently, she doesn't have enough to do or get stimulation.


Mon Aug 30, 2010 5:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: remember three things should be eliminated
stepping_up,

Thanks for the update. Which MD at UCI did you and your mother see today?

Most MDs call DLB without AD "pure DLB." I think the published data is that 75% of DLB is mixed DLB/AD.

I'm trying to think about the neuropathology reports I've seen of brain donation. Nearly everyone has AD mixed with some level of "Lewy body disease."

"Diffuse" typically means that the Lewy bodies are diffuse throughout the brain. I've never heard it to mean "pure DLB."

The MD's comment that "motor changes affect 25% of those with dementia thought to be lewy body" is interesting. I sometimes discuss this with neurologists in the local area. My layperson conclusion is that "pure DLB" often shows no parkinsonism symptoms until much later in the disease course. Further, I believe this is what makes "pure DLB" so hard to diagnose...there's no parkinsonism providing a visible "clue."

You said your mother was slow-moving. Are you seeing something subtle the MD didn't see?

Hope the increased stimulation is good for your mother's well-being.

Robin


Mon Aug 30, 2010 6:28 pm
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Joined: Thu Aug 26, 2010 7:11 pm
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Post Re: remember three things should be eliminated
Very good points Kate. I think that perhaps I was overreacting or had unrealistic expectations. And, it sounds like we have been quite fortunate in getting the diagnosis earlier than many. Based on my interview and how she scored on the test, UCI suspects that she's probably had it for two years. While she hadn't been on the Namenda, she at least has been on the lower dose of Aricept for nearly a year. Getting more stimulation sooner would have helped too.


Mon Aug 30, 2010 6:36 pm
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Joined: Thu Aug 26, 2010 7:11 pm
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Post Re: remember three things should be eliminated
Hi Robin,

We saw Dr. Malcolm Dick today. When I say slow moving, my mom is like a snail. She always walked slow, but now that she's getting up in years, she's even slower. She doesn't shuffle her feet or anything, but everything takes her longer than it once did. It takes her longer to get dressed, to get in and out of the car, etc... Again, she's 83 and given how long she mismanaged/abused her diabetes, it's not all that surprising.

They said that she also has some vascular dementia. She has had a couple of TIA's, but none major enough to have physical symptoms. They think some of the shrinkage could be due to the diabetes and high blood pressure. From 2004 until 2009 my mom hadn't checked her blood sugar and was living on cookies, candy, ice cream, etc... Frankly, I'm amazed at how resilient she has been. If you asked me a year and a half ago, I would have said my mom is going to kick the bucket within the year. It's astounding how much she has improved and without further complications besides this one.

It sounds like we have mom diagnosed with LBD early, so we haven't seen much of the ugliness that comes about in its progression.


Mon Aug 30, 2010 6:51 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: remember three things should be eliminated
Interesting - I've never heard that brain atrophy could be due to diabetes and high BP. (I have heard there's a relationship between AD and diabetes.)


Mon Aug 30, 2010 7:15 pm
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Joined: Thu Aug 26, 2010 7:11 pm
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Post Re: remember three things should be eliminated
robin wrote:
Interesting - I've never heard that brain atrophy could be due to diabetes and high BP. (I have heard there's a relationship between AD and diabetes.)


I forget the exact term for the area, but he was talking about the center cavity of the brain and showing how hers was larger, i.e had less brain than normal. She has shrinkage in the key areas as well.


Mon Aug 30, 2010 7:25 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: remember three things should be eliminated
stepping_up - My Mom is on Aricept and Namenda, too. I don't have the doses here, though. She tried just Aricept before and had a bad reaction to it. I don't remember the reaction exactly, but I think it had something to do with the anxiety she has been medicated for these past 8 years. When Mom's primary asked how the combination was helping Mom, I couldn't really judge it well, because Lewy is so cyclical - good days and bad days seem to have no rhyme or reason. The best I could say is that at least it was causing no harm. I would have to take Mom off of the meds for an extended amount of time to see what effect they had and what she'd be like without them. As long as they aren't hurting her, and we can afford to pay for them for a while yet, I'm content to have her take them.
Don't be surprised if the UCI doc says that you can wait a year for the next appointment. The care team, though, is likely to always be available and, if there's an issue, so is the doctor. I just had a long conversation with a member of the team about Mom slipping more and I felt very reassured afterward. It's a whole different world from the primary's office, isn't it?

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Aug 31, 2010 1:50 pm
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Joined: Thu Aug 26, 2010 7:11 pm
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Post Re: remember three things should be eliminated
Hmm... they didn't talk to me about another appointment at UCI? I was wondering how often they test the MMSE. Last year when I wanted to take my mom to a neurologist and sought recommendations, a few people suggested Dr. Janet Chance. She actually didn't have an opening for several months, but her partner? Dr Verghese was available two weeks later. Oddly enough, UCI suggested Janet Chance as their first recommendation, so we have an appt with her on the 20th. I do feel a bit of assurance knowing that we'll have another doctor who is familiar with this disease.

Are you in SoCal Kate? Have you heard of Janet Chance?


Tue Aug 31, 2010 2:29 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: remember three things should be eliminated
My earlier message was misleading. Our clinic is at the University of Minnesota, called "The Memory Clinic." Mom sees Dr. J Riley McCarten. We got so much information at our first visit that I really don't remember if they said anything about scheduling. That information (that I remember) was in a follow up phone call that pretty much went over everything again. The best thing about being with a clinic like this, I think, is the support of the team. Ours doesn't mind talking with me at anytime and will keep the conversation going for as long as I need it. Sometimes, I just need them to bring me back down to earth when I get too worried or feel guilty or whatever.
Thanks for the name of your doctor. A lot of docs in this area are also involved in research and have published articles or more. I like to look their names up on the web to see what they have written. Lewy is such a new diagnosis that it seems there's more to learn every day.
I've got a suggestion for you. Have you heard of "caregiver burden?" There is a posting somewhere here, I think robin started it. Going through this with your Mom is going to be very hard on you, too. Be sure to tell your own doctor about your Mom's diagnosis and what your role is in her care. It's important for your physician to know that you are going through this stressful extended time with your Mom so that he/she can watch for your health problems, as well.

Best wishes to you and your Mom.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Sep 01, 2010 2:13 am
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Post Re: remember three things should be eliminated
I can understand your frustration with how long it took the doctors to diagnose and the lack of primary care doctors understanding the reality of your Mom's condition. My dad hid his symptoms until it was so obvious and even then his doctor didn't pick up on it. Dad wouldn't let Mom "tell" on him and it wasn't until my sister and I decided to go with them to his appts., and pretty much forced the issue did we get a referral. It took 8 or 10 doctor visits and 2 ER visits and the doc finally referred him to a neurologist who specialized in geriatrics and dementia. Dad refused to let my sister and I go to that visit, which was a mistake, and Mom didn't really understand what the doctor diagnosed. She called me in relief to say the doctor said "He didn't have AD" but she didn't catch that he had something much worse. Finally after another fainting spell, my sister called the doctor and with Mom's okay the doctor explained what he had. When my sister called me, my heart sunk. I had read about LBD but had not found the info on all the symptoms. When I did, I knew for sure that is what he had. He had every symptom that is listed for LBD with Parkinson's!

I tell you this all because I am still surprised how many doctors and nurses don't know about LBD. We had to educate the staff at the nursing home where he is now so that they knew how to handle him. W/o that info, he was fighting them and they didn't understand how to approach him. He thought they were burglers who had broken in his home! After giving them the info, it got much better. But you will always have to educate yourself first to be her advocate. It will be a bumpy ride! We have been on it for about six years and the first two no one really knew he was sick. Good luck!


Thu Sep 09, 2010 1:09 pm
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Joined: Thu Aug 26, 2010 7:11 pm
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Post Re: remember three things should be eliminated
Frick, I'm in the early stages with my mom and it's already hard. I got the full report from UCI in the mail yesterday and have been reading "Living with Lewy." While I'm relieved that we got a relatively early diagnosis and now I know that the "bad days" aren't the new permanent, we've had two somewhat bad days in a row. I feel so bad because there is nothing more that I can do than what we have done.

I feel so much different since the diagnosis though. Before, I would get really angry with my mom thinking that a bad day was her being deliberate or lazy. Now, I'm filled with guilt for all those times that I yelled at her because I thought she knew better. At the same time, now there's all these additional things that I need to do and I'm feeling a bit overwhelmed.

We see the neurologist on Monday, but I still have to figure out how to get a durable power of attorney. I sent the form to her doctor so we can get her in adult day care two days a week, but now it's time for her mammogram and here podiatrist appt, plus I need to get her to an audiologist and it's time for her annual pap and annual eye exam. I am so over due for my own physical, eye exam and pap, but I keep putting those off until I have fewer "mom" things. Hopefully, I'll get her in this adult day care and then that will free up two days for me, except that I think I will need to pack her lunch and snacks. With the diabetes it's so hard. I looked at the menu at this amazing day care place and it's so full of glycemic crap. Arggg.

Literally, this LBD thing, it was the last thing we needed. It's so unfair. While I thought that I was getting off lucky because my mom abused her health and especially her diabetes so bad for so long, everything was checking out good and she was actually doing better in so many ways. Except for the memory thing. I knew I had it too good and everything I was doing wasn't going to give me a totally healthy 83 yr old, but why this?

Do you any of you feel that way too, that it's just so fricking unfair that our LO gets this? I HATE this disease, hate more than I've hated anyting in my life. How much more rotten can it get than to have LBD? Maybe a few others, but still, it's just fricking awful and I don't know if I can cope with its progression. This is my mom. I love her so much and I'm doing everything I can to take good care of her, but I don't know if I can really deal with THIS.

The hallucinations have been really bad these past two days and I feel, well, now I k


Thu Sep 09, 2010 11:50 pm
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Joined: Thu Aug 26, 2010 7:11 pm
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Post Re: remember three things should be eliminated
well, now I KNOW I am losing my mom. I know a lot of you are religious, but I can't help but to think once again that there is no God. Some zealots may point to things that say we deserved this, but I don't think ANYONE deserves this. And what's so frustrating is that I can't believe there's no cure. We're so far advanced from where we were when I was a kid, yet, we have no cures for so many awful things.


Thu Sep 09, 2010 11:54 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: remember three things should be eliminated
Stepping_up, I would not engage you in a theological argument here on this forum but I think it reasonable to say that there has always been and will always be suffering in the world. It's not the suffering but how we respond to it that matters.

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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.


Fri Sep 10, 2010 12:31 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: remember three things should be eliminated
No, it isn't fair for our LOs to have this and for us to have to deal with all stuff that we are forced to deal with because of it. You will eventually get beyond a good deal of the anger and frustration, just like in any situation where you are going through the grief process. It is what it is, and you just have to take it one step at a time, do the best you can do, and try to let go of guilt and anger as much as you can. I used to feel very guilty that I didn't recognize that my dad had dementia, either. Afterall, unless we are in the medical field or have been through this before, how could we possibly know that all these little things we noticed a while back were part of a horrible disease with no cure, and frankly, not a lot of meds that help with the symptoms much?
Just take it one day at a time, take a deep breath, and most of all, take care of your own health as much as you possibly can. All the best, 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.


Fri Sep 10, 2010 9:56 am
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Joined: Wed Sep 30, 2009 8:25 am
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Post Re: remember three things should be eliminated
Your mother is lucky to have someone who cares so much. My Lewy Body mother-in-law lives with me in my home. Her daughters never call her. She would be lucky to have someone such as you as her daughter. Life is never fair and we must play the cards as they are dealt us. Remember that you are not alone.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Fri Sep 10, 2010 8:12 pm
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