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 I'm new. Looking to share my story and give/receive support. 
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Joined: Fri Apr 05, 2013 6:19 pm
Posts: 19
Location: Maryland
Post Re: I'm new. Looking to share my story and give/receive supp
Hi Jung,

I'm new to this site also. Sadly, my mom passed away last year (she was 83). She had a combination of LBD and Vascular Dementia. Sometimes I think the simple things can be entertaining for our loved ones. I remember I bought a huge plastic bouncing ball from Wal-Mart and she enjoyed just tossing it back and forth to me. I also took her outside in her wheelchair simply to enjoy the weather and look at the trees. My mom was not the type to just sit around and do nothing so when she was able to, I would hand her a few dishes so that she could dry them or give her a few items to fold after I did the laundry. Also, I would write down positive affirmations ("I am blessed"...."I am healthy") on index cards and she was able to read them but eventually it got to the point where she was not able to read, swallow, talk, or recognize us. I truly cherish the small/simple things I did with my mom.

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My mom (83 years old) was diagnosed with LBD and Vascular Dementia. She passed away in February of 2012.


Fri Apr 05, 2013 7:55 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I'm new. Looking to share my story and give/receive supp
Nerrac,
Welcome to the LBDA forums, I am sorry for your loss but to have the memories that you do, they are worth everything now.I am glad you took the time to do the little things with your mom, so many caregivers just get so caugh up in their caregiving they forget the little things in life which you now see how important they are. Thanks for the reminder !

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Irene Selak


Fri Apr 05, 2013 8:26 pm
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Joined: Wed Mar 27, 2013 9:42 pm
Posts: 18
Location: Lexington, KY
Post Re: I'm new. Looking to share my story and give/receive supp
Thank you for your post, nerrac. I'm trying to read everything I can about what might help improve her quality of life and maintain the abilities she has. What great suggestions. How wonderful that a discussion board like this can facilitate our helping one another through these difficult circumstances. I know that this is a difficult path--somehow we will make it through.

I heard from the physician's office today. Her MRI and bloodwork all look fine. What I wish someone would help with is the "what to expect." Perhaps that can't be answered. I wish I understood more about what a 19 on the mini-mental cognitive test meant. I wish I knew what was the appropriate plan for her care. My uncle desperately needs more respite from caregiving. Reading, reading, reading...


Fri Apr 05, 2013 9:00 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I'm new. Looking to share my story and give/receive supp
Jung,
Take it one day at a time, I have been doing this a long time and I am still learning every day. I had 9 yrs of caregiving then 7.5 yrs here as moderator , that's a lot of years. I think the hardest part of this illness is no two people are alike they all react in different way with medications , but the medications are the big learning curve for anyone dealing with LBD, we can't assume just because the Doctor says go home and take this that is the right thing to do, each caregiver and advocate have to be able to see when something is not right and report it before it cause damage that can't be reversed. Just take your time learning, you won't learn it all in a few days time.

Good Luck !

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Irene Selak


Fri Apr 05, 2013 9:19 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: I'm new. Looking to share my story and give/receive supp
Hi Jung,
I can try to help a little with interpretation of the MMSE score. It is an evaluation of "global cognitive function". The items on it are questions that cover different domains or types of cognitive function. You get one point for each right answer (for the most part). For example, one component is memory, and in one memory question, the doctor tells the patient the names of three objects (often apple, table and penny) and asks the patient to try to remember them. They ask another question or two, then ask the patient to recall the objects - the patient gets one point for each one correctly recalled. People with AD lose this ability pretty early - those with LBD may retain it rather longer. Another area is orientation to time and place ("What day of the week is this?" and "What city is this?" might be typical questions - it varies a little from doctor to doctor.) They also ask people to perform a complex task, such as drawing two interlocking pentagons, or drawing a clock face, or following directions to do a series of things with the hands. This last section measures executive function, which is often lost early in LBD. My mom still remembered the apple table penny sequence 20 minutes after finishing the test, but her drawing looked like scribbles, even when her MMSE was in mid 20's.

The test helps to give the doctor a benchmark about where the patient is. We'd usually consider 19 to be somewhere near the edge between "mild" and "moderate" impairment, in the AD world. The test also helps to give a sense of what domains are most affected, though in a full neurological work-up, a neuropsychologist would give a number of different and more specific tests (they took 40 minutes or so to evaluate my mom, with a very detailed panel, but this was my colleagues and they did the fancy research work-up.) And finally, this is a pretty quick test, and many primary care docs as well as neurologists will do one every six months to a year to track change.

One of my colleagues, John Olichney, who is an LBD specialist, published a paper a few years ago in which he showed somewhat faster decline on MMSE for LBD - about 5 points a year - than for AD (around 3-4 points per year). But he also noted that the rate of decline was much more variable for LBD than for AD. Some people stay stable for a while, others decline quite fast. And the rate may be different at different points in the disease process, say slower at the beginning and faster later on (that has been the case for my mother). You'll find lots of stories on this forum, and they will illustrate just how unpredictable this disease is.

I hope this is a little help to you! Ultimately, though, there isn't a real way to predict exactly what will happen with any given person. (I have done this sort of research for 25 years and I still can't tell you where my mom will be next week, let alone a month or two from now.) We learn a lot of patience, of necessity. And people here are great teachers, of patience and love and coping.

And we will be thinking of you, and caring for you, and that, too, is a huge help.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat Apr 06, 2013 12:49 am
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Joined: Wed Mar 27, 2013 9:42 pm
Posts: 18
Location: Lexington, KY
Post Re: I'm new. Looking to share my story and give/receive supp
Laurel, what a huge help. THANK YOU! I've read some but couldn't find mean and standard deviation for the test, and that was the only way I knew to interpret scores, so thank you. I really appreciate your time to make such a detailed response. Lee Ann


Sat Apr 06, 2013 9:35 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: I'm new. Looking to share my story and give/receive supp
Hi Lee Ann,
Glad I could help! I realize I forgot to mention that the maximum possible score is 30, and probably most healthy folks would get 30 out of 30, or very close. So the mean and standard deviation are not the best ways to interpret a score. This is more like "how much have you lost from where a healthy person should be". We rarely see very low scores because by the time a person has lost that much function, it's too hard to get any testing at all done.

Take care and just know you have a lot of friends here, with lots of different kinds of experience and advice, and just hugs if there is nothing else we can do. It's been a huge help for me.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat Apr 06, 2013 12:31 pm
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Joined: Sun Feb 17, 2013 11:41 am
Posts: 12
Post Re: I'm new. Looking to share my story and give/receive supp
jung, i am so impressed by what yu have accomplished so far.

may i suggest that, among other documents, you also get a POLST?

that is a Physician Orders for Life Sustaining Treatment. my mom has a copy on her refridgerator, one n her purse, my sisters, both docs, and the assited living people all have copies.

my mother also has DNR/DNI orders on file with all providers.

this is in addition to her living will and giving my sisters and i POA and making us her medical agants.


Thu Apr 18, 2013 3:32 pm
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: I'm new. Looking to share my story and give/receive supp
First, let me say your care of your aunt and uncle is exactly on point. Keeping in touch, keeping them informed and having them be a part of everything you're doing is helping them keep some control and dignity about the situation. A medical power of attorney is extremely helpful. I would recommend you keep a bag with pertinent items so that you have them all in one place to grab. More than once, even though I'd given a copy at admission/during clinic visits, etc--I've pulled out that POA, the Mayo clinic assessment document, the last neurologist visit notes to assist (and, for me, a phone charger). I also would sometimes forget the simplest things when under stress (what other meds was he on?, when did he start the Exelon?, etc.-- even tho I lived it every day!). I remember also that Ted would sometimes have those "good" days--so glad he had them, but it was difficult when I was trying to persuade the nursing home physician to LOOK at what I was seeing when Ted was declining. It truly is a roller coaster disease. I feel one of the things we did best was sticking with Mayo and our local neurologist. They were able to truly see the changes and cared very compassionately for Ted and I over the long haul. I HIGHLY recommend doing videos. Not only will these be a reminder of good times, it will help document any concerns you may have so you can discuss with providers. When Ted passed, because he had clearly expressed his wishes in his living will, we were able to follow those & his hospice folks were an enormous help with keeping him comfortable in his last days. My best to you and so glad they have you in their corner.


Sat Apr 20, 2013 7:32 am
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