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 New Diagnosis for Mom 
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post New Diagnosis for Mom
Hello All!
After the first observable visual hallucinations and parkinsonium type onsets, my 70 year old mom was diagnosed with LBD after a four night stay in the hospital. Two weeks later after seeing the neurologist, the diagnosis "stuck." I joined this forum for research because I am the primary caregiver. She has few friends and I abandoned my life to move here with her. I have made one friend here and the rest of my friends and family are more than 4 hours away. My mom is often not the mom I've known. I love her and signed up for this and wouldn't change anything but I take my responsibility seriously and want to make sure I do well. She has improved greatly (Aricept/Thyroid meds/ Vitamins C &E/PT) and has been nicer these past two days. The sister of a friend told me.
"Testing can be stressful and it’s typically more helpful when diagnostic clarification is needed- it can provide information on specific difficulty areas early in the process, but you might figure much of it out on your own if given a little time. As I’m sure you know, each person is different and the progression can differ quite a bit from person to person. I can tell you what features are common, but you’ll be more in-the-know about what’s going on for your mom."
I haven't really felt like I've know what's going on until finding these online forums. Thank you all.

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Katie (36) daughter of Marcia (70)


Tue Dec 28, 2010 6:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: New Diagnosis for Mom
Welcome Tiny. There are many supportive people as well as lots of information here. Everyone here is either a person with LBD, or mostly caregivers (CG) of someone with LBD or something akin to it, so we can all empathize with you. I'd suggest reading as many of the postings as you can, starting with the ones that look like they'd be most helpful to you right now. Sorry you have to be here but glad you found us! 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.


Tue Dec 28, 2010 6:59 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New Diagnosis for Mom
Tiny,
Sorry you've had to join the LBDA Forum. I'm sure your mother would be proud to know that you are so committed to doing a great job as her primary caregiver.
Robin


Tue Dec 28, 2010 7:14 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: New Diagnosis for Mom
Welcome, Tiny! You will find a lot of valuable information, support and encouragement here. It's a tough job, for sure, but--as they say--somebody's got to do it! God bless you for taking it on.

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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.


Tue Dec 28, 2010 7:34 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: New Diagnosis for Mom
Tiny, It nice to know you're not alone, this disease can be very isolating but remember we're all in the same boat. Sometimes the days seem to be endless but this is a place to vent because everyone knows what you are talking about or going through, welcome.

Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Dec 28, 2010 8:33 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New Diagnosis for Mom
Tiny,
Welcome to the LBDA forums, l am glad you found us and I hope it helps you see that you are not alone, there is so much information here . There is always someone willing to help with a question, if you post in the areas that most fit your question your chances for more replies are better.
Good luck!

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Irene Selak


Tue Dec 28, 2010 8:47 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: New Diagnosis for Mom
Thank you all. I have finally begun to understand that much of the discord regarding our new living arrangement is my issue. As you all know, she may look the same but she's not the same. She's often mean and my input or verbal response, if more than a sentence, is too much for her. She's in the beginning stages, doing much better and compensating like a champ(she's a former RN). Now off to more studying. This venue has been the most informative resource I've found.

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Katie (36) daughter of Marcia (70)


Tue Dec 28, 2010 8:57 pm
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: New Diagnosis for Mom
Hi Tiny, I too am new and I am a daughter sharing the caretaking of my mom with my brother and sister. My mom was diagnosed in August and like you, until we found this forum, we could not tell which end was up. Only after beginning to learn from the vast resources here did I feel that we could understand the rapid changes in my mom, physically and mentally. She can also be quite mean and aggressive when her delusions put her in an extreme mode of agitation. If you have not read Boeve's continuum listed on the resource page, that is great place to start, especially in learning about meds, the good ones and those that can potentially be harmful for lbd patients.
The support, knowledge, and experience from other members is a lifeline for us as we struggle to take care of our mom in her home for as long as we can. Your mom is blessed that you were willing to move and are committed to learn as much as you can in your caretaking. Even finding the time to get to the computer can be a struggle, but the people here make it well worth your time. Welcome!
Debbie

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Tue Dec 28, 2010 10:19 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: New Diagnosis for Mom
Debbie,
Thanks. I will follow up on the resources you recommended. The back and forth role reversals have kept me on my toes for sure. I'm still trying to figure out how I can get her to do what she needs to do and she still feels like she's mom (the boss). Even in the short time I've been a member, you all have provided a sense of hope that maybe this journey might not be so perilous.

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Katie (36) daughter of Marcia (70)


Tue Dec 28, 2010 10:37 pm
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: New Diagnosis for Mom
Tiny,
I am glad you have found this site early on. It will help you tremendously. I too, was a daughter and sole caregiver. This does present a unique challenge in managing the LBD! Best of luck as you travel this journey. I am sorry to say you more than likely will go through some peril!!! We are all here for you.

Sharon E


Thu Dec 30, 2010 3:25 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: New Diagnosis for Mom
Thanks Sharon.

Today was a fabulous day. I channeled all I had read and learned from these great folks and mom and I went shopping and to a Dr.'s appt today. She told the Dr. she "Didn't have LBD," and she did well on most tests except the clock and 3 word recall. I hope the Dr.s at least vary the word spelled backward and the time (clock drawing) in the future. I followed recommendations from others here and we both did well. Thanks to everyone here. I want you all to know that your experiences continue to beneficially impact the lives of others. I laughed a lot today. I told her she was right a lot. I followed her lead; I attempted to change. Thank you, thank you.

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Katie (36) daughter of Marcia (70)


Thu Dec 30, 2010 10:39 pm
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: New Diagnosis for Mom
That's wonderful progress Katie! It really lets us know that a change in perspective and approach can sometimes make a huge difference! I've sent you an email to to the email address that you used when you registered. Let me know if you received it and Happy New Year!
Debbie

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Fri Dec 31, 2010 1:08 am
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: New Diagnosis for Mom
Debbie,
I received your email and replied. Thanks!

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Katie (36) daughter of Marcia (70)


Fri Dec 31, 2010 9:53 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: New Diagnosis for Mom
My dad "studied" and kept notes every time he had something like a neuro test so he could get it right the next time. He was so intent on passing the tests and for a while he was actually able to "cheat" and get answers right. Ex. Who is the president? For a couple of months he would ask me to write down the name of the president and other answers to questions routinely asked. He'd keep that paper next to his bed or chair at the ALF and pick it up several times a day and I could see him concentrating really hard on remembering these things. The clock test - that is something I don't think they can cheat on. I was so sad when I asked him to draw a clock face with 10:20 showing. OMG. It was unbelievable.
It's a good idea when your LO is still functioning pretty well to ask the drs. to change their questions. Last August the neuro asked him what month it was and he said "fall". Then the dr. asked "what season is it?" And he said "fall, it's hot so it must be January." :cry: But he got the president right on that visit, after much studying! 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 Dec 31, 2010 2:06 pm
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: New Diagnosis for Mom
Lynn,

That is toooo funny. I love it! My mom would not even take the test. haha


Fri Dec 31, 2010 2:10 pm
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