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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Anyone here?

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Jim


Sat Mar 04, 2017 10:22 am
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Joined: Sat Mar 04, 2017 11:50 pm
Posts: 2
Location: Florida
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Jilytibrme wrote:
Anyone here?


Hi there. Just registered, but I have landed on LBDA forum topics numerous times over the past year. The information I've stumbled on has been invaluable. Hoping the forums become active again. It looks like they were unusable for awhile. I was unable to register until today.


Sun Mar 05, 2017 12:07 am
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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Gravity,

Well welcome aboard to us lol. Thank you for response, hope it gets active again. Liked your idea to admin of letting folks know it's active again.

Best

Jim

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Jim


Sun Mar 05, 2017 8:52 pm
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Joined: Thu Mar 09, 2017 1:05 pm
Posts: 1
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I've just registered. My mom was diagnosed with "enough evidence to suggest Lewy Body Dementia" in early 2015. She really needs to get back to the Dr. that diagnosed her (an hour away), but spinal surgery the same year left her unable to walk and she's too heavy to put in a car & get her out. The little handicapped county van will not take her that far. I don't know if it would even do us any good to get her there, as she's now on so much pain medication it's probably impossible to tell if the dementia is progressing or it's all the drugs she's on. She will be 77 next month.

I do hope everyone returns to the forum.


Thu Mar 09, 2017 1:48 pm
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Joined: Sat Mar 18, 2017 10:41 am
Posts: 4
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Hello to all!! I am just registered as well. My Dad has been diagnosed with LBD as of yesterday. He moved from a tiny town in Georgia to live with my husband and I here in the New Orleans area so he can receive the care that he needs. After switching out the Dr's, we now have the proper diagnosis. I have had Daddy here since December. We are relieved that we now have a plan of care but i wish that there was more to offer as far a support. So my hope is that we can keep an active group here, we all need this support!!


Sat Mar 18, 2017 10:47 am
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Joined: Fri Mar 24, 2017 9:36 pm
Posts: 6
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I'm here also. My partner is going through the diagnosis part. There aren't enough doctors in my area for this to happen very quickly. When I bring up this disease, some of his doctors look at me as if they've never heard of it.


Fri Mar 24, 2017 11:29 pm
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Joined: Sat Mar 25, 2017 1:32 am
Posts: 48
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Good morning,
I too have just registered. I have been trolling the boards for over a year but there has been little to no activity. I'm so glad to see them coming to life again.
My experience with LBD stems from my parents, my father having PDD and my mother having DLB. Both have passed now. However, I have been noticing a serious decline in my cognition and memory over the past couple of years and, being intimately acquainted with DLB, sought treatment because I felt I met most of the diagnostic criteria. In this respect I consider myself lucky in that I pretty well knew what was happening. I didn't have to flounder through doctor after doctor who had no idea what DLB was, giving varied erroneous diagnoses as so many do. I explained what was going on to my PCP who referred me to a neurologist who did some in office testing (mmse, etc..) and referred me to a neuropsychologist. After an hour's interview he decided I needed extensive testing.
The results showed significant cognitive and memory deficits but couldn't definitively separate Alzheimer's and DLB. I don't know who was more frustrated, me or the neuropsychologist. Anyway, the neurologist has given a diagnosis of unspecified dementia. Says he really thinks it's DLB but doesn't have enough definitive information to make that diagnosis. He says that within 6 months to a year he's pretty sure we will be able to. Just this week started on 10 mg Aricept, hoping for the best.
I'm looking forward to having an additional outlet to discuss all of the oddities that occur with this horrible disease. I'm either blessed or cursed, can't decide, to be able to discuss and see the issues from both sides of the coin I've been a long time caregiver and am becoming painfully aware of the patient's perspective. Would be happy to discuss most anything with anyone. I have learned some topics are off limits with my significant others. For example, I have an ascending aortic aneurysm which at some point would have required cracking my chest to repair the weakened aorta. It occcurred to me and struck me as terribly funny that with the DLB I would probably never live long enough to worry about that. (Silver lining and all) When I expressed my "humor" to my wife, she was less than amused. As a matter of fact, before I escaped from her, I didn't think I was going to have to worry about the DLB either....


Sat Mar 25, 2017 8:53 am
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Joined: Wed Apr 05, 2017 10:24 am
Posts: 4
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Hello! I just registered too.. Looking for answers in VA!! No one seems to have heard of LBD here.. My mom is in the nursing home.. Im sure this is what she has.. She has all the symptoms, but my mom's speech is horrible.. You cant understand what she is saying.. Is this normal in LBD patients?? You can make out very few words. She has gone down within 2 years.


Wed Apr 05, 2017 10:36 am
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Joined: Sat Mar 25, 2017 1:32 am
Posts: 48
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Hi Kbriz,
Welcome. I'm not at all surprised that no one seems to have heard of LBD. It's not unusual for 6-7 out of 10 docs to have never heard of or have very little understanding of DLB. And much fewer of the lay public have heard of it. That's kind of troubling considering DLB is most often considered the second leading (Alzheimer's is the 1st) degenerative dementia. That's the reason so many are misdiagnosed and put through the wrong treatments and tests, sometimes for years. Losing valuable time that they could have been receiving the correct treatment. Most people have to see a knowledgeable neurologist, gerontologist, neuropsychologist, etc... to get an accurate diagnosis. If you look on LBDA.org you will find a chart of the diagnostic criteria for DLB. Not sure if you know this but there is no definitive test for DLB. Diagnosis is made on patient history, physical exam, neuropsych testing, and sometimes PET scans/MRIs. At best you get a "probable" diagnosis.

As to your question, yes, aphasia is often part of DLB. A friend, who is a little more advanced than me, has such advanced speech problems that he avoids going out in public because communication is so difficult. For me, it is still just a nuisance most of the time. There are times when it becomes important but most of the time it's just embarrassing. Depending on how advanced your mother's cognitive decline is, speech therapy may be able to help her regain some of her words. They can also help her with chewing and swallowing, something she will eventually have problems with if she has not already.

Take care,

Randy


Wed Apr 05, 2017 11:26 am
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Joined: Wed Apr 05, 2017 10:24 am
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Thanks Randy for your Reply! Mom cant swallow her meds they have to be crushed because she got choked on them and turned blue. She can still feed herself however she gets more on her than in her mouth. She doesnt understand normal "commands" such as "Lift your feet". When you talk to her she turns her head in the opposite direction. Its soo hard to communicate with her and its sad because just 2 years ago we were laughing and talking. She fell last year and broke her hip and refused to go to therapy so she cant walk without assistants, but she doesnt understand that. She went to UVA and saw a neurologist there that thought she may have LBD because she was having hallucinations. But now im sure that is what it is.. I just dont know what to expect is next.. She cry's ALOT and is very angry.


Wed Apr 05, 2017 12:30 pm
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Joined: Fri Mar 24, 2017 9:36 pm
Posts: 6
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Kbriz,
I heard that you can start the action for them and it helps. For example, if you need her to get up, then reach out your hands and get the motion started. I do this when I help my partner dress. I just put his arm in the direction of the shirt sleeve. I especially have to do this when it is time to go someplace. I think this has to do with muscle memory.
Hope it helps.


Wed Apr 05, 2017 12:48 pm
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Joined: Sat Mar 25, 2017 1:32 am
Posts: 48
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Kbriz,
My mother also had DLB and broke her hip. Not that it will be the same for your mother but that was the beginning of the end for my mother. Within a year she was gone. She refused therapy, wouldn't propel her wheelchair herself, eventually became bed bound, couldn't swallow, couldn't feed herself, became noncommunicative, very stiff, just a horrible year. It didn't seem as though there was anything we could do to make a difference. In the end, palliative care and hospice were a godsend. I truly hope you and your mother do not have to go through this but if so, continue to spend as much time with her as you can. It will be extremely difficult to watch her go through all of this but imagine how bad it would be for her to go through it alone. As I begin my journey into dementia, I can see her point of view more clearly than ever. And after it is all over the only regret you will have is that you didn't have more time to spend with her even though it was so difficult.
My heart goes out to you ,
Randy


Wed Apr 05, 2017 1:25 pm
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Joined: Wed Apr 05, 2017 10:24 am
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:( Thank you so much Randy.. My heart goes out to you also.. Good luck.. i hope you have family support..


Wed Apr 05, 2017 1:41 pm
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Joined: Mon Apr 03, 2017 8:13 pm
Posts: 43
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Kbriz - When my husband's angry, I can sometimes divert him by giving him a hug and telling him that I think he's brave. He looks at me quizzically (is that a word??) and I explain how I think he's brave dealing with all the challenges he has. I think this must be affirming to him, because he seems calmer afterward. And it's the truth.

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jjKing, caregiver


Sun Apr 09, 2017 6:29 pm
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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Thanks folks for the responses! I've forgotten to check back to this thing ( don't rember what this is called)m

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Jim


Thu Apr 13, 2017 8:38 am
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