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BillBRNC

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I'm 66 with a firm diagnosis of Dementia with Lewy Bodies and early onset Alzheimer's. I've just now started to pay a little more attention to the Parkinson side of the Lewy Body thing. I mostly check in at the Alzheimer's Association forums, as they have a good number of Lewy Body folks there. I'm hoping there are some here too, but if not, please let me know and I'll vanish and not bother folks. Oh, I meant to mention that I have a great service dog, named Doc. He is a Golden Retriever who was trained initially as a Parkinson mobility dog, but then switched over to add a bunch of new stuff for the Lewy Body and Alzheimer's stuff. He does more for me that all the doctors in the world. Thanks. Bill.

Edited by BillBRNC

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Dear Bill:  Welcome!  I am a relative newbie to this board, but have found a great deal of support here. It turns out that we are having a discussion right now about dementia issues, and your input would be most welcome.  It is in the thread started by Newnormal, entitled "Drifting from myself more deeply"  (or something like that), and should be near the top of the new items under discussion.  Please join in!  Although I do not know how many LBD people are on the board, I am sure there are some, and several who may not yet have the diagnosis and would appreciate your input.  Can you share a little about yourself?  How long ago were you diagnosed?  How are you doing now?  We really are grateful that you have joined us, and look forward to hearing from you.  Swamper

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I started having cognitive issues around 5 years ago, and I thought it was due to serious heart failure. My heart failure improved some and stabilized, but cognitive issues continued to get worse. I thought I had early Alz, as my Mom had it long ago. Long story short, after much examination and testing, I finally got to a major medical center that specialized in this stuff. More testing and the Pet Scan showed I actually had Dementia with Lewy Bodies, with a mixture of early Alz on the side, but they said the primary diagnosis was DLB. Treatment is basically the same for DLB as for Alz, other than holding the antipsychotic stuff. I had only minor Parkinson type stuff then. A year later, the movement stuff is getting a little more visible such that I've been looking at it some too. My cognitive, mood, behavior stuff has been getting measurably worse over the past year. I came here so I could learn a little more about Parkinson's Disease, particularly the movement stuff. It seem from what I'm told and have read that many/most doctors aren't big fans of using Parkinson meds for movement issues for folks with DLB, as opposed to LBD. I'm not sure why, but I've asked some questions on this to the doctor here to see what he says. I found a good article from last year that covers the medication issues for Dementia with Lewy Bodies very well. If I can find it again. I'll attach it. By the way, I'm 66 now and used to be fairly bright.

 

Found it: https://alzres.biomedcentral.com/articles/10.1186/s13195-015-0128-z

Edited by BillBRNC
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Hi Bill,

Interesting article.  I haven't had time to read it yet, buut have a question: Have you seen a MDS Neurologist?  I ask because Alz is a big money player.  In the above article, in the interest of disclosure, the authors state:

"Cognitive decline and parkinsonism are insidious, so the distinction can be difficult to draw and may be influenced by the subspecialty interest of the diagnosing neurologist (for example, movement disorder versus behavioral neurology)." 

 

There is big, big money in that sentence, that will sometimes not act to your benefit.  I read the intro, (and will read the entire carefully tonight) and was struck by one red flag immediately: treating all the movement symptoms separately.  Yikes.  That's a lot of medicine, some of which does not play well with other pills or with PD.  The one thing most people have learned is that you must be (or have) a fierce advocate so you don't fall through the cracks into a rabbit hole.  The problem is public financing.  Alz (with the addition of other dementias) is #6 in mortality in the US.  PD is #14.  see pg 5 of

http://www.cdc.gov/nchs/data/nvsr/nvsr65/nvsr65_04.pdf

 

Now, if LBD or DLB (the same thing;   if your neurologist is telling you different, you need to ask why, very pointedly) is removed from Alz, then in their own estimation that removes 20% of their numbers.  So you can see the problem with govt funding wars here.  So be careful, do research.  I'll finish reading your article, and will search for a few other references for you if you'd like.  Let me know.

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Quietstill, I'm very comfortable with the medical center that did my final diagnosis. If anything, they would have had a bias towards Alz, not Dementia With Lewy Bodies. Plus, the head person that handled me has left for another medical center, and we exchanged e-mails about my diagnosis and the game plan I've decided on, and she agreed completely that the only way I would ever get a better diagnosis is after an autopsy following my death. There is far too much not known about Lewy Body stuff for my liking, but that's the way it is. Like I said, my wife is a physician and believe me she stays on top of my condition, treatment and the current studies. But, even with all of this support, I personally prefer to hear from people like you who are going through much the same thing as I am. I also like to hear from caregivers, because they frequently know far more than the folks with disease. Me, I like to be as objective as I can in looking at everything from every angle that I can think of, because I know far to well from my long career that money frequently talks when it comes to expert opinions. I'll be happy is I know that I more or less doing the right thing. I also have serious heart failure, so I'll be very lucky to make it another decade anyway. I've been on the heart transplant list, then off, and I now can't go back due to my cognitive issues. I've been lucky for the most part, so I want us all to do the best can and enjoy life the best we can. Good luck.

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TexasTom, great looking dog. Who does the leading? Just so you know, I stopped at this Board because I saw your name and recalled it from another place. I guess you know your dog can help with the freeze issues, assuming he's been trained. Take care. Bill.

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Sounds great Bill, I'm glad you have such good support.  If you ever have any questions, or think of something you want to know, I usually hang on the CG thread, or you can always pm with a question.  I only chime off the cg thread if I think I might have something helpful to add.

 

And that is a gorgeous dog!

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Bill,

 

We still work with our trainer.  Trainer should train me, I should train the dog to what I need.  In reality the dog just keeps me going.

 

We are working on loose leading.  I use the just a plain leash, she acts like a counter weight for balance. At times she is more "you are having an off day,lets get out of here!". 

 

Our trainer is good, and today was helping me work with her on relaxation mode. She is a laid back Golden Retriever, but at times is just paying too much attention to me. Goal was for her to just relax and lay down on the floor until I'm ready to go.  If I place her, she is fine, but next to me she is constantly seeing if I am OK. Hence getting her to relax a little bit.   Relaxation Protocol PDF by Suzanna Clothier.

 

 

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TexasTom, my major issue with Doc, which really has no solution, is the fact that I constantly forget the words to use and I even forget his name sometimes. If want him to do something, I might give 5 different commands until I get to the right one. Oh, I know the commands, but my brain just doesn't connect up with my mouth anymore. This is a real problem for those with Alzheimer's and Lewy Bodies. The good news is that Doc seems to figure it out based on what we're doing at the time, so he sits while I stumble through the words and hit on the one that make sense. Sounds crazy, but I really think he can does it. I think it is the nature of service dogs to pay very close attention to their human partners, so I'm not sure what can be done about that, but I'm sure you trainer knows what to do and how to do it. I'm just learning my way as we go along. And that's good enough for now. Bill.

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My Service Dog, is pretty much the same, and very patient with me. 

 

Football players have a wrist strap with the game plays on it. Some days I need to write out commands for her to respond do

and place that list on the inside of my list.  We almost always use hand signing for all commands, she keeps looking at me.

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The list is a good idea, but for me I usually forget I have the list in my pocket, so the end result is the same. I've played around some with the commands (with trainer permission) to use words that I would tend to use naturally to increase chance the right word will come out. Some success. Hand signals are good, but I end up with the same problems. Bottom line is Doc needs to know what needs to be done without me telling him. Of course, I have to get the starting thing right so he will at least have a ballpark idea of what is to come. I've only had Doc for about 4 months, and I can't believe how well he reads me and tea leaves.

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