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 New member from Illinois 
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Joined: Thu Jun 14, 2012 5:31 pm
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Post New member from Illinois
My name is Ann and my 67 year old dad was diagnosed a few months ago with LBD.

My siblings and I had begun to notice a few years ago that occasionally, dad would get confused about something unusual. It wasn't consistent, and it was easy to write off the occasional memory slip. After all, we all have them, right? Sure, he sometimes got confused about how to get somewhere, but that's easy to do. Sure, he might ask the same question a couple of times in a row, but the tv was on, so he just wasn't paying attention when you answered the first time. As we saw it more and more, though, we got concerned and talked to mom about taking him to a neurologist. he initially went to his family practice doctor, who wrote it off as age-related memory loss. At the time, both he and my mom were still working. Dad had a consulting job and had spent most of his time waiting for a phone call to give him more work, so he didn't have a lot of interactions with anyone other than our family. Eventually, mom talked to the family practice doctor and asked for a referral to a neurologist. The neurologist diagnosed him with "probable Lewy Bodies." Our family was familiar with this because my grandpa, dad's dad, had LBD also.

Grandpa had a very fast decline (this was back in the early 90s - my guess is there wasn't much medication-wise they were doing at the time). In the summer, before I went away to college, grandpa was showing definite symptoms, asking repeatedly to go home (they had moved to live closer to their daughter), but was still pretty functional. When I returned at Christmas, he was sitting at the table, not responding to anyone, drooling. It was a massive shock for me.

My parents have worked hard all their lives and they were looking forward to retiring, traveling, etc. Mom had lots of things she wanted to do and places she wanted to go. She's still trying to do that, but now she has more worries - like what if dad wanders away and she doesn't know where he went? what if he has a carry on bag and he just puts it down somewhere and forgets he had it?

The neurologist had him meet with a psychologist, who wrote up an assessment that indicated that dad uses his outgoing, jovial personality as a cover to hide his confusion. I have noticed him making up stories about what happened based on clues in the conversation - stories that sound convincing, if you don't know that they're totally made up. It also makes us wonder if this has been coming on for much longer than we realized, and he's just been successfully hiding it.

It seems like stress and worry make his symptoms far worse (though perhaps it just limits his ability to cover them up). Some days he seems pretty with it, asks relevant questions, participates in conversations well. His gait is slow, but regular. Whenever something makes him anxious, it's hard to get him back on track. Mom, dad and I attend water aerobics classes 2 nights a week. Dad used to go into the men's locker room on his own, but one night he got lost/confused, and since then mom and dad have used the "family" locker room together. When it's time to leave the gym, he gets agitated every time, thinking that he forgot something (his lock, his socks, his swimsuit, etc), and has to dig in his bag, getting more and more agitated until he locates the "missing" object. It can be frustrating but I believe it's important to keep him physically active as long as possible, so I'm very glad he comes to the classes. He doesn't keep up very well with what the teachers are doing, but I'm happy that he's moving.

Having seen how things went with grandpa, we are all very scared and worried. Mom has taken him on a few trips, and they are currently in Colorado doing a train tour. In July, my brother and sister-in-law are having their first child, our parents' first grandchild, and mom has volunteered to take care of the baby when my sister-in-law goes back to work. I'm concerned that mom is going to stretch herself too thin, especially as dad's condition progresses.

On the plus side for dad, mom is a very loving caregiver, and extremely patient. Also, all 4 of us kids live within a few miles, so we'll do what we can to help. My younger sister is a nurse, and that, of course, is helpful too.

And though our primary concern is for my dad, my siblings and I are also concerned about the family connection. I know that the literature indicates that LBD is not hereditary, but when you get two generations in a row, it's difficult to not worry.

OK, this message is far, far longer than I initially intended. I'm hoping to get ideas, suggestions and support from the threads on these boards. I'm hoping I can convince mom to join the group also. It's not really her thing, but I think it would be helpful. I'm so grateful this group is here, I've started looking through some of the threads already.

Thank you.


Sun Jun 17, 2012 4:15 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: New member from Illinois
I understand your concern. In some cases, Lewy Body Disease is hereditary. The alpha-syn gene, for example, is associated with several disorders, including Parkinson's Disease and Lewy Body Dementia.

Are there any aunts, uncles, or cousins with PD? I think it would be important to try to find a center interested in your family, especially if there was autopsy confirmation of the grandfather's diagnosis or if you have excellent medical records for the grandfather.


Sun Jun 17, 2012 10:59 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: New member from Illinois
Welcome and yes much of the literature does indicate that LBD isn't hereitary but to me that only means they haven't found a genetic link yet !

I hope this can be a place for you to share and gather information that will be helpful to you and you family !

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Irene Selak


Sun Jun 17, 2012 1:45 pm
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Joined: Thu Jun 14, 2012 5:31 pm
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Post Re: New member from Illinois
Thanks for the welcome!

almost all of my dad's aunts and uncles have passed away, mostly of heart disease and cancer. The youngest uncle, now in his mid-80s, has had PD for a number of years. None of dad's cousins, as far as I know, have PD or LBD, but my dad is also the oldest cousin, so I'm wondering if we might see more as time goes on. I'll have to ask mom what kind of medical records we have on grandpa. How does one go about finding a medical center who might be interested in studying our family?

I also agree that they just haven't found the genetic link (or at least not all of it) yet.

I did see something that said something about a genetic link in an Italian family. Half of dad's family comes from Sicily, dad is from the 2nd generation born in the US. May be something else to do some research on. Thanks!


Sun Jun 17, 2012 5:42 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: New member from Illinois
There are known genetic mutations that cause Lewy Body Disease. (Lewy Body Dementia is a Lewy Body Disease.) Perhaps some in your family are carriers for one of those. You will never know until you are studied.

Certainly Mayo Rochester has a strong genetics research program in Lewy Body Disease, and they are somewhat near you. You'll want to find a place with a genetics counseling component because not everyone who participates in the research may want to know what was or wasn't found. It could be that Rush or Northwestern have programs.

Yes, age is a risk factor for PD. (There are some genes more likely to show up in regular onset PD.) It would be worthwhile to study your dad and all of his cousin's now, and then to monitor them over the years.


Sun Jun 17, 2012 5:51 pm
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Joined: Mon Feb 14, 2011 10:22 pm
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Location: Portland, Or
Post Re: New member from Illinois
Welcome to the Forums. I hope you find answers and help here, I know I have. I'm interested in genetics also, especially since I already have very active dreams which I understand might be an early precursor of LBD. I always worried about Alzheimers as I had three paternal aunts with it, but now I think the likelihood of LBD is much stronger. I can't spend any time worrying about what the future might hold though, as I am much too busy in the present attending to my Mom's needs. :lol:
Good luck. Ellen

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Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Mon Jun 18, 2012 1:52 pm
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Joined: Wed Sep 30, 2009 8:25 am
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Post Re: New member from Illinois
I too have wondered about there being a hereditary connection. My MIL has Lewy Body Dementia, her father had Parkinson's as does her brother. I am just beginning to notice some signs in my husband. Since he is recovering from a major heart attack and subsequent surgery, it hard to tell what's going on. I worry about the family connection. But anyways, welcome to the forum from another Illinois gal (down state).

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


Wed Jun 20, 2012 1:52 pm
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Location: SF Bay Area (Northern CA)
Post Re: New member from Illinois
Have any of you worried about inheriting LB Disease/Dementia had your affected family members tested for any of the genes associated with LB Disease? Testing is free through 23andme.com, if you carry a PD diagnosis.


Wed Jun 20, 2012 4:07 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: New member from Illinois
Is it only free if you have confirmed PD, I am not sure I read it correctly.

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Irene Selak


Thu Jun 21, 2012 5:04 pm
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Location: SF Bay Area (Northern CA)
Post Re: New member from Illinois
Right, I asked about "affected family members."


Thu Jun 21, 2012 9:37 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: New member from Illinois
Ok thanks for the info.

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Irene Selak


Sat Jun 23, 2012 9:15 pm
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