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 Which came first, the Parkinson's or the Lewy body? 
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Joined: Fri Oct 15, 2010 6:41 pm
Posts: 4
Post Which came first, the Parkinson's or the Lewy body?
I am a caregiver for my husband Dan. He was diagnosed with Parkinson's disease in January of 2000. In 2001 we went to North Shore Hospital, in Long Island for a "weighted pet scan" at their research center. His doctor thought he might have an MSA and we wanted to find an answer. Dan was found to have a-typical idiopathic Parkinson's disease with no MSA.

He has shown severe cognitive decline since 2007. He was diagnosed with Lewy body dementia a few months ago. He is now fifty two years old. His neurophyscologist believes he has had dementia for several years. He is now considered by his neurologist to have both of these disorders. I was given information about your website from Dan's neurophyscologist. I need to educate myself about the disease.



Thank You,
Roxy


Mon Oct 18, 2010 11:46 am
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Post Re: Which came first, the Parkinson's or the Lewy body?
Thanks for your interesting post!

You asked "which came first, the Parkinson's or the Lewy body." And you mentioned that your husband's neurologist says he has both PD and LBD.

The LBD community is very muddled when it comes to terminology. A Lewy body is an accumulation of protein in neurons. Both Parkinson's Disease and Lewy Body Dementia are disorders of Lewy bodies!

Lewy Body Dementia is an umbrella term that includes both Parkinson's Disease Dementia and Dementia with Lewy Bodies. If the parkinsonism symptoms (stiffness, rigidity, tremor) preceded the cognitive symptoms by a year or more -- and it sounds like that's the case for your husband -- then the term to use is "Parkinson's Disease Dementia (PDD)." (Many - most? - people with PD develop PDD.) If the cognitive symptoms or psychosis occurred first, then the term to use is "Dementia with Lewy Bodies (DLB)." Again, both PDD and DLB are Lewy Body Dementias.

lbda.org used to have a good explanation of this but I hunted for it yesterday for a local support group member and couldn't find it any more.

Robin


Mon Oct 18, 2010 12:23 pm
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Location: WA
Post Re: Which came first, the Parkinson's or the Lewy body?
In my husband's case, I noticed the PD symptoms first: Muscle stiffness, slightly stooped posture, increasing difficulty turning himself in bed. In retrospect, however, I can see that he was having visuospatial problems and executive dysfunction. He seemed unable to learn new procedures or devices and his ability to plan and organize was impaired. His memory was unaffected until later in the disease process. Everyone with LBD is a little different but this was our experience. He was diagnosed with PDD in 2005, changed to probable LBD in 2007. His latest neuro says it's LBD. The noticeable symptoms began by at least 2002 and possibly as early as 2000.

We did not seek earlier medical treatment because he was in complete denial. Only after our daughter-in-law, a neurosurgeon, suggested he see one of her colleagues did he agree to go. And then he would not allow me in the room with him, so I have no idea what transpired. I know they did some cognitive testing, which he said he 'passed with flying colors'. I was secretly doubtful, since they recommend his starting a dementia medication [which he refused]. In 2007 he did start the Exelon patch, which helped initially. He is still on that as well as Stalevo, for the PD.

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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.


Mon Oct 18, 2010 12:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Which came first, the Parkinson's or the Lewy body?
Welcome Roxy. This must be especially difficult with your husband's young age. I hope you come to the forum for lots of support and hope you have support at home as well. 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.


Mon Oct 18, 2010 1:37 pm
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Joined: Fri Oct 15, 2010 6:41 pm
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Post Re: Which came first, the Parkinson's or the Lewy body?
Thank you for all the replys, I appreciate them all. I also look back and see that my husband had cognitive problems but I did not realize it at the time. His neuro said the dementia can be almost undetectable in the beginning. The dementia has overwhelmed us. For us it is more difficult to deal with then the movement problems.

thanks again
roxy


Mon Oct 18, 2010 7:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Which came first, the Parkinson's or the Lewy body?
Roxy, you are so right. The mobility problems are nothing compared to the just plain weird behavior we have to deal with as well as the loss--the real loss--of our LOs as we knew them.

_________________
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.


Mon Oct 18, 2010 7:42 pm
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Location: SF Bay Area (Northern CA)
Post Re: Which came first, the Parkinson's or the Lewy body?
Yes, the only good thing about the dementia is that the demented person is largely unaware of how bad his/her state is.


Mon Oct 18, 2010 10:18 pm
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Post Re: Which came first, the Parkinson's or the Lewy body?
Roxy,
Welcome, sorry for the need !
As you said your husband had some cognitive issues and you didn't realize, this is often the case and that's what makes it so hard to determine what comes first for some, I know my husband also had some mild cognitive that was just chalked up to many reasons age, depression, lack of something to do........When the Physical issues came into play that's when I sat up and really took notice !

I do hope you visit often here as you will learn, we have so many great posters.

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Irene Selak


Tue Oct 19, 2010 10:12 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Which came first, the Parkinson's or the Lewy body?
Since I didn't see any posts from the 'hallucinations first' group, I'll chime in. My husband had minor dizziness for several years which was not definitively diagnosed. The major middle of the night hallucinations which began in Feb 09 sent me looking to the web for an answer. We finally found a knowledgable neurologist and a diagnosis in August of 09. He still has almost no tremor or physical symptoms. He does have daily delusions, hallucinations, and now dementia. Seroquel at night helps.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Fri Oct 22, 2010 10:23 am
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Joined: Sat Oct 06, 2007 4:28 pm
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Post Re: Which came first, the Parkinson's or the Lewy body?
Leone, we are mingled with the others but it does happen. I don't post often because my LO is not in the battle anymore. I had a neurologist walk out of his office after raising his voice at me saying, "He does not have Lewy Body, I say its strokes. You do not need a doctor, yu have the internet!". All this because Mr Bobby did not have Parkinsonisms.

Mr Bobby was ten years [or more] into the symptoms you describe. The parkinsonisms were not extreme or pronounced except when he was taking large amounts of meds to control the primary symptoms. He was finally dx post mortem at Mayo Clinic in Jax. The clinical observations and the post mortem dx were identical. We accepted the hallunations as long as they were friendly people but when they became violent, I had other kindly physicians who let me be the judge of when and amount of meds to keep things under control. It was a fine line to hold the bad times at bay while still allowing him to see the good visions and still live a life of recognizing our normal existence. You see, if I wiped out the hallucinations, all he could see because of his total blindness, was a black world in which he would beg me to turn on the lights so I gave him what I felt like was the most comfortable for him and we mingled each day with these other people in our house... he knew we could not see them and we called them "his people". I watched closely for the beasts and red faced giants to appear and I would zap them with seroquel.

So, yes, it is not necessary for the parkinsonisms to be first but the only way you or others will ever know for sure is to arrange for and get a final post mortem diagnosis. I am thankful that I know and I can spread the word with answers to others and know that it is not just a guess. The knowledge helps others with a more probable dx so the correct treatment can be offered.

Good luck as you continue to care, Dorthea

[Robin suggested after my report from The Mayo Clinic that I should make my signature "Impostor no more" but I am still using the one Mr Bobby used to introduce me to his people. ] DrP

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Fri Oct 22, 2010 2:26 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Which came first, the Parkinson's or the Lewy body? -
Dear Dorthea:

Thank you so very much for your kind reply. Dale has a long history of sleep walking. His bipolar son (44) died in prison last year as a result of mismanaged meds. The son's 10 year old daughter is autistic. I suspect there is a genetic connection between all of these conditions.

Dale had dizziness for about six years - during which time he saw some six neurologists and not one was able to give a definitive diagnosis. Most wanted to give him Cymbalta for anxiety.

Our neurologists have also allowed me to give him Seroquel when needed - but I recently was made aware that Seroquel does not treat the delusions, just the hallucinations. In Dale's case, the two are combined. He sees children as well as men and women in our house regularly. He will set the table for dinner and ask how many of them are staying to eat with us.

Dale is not physically disabled. He continues to work out in our gym. However, his confusion prevents him from doing many things like driving.

Would there be an advantage to arrange a visit to Mayo in Jax? We live in Ocala, FL.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Oct 23, 2010 10:45 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Post Re: Which came first, the Parkinson's or the Lewy body?
I think I understand what you're saying, Leone. My husband still thinks there are a lot of people in the house [delusion] but he can no longer describe them in detail [hallucination] as he could before the Seroquel. And lately he doesn't vividly see a 'kid sitting in the corner' or 'water on the floor' as he did before. But, as you say, the many delusions are constant.

_________________
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.


Sat Oct 23, 2010 10:52 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: Which came first, the Parkinson's or the Lewy body?
Leone,
Definitely go to Mayo Jax. I suggest seeing Dr. Jay VanGerpen in Neurology. Dr. Tanis Ferman is there too...she might be in Psychology or Psychiatry.
Robin


Sat Oct 23, 2010 11:43 am
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