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 New member from FL 
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Joined: Wed May 26, 2010 12:53 pm
Posts: 12
Post New member from FL
Thank you all for having me here. I have many questions about this confusing disease.

My dad, at 68, was taken to a psychiatric facility last October, where he was diagnosed with Schizophrenia and put on neuroleptics, which resulted in a severe reaction of immobility, dysphagia requiring a feeding tube, loss of 25 pounds in just a few weeks, and a recommendation for hospice by his (new) doctor at the nursing home. Next, my father was diagnosed with LBD and/or FTLD dementia A CAT scan revealed "impressive"bilateral mild diffuse atrophy throughout his brain. An EEG revealed brain activity that, when he was awake, was characteristic of someone in early sleep, which the administrator remarked to be indicative of a late stage dementia. A few months later, the diagnosis was finalized as LBD. As I read through stories and tentative stages on this site, I find myself more and more puzzled. See...dad has always had motor irregularities such as hand and arm jerking and stumbling. He has had persecutory delusions, agitation, and paranoia all of his life (based on information from my mother, his sister, and my older siblings, with examples given). Once, over thirty years ago, he went through a period of thinking that his wife, my mother, was actually HIS mother. There are many, many more accounts of bizarre social behavior from early on. Dad, although he was a mechanical engineer, had very poor depth perception and spatial skills. He also had traits of OCD, with obsessions (building a deck, genealogy) that lasted for years, when he could talk of almost nothing else but these activities. Really, he seems to fit the criteria for Schizophrenia or Asberger's based on his lifelong behavior, except that his hands constantly shook and he fell a lot. He was on no medications.

The paranoia and delusions got markedly worse in '95, when dad started to believe the government was spying on him, that the neighbors gave him "Scarlett Fever," or put itching powder in his clothes, that they broke in nightly just to steal a soda, that they poisoned his water (which he had cut off), etc, etc. At this time, everyone was concerned about him, but dad was very aggressive and, as always, had no insight into his condition. We called adult protective services and the police, but both said dad was "in a gray area," where he was taking care of himself enough and was not directly a harm to himself or anyone else. Because he was in his mid-fifties, dementia wasn't considered.

Years later, dad moved to his birthplace in NC with hopes to buy the family farm back from his sister. While he lived in NC, his delusions and paranoia became dangerous. He started to drive around with guns in his car, he showed up to a church to get married to a women that didn't exist, he started to follow women around, and he threatened a tax assessor who showed up at his rental home in the country for a routine visit. Dad wandered the woods at night, armed, to protect the house from his neighbors. He also talked about his guardian angel that he saw as a "flash of light" throughout the night.

Ok, so, his mental stated was obviously extremely impaired, but physically, he was still ok. Also, his memory was not terribly bad at all. Last August, he started buying nothing but milk at the grocery store. I think this is when his problems swallowing began, that is, before the antipsychotics and his admission.

To rush this long post forward, he ended up on a PEG tube and incontinent of urine and feces over a period of roughly two months. Now, jump to the present day, and he is still completely incontinent, but the feeding tube is no longer necessary, and he eats lots of solid food. He is calm and very sweet now, with no evidence of aggression or paranoia, although he does have harmless delusions. He usually doesn't remember visits, and he has a lot of difficulty identifying his children and relatives. For instance, he looked at me and said I looked like his daughter [blank], not that I was [blank]. His vocabulary has decreased tremendously, and he cannot concentrate on anything for more than 15-30 seconds. He is very physically hyper, and displays unilateral tremors in his hands and feet on a sporadic basis.

So....dad does fit the profile of a LBD patient now, but I personally believe that he has had some sort of neurodegenerative disease his entire life. For a while, back in the 80's, my mother thought that he might have Huntington's Disease, but that has been ruled out. Also, this early onset dementia is genetically dominant: his mother followed a disease course much like his, and she died in a nursing home at 61 of pneumonia. She reportedly was "crazy" since at least her early 30's. Dad's maternal grandmother died at 40 of unknown causes, but we do know that his mother's sisters all died relatively early and had a reputation for odd behavior.

I can't place any one dementia that explains all of the history, and it's frightening and frustrating. I believe there may be some as yet unidentified familial Lewy Body type of early onset dementia. With all of my afflicted family members, psychosis was the first and main symptom, and seemed to last for decades before the physical atrophy began. Although I should note, that everyone afflicted was described as "clumsy" and "twitchy" from an early age (late 20's - early 30's).

Does anyone here have any experience with something at all like this, or have any theories?

I apologize for the monster first post. There's so much to explain....I could have gone on a lot more!

Thank you for hearing me out. It helps.


Mon Jul 05, 2010 1:43 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Amazing that your father is still alive! Did they take him off the neuroleptics once the NMS presented?

The MDs must love working with you as you obviously pay attention to symptoms and details.

I hope you can find a medical institution (Mayo Jax has a genetics team looking into all of the Lewy body genetic mutations) interested in studying your father and other family members. (An SNCA variant runs in some DLB families; it's very rare.) Sounds like we could learn a great deal from your family. I encourage you to sign your father up for brain donation as that will be the only way to confirm the diagnosis.


Mon Jul 05, 2010 1:53 pm
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Joined: Wed May 26, 2010 12:53 pm
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Thanks for your reply! Dad is actually in NC with his sister as PoA, so she calls all the shots. She took advantage of his situation, but that's another long story that I won't go into at the moment. We are fighting a court battle for guardianship of dad. His children definitely would like an autopsy done.

He was taken off the antipsychotics about a week after his ER admission the day after he was released from the psych unit. He had uncontrollable diarrhea, and had soiled himself and everything around him at his home. This hospital visit led to the feeding tube and nursing home admission.

We can't really talk to his doctor because his sister is blocking us. She makes all the decisions. Again, a really long story where she manipulated his paranoid tendencies by telling him that his children want to make him move to Florida, and other garbage. Technically, though, she's not really doing anything wrong so, by law, we may not gain guardianship.


Mon Jul 05, 2010 2:03 pm
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Joined: Wed May 26, 2010 12:53 pm
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robin wrote:
(An SNCA variant runs in some DLB families; it's very rare.) Sounds like we could learn a great deal from your family. I encourage you to sign your father up for brain donation as that will be the only way to confirm the diagnosis.


Very interesting, thank you! I'm going to look this up.


Mon Jul 05, 2010 2:05 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Welcome to the forum, rkc. It sounds like your father has been through the mill with this disease, as many of our loved ones have. My husband developed NMS from Risperdal which he was given at a nursing home. Fortunately, once taken off, he recovered to baseline. Print off some of the LBDA fact sheets and send them to your father's caregiver to have on hand for physicians or EMTs. Rare is the physician who knows anything about LBD! [Look under 'Learn about LBD', LBDA Resources, Publications, Fact Sheet]

You will find a great deal of knowledge, support and encouragement here. I wish you and your family well.

_________________
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 Jul 05, 2010 4:12 pm
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Joined: Wed Jun 09, 2010 4:53 pm
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Location: Davis, CA
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Dear friends,

I need a little help with some of the acronyms included in this message string, such as NMS and SNCA.

RKC, thank you for joining the forum and sharing your story. Your father's illness sounds extremely complex, and I'm sorry that his sister is preventing you from talking to his doctor. That must be terribly frustrating.

I am also interested in mental illness and how it might or might not contribute to LBD. My dad has been depressed and paranoid much of his life, but managed to be successful. It sounds like your dad might be bi-polar. Has anyone ever suggested that?

Now in his early 90's and plagued with LBD, he remains paranoid, depressed and is also now very, very anxious. He has hallucinated for the last four years, but two falls, a hospitalization and nursing home stay have increased all these problems.

Is his sister one of the family members who might be similarly afflicted?

I hope you find the strength to get though this and urge you to use this website. It's been so helpful to me.


Mon Jul 05, 2010 7:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Amanda, NMS is neuroloeptic malignant syndrome, a very serious response to antipsychotic [neuroleptic] medication, such as Haldol and many others. In my husband's case it was Risperidone [Risperdal]. SNCA stands for an alpha-synuclein gene which I know nothing about but Robin probably does.

_________________
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 Jul 05, 2010 7:09 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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RKC -
There are a couple of others on here who have feuding families, fighting over guardianship, etc. So, unfortunately, you have some company there. There might also be a NC medical institution interested in your father. Duke ended its brain donation program over a year ago, so that wouldn't be a good spot.
Robin


Mon Jul 05, 2010 8:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Welcome, sorry for your need to be here, and like many others, you do have your I hope you'll use the forum and chat for support as well as information. There are lots of very understanding people here! Lynn


Mon Jul 05, 2010 10:51 pm
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Joined: Wed May 26, 2010 12:53 pm
Posts: 12
Post Re: New member from FL
Thanks all. :)

The NIH is conducting a study on the biomarkers of Parkinson's Disease (and Lewy Body Disease, by extension) If anyone suspects a hereditary link in their family, it might be a good idea to check it out:

https://pdrisk.ninds.nih.gov/


Sat Sep 25, 2010 6:09 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 FL
Unfortunately the NIH study doesn't pay for a lot of the expensive genetics tests. We have a local support group member who has been looking in to this for three years or more. She has approached two major medical research facilities, and neither has the funds to properly study the family.


Sat Sep 25, 2010 11:42 am
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