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Joined: Sun May 13, 2012 4:24 pm
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Hi, I'm Andy. My wife has been diagnosed with Parkinsonism, weighted heavily to DLB. She was diagnosed with Parkinson's Disease in 2004, although she had some symptoms earlier. She started with right hand tremor which was controled by the usual PD drugs. But, then in 2006 and again in 2007 she had knee replacements. She had morphine after each surgery. After each surgery she becaume very psychotic. She saw people and hear people who were not there. I won't go into all the problems. The hallucinations went away when she stopped takin Mirapex. But, her PD like symptoms continued to get worse. But, now she could not take anything for it. Nor could she take any opiod type pain medication. Then, about 2 years ago, the hallucination, paranoia, cognitive loss, memory loss all started getting worse. Last year she was put on clozarile, which help the hallucinations a little. It does also decrease the tremor and lets her sleep for 8-9 hours. She is now diagnosed as non-typical DLB.

Everything about her condition seem atypical. I'm wondering if anyone out there has had similar experiences.


Sun May 13, 2012 5:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
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Welcome, Andy, and yes, many of us have had similar experiences - read the postings and you will see that you are among thousands going through similar situations. So sorry for your need to be here. Read as much as you can - info. may aid you through many difficulties and also you will see that you are not alone. Come here often for support! 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.


Sun May 13, 2012 5:37 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
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Welcome to our forum, Andy. Caregiving can be a challenging, lonely road. It is good to know there are others on similar paths. I hope you find this site as helpful as I have.

My husband's first symptoms were cognitive and Parkinsons came later, so we are not quite in your situation. Once you have both aspects of the disease active I think the similarities increase.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun May 13, 2012 5:51 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Hi Andy,
Sorry you've had to join the Forum, but welcome. Nothing about your wife's case sounds ATYPICAL to me. It's very common for people to have these sorts of reactions to surgeries, hospitalizations, and Mirapex. Is your wife receiving any treatment for the dementia associated with PDD (Parkinson's Disease Dementia)? Exelon, for example?
Robin


Sun May 13, 2012 11:43 pm
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Joined: Sun May 13, 2012 4:24 pm
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hi Robin

No, she has not had Exelon. As I mentioned, she is on 50 mcg of Clozarile (Clazapine) and it helps some. She was put on Axilect last year and her psychosis immediately got worse. Several years ago, she was sent to a psychatrist who tried a number of psychosis drugs and none helped. There seems to be a lot of confusion among doctors as to what to call her condition. She has been to 4 neurologists and each has had a different view of her condition. In reading the literature, there seems to be confusion on the terminalogy in general. She is going to see a dementia specialist next month in Dallas. We live north of San Antonio. Her current neurologist does only Parkinsonism. He is calling her diagnosis as Parkinsonism, with a leaning toward DLB. As he put it, she is on the end of a bell shaped curve.

Andy


Mon May 14, 2012 9:48 am
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Joined: Wed Apr 11, 2012 9:32 pm
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Andy...welcome to the group that none of us really wanted to join, but glad you found us. My story is somewhat like yours. My husband was diagnosed with Parkinsons about 14 years ago. His neurologist kept saying ... he was on the end of the bell curve. His only tremor was his little finger, but he had slow movements, soft voice, small handwriting, couldn't get out of chairs, etc. Then 5 years ago he had a surgery and pain medication and we were immediately visited by hallucinations. They went away only to reappear and stay about 2 years ago, then he began having cognition problems, and all of the other symptoms of Lewy's. He takes Stalevo and Sinemet for his Parkinsons, and has tried Exelon and Namenda (which made his Parkinsons and his cognition issues much worse), and takes Seroquel at night to get restful sleep. What you will learn is that there isn't any "typical" Parkinsons or Lewy patient, and there isn't any one medication that works for all, it is all trial and error! My husband is now 78 and I would say he is in late mid stage. Welcome, and know that we all can learn alot from each other. Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Mon May 14, 2012 12:33 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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Hi Andy,

Clozaril (clozapine) is a recommended antipsychotic for treatment of hallucinations in those with parkinsonism. Most LBD experts recommend trying an AChEI first, before proceeding to an antipsychotic. AChEIs include Exelon, Aricept, and Razadyne.

Azilect is a medication for parkinsonism but I haven't heard of anyone with LBD taking it. Sinemet is the parkinsonism medication I hear about most often for LBD.

I think there is lots of confusion in the lay community about terminology. This is probably not helped by confusion in the general medical community about terminology. LBD experts are very clear: it's called DLB if dementia begins at the same time as parkinsonism symptoms or prior to parkinsonism symptoms, while it's called PDD if parkinsonism symptoms occurred at least a year before the dementia symptoms. Based upon what you said above about symptom onset, it sounds like PDD is the correct term. This is explained much better on lbda.org.

Who is your wife's current movement disorder specialist? And which dementia specialist will she be seeing next month? Hope you get some good info from that MD!

Robin


Mon May 14, 2012 12:39 pm
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Joined: Sun May 13, 2012 4:24 pm
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Thanks, Robin

My wife's neurologist is Dr Eric Pappert in San Antonio. The dementia specialist we are going to see in Dallas is Dr Cindy Marshall.


Mon May 14, 2012 2:25 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Andy,
Welcome to the LBDA forums, I am sorry for your need to join us here but I do hope this can be a place of information and some comfort !

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Irene Selak


Mon May 14, 2012 5:58 pm
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Joined: Sun May 13, 2012 4:24 pm
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Carol

Thank you. How do you deal with the hallucinations?

Andy


Tue May 15, 2012 8:23 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
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Andy....thankfully my husband can be talked out of them, and we call them his "Parkinson" people....sometimes we can laugh about them. He told me he thought the people here are handicapped, when I asked why he thought that ... he replied "they don't walk or talk"...I then asked "what good are they?, they don't even clean ..... people that don't help around here don't get fed either"... he will then laugh. So far they are just a bother, they don't seem to frighten him, sometimes they sit in all the chairs so he doesn't have a place to sit, so I go sit on them to get rid of them. Our neurologist recommended to not try anything as long as they are not scary frightening hallucinations, because the side effects of the medication. So we are ok for now.
sometimes you have to agree with their fears, then try to divert their attention to something else, getting them to see your reality doesn't work. I heard somewhere, probably in the forum, the hardest thing for the caregiver is to accept your loved ones reality, making it your own! Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Tue May 15, 2012 8:51 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
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Carol, I love the way you are handling your husband's "people".
Andy, I am interested, like Robin, in WHO you see as a dementia specialist. That medical person is key to appropriate treatment with LBD. I hope you ask him/her if LBD is an area of specialty and interest for him.
I have friends, and the list is growing, who see a neurologist who does more harm than good due to ignorance that they will not admit about LBD.
A flag that keeps popping up for those folks is when the neurologist prescribes multiple meds at one time, or starts at a dosage that is not as low as possible...kind of dives in too fast to treat multiple symptoms instead of taking the "low and slow"approach that LBD patients need. I say this to give you encouragement that if your gut says, "I am not so sure about this doctor or this approach," to follow that gut feeling and keep looking for the right match for you and your loved one.
Take care,
Pat

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed May 16, 2012 11:40 am
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Joined: Wed Apr 11, 2012 9:32 pm
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pat....I just finished your book. And I recommend it for the new members and us "old" ones. The chapter about who your friends really are touched me, that is so true. Lewy is a lonely trip for the caregiver especially when family or close friends aren't nearby. I also ordered the recorded books from the library which was a great idea I got from your book.....Unfortunately, the ability to laugh about the lewy people is getting more difficult for my husband. Today is a bad day. Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Wed May 16, 2012 12:38 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
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Carol,

My mother's doctor also recommended against trying to medicate for hallucinations and delusions because they are not scary and the meds have significant side effects. It is a little strange to go along with her primary delusion, that her stuffed dog is alive, but it actually seems to occupy and calm her. So we don't rock the boat. In fact, I bought it a doll-sized playpen so it would have its own place in my mother's room, and a wire walker basket for it. My mother said the dog likes them!

Julianne


Wed May 16, 2012 12:53 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
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Hi Andy,

I too am new. My husband not officially diagnosed with LBD, however, he has so many of the symptoms. Before I had ever heard of LBD, a friend gave me a book entitled, "Dignifying Dementia," by Elizabeth Tierney. As I was reading it I thought, oh my God, these are the same things my LO is doing. Later I read, "Caregiver's Guide to Lewy Body Dementia," by Helen Buell Whitworth and James A. Whitworth. I was on a roll. These books have given me some of the knowledge I need to converse with his doctor and advocate for the attention we need. Also in my library now is, "The 36-Hour Day, 5th edition," by Peter V. Rabins, Nancy L. Mace. While it doesn't focus on LBD, it has lots of useful information. My latest read is, "Treasures in the Darkness: Extending the Early Stage of Lewy Body Dementia," by Pat Snyder. You will see her name in these forums. All these books have been instrumental in allowing me to present to our medical professionals an informed analysis of my LO's symptoms and activities. I have also been keeping a daily journal on my computer because when I tried to explain the concerns I had about my LO to our first Neurologist, I couldn't really remember all the issues I had witnessed. During this discovery time, over the last approximately three years, my LO had teeth pulled under twilight sleep and cataract surgery. Little did I know the drugs used for both of these procedures were not good for him. A short visit to the hospital in early January for dehydration, and after telling emergency room personnel and those on the floor after he was admitted that he had dementia, he was given Benedryl, Atavan, and Flaggyl, all contraindicated for someone with LBD. He suffered with some phychosis, not knowing where he was, combative, thought the people in the room were stealing from him, etc. All these symptoms gradually went away when I had them remove these medications from his IV, but the experience really brought forward the dangers of this condition. My LO has no other medical issues. The second neurologist we saw readily admitted he did not specialize in LBD and referred me to UCLA. We go on June 11th and pray we will find some answers. Regardless, I will continue to learn all I can about what he's going through, how to help him, and how to ensure we get the medical attention we need. I hope this helps you as you move along on your journey. Again, welcome to the forum.
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Thu May 17, 2012 9:01 am
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