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 Medicines For Lewy Body Dementia 
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Joined: Wed Mar 12, 2008 2:28 pm
Posts: 1
Location: Ada, Michigan
Post Medicines For Lewy Body Dementia
My wife seems absolutely fine when she wakes up at 10 or 11 pm, and has a sandwich and coffee. We both wonder why she does not feel as well when she wakes up in the morning. Her neurologist never suggests changing or altering her medication--Stalevo, Sentimet, Seroquel, Remeron. I am wondering if perhaps she is taking too much of these drugs; will they have an adverse effect. During the day she is lethargic at best; sometimes she remains in bed most of the day; however, at 10 or 11 pm, she is a completely different person. If anyone could give me an explanation, I would appreciate it.

Roger Plafkin

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Roger Plafkin--Plafkin Farms--1-616-676-0590--plafkin@juno.com


Last edited by plafkinfarms on Sat Feb 20, 2010 8:32 pm, edited 2 times in total.



Sat Feb 20, 2010 12:54 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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My husband's neurologist explained it as a malfunction of the part of the brain that determines day/night. My husband is at his most alert at 4AM.


Sat Feb 20, 2010 1:39 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Roger -

Day/night can be confused in many dementing illnesses.

You might consider a meal clock. (Do a search of past posts to find a link to it.)

You might consider "sleep hygiene," which are non-medication approaches to ensuring someone is tired.

You might consider a sedating medication at night to help with sleep. Best to refer to Boeve's "Continuum" paper for the proper treatment regimen for this symptom and other LBD symptoms.

Robin

PS. Generally speaking, it's not a good idea to post your phone # and email address on a public forum. Spammers/web crawlers are certainly looking for email addresses. Who knows who may be interested in your phone #.


Sat Feb 20, 2010 2:31 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Roger, Welcome!

Sleeping long hours is a common complaint of many caregivers but the way I look at it they are peaceful and not being aggitated and combative.I could also be part of stage with the disease! Have you spoken to her Doctor about this yet?

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Irene Selak


Sat Feb 20, 2010 11:05 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Oh yes forgot!
For future posting please no personal infomation on the forums, we try to keep it safe but it isn't always possible and there are too many people lurking around on the Internet and not for the same reasons we are here,

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Irene Selak


Sat Feb 20, 2010 11:09 am
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Joined: Sat Jan 03, 2009 2:59 pm
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One more time here.
Roger please go to your post and edit it and remove your personal infomation, if you need help with this please let me know !
Just want to keep it safe here!

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Irene Selak


Sat Feb 20, 2010 11:11 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
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Have any of you tried using the lights that people use for SAD? I wonder if those would help? I start using mine in late Aug. because at the 45th parallel, that's when SAD starts kicking in for many people. By Dec. 1 I don't need it. Has anyone tried this yet with their LBD LO? Lynn


Sat Feb 20, 2010 10:04 pm
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Joined: Sun Dec 20, 2009 7:43 pm
Posts: 54
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Remeron was a terrible drug for my mother who has LBD. Made her feel terrible. One of the listed side-effects of this drug is drowsiness.

Perhaps you could try her on another antidepressant. She may pick right up with the EMSAM antidepressant patch, which is the drug Selegiline, a MAO-B inhibitor that prevents the breakdown of dopamine.

LBD and Parkinson's are both Lewy body diseases. The causes for Parkinson's disease or neural-degeneration are probably related to mitochondrial malfunction, elevated oxidative stress, apoptosis, excitotoxicity, and inflammation. [1-4]

You may consider asking your doctor about opinions on these supplements/medications :

Dynacirc CR (Generic name - Isradipine) - 5mg
May delay destruction of dopaminergic neurons by preventing excitotoxicity.

Selegiline - 6mg
Antidepressant, slows breakdown of dopamine.

Creatine - 5mg
Boosts mitochondrial function.

CoQ10 – 1200 mg
Boosts mitochondrial function.

Acetyl-L-carnitine – 250 - 500 mg
Antioxidant specifically useful in Parkinson's disease [5].

Vitamin D – 1000 mg
Important antioxidant - therefore brain protecting activity.

Inosine - 5000 mg
Increases urate levels. Urate is emerging as a predictor of both risk and progression of Parkinson’s disease.

Ibuprofen
Anti-inflammatory drug.

R-Alpha Lipoic Acid - 50 mg
Make sure you get the R form. Antioxidant that can pass through cell membranes. Works both inside and outside cells.

DHA from algae (omega 3’s without the mercury from fish oil) 900 mg
Anti-inflammatory.

N-acetyl cysteine
Antioxidant that is a precursor of glutathione, the body's most important antioxidant.

----------------

[1] Fernandez-Espejo E. Pathogenesis of Parkinson's disease: prospects of neuroprotective and restorative therapies. Mol Neurobiol. 2004 Feb;29(1):15-30.

[2] Johnston TH, Brotchie JM. Drugs in development for Parkinson's
disease. Curr Opin Investig Drugs. 2004 Jul;5(7):720-6.

[3] Bonuccelli U, Del Dotto P. New pharmacologic horizons in the treatment of Parkinson disease. Neurology. 2006 Oct 10;67(7 Suppl 2):S30-8.

[4] Beal MF. Mitochondria, oxidative damage, and inflammation in Parkinson's disease. Ann N Y Acad Sci. 2003 Jun;991:120-31.

[5] Steffen, V., Santiago, M., de la Cruz, C.P., et al, Effect of intraventricular injection of 1-methyl-4- phenylpyridinium protection by acetyl-L-carnitine. Human Exp Tbxicol 14:865-871,1995


Sat Mar 27, 2010 10:13 pm
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Joined: Tue Jan 05, 2010 5:27 pm
Posts: 146
Location: Fl.
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The hospice doctor put my mom on Xanax for anxiety. Has anyone tried that and have they had their LO just out of it? I mean I am wondering if it is the Meds that is making her unable to walk or her natural decline? SHe is also on Lortab for pain. Theses are new meds they added. She is also on Seroquel and arecept. We stopped all the heart and blood pressure and cholesterol meds. No long term meds.
Tammy

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Sun May 16, 2010 12:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Seroquel affected my husband that way, Tammy, with just one 25mg dose, so he can't take it, although many Lewys take it with good results. I've been tempted to try Xanax for his anxiety/agitation but have been told by some that it can increase anxiety in LBD patients. Temazepam has that paradoxical effect on him if it's given any time except just before bed. It's such an individual thing. And it's always hard to know how much to sedate someone to keep the agitation and anxiety level down.

Don't be afraid to speak up--as medical POA you have the right to refuse any treatment or suggest holding a med to see if there is any improvement. Make sure the doctor is aware. It could be that your mother is just experiencing decline. I've noticed that decline seems to go in spurts rather than gradually. My husband seems to stay on a plateau for several months then slide down in a matter of a few days to another, lower, plateau. Blessings to you! --Pat


Sun May 16, 2010 12:22 pm
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Joined: Tue Jan 05, 2010 5:27 pm
Posts: 146
Location: Fl.
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I understand Pat. I have to phycially pick her up tp get her to the bathroom now. I am just going to have to start changing her in bed. I hand fed her this morning. SO scared she would choke while she was eating. Having to keep telling her to chew and swallow. The Hospice doctor is coming out this week to seeher, and I am going to talk to her about it. Also am going to ask for more help with her. It is a hard road but harder for her. I keep telling myself that. Put myself in her shoes.
Thanks ,
Tammy

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Sun May 16, 2010 1:01 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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Tammy -

Has your mother taken Ativan before? Xanax and Ativan are very similar medications. They can cause paradoxic anxiety but they work in many people. These medications are sedating so perhaps that's why she can't walk. Lortab and Seroquel are sedating as well.

Check side effects for medications on a website such as rxlist.com.

Robin


Sun May 16, 2010 1:18 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Azilect
Does anyone know anything about the use of this with Seroquel and Sinemet? It is for balance and freezing


Wed May 26, 2010 8:30 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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Which medication are you talking about using with Sinemet and Seroquel?

Youg might check Boeve's "Continuum" paper to see what he says.


Wed May 26, 2010 9:02 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post 
Robin, I'm asking about the use of Azilect with Sinemet and Seroquel


Thu May 27, 2010 2:20 am
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