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 Sinemet - physical incapacity vs. increased hallucinations 
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Sinemet - physical incapacity vs. increased hallucinations
Thanks, Robin, for your response.

In our little city, we have the best neurologist available for Dale's condition. Dale contacted 6 neurologists in the surrounding area before I got involved. After I did some research on the web, I talked with another 2 on the phone. My impression is that their knowledge of this condition is limited and therefore, our options are limited. I plan to talk with another neurologist in the same office on the next appointment.

I would appreciate hearing from others about the value of Sinemet for their Lewy Body loved ones. If the Parkinson's symptoms are not debilitating, is Sinemet desirable? In what dose?

When the delusions and hallucinations are increasing, should the Sinemet dose be decreased?
Are we risking more physical problems by decreasing the Sinemet dose?

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


Wed Oct 27, 2010 5:55 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: Sinemet - physical incapacity vs. increased hallucinatio
For the benefit of others, here was Leone's original post:

Dear Robin:

This is just a bit off subject but I'm hoping you'll respond. Dale (75) was diagnosed in Aug 09. He complained of dizziness for about 6 years. Then, in early 09, he had severe hallucinations at the end of January 09 which continued.

He has no tremor and does not need a walking aid. He has some difficulty rising from a chair and he sort of falls into a chair rather than sitting but his physical symptoms are minimal. He still works out in his home gym.

However, the delusions and hallucinations have recently become much more of a problem. He takes Sinemet 25/100 3 times a day and Seroquel 100 before bed. I think the Sinemet is causing problems rather than helping him but his neurologist argued with me and at first, she agreed to allow me to reduce the dose but then insisted that he be back on the full dose.

My question is, "What are the chances.... Will he become physically incapacitated without the Sinemet - or is that something we can predict?" I really hate the delusions and hallucinations (especially Capgras). He has never been violent or difficult. He is a mild mannered man.


And here was my reply:

Leone -
Some do become quite incapacitated without Sinemet. Some experience no physical difficulties without Sinemet. In some, the dose can be reduced enough to avoid triggering psychosis. I suggest you find a neurologist that you trust.
Robin


Wed Oct 27, 2010 6:03 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: Sinemet - physical incapacity vs. increased hallucinatio
Leone -

I suggested a different MD because it doesn't seem that you have a good working relationship with the current one. This is not your fault.

What about taking your husband to Mayo Jax for a consultation. Both Jay Van Gerpen (neurology) and Tanis Ferman (psychiatry?) are there.

For a terrific explanation of this motion/emotion balance, or motion/psychosis balance, read "Mind, Mood, and Memory." It's available on NPF's website at parkinson.org. I've also posted notes from the booklet here on the Forum.

You can also see what others have posted in the past about Sinemet by starting a search here:
search.php
(type in the word "Sinemet" and hit Search)

You will find multiple answers to your dosage question that way.

Robin


Wed Oct 27, 2010 6:08 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Dear Robin:

Going to Mayo Jax is a trip of two hours each way and so far, I have resisted it mostly because I am 75 and I don't want to do that much driving. I'm at an age when my driving is limited to the store, the bank, and church. :lol:

I am not convinced that a diagnosis in a one of a kind meeting would be beneficial. Even with a 'more accurate' diagnosis, I would still need to come back to the local MD who might feel offended that I wanted another opinion. Up to this point, our relationship with her has been very good. As I wrote in another post, I will arrange to meet with another MD in the office. We have already met a couple of times with him. This is a small bump in the road.

However, I will appreciate input from others here. I tried to access all the 'Sinemet' entries and most just assume the drug is essential for LBD. I guess I'm not convinced.

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


Wed Oct 27, 2010 7:44 pm
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Stalevo [similar to Sinemet] has kept my husband mobile and that is very important to both of us. We'd rather live with the hallucinations. Decreasing the Sinemet is not likely to do anything about the delusions, at any rate. But if Dale doesn't have stiffness, it may not be important for him.

_________________
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.


Wed Oct 27, 2010 7:59 pm
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Leone, I too am wondering about the benefits of Sinemet versus the increase in hallucinations/delusions. Del has been taking Sinemet since 1999. A long time. He has problems with movement that the sinemet helps somewhat. He gets more help from his Deep Brain Stimulators that were implanted in 2005.

When he stated falling more, a neuro who was filling in for our Doc (and we asked to see anyone as the falls were increasing rapidly) upped his sinemet from 1 tab (25/100) 5 times a day to 1 tab 6 times a day. The hallucinations and the disinhibited behaviors jumped to alarming levels so it was decreased again and the behaviors waned.

Our neuro says that it is a fine line to walk. You can choose more physical movement, but that movement is often more dangerous because of the disinhibited, impulsive behavior, or you can choose a little less mobility and less delusions/hallucinations.

As it turned out, he was falling more because the Pulse Generator on his left side (Deep Brain Stimulator) had stopped working altogether. It had been checked just a few weeks prior to the behavior change and had been working just fine. We knew it was getting close to replacement though, but I didn't connect the dots.

I think we should look at making some changes to the sinemet...maybe half pills more frequently. That way we might not have all of the "off time" we are having now.

It's truly a crap shoot. Ya pays yer money and ya takes yer chances.

That's our story.

Nan


Wed Oct 27, 2010 8:06 pm
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
The point of a trip to Mayo would not be for a diagnosis but would be for an expert's opinion as to how to treat your husband's symptoms.


Wed Oct 27, 2010 8:53 pm
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
I'm sure it's a 'fine line to walk.' In Dale's case, he has not had numerous falls. He is still mobile.

I'm aware that Sinemet treatment is the 'gold standard' for all who suffer this disease and I suspect that the medical people at Mayo will tell me that it is absolutely necessary. I'm not looking for additional medical opinions that give me 'the party line.' Dale does not have typical Parkinson's.

What Dale has had from the beginning is delusions and hallucinations... and they are becoming more of a factor in our lives. We aren't doing anything to treat those. Instead, we're giving him a drug that makes them worse.

I would like to hear from anyone who has had the experience of cutting back the Sinemet dose in order to reduce the hallucinations.

Does it make sense to treat a symptom that barely exists with a medicine that causes something worse?


Frankly, I would rather he was less agile and had his mind back.

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


Thu Oct 28, 2010 8:09 am
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
About the Mayo Jax consultation recommendation. .......

My concern is how do they test 'what Dale needs'? He can give plenty of answers to their questions. He knows colors, numbers, ... in fact, his memory is often better than mine. They would watch him walk down the hall. They can take blood. We already do that here. He takes a thyroid supplement based on that.

What they cannot test is delusions and hallucinations..... How would they? And that's what they cannot adequately treat as well.

In fact, I am frustrated and here's why......

Dale's bipolar son (44) died in prison last year because of miss-handled meds. In fact, he was there as a result of a bipolar episode that turned ugly. Dale's granddaughter is autistic. It's a brain problem.....

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


Thu Oct 28, 2010 9:22 am
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Dale just told me his 'dreams' are 'flash-backs.' I hadn't thought of them that way. We haven't used the word much since the 60s. I wonder if drugs like Sinemet are causing a similar 'trip' in the brain.

One of my foster children was a teenager who suffered from 'flash-backs' because she had been on drugs.

flash·back (flshbk)
n.
1. An unexpected recurrence of the effects of a hallucinogenic drug long after its original use.
2. A recurring, intensely vivid mental image of a past traumatic experience.

The American Heritage® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved.

--------------------------------------------------------------------------------
Flashback
The re-emergence of a traumatic memory as a vivid recollection of sounds, images, and sensations associated with the trauma. The person having the flashback typically feels as if they are reliving the event. Flashbacks were first described by doctors treating combat veterans of World War I (1914–1918).
Mentioned in: Stockholm Syndrome
Gale Encyclopedia of Medicine. Copyright 2008 The Gale Group, Inc. All rights reserved.

--------------------------------------------------------------------------------
flashback,
a phenomenon experienced by persons who have taken a hallucinogenic drug or had psychologic trauma and unexpectedly reexperience its effects. This is also suffered by patients with posttraumatic stress disorder.
Mosby's Medical Dictionary, 8th edition. © 2009, Elsevier.

--------------------------------------------------------------------------------
flashback
Psychology A non-drug-related repetition of frightening experiences or images, which may affect ex-soldiers, as is well-described in veterans of the Vietnam conflict Substance abuse Hallucinogen persisting perception disorder an involuntary recurrence of some aspect of a hallucinatory experience or perceptual distortion often with negative overtones and accompanied by fear and anxiety; flashbacks are an adverse effect classically associated with psychedelic drugs–eg, LSD and PCP, which occur days to wks after the last dose; flashbacks are common in heavy users and disappear with time. See LSD, PCP.
Flashback-hallucinogen persisting perception disorder
A The re-experiencing, after discontinuating use of a hallucinogen, of 1+ perceptual symptoms experienced while intoxicated with the hallucinogen, eg geometric hallucinations, flashes of colors, macropsia, micropsia, etc
B Symptoms in A cause significant distress or impairment of social, occupational, or other important function
C Symptoms are not due to a general medical condition, or otherwise accounted for by another mental disorder
*DSM-IV™ American Psychiatric Association, Washington, DC 1994
McGraw-Hill Concise Dictionary of Modern Medicine. © 2002 by The McGraw-Hill Companies, Inc.


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


Thu Oct 28, 2010 9:36 am
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Leone - I just want to point out a few things that happen when immobility issues start cropping up:
- falls
- not being able to get up from falls and being "dead weight" for others to have to pick up
- getting "stuck" in place (which can end up in a fall too)
- transferring from bed to chair, getting in bed, etc.
- having to be totally lifted by other people to be transferred
I know all of the meds issues are a delicate balancing issue, but if I'd had to make a choice with my dad, I'd do everything to keep him as mobile as possible. Once they are no longer safely mobile, life really changes in ways you just can't imagine, like needing to move your LO to assisted living or having to hire people to come in to help or do the transferring, etc., or having to call people to get him off the floor.
I know the cognitive issues are HUGE, frightening and difficult to deal with, but if your LO is still mobile and balance hasn't yet become an issue, you have ONE major issue to deal with and not TWO yet.
My dad went from poor mobility and falling to totally unable to walk overnight. Even after weeks of rehab, he never walked again once he was out of rehab, making it impossible for him to live at home. I don't mean to bring you down, but to point out how this disease can go, and eventually mobility will be an issue for, I think, everyone who suffers from it. I wish you all the best in trying to deal with a very difficult situation. Lynn

_________________
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.


Thu Oct 28, 2010 10:57 am
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Thanks, Lynn. I am not uninformed about the Parkinsonian aspects of LBD. I am aware that falls are a major concern for many. Dale had dizziness beginning more than 5 years ago. He has fallen three times. 3 times in that period of time is not a major problem.

Dale has been an amateur weight lifter. He still works out in our home gym. He used to sell Nautilus Equipment to the military.... among many other businesses we owned. He is an attorney. He knows what is happening to him and he is not pleased. We talk about his condition regularly. His mental problems are a far greater concern than his physical at this point.

In fact, all of the issues you raise about falling can be said of many elderly people who do not have LBD. My father passed away in 2002 at the age of 92. He fell often and my mother would just bring him a chair. They had to call 911 too often. I do not think giving Sinemet to him would have helped him or been appropriate in his case. And yes, he died after some period in bed.

And no, I am not frightened by Dale's delusions and hallucinations. They started in January of 2009 so we've lived with them for about two years. However, Dale has been a sleep walker since his 20s. I assure you that his crossing the street in the middle of the night in the middle of a dream is a cause for concern! He was glad for friendly neighbors who brought him back home.

My major issue is with drug companies that push medicines on doctors - and even pay them 'fees' in order to make sure their patients use the product. There is no good reason for Dale to be loaded up with Sinemet as 'insurance' that he won't be in a wheelchair at some point. That will probably happen anyhow. I doubt that any of the LBD patients have been prevented from been incapacitated because they took Sinemet.




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


Thu Oct 28, 2010 1:15 pm
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
I'm convinced that my husband is still mobile today because he was put on Stalevo [carbidopa/levodopa/entacapone] in 2005. However, I do agree about too many meds being given that may or may not be effective. One size does NOT fit all, in Lewy or in most other chronic diseases. But let us not throw out the baby with the bathwater here. :P Hugs, Pat

_________________
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.


Thu Oct 28, 2010 2:10 pm
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Pat, dear.... I value your opinion because you are ahead on me in this process. Your husband is 6 years older than we are - and way ahead of Dale in terms of LBD since you have watched his decline since 2005. I think you have some serious credibility here! Thanks so much for your input.

My plan is to watch Dale carefully for any serious physical changes with a lower dose of Sinemet. I had the permission of the neurologist to cut the dose in half before and she changed her mind. I'm not going that low this time but I just can't justify giving him a full dose of Sinemet when he is in the midst of a delusional episode and struggling with reality issues. To me, that just doesn't make sense.

Stay with me.... :P I'll keep you posted.

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


Thu Oct 28, 2010 2:33 pm
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
I suggest you read "Mind, Mood, and Memory" as I think it will introduce you to what the "party line" is. (The "party line" is NOT to give everyone with DLB Sinemet.)


Thu Oct 28, 2010 2:43 pm
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