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 Sinemet - physical incapacity vs. increased hallucinations 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
It is certainly a lapse in the signals from the brain and there is no question that the brain is the culprit, not the legs. Of course, Sinemet acts on the brain. But aside from medications [or no medications] I can often 'coach' my husband to move, sometimes one step at a time. Some people hum a march, creating a walk-rhythm to get them started when they are stuck in mid-stride. I think I have posted before that I tell my husband to tell his brain to let his legs walk. This often works best, as he is always convinced there is something wrong with his legs. I tell him 'Your legs are strong', which they are.

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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.


Sun Nov 07, 2010 9:39 am
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Hi Leone,
No, I do not feel that the reduction in sinemet contributed to my husbands fall in any way. He had been on a consistent dose for at least six months or more prior to the fall. His fall was simply a freak accident of getting tripped up with his pants.

I suppose his posture may have been slightly more stooped and he was probably not able to walk quite as far but not significantly. We were working very closely with a physical therapist as we tweaked his med dosage. So we would take away one med dose at a time for about a week and the PT would monitor any changes as we went along.

I'm an RN and I'm guilty of tweaking meds on my own, which I would not recommend. However, it worked for us and I did have a running dialogue with his Doctors as I went along, so I was not totally independent.

He was very in tune to his symptoms and "what kind of a day" he was having. His immobility was in direct correlation with his more confused days. H e was able to tell me in the morning if it was a "good" day. He knew that there were hallucinations, he could describe them at length to me, but up until about 1 week prior to his death, he was aware that they were not real and that no one else were able to see them.

However, when he was on a higher dosage of sinemet, he appeared dazed and couldn't put simple sentences together,which was extremely frustrating to him!

I don't advocate changing meds on your own without consulting a Dr.
I wish you much luck and send prayers your way... It's a very difficult road. My only suggestion is to try to understand what you think he is trying to tell you. We were very much like a Mom and toddler, I often could understand what he was saying with ease while others had to really concentrate to piece it together.

Sandilee


Mon Nov 08, 2010 12:23 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Sandilee,
Good to see you posting. Hope all is well!
Robin


Mon Nov 08, 2010 12:59 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sinemet - Sandilee
Thank you so much for your response, Sandilee. Everything you wrote was familiar! Dale has trouble getting out of a chair but his walking has been only marginally affected. I certainly can understand getting tangled up in his clothing. He does that often. He can't figure out where the sleeves or legs of a garment are. (Last night, I realized that it would be easier to help him dress if his warm shirts were open in the front. He loves Polo shirts.) Dale has had only three falls but dizziness was his main complaint before the diagnosis.

I am NOT an RN - but my intelligence tells me that giving him medicine that increases his hallucinations just doesn't make sense. He is also VERY aware at this stage and I know in the morning if it's going to be a good day. My apprehension, however, probably contributes to his sense of unease - and that's a problem. I wish I could respond to his delusions and hallucinations in a calm, controlled, matter of fact, way.... I would probably have less pain in my stiff neck as well. :x

Dale and I have always had an easy relationship and he has a great sense of humor. I often tell him he is like a five year old who can't sit still and he smiles. For that, I'm grateful.

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


Mon Nov 08, 2010 7:31 am
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Leone,
In response to our response as caregivers being calm....

A very dear friend to me helped me about a year ago. He simply said..."We as human beings have only our senses to rely on for direction and reality. When our very own senses are deceiving us we will naturally look to whomever we most trust to step in and be our compass for reality."...

This simple statement helped me to put my husbands experience into perspective and stop expecting quite so much... It is far from easy and you won't be calm and easy going a lot of the time. As long as you and he know you are doing your best and your best is given in love he will feel that love even when he doesn't understand it.

Hang tough and be strong :)


Tue Nov 09, 2010 1:25 am
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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
Thanks, Sandilee. I agree. (My neck isn't so bad this morning. :P )

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


Tue Nov 09, 2010 8:32 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Leone - can you get out for a massage? That helps me SO much when I can do that once in a while. And many places are offering reduced rates these days, which helps a lot! 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.


Tue Nov 09, 2010 2:43 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
Hey, Lynn..... I'm getting the message! :lol: You think I'm an up-tight old lady who needs some rubbing down... I'm hearing you loud and clear. I agree that I do need some diversion but a massage would not be my choice. I went to a chiropractor once. It just isn't my style.

Today, the weather is a little warmer and the gardener is putting in some new plants. (In Florida, we can still do that at this time of year.) Hopefully, they will be a calming influence.

I'm hoping Dale's search for the paperwork 'we need to sign' will be over by the end of the day. He started to phone someone a few minutes ago and I got him to agree that calling wouldn't help. :cry:



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


Tue Nov 09, 2010 3:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
You do have your hands full Leone! Isn't it amazing the things our LOs can come up with? Hope you get those papers found and signed!!! LOL

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.


Tue Nov 09, 2010 3:12 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Sinemet - increased hallucinations
An update.... Today, Dale had an appointment with the neurologist at 10:30 am but immediately after breakfast, Dale suddenly became very faint and was 'seeing colors.' He described it as 'kaleidescope colors.' I helped him get back to bed and called the neurologist's office.

As a result of our visit with the doctor at 3:30 pm, we will initiate a reduction in Sinemet to one half pill twice a day. If the delusions and hallucinations are less, we will phase out Sinemet entirely. The doctor asked Dale if he had migraines in the past. Dale said he did as a young man. (That was news to me.)

The diagnosis is still Lewy - but Dale's history of migraines and sleep walking make him a slightly different case. He may react more severely to Sinemet than others.

The doctor also expressed the hope that a reduction in Seroquel might follow.

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


Mon Nov 29, 2010 7:12 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
Was the fainting and seeing colors considered a hallucination? Sounds like a drastic drop in BP. Such OH (orthostatic hypotension) can occur in PD and related disorders. (When it follows a meal, it's called "post-prandial hypotension.") Medication can certainly exascerbate OH symptoms.


Mon Nov 29, 2010 7:52 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
The doctor took Dale's blood pressure four times. Each time was a different reading. He is normally 110 over 60. The readings were 170 over 60 and finally 111 over 70 but the doctor didn't seem very concerned. I don't know if the doctor thought seeing colors was a hallucination. He didn't talk about that. He merely asked if Dale had a history of migraines.

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


Mon Nov 29, 2010 8:43 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
Did the MD take the BP after transitioning from lying to sitting, and after transitioning from sitting to standing? That's the way to take someone's BP when there's a risk of OH. This type of autonomic dysfunction is one of the supporting symptoms of LBD.


Mon Nov 29, 2010 8:59 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
That's interesting. He did take it with Dale sitting and standing... but not lying down.

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


Mon Nov 29, 2010 9:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Do you know why he questioned about migraines? My dad, sister, one of my kids and I all get migraines. Would that make a difference in a medication the dr. would prescribe? 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.


Mon Nov 29, 2010 9:20 pm
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