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 Sinemet - physical incapacity vs. increased hallucinations 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Thanks, Robin. I'm printing a copy of it now.

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


Thu Oct 28, 2010 6:33 pm
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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
Sorry to hear about the neurological issues in your husband's family.

Have you discussed brain donation with any of your family members? As you live in Florida, you have access to the incredible Florida Alzheimer's Brain Bank, which accepts non-AD dementia cases as well.


Fri Oct 29, 2010 1:40 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Sinemet issues - Brain donation - Robin
Dale mentioned giving his brain to science just last week. Thanks for the head's up, Robin. I was not aware of the brain bank you mentioned.

Dale's family is fascinating. His father, Joe Carroll, was one of the Stanford Benet control group most of his life because of his high IQ. He was still participating just before he died. His mother was a tennis player at UCLA at a time when women did not do much in sports.

Dale's daughter is a PhD in nursing but has blamed me, her step-mother, for her brother's death in prison. Their bipolar mother died 5 years ago.

I married into a complicated family.

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


Fri Oct 29, 2010 6:26 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: Sinemet - physical incapacity vs. increased hallucinatio
Please email me privately and I'll find the right contact in Florida for you. (They are geographically organized.)


Fri Oct 29, 2010 11:36 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, Robin. I found it on the web. We're in Marion County so the closest is in Orlando. (Martha Purdy) I have other things on my mind.....

Today, Dale is in another episode. (He thinks our church believes the funds in our bank belong to them and that a member of the church board, an attorney, is trying to get the funds back. This morning, he insisted that I send a copy of our bank statement to another member of the board..... He kept asking me where the funds came from. He wondered how long I've been taking care of our books. Gads, I hate this!)

And by the way, two men are sitting in our garage. I said those were two Christmas wreath boxes - and he said, "Well, they usually have heads on them."

Does anyone wonder that I have a problem with delusions and hallucinations?
I'd invite them to live with us for a while......

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


Fri Oct 29, 2010 11:48 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Leone, I think most of us have been dealing with this, Frank thinks children live under the bush beside the house. We had a funeral in the back yard, he'll come get me and tell me to be quiet, and we sneak into the other room to see the people that are taking over our house. It changes but never ends. Hang in there, it doesn't get better.
Take Care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Oct 29, 2010 11:54 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
"Hang in there, it doesn't get better," you said, Gerry.

I know but we can dream, can't we? :P

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


Fri Oct 29, 2010 7:07 pm
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Location: Ocala, FL
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Once again, I've cut Dale's dose of Sinemet by one third. I give him half a pill in the morning and in the evening and a full pill before noon.

So far, I haven't noticed any change in his mobility at all. He still roams around the house with eagerness of a five year old. He still struggles to get out of a chair.

He continues to have hallucinations - but he knows what they are. He talked about the people he saw in the house tonight. He said there were three of us in the bedroom when I helped him get ready for bed.

I'm sorry those images he sees haven't diminished - but as long as he continues to have them, I think the Sinemet is counter-productive. In fact, he told me that he would rather the hallucinations would disappear than have more mobility.

It seems to me that Sinemet is insurance against something that is a long way off. I may be wrong .... but the hallucinations are now and far more annoying to him.

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


Wed Nov 03, 2010 11:12 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
Everyone is different. While Sinemet may be a bad thing for your husband, it's a lifesaver to many. It's wonderful that your husband can participate in his care decisions.


Thu Nov 04, 2010 12:49 am
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Joined: Mon Mar 08, 2010 9:32 pm
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Location: Dumfries Va
Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Leone, my wife has been on Sinemet 25/100 since 2006. At first she was on 3 a day. Then in 2008 she had an episode of hallucinations. That was the first one. They put her on Seroquel 25mg and all was find for a while. She had been back and forth with 2 and 3 times a day with Sinemet and it hasn't changed a thing. When they recently increased back to 3x day and added Azilcect, she started leaning backwards something terrible. They went back t 2X fo Sinemet and no change. Eliminated the Azilct and she has been find. Theyhave not changed her off the Sinermet 25/100. I wish they would to see if there is anything that will help. Before Feb of this year, she had very few hallucinations and her memory was great. Since then she has forgotten almost anything that has happened since 1980. Now she has hallucinations almost 24/7, becomes very emotional and is very confused why when they knew in 1913 Lewy Bodies existed why nothing has been done to help patients. She is on the Exelon patch and I see no improvement.


Thu Nov 04, 2010 7:53 am
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Thanks for sharing your experience, Mac.

Our experience is different because Dale's hallucinations were the first major symptom after dizziness. He had been a sleep walker since his 20s.

Major hallucinations began at the end of January 2009. For three Friday nights in a row, he was up during the middle of the night doing things like peeing in the sink (because others were using the toilet). He had 'meetings' where I had to make coffee. (I pretended to serve it too.) He was asking the people if they wanted sugar or cream.

I put alarms on the doors to our bedroom because he once dragged me outside during an episode when he was sure we had tickets to San Francisco and I was resisting going. Another time, he had a knife from the kitchen 'in order to protect us.' I also installed blinds on all the windows so he wouldn't see people in them.

Seroquel was begun in August of 2009. That controlled the night time behavior but we also started the use of a condom catheter - which really keeps him in bed. He has tried to get out of bed only about three times since then. That 'getting up' was 4-5 times a night and neither of us was getting any sleep.

The hallucination episodes were 2 or 3 times a week until the beginning of last month. Now, they are a regular part of his life. Fortunately, he recognizes them as an illusion and we can talk about them - as we did last night. I have given him 25 mg of Seroquel rarely during the day - only about 3-4 times. I do that only when he wants it.

Dale is a retired attorney and reads constantly about his disease. He does not need walking aids. He has some difficulty rising from a chair but his mobility is still good enough for him to do work-outs in our home gym. We think the Sinemet is working against him at this point.... but who knows?


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


Thu Nov 04, 2010 9:33 am
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Joined: Wed Feb 10, 2010 1:26 pm
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
Leone,
I read your posts with much interest. Your husband sounds very familiar to mine!
Unfortunately, my husband passed away last month.
Like yours, my husband was keenly aware of his disease and the hallucinations and delusions. He spoke of them as "what he saw on his screen". Also like yours, the parkinson's symptom were minimal; no tremor, stiffness, slowed movements,lack of balance, but able to walk unassisted.
We started out with 25/100 sinemet 3xday...the hallucinations, delusions, and overal confusions increased dramatically. He knew they were worse but was no longer able to express himself.

I slowly decreased the dose,seeing no real mobility change, until we were at half dose. This allowed him to think more clearly,and put the delusions in perspective understanding what was real and what was "a thought he couldn't make go away"... and he told me he needed his brain more than his body.

I certainly would never recommend anything without checking with your MD. This is simply my experience and no two patients are alike especially with LBD!!!

Unfortunately, my husband did fall in Sept and that ultimately led to his death. Fortunately, he was able to wade through the delusions and hallucinations and speak to myself, our daughter and friends up until the day he lost consciousness. This was a blessing for him and us!

I wish all the best. You have many hard decisions ahead of you...listen to your heart. You will be in my prayers.


Sat Nov 06, 2010 5:35 pm
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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
Dear Sandilee:

Thank you so much for your interest in our situation. If you are willing, I would like to know more. Did you say that your husband's fall led to his death? Do you see any connection between his fall and reducing Sinemet?

As you are aware, Dale also views his mind more important than his mobility at this point. He wants - more than anything - for the delusions and hallucinations to go away. However, they are daily now.

For instance, tonight he is watching Stanford play Arizona. He asked me if we could leave 'this place' and go to the Stanford locker room. I explained that they are in California and we are in Florida. He smiled broadly and said, "Oh, that makes it hard, doesn't it?" Then he said, "You have your cell phone, can't you call them?" I said I didn't know anyone there. (He went to Stanford; I did not.)

I did obtain permission from the neurologist to modify the dose of Sinemet - but on the last visit, she said he was stiff and she asked, "How bad are the hallucinations?" She didn't wait for an answer and insisted that we go back to the original dose.

I can't 'quantify' them. How can I say they are driving him crazy? I returned recently to the lower dose. I can't give him something that we both believe causes hallucinations.

This afternoon, he walked the distance of our hallway using perfectly normal strides. As he did it, he said, "Watch this!" I said, "Why don't you always walk that way?" He said, "I just get tired."

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


Sat Nov 06, 2010 9:01 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Post Re: Sinemet - physical incapacity vs. increased hallucinatio
I really do not know if my observations with Mr Bobby will help with your concerns about rigidity or not but here goes. On a day when Mr .B would be tense and worried, the legs would stiffen up and he would caution me to be careful with him as he tried to stand because his legs were broken. The next day when he would be quite happy, the legs were suddenly healed. a simple version of rigidity always occured when he needed to put his slippers on. I could help him with his socks but when I would try to put his foot into the slipper, it froze stiff. I soon learned to hand him the slipper and place his toes in the right direction. He could slip them on with ease. We never used sinemet. My concerns were more towards keeping the mood under control. The rigidity could change from day to day... his attitude seemed to be the controlling factor and not any meds I gave him or did not give him. Hope this is not too far off subject.

DrP


Sun Nov 07, 2010 1:27 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
Thank you, Dorthea, for writing. I appreciated your 'first person' experience.

Dale also has times when his legs bother him but other times when he is delighted that his legs feel fine - and he will say so. I always wonder if the problem is actually his legs - or the messages from his brain. He sucks on a homeopathic product called Tremor Soothe and that makes him feel better. (Does it actually do anything? Who knows?)

It's interesting that Mr. Bobby did not take Sinemet and that you think his attitude was the controlling factor.

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


Sun Nov 07, 2010 7:11 am
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