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 Carbidopa/levodopa mobility vs behavior 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Carbidopa/levodopa mobility vs behavior
My husband's doctor recently reduced his carbidopa/levodopa medication [Sinemet] and this has resulted in a substantial decrease in the combative behavior we were experiencing but has also resulted in a decline in his mobility. Has anyone else experienced this? He is currently in a SNF for respite care and the change was made last week a few days after admission. He was able to walk occasionally with his walker prior to that but now is unable to walk at all. I asked his doctor to consider returning to the original dosage but so far he has not changed the order.

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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 Dec 26, 2010 11:53 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Carbidopa/levodopa mobility vs behavior
Yes, yes, yes, Pat. However, Dale doesn't want more Sinemet. He still walks amazingly well when he wants to walk but has freezing about 50% of the time. I'm not sure it is 'cause and effect' but it could be. I do know that his mind has been much more delusional since Thanksgiving. I don't want to give him anything that will make that worse.

Last night, it was a murder and we needed to call 911 and everyone needed attorneys. This morning, I was in the military and he needed to know my name and my rank. His toilet paper needed to be sent to headquarters as evidence. (We actually wrapped it in a bag with his initials on it.)

He is in a mental and physical tailspin and I can't believe it. I used a caregiver for the first time this morning. That worked out well. The caregiver said Dale spent the time sleeping. Dale said he had been on the toilet the whole time.

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


Sun Dec 26, 2010 12:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
Glad to hear you've got a respite caregiver now, Leone. Believe me, your sanity depends on it!

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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 Dec 26, 2010 12:18 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Carbidopa/levodopa mobility vs behavior
Fran was on Sinemet for only 3 months and that was long enough for him and I. The last three months the delusions and hallucinations were terrible, and did not help his mobility. He has been off the medication for about 2 weeks and so far he is not back to where he was before starting Sinemet. I can only hope in time that they decrease in severity. I am not counting on it.


Sun Dec 26, 2010 2:10 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
Unfortunately, his hallucinations and delusions haven't abated a bit. Just his agitation and hostility. But that is a blessing--to me and to his caregivers. :P

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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 Dec 26, 2010 3:11 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Carbidopa/levodopa mobility vs behavior
We have very definitely settled into a 'new normal.' Dale thinks I'm some sort of military worker who is supposed to take care of him. He asked me at lunch if my meals were provided.

He looks at me like someone he barely knows. He talks to me as if he is asking questions at the 'front desk' in a hotel. He asked me a few minutes ago if we could get married. It's really strange.

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


Sun Dec 26, 2010 4:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3426
Location: Vermont
Post Re: Carbidopa/levodopa mobility vs behavior
My heart really goes out to all of you dealing with your LOs and their hallucinations. It must be like a nightmare. 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 Dec 26, 2010 5:08 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Carbidopa/levodopa mobility vs behavior
Actually, Lynn, what is happening here is not hallucinations. It's extreme delusions! Dale lives in his own world. In fact, my standard line when he wants me to get involved in some way is, "That's not my world, honey."

He is not so much 'seeing' things as his brain is creating story lines out of TV programs, phone conversations, newspaper items, and ancient memory. It's as if his mind has been scrambled like a bowl of raw eggs.


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


Sun Dec 26, 2010 5:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Carbidopa/levodopa mobility vs behavior
Pat,
The answer to your question is yes and sadly this is the trade off when we D/C meds, for me I would rather have less combative but each situation is different!

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Irene Selak


Sun Dec 26, 2010 5:29 pm
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Location: Acton, MA
Post Re: Carbidopa/levodopa mobility vs behavior
Leone, Frank doesn't talk much and makes even less sense when he does. He will take one word from a conversation that I might be having with someone and he creates his own story, it takes a little time to piece together where it all started but we're getting pretty good at it. We try not to mention money because that always ends that I'm giving all our money away and paying all the kids bills, (they should be so lucky). It is an interesting life.

Hope everyone had a pleasant Christmas, ours was very nice.

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


Sun Dec 26, 2010 7:08 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: Carbidopa/levodopa mobility vs behavior
This balance between mobility and mental aspects of PD is well-described in "Mind, Mood, & Memory," an educational booklet written for laypeople by NPF.

It seems that if there's ever a serious imbalance -- such that the person cannot move or that the person is floridly delusional -- this is the catalyst for facility placement.


Sun Dec 26, 2010 8:52 pm
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Location: Ocala, FL
Post Re: Carbidopa/levodopa mobility vs behavior
robin wrote:
this is the catalyst for facility placement.

And there, they would be given sedatives that would maintain them in bed for the rest of their lives. Their spouses and children would visit them occasionally - and everyone else would move on with their lives.

I've watched that happen in my family too often.

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


Sun Dec 26, 2010 9:31 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Carbidopa/levodopa mobility vs behavior
Not necessarily. We didn't have that experience since my dad lost his mobility all on his own before moving to an ALF. I think it depends on where you live, what the culture is like there, how the medical community deals with patients with dementia and the philosophy of the facility. Family members need to be vigilant in making sure their LOs get the best care possible, no matter where you are or what the situation is like. It's a job to stay on top of it all though. 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 Dec 26, 2010 9:55 pm
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Location: Ocala, FL
Post Re: Carbidopa/levodopa mobility vs behavior
I suspect you were the exception rather than the rule, Lynn. It's my understanding that many people in facilities rarely have visitors. My sister visited my mother regularly in the last three years but most of her friends were dead and others in the home didn't have visitors. We were too far away to visit and the grandchildren and greats were just too busy.

Dale's mother was sedated and every time we saw her, we thought the fact that she was unresponsive was the result of a stroke. When Dale's father died, we decided to take her out to attend his Irish Wake. The home didn't give her the sedatives for 24 hours and she became animated and fun to be with again. I bought all new clothes for her and it's a memory we all cherish. As a result, we decided she was in the wrong place and the family flew her to be in a nursing home closer to another son accompanied by Dale's cousin. She was there another two years.

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


Sun Dec 26, 2010 10:08 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Carbidopa/levodopa mobility vs behavior
That is really sad, isn't it? I tried to schedule my dad's visitors so that instead of having a bunch of people all on the same day, people came on different days so he usually had someone there for a visit. There were a lot of others who had visitors there, which was nice. The ALF also did not have the "drug 'em and leave 'em" mentality. They were pretty good about keeping a dementia patient (my dad) in the "regular" part of the ALF too. I was very thankful for that. 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.


Mon Dec 27, 2010 2:17 pm
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