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 Carbidopa/levodopa mobility vs behavior 
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Carbidopa/levodopa mobility vs behavior
My MIL is the same way, but usually after she has been up for a few hours. Then it's to the bathroom, sit for a few minutes, to the bathroom, lay down, then up to the bathroom, then sit, etc. over and over. I agree about the sense of time. On the weekends when the caregiver is not here and her shows are not on TV, all bets are off. And she only ventures out into the living room after 5 pm. Not a minute before. Her clock is the 5pm nightly news. When that comes on she comes out. Otherwise she stays in her room all day and refuses to come out with us. Weird disease. Luckily she can still shuffle out the few steps it takes to get to the bathroom.
Oh, she has been on stalevo for a long time. Before that it was sinemet.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sun Jan 09, 2011 1:15 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Carbidopa/levodopa mobility vs behavior
OMG. You all have described Del to a tee. He is up and down, up and down, up and down and he never remembers to call me and get me to help him. Yesterday I was trying to cook dinner and evrey time I turned around he was out of one chair or another. I kept telling him (Why do I bother?) he would fall...which he did. Then he got angry at me for not telling him he could fall.

Last night he barely got any of his nightime pills as he kept spitting them out. I put them in yogurt and he spit that out all over the bed. Have you ever tried to crush pills IN yougut? Not easy. Messy.

Then he was up four times in the night...and twice he fell. Has a new abrasion on his back. It was not a good night...but we had two good nights before that...before that, two awful nights.

I am not getting enough sleep. I cannot afford to get anyone in to sit with him through the night. An adult family home would be about the same cost and they would provide all his care.

I am so tired. Meanwhile, he is sleeping. I am not.

Smiles, Nan


Sun Jan 09, 2011 3:07 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
I know, Nan. How well I know. :|

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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 Jan 09, 2011 3:15 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Carbidopa/levodopa mobility vs behavior
Pat, you do know. All of us know too well, and those who don't yet, surely shall. And I am sorry for the sad lessons we learned and they will learn.

I have spent yesterday and today (we are totally alone on the weekends) wondering how pioneer women managed when a dementia came into their lives. How did they ever get the garden planted and the cows fed and milked and the fields plowed? To be in a very rural farmhouse with a demented person is my vision of hell.

I wonder how they existed. ANd there were NO medications. You did not have the question of whether to give Sinemet or not to...whether it was better to keep them a little more imobile and have fewer outbursts or moving and falling and heightened hallucinations and delusions. Then you just took what you got.


Sun Jan 09, 2011 5:02 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Carbidopa/levodopa mobility vs behavior
When pioneer men/women were out on the prairie or wherever, the life expectancy was so much shorter than it is now. The environment was cleaner, food didn't have additives, dyes and other chemicals. I'll bet there weren't that many people who developed dementia.
But for those who did have to become caregivers, it must've been really tough. To say nothin' of birthin' babies with no meds! And it was obviously very lonely, judging by the writing of those folks even without having to take care of someone who had dementia.
They didn't have a community of online supports either..... It would be my version of hell too.

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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 Jan 09, 2011 5:30 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Carbidopa/levodopa mobility vs behavior
Pat and Leone, I have no idea why they do it. But it is driving me crazy. Fran had 2 very bad days, I finally put him to bed to watch the football game. I pray he stays there for at least and hour. Fran doesn't have restless leg syndrome, he has restless body syndrome. He told me today that he does't want to sit in the lift chair anymore because he can't turn it over????? I put him on the sofa today, and could not get him back up. Told him its the chair or the bed no more sofa.

Pat, you had mentioned Derek leaning to the opposite side now, Fran leans both ways. Sitting, most of the time leans to the right. Walking, leans to the left. In the car, leans to the left. Does that make him ambidextrous?
Heh heh


Sun Jan 09, 2011 6:58 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
I guess it makes him 'Lewydextrous'.

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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 Jan 09, 2011 7:02 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Carbidopa/levodopa mobility vs behavior
There's no doubt at all that those pioneer men and women were tough cookies! Birthin' babies was probably not as traumatic as burying babies, and the mortality rate for babies and young children was heartbreaking -- not only for pioneers but for their city contemporaries.

In spite of pollution and food additives and stressful crowded cities, we are simply living MUCH longer now than the pioneers did. I heard a lecture on women's health that pointed out at the turn of the last century (1900) less than one-third of all women lived to see the "change of life." No wonder menopause got so much more attention in the last decades of the century -- more of us were experiencing it!

I think that the same thing is true for most dementias. Certainly there are early onset cases of lbd, but for the most part it strikes the elderly. The year my husband was born, life expectancy for men was 55 years. If he had died at age 55 he would never have needed hearing aids and he never would have met Lewy. I believe that we see more cases of dementia now because so many more of us are living long enough to be vulnerable.

As one of our doctors observed, medical science has been remarkably effective at extending the average life expectancy. The social sciences have not kept up with the challenges of dealing with an aging population.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 09, 2011 7:16 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Carbidopa/levodopa mobility vs behavior
Quote:
I am not getting enough sleep.


Oh, Nan, I remember those awful nights of constantly interupted sleep and too little total sleep. I could not have kept that up. It was the one thing that would have driven me to placement years ago. When Dr. Boeve asked what symptom we wanted to tackle first I had no hesitation in saying "sleep problems!" Between Dr. Boeve and Dr. Schenk (the sleep disorder specialist) the sleep issues have been resolved, and Coy continues to do well at home.

My heart goes out to you and the other caregivers who are struggling with too little sleep.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 09, 2011 7:26 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
What did Drs. Boeve and Schenk prescribe?

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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 Jan 09, 2011 7:30 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Carbidopa/levodopa mobility vs behavior
I want to know, too. Nan


Sun Jan 09, 2011 8:42 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Carbidopa/levodopa mobility vs behavior
Coy takes 5 meds for dementia-related symptoms. The ones especially for his sleep problems are Klonopin and Seroquel.

What do your LOs take for sleep problems, Nan and Pat?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 09, 2011 8:53 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
So many things were tried but Seroquel has been the most helpful. He takes 75mg at bedtime. He also takes Temazepam but he has taken that for two years and it didn't really do much. Doctor want to leave it in. I'm not sure why they have him on that instead of clonazepam [Klonopin].

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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 Jan 09, 2011 9:05 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
Maybe it has to do with which drug company got to the doctor first. :twisted:

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


Sun Jan 09, 2011 9:17 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Carbidopa/levodopa mobility vs behavior
Pat, Coy takes 100 mg at bedtime. I forgot to mention that he also takes saw palmetto. It took a few months, but that has reduced the number of trips to the bathroom during the night.

Robin has commented that Seroquel is big guns to use for a sleep problem, and I'm sure she is right. Doctors should no doubt try less powerful meds first. But to me not sleeping through the night is the Big Enemy. Little guns, big guns, squirt guns, cannons ... I don't care. Bring 'em on and let's find something that works! 8)

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 09, 2011 9:27 pm
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