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 Carbidopa/levodopa mobility vs behavior 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Carbidopa/levodopa mobility vs behavior
Jeanne - my dad took Seroquel at night and it helped a lot. Don't remember what dosage he took. 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 Jan 09, 2011 9:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
Jeanne, it may be a 'big gun' but nothing else helped--not even a little. They tried trazodone and kept increasing the dose and, not only did it not help him sleep, it made him aggressive and hostile.

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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 10:03 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Carbidopa/levodopa mobility vs behavior
I'm all in favor of what works! Unfortunately, that is not the same for everyone, and prescribing medications for the brain is always a matter of trial-and-error. Start with the most likely to work, start small, increase the dose slowly, and when it gets up to a theraputic level evaluate the benefits and the downside. Not the right solution? Start over again. It takes patience and a knowledgable doctor and it is not everyone's cup of tea. But I am very grateful for the 5-drug c0cktail that took about a year to establish for Coy. (Did you know that the text censor considers c0cktail a naughty word? Odd!)

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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 10:21 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Carbidopa/levodopa mobility vs behavior
Del takes 100 mg of Seroquel and 50 mg of Trazadone. Sometimes it works and sometimes it doesn't. When it works it's wonderful. When it doesn't he is up and falling (like last night) many times in the night. So far he has had 6 fractures related to falls. But then he has Osteoporosis, too.

Smiles, Nan


Mon Jan 10, 2011 12:40 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
Oh, Nan! How awful! I am thankful that Derek has good bone density!

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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.


Mon Jan 10, 2011 12:58 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Carbidopa/levodopa mobility vs behavior
Nan, does he fall during the day, too, or just at night? What is a falling episode like?

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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


Mon Jan 10, 2011 1:02 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Carbidopa/levodopa mobility vs behavior
He will go for a period of time with no falls, then it's Katie bar the door. Today there were two falls, neither of which caused an injury. I leave his wheelchair next to the bed during naps but he won't use it. He fell after parking the w/c in the hallway and walking into the living room following his nap. As soon as he turned the corner into the living room he fell. Today he absolutely refused to use the w/c and was pacing around...just pacing and pacing. He wouldn't sit down and he didn't want me to walk with him. I finally left him alone and kept my fingers crossed. He fell and then he didn't want help getting up. Instead he crawled around the living room and dining room and threw everything he could get his hands on. It was a real temper tantrum. Finally he managed to get up and sat in his recliner. He had worked out all his aggression on the floor and was actually fairly pleasant for the rest of the evening. I sat there watching him and wondering why I want to keep him at home. He would like me if he were placed somewhere and I went to visit him.

Sad smiles, Nan


Mon Jan 10, 2011 1:21 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Carbidopa/levodopa mobility vs behavior
Nan, I know that repeated falls is listed as one of the "other LBD symptoms" in the LBDA brochure. It is very common. Coy fell frequently during our first months with Lewy, with or without a walker. He has strong bones and had more padding back then and he never suffered a fracture, but he takes a blood thinner and he was one big black-and-blue mark.

When he fell he could not get up. He was awake and alert but unable to stand and seemed to have no strength in his arms. After a while I learned that this condition would pass and I tried to encourage him to relax. I'd get him a pillow and a blanket and tell him that he would be able to get up on his own in a little while, but I wasn't always able to convince him and he would drag himself over to a railing or furniture that he thought he could pull himself up on. He just couldn't make his arms and legs work.

I know lbd falls are common, but I'm not sure they are all created equal. After observing his falls closely for a while it seemed to me that Coy didn't lose his balance and he didn't stumble. It was as if he suddenly lost control of his legs and arms (and hence could not hold the walker). When I described this to his doctors they were very interested. It sounded like narcoleptic-type episodes. He is now on a drug for narcolepsy and instead of falling several times a day he goes months without falling at all. He went from a wheelchair in 2003/2004 to walking again on his own. He now golfs with a league for people with disabilities and bowls with a regular senior league. That drug has given him a huge chunk of his quality of life back.

As I said, I'm sure this is not applicable to all lbd falls. But if the shoe fits ... it is more pleasant to walk in it than to crawl! :lol:

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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


Mon Jan 10, 2011 2:05 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Carbidopa/levodopa mobility vs behavior - falling
Dale has rarely fallen - but has done so twice recently. He does have strong arms so I have brought a chair and he hoists himself to his knees and then I can help him stand.

His recent problem is related to renewing Sinemet - (now 1/2 pill only in the early morning). Because he now has periods of amazing mobility, he doesn't realize that he needs a walker. During those periods, however, he seems almost in a trance or drugged. I fear we will have more falls. I am continually reminding him to use the walker.

He is delusional all of the time now. The days of participating in any sort of sport are long gone.

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


Mon Jan 10, 2011 3:53 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
Jeanne, is Coy on Provigil?

_________________
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.


Mon Jan 10, 2011 10:26 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Carbidopa/levodopa mobility vs behavior
Yes Pat, Coy is on Provigil. For us it is a miracle drug. For others it doesn't work at all or has side effects. Wouldn't this be easier if one-drug-fit-all?

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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


Mon Jan 10, 2011 10:36 am
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: Carbidopa/levodopa mobility vs behavior
Pat,

I just had a long note written here and it escaped! Probably for the best.

Any way I wanted to tell you about Mom's serequel experience in her context but too tired to write it again.
Basically her nerologist took her off of as much of her usual medication that he could. She continued to take meds for depression/ effexor, COPD, and oxycontin for her pain. She was also on vicodin from time to time when she had a fracture or what ever.
She first saw a nerologist late in her disease- July 2006- passed Feb 2009
She had motor problems but not much different from her normal shuffle from her chronic back pain. He put her on(mind went blank) the drug they had everyone on at the time for cognition. Nothing for motor problems though. From 2006-2009 she remainded on these drugs.

Late 2008 her halucinations increased and she was not sleeping. She stayed in a delusional state for at least two days at a time. It was at this time the doctor perscribed Serequel. It helped her sleep and we played with the dose. She declined quickly at this point, although her halucinations improved and she and I could get some much needed sleep.

Mom didnt get out of bed much after Christmas, and once the hospital bed arrived not much at all. I think psychologicaly she knew this was it(because she could relate to the hospital bed). I dont know, I just know the decline was fast from this point. She spent at least a month talking to her passed family members. She seemed to work out a great deal of grief in this state. She was preparing to pass.... I take behavior/cognition over the motor functioning any day!
Sharon E.


Mon Jan 10, 2011 1:02 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
sharone wrote:
I take behavior/cognition over the motor functioning any day!

I thought I would too, Sharon, until we took him off Sinemet and I became aware of how difficult it is to haul a man around. Dale was almost catatonic. He couldn't sit or stand.

The half pill of Sinemet in the early morning has given him some periods of mobility.... but the delusions and cognition are much worse. He regularly doesn't know who I am. This morning, he asked me what I did yesterday and when I told him, he said, "That's what my wife used to do." He sees people around and wonders how many are staying for lunch.

Truthfully, I'm glad for the mobility - because I was ready to throw in the towel when he couldn't move. But the loss of his mind is torture too.

I'm very glad when he is sleeping or I have a care giver and can escape. In October, I would have never said that.

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


Mon Jan 10, 2011 2:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Carbidopa/levodopa mobility vs behavior
Sharone - is your mom receiving hospice services? When my dad went on hospice they gave me a pamphlet that describes what happens in the last few months of life. One of the things is that many people start seeing and talking with LOs who have died, pretty close to the end. I don't think my dad ever did that because I tried to have a conversation with him less than a week before he died. I asked him if he'd seen my mom, his mother and grandparents, and his best friends. He hadn't but apparently many people do. 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 Jan 10, 2011 4:42 pm
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: Carbidopa/levodopa mobility vs behavior
It is so hard for me to make a post when there isn't a context to it. As we all know Lewy progresses and at one time one set of meds is appropriate and at other times another set.
I made a statement about liking cognition over mobility. Preferance_ Not having to choose!
To clarify my mothers situation. She did not have many parkinsons symptoms although her mobility declined as time went on. She did the "freezing" as I have seen described.... She got around pretty well with her walker until near the end of her life.She could no longer handle my stairs where her bedroom was and our bathroom! Early on in her disease she had falls and suffered reprocussions. Perhaps because of all the meds mom was on for pain and such the doctor never put her on siment. sp? Dont know for sure but the nerologist never recommened it and if anything was all for getting my mom off of the other drugs.
She was taking Aricept, effexor, oxycotin and etc for COPD.
She was walking and sitting on the edge of her bed On Christmas Eve 2008, didnt get out of bed Christmas Day, couldnt take her to the doctor at this point. Halucinations were at a high and she wasnt sleeping. Doctor perscribed Serequel which improved that current situation!, and I could no longer get her upstairs to shower.

On Jan 7 2009 had a hospice evaluation. She qualified under" dibilitating decline". Luckily I knew enough to watch the meds. She passed Feb. 8th 2009. Hospice bathed her twice a week and of course a nurse stopped in. I had GREAT difficulty changing her depends and keeping her skin clean. I couldnt turn my mother and my diapering skills left much to be desired! Thank God my angel of a husband stepped in and helped me. I could Not have done it without him! Hospice was wonderful.... Her decline came quickly and it was evident at this point she wasnt getting out of bed. The weeks before her passing were very difficult but ultimatly ended very peacefully. May God bless you all and guide you as you help your loved ones pass!
Sharon E. P. s Lynn I have had a couple of other names on here and knew you last Feb.


Mon Jan 10, 2011 6:18 pm
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