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 Carbidopa/levodopa mobility vs behavior 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Carbidopa/levodopa mobility vs behavior
Sorry, Sharon, I obviously didn't read every word of your previous post! I apologize. So you're on here kind of incognito? Just kidding. I'll send you a PM. 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 Jan 10, 2011 6:31 pm
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: Carbidopa/levodopa mobility vs behavior
Lynn,

I know we are not to chit chat here but HA! Just kidding... I am just trying to be good not incognito.

Sharon E.


Mon Jan 10, 2011 6:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
Since Saturday, Derek has been taking his former dose of Sinemet after having it reduced for a few weeks. The change was at my request but I'm having second thoughts. He is a little more mobile--not walking, but sometimes can lift his feet when he's sitting--better use of his hands, etc. But he's really getting crotchety the past couple of days and swearing at the aides, etc. [and me]. I'm thinking it's the Sinemet and not the UTI, because he's had the UTI for a week and a half at least and is now on the antibiotics. Guess we'll find out within a few days. Then the usual dilemma: Keep him on the higher dose with mobility or take away his ability to feed himself, etc. to defuse his temper? Guess I'll wait and see if the staff has any issues. :|

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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.


Thu Jan 13, 2011 4:17 pm
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: Carbidopa/levodopa mobility vs behavior
I am sorry this is so difficult Pat. Looking back I realize I didnt have to face this issue. Would increasing the serequel help? Hope your day is peaceful.
Sharon W.


Fri Jan 14, 2011 11:54 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
Dale is still taking only a half pill of Sinemet early in the morning ... but he is using his walker all around the house again! He scares me because he is quite unsteady and he still can't sit in a controlled fashion. He falls stiffly unless I'm tutoring him to 'take his time' and 'do it carefully.'

His delusions are constant - but I expected that when I chose to go back to Sinemet. Today, he said he called Mattress Giant and they said we were to go to the store and get our mattress replaced because it has coke cans in it. (He can't use the phone and we didn't buy the mattress from that store.) He begged me to take him there and was quite unhappy with me that I wouldn't go.

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


Thu Jan 20, 2011 11:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
Well, I have to face the fact that Derek's mobility is worse than ever, even though he is on Sinemet four times a day instead of three. I have also observed some signs of EPS [extrapyramidal symptoms], specifically movements of the tongue and mouth, that I remember he had a few years ago when on the higher dose of levodopa/carbidopa so I guess I'd better ask the doctor about taking it back down to three times a day. I was hoping the higher dose and/or the resolution of the UTI would perk him back up. Alas, it has not been the case. :cry:

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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.


Fri Jan 21, 2011 12:05 am
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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 sorry, Pat. Hugs.

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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


Fri Jan 21, 2011 12:24 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Carbidopa/levodopa mobility vs behavior
Thanks, Jeanne. It's so disappointing to know that this current decline is likely permanent.

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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.


Fri Jan 21, 2011 12:30 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 - Pat
Yes, it is disappointing. I'm sorry, Pat.

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


Fri Jan 21, 2011 1:08 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Carbidopa/levodopa mobility vs behavior
Hang in there, Pat. It is so hard to lose a loved one by inches. A death by a thousand cuts.

You have my prayers and my very best wishes in this journey we share.

Hugs, Nan


Fri Jan 21, 2011 2:21 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Carbidopa/levodopa mobility vs behavior
Pat, you work SO hard to try to keep Derek steady, or at least not declining so fast. It is really difficult to see the decline. 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.


Fri Jan 21, 2011 8:30 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Carbidopa/levodopa mobility vs behavior
Pat,
Sorry the decline seems more permanent, as you know often these infections often take them back a notch or two, sadly! As to the PD meds in our case we ended up with one small dose in the early am just to get him to the point of some slight strenght to transfer.

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Irene Selak


Fri Jan 21, 2011 8:59 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
If I can just continue to get him from bed to wheelchair in the morning, I'll be content for a while. (He didn't fall into the wheelchair this morning... but it took a lot of patient urging on my part.)

Dale's mobility fluctuates wildly. I never know at a given time if he will be able to walk or not. In fact, even he doesn't know until he tries to stand.

This morning, I took the catheter off and got him all dressed and into the wheelchair for breakfast .... and then he wanted to pee. He reminds me of the toddler who is all dressed in his snowsuit and then announces that he wants to use the toilet.

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


Fri Jan 21, 2011 11:26 am
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