RE: Re: What is a low dosage and should I stop giving Sinemet?

[Guest guest]

Hi ,

Glad to hear your mom is coming back around. It's scary isn't it how one

medication can have such a huge effect. Thank goodness you are on top of

everything like I am too. I can't imagine if I wasn't there to constantly

monitor her and try as best I can to determine what's causing what.

From your story it sounds like my mom is about a year and a half advanced in

her Lewy Body disease from your mom. When she was at home her doctor tried

Remeron too (wouldn't sleep, wouldn't even go into her bed because of

paranoia). But Remeron caused terrible headaches. She too was prescribed

an anti-depressant and Ativan for anxiety. (your mom's dr and my mom's dr

must have gone to the same med school) But soon the ativan didn't work.

We tried several other anti-anxiety medications but nothing seemed to really

work. The psychiatrist at the facility she lives in diagnosed her Lewy

Body and he is experienced with the disease. He prescribed Zyprexa (lowest

dose) which has been a godsend. She sleeps (in a bed!) and the anxiety is

almost gone.

Mom went into a dementia care unit June 1st. It's about half an hour from

where I live in Pennsylvania. They have been wonderful. I see more of

the staff there than my own friends and family right now. And they listen

to me and my concerns and do whatever I ask. I work too - from my home

which does give me flexibility most days. I'm near retirement age so I've

really cut back my work schedule in the last few years because mom needed so

much care.

My mom has taken a downward turn in the last few weeks. She can barely get

her feet to move anymore. Like you said I don't know that there's much to

be done at this point. And also her mental status has also declined at the

same time. She doesn't make sense a lot of the time. Before, whenever

there was a downward turn (or increased anxiety), there was an infection of

some sort. But that hasn't been the case in the last few months. Last

winter her urologist put her on a low dose anti-biotic (macrodentin) along

with Vit. C, which stopped the constant UTI's. I think it is the natural

progression of the disease now.

I think soon she will be bedridden and she will hate that. She still

tries to get up all the time. Sometimes her body has the strength (with

her walker of course) but sometimes it doesn't. It is hard to watch. I

can't get her up by myself any longer. Mom's body is very contorted due to

her spinal problems. Her head hangs way down and her body is shaped like

an S sideways as well which causes terrible pain - Fentanyl patch has been

another godsend. It doesn't seem fair that one person should have all

these afflictions. Lewy Body in itself is terrible enough.

It's been good sharing with you. I feel for what you're going through and

believe me I understand. Take care of yourself. That's really important.

My health really declined before mom went into a facility and it's just now

getting better. It's important to sleep which I didn't do a lot of.

That's not good for anyone especially someone under a lot of stress too.

God bless you. Wishing you and your mom the best.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of wilbur1635

Sent: Monday, November 21, 2011 12:02 PM

To: LBDcaregivers

Subject: Re: What is a low dosage and should I stop giving

Sinemet?

Thanks. I did stop the Sinemet (after the service paged her Dr and I got

permission) and she got a little better during the day to where she could

speak and move around a little without me by the end of the day. Our moms

are very similar. My mom had big losses in communication, coordination,

cognitive tasks (like TV remote), mobility, direction following, etc. this

summer. And shaking makes it hard to work a fork (she's pretty much done

with knives) but it looks like we may not be able to address that with meds.

Is your mom at home with you? I am a teacher and have a " nurse " with her

during the day and sometimes she goes to an adult day care for variety but I

think she's ready to give that up as getting ready to go out exhausts her.

(daughter and caregiver of Lois-86_

>

> Hi ,

>

>

>

> My mom was put on Sinemet this past summer. The neurologist said to watch

> her the first 3-5 days for side effects - lowest dose given. Within a few

> days she stopped walking and talking almost completely. The Dr. stopped

> it immediately - no gradual decrease. I think because she had only been on

> it a few days. I looked at my mom's prescription and it says Carb/Levo

> (Sinemet) Tab 25-100 mg. Not sure what that dosage means. I think the

> nurse was breaking it in half. But the neurologist did say she was

> prescribing the lowest dose.

>

>

>

> She too takes several medications, Lisinopril and Aricept among them. I

> find it interesting that both our moms didn't tolereate Sinemet and are on

> some of the same drugs. Perhaps the problem is a drug interaction.

>

>

>

> Best of luck to you. It's been hard balancing treating the Parkinson's and

> the dementia since the meds for one part make the other part worse. My mom

> is really going down hill in all areas and I try not to think what the

> future holds and take one day at a time.

>

>

>

> Marcie (daughter of Marjorie - 82 next Sunday)

>

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>

> _____

>

> From: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com> ]

> On Behalf Of wilbur1635

> Sent: Sunday, November 20, 2011 1:13 PM

> To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> Subject: What is a low dosage and should I stop giving

> Sinemet?

>

>

>

>

>

> Hi everyone, I was holding out as long as possibe as I dreaded adding a

new

> medication for my mom (already taking Lisinopril, Remeron, Prozac,

Aricept,

> Xanex, and various vitamins) but last week my mom's shaking got to the

point

> that she wanted me to have the doctor prescribe something. He prescribed

> Sinemet at 100 mg 2 times a day. I have tried following the directions on

> the page that came from the pharmacy and have been giving it to her either

> one hour before or 2 hours after eating. The two times we tried giving it

> one hour before breakfast she ended up very emotional and sick feeling so

I

> decided to only give it 2 hours after eating. Anyway, she started it

Tuesday

> night and now, Sunday morning she is pretty bad (didn't want to get out of

> bed, has only said a couple of words today and was crying but couldn't

tell

> me what was wrong. Finally, I got from her to indicate that she wanted to

go

> back to bed. She had had breakfast and her normal morning meds but not the

> Sinemet. My question for any of you with experience is is this a low

dosage?

> I specifically asked for a low dosage. Also, what is your opinion about

> stopping the drug without being able to contact the doctor (Sunday). There

> is a sticker right on the bottle saying not to skip doses or discontinue

> unless directed by doctor.

> (daughter and caregiver of Lois--86)

>

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