Re: Dad update and help

[Guest guest]

Piper, I will add you to the prayer list, which is getting longer and

longer. My heart aches for you.

Your comments about Sinemet prompt me to write and I agree with your

assessment because our neuro set us on a withdrawal program and I finally

figured

out yesterday that he was unduly suffering from the rigidity. Somehow it

doesn't make sense, when it is so difficult for him to move anyway, for

whatever

reason, to add to the discomfort. Maybe I have made a mistake, because I am

doing this on my own with no doctor's directive, but I guess I will have to

live with this decision as well as the thousands of other ones I've made alone

since this all began.

God have mercy on me. Arlene

[Guest guest]

Hi, Arlene,

I am keeping you in my thoughts and prayers. These decisions we have to

make are just so difficult. The only thing that seems to have made a

difference

with Dad in withdrawing the meds is the Sinemet. The restless leg thing was

just unbearable for him. I am sending you strength and courage to get

through all this.

Hugs,

Piper

[Guest guest]

Thanks, Piper. I hope you will have a good night. Arlene

[Guest guest]

Hi, Tom,

Thank you so much for telling me about the moon's affect on sleep patterns

and agitation. I am not unfamiliar with that thought, but I think I wanted to

hear something from the nurse that I could actually do something about. I

was in a rather agitated state of mind myself! You know how it is when you

desperately want answers, and there are none to be found. Thank goodness I

figured it out later on and called the doctor. Thanks so much for sharing your

experiences with me!

Hugs,

Piper

[Guest guest]

,

Thank you so much. It is just nice knowing you are there. I have you and

your mom in my prayers.

Hugs,

Piper

[Guest guest]

Thanks , for your input. I really respect what you have to say. I am

not going to extremes with the Sinemet, I just think that it needs to be a

part of his medicine regimen and not excluded . The emphasis seems to be on

pushing the Razadyne at $160.00 per month and the Namenda. Sorry for the

sarcasm. Arlene

[Guest guest]

Hello....I know it may sound absurd but in my mothers case the Full and New

Moons brought a lot of extra agitation and sleep problems...usually starting

three days ahead...all the paid caregivers I've had said it's common...for

what it's worth.....and tell the Hospice supervisors you aren't getting the

helpor answers you need......if they offer no better answers try and ask

your doctor for another referral for hospice as this just is not

working...they are to make this easier on both of you....I did this before

with my mother after she had a seizure last year and was on hospice till she

recovered a bit.....Tom

Dad update and help

> Hi, All,

>

> My neurologist instructed me to take Dad off his meds last week. Dad

> began

> having horrible Restless Leg Syndrome, which I never even knew he had.

> He

> couldn't rest which made everything worse - more frightened, more

> delusional,

> more everything bad. I finally figured out it was withdrawing the

> Sinemet and

> called the neurologist immediately. He said to go back on the Sinemet,

> and

> it worked like a charm - no more RLS. The Hospice nurse had been here,

> and

> had no comment about the RLS except the moon has been full, and that may

> have

> an effect on restlessness. I won't go off on how I feel about that, but

> . .

>

[Guest guest]

Hello Piper,

Looks like you are following the same road I just got on. See if you can try

time-released Sinemet two times a day to control the RLS...that's what we

just did with my Uncle because he went completely off of meds when he came back

from that NH and he had RLS so bad he was trying to go out the window. We

still don't give him Seroquel because he has gone down hill so much, but do give

him Roxinal when he is in pain. That's it. No meds and he's actually more

comfortable. If he doesn't want to eat...sorry to say...I wouldn't force him.

Just offer something soft and refreshing like ice cream and see if he will

substitute that for a meal. My Uncle has a small bit of breakfast (scram eggs

and

coffee), and a tiny bit of ice cream when I offer it to him. He never asks

for food any more or water. Hard to watch but very natural at his stage.

I send you the most loving courage and strength to get you through the very

trying Lewy Times that are ahead of you. Much Peace to you and your Father,

Stevie

P.S...The Hospice I am using actually READS the messages from this board and

are depending on me to help THEM learn about Lewy Body. They are amazed from

watching my Uncle. They cannot believe this disease! You might need to find

another Hospice program that is sympathetic to your dilemma. Good luck!

* * * * * * *

Hi, All,

My neurologist instructed me to take Dad off his meds last week. Dad began

having horrible Restless Leg Syndrome, which I never even knew he had. He

couldn't rest which made everything worse - more frightened, more

delusional,

more everything bad. I finally figured out it was withdrawing the Sinemet

and

called the neurologist immediately. He said to go back on the Sinemet, and

it worked like a charm - no more RLS. The Hospice nurse had been here, and

had no comment about the RLS except the moon has been full, and that may

have

an effect on restlessness. I won't go off on how I feel about that, but . .

.. I know many of us are going through making decisions about withdrawing

meds

from our LOs so I wanted to share my experience with the Sinemet.

Apparently, it has been of some benefit to Dad. He had a good night sleep

last night.

I thought the rest would make a difference in his behavior, but he woke up

for a little while this morning, and continued to be near impossible to

handle. He won't let me toilet him because he thinks I am trying to kill

him. I

can get him on the toilet seat, and then he won't let me lift him off. He

continues to eat very little - sometimes because he can't, but sometimes

because

he won't. He is losing so much strength, I am afraid he won't be able to sit

up at all. What do I do when he won't eat anything. He will only take his

medicine when I hide it in food. I have been able to get him to eat two or

three bites several times a day to get his medicine down, but have not been

able to today. Now I know he has to have Sinemet or the RLS gets so bad it

almost throws him out of his bed, and without the Seroquel - I can't even

imagine. I can't even handle him when he is taking the Seroquel. Any

advice would

be immensely appreciated. I know he won't be able to last much longer on

such

little intake, but I want so much to make him as comfortable as possible for

his last days. Our Hospice acts like we have a disease from another planet.

I guess they just don't have much experience with neurological problems.

Sending hugs to all,

Piper

[Guest guest]

Piper,

I tried to respond with advice, just can't do it in your dad's case, not

parallel with Mom in

any way. (PDD 12 years) I respond with compassion and caring for what you are

living

with.

>

> Hi, All,

>

> My neurologist instructed me to take Dad off his meds last week. Dad began

> having horrible Restless Leg Syndrome, which I never even knew he had. He

> couldn't rest which made everything worse - more frightened, more delusional,

> more everything bad. I finally figured out it was withdrawing the Sinemet

and

> called the neurologist immediately. He said to go back on the Sinemet, and

> it worked like a charm - no more RLS. The Hospice nurse had been here, and

> had no comment about the RLS except the moon has been full, and that may have

> an effect on restlessness. I won't go off on how I feel about that, but . .

> . I know many of us are going through making decisions about withdrawing meds

> from our LOs so I wanted to share my experience with the Sinemet.

> Apparently, it has been of some benefit to Dad. He had a good night sleep

last night.

> I thought the rest would make a difference in his behavior, but he woke up

> for a little while this morning, and continued to be near impossible to

> handle. He won't let me toilet him because he thinks I am trying to kill

him. I

> can get him on the toilet seat, and then he won't let me lift him off. He

> continues to eat very little - sometimes because he can't, but sometimes

because

> he won't. He is losing so much strength, I am afraid he won't be able to sit

> up at all. What do I do when he won't eat anything. He will only take his

> medicine when I hide it in food. I have been able to get him to eat two or

> three bites several times a day to get his medicine down, but have not been

> able to today. Now I know he has to have Sinemet or the RLS gets so bad it

> almost throws him out of his bed, and without the Seroquel - I can't even

> imagine. I can't even handle him when he is taking the Seroquel. Any advice

would

> be immensely appreciated. I know he won't be able to last much longer on such

> little intake, but I want so much to make him as comfortable as possible for

> his last days. Our Hospice acts like we have a disease from another planet.

> I guess they just don't have much experience with neurological problems.

>

> Sending hugs to all,

>

> Piper

>

>

>

>

>

[Guest guest]

Arlene,

Me too. Once Mom was in a wheelchair, we didn't have to worry about the falling

with

Parkinsons, (PDD, no full blown Parkinsons evident now ) we decided to slowly

remove the

Sinemet, and then meds introduced to counteract the effects of Sinemet. A

vicious circle it

becomes. Once they were completely removed, she became so rigid that she

couldn't

reposition herself in her wheelchair anymore, feeding herself became slowly

impossible.

Removal of Sinemet, progress of this beast? I'm thinking both are at play, but

feel I did

the best I could for her in stopping the Sinemet, knowing the side effects she

was

suffering. To remove the meds from the beast or the beast from the meds? Only

our los

know what they are feeling. We do the best we can by them.

>

>

>

>

> Piper, I will add you to the prayer list, which is getting longer and

> longer. My heart aches for you.

> Your comments about Sinemet prompt me to write and I agree with your

> assessment because our neuro set us on a withdrawal program and I finally

figured

> out yesterday that he was unduly suffering from the rigidity. Somehow it

> doesn't make sense, when it is so difficult for him to move anyway, for

whatever

> reason, to add to the discomfort. Maybe I have made a mistake, because I am

> doing this on my own with no doctor's directive, but I guess I will have to

> live with this decision as well as the thousands of other ones I've made

alone

> since this all began.

> God have mercy on me. Arlene

>

>

>

[Guest guest]

Hi, Stevie,

Thank you so much for your words of encouragement. The timed release

Sinemet is a good idea. At least he wouldn't have to take it so many times a

day.

I can't believe what a difference it makes with the RLS. As far as the

eating goes, I won't force Dad to eat. He still is very defiant when he wants

to

be. I am not sure where he gets the strength because he hasn't had enough

food for a bird for the last two weeks. Hospice said he will begin to get so

weak from the lack of food that he won't be able to be aggressive. The

choking has become a MAJOR issue, and that scares me, as well as Dad, a lot.

He

has always been a very strong, determined man and I guess he is going to fight

Lewy until the very end. It is heartbreaking to watch, as you well know, but

I guess he wouldn't be Dad if he gave up. I have been so blessed to have had

such a special man for my father. I am trying to hold on to that thought

through this nightmare. Again, thank you so much for being here for me. I am

holding you and Mr. B in my prayers, and sending you strength back.

Love and hugs,

Piper

[Guest guest]

Hi, Courage,

Thank you for thinking of us, and I am sending the hug right back to you and

Olivia. Hope things are still improving with .

Hugs,

Piper