Re: For April

[Guest guest]

April,

Remember, the PD and the LBD drugs fight each other so just the right balance

needs to be found.

Less is more with LBD drugs. My Mom (Died'02) couldn't take any of them until

way later. And then I cut the dosage in quarters and fed them over the whole

day.

Mom didn't have a lot of the PD symptoms.

But it can be PD with LBD. Or LBD.

OR LBD with AD. OR a combination of PD LBD, and AD. So it is no wonder no one

can figure it out. Then on top of that, the MDs have a hard time diagnosising

LBD at all. They want to talk about PD or AD.

It is hard and what I did was not worry about what it was called and responded

to Mom as best I could and keep her off meds that she couldn't take. I just

played it a day at a time.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

Re: For April

April,

The short answer to your biggest question about progression is " Yes, LBD is a

progressing disease " and many times it is very rapid. There is no getting better

with LBD, unfortunately. You may have a few moment's where your LO seems back

to normal, but those are short lived and become more and more spaced apart. I do

scrapbooking and it still amazes me to look back at my Dad's pictures now and

see just how fast this disease progressed in him. He too ended up with the

diagnosis of Parkinson's and LBD but the LBD became the most pronounced - his

Parkinson's took at back seat once the lewy body symptoms became more abundant.

However, before the LBD became known to us, he had almost all the exact symptoms

your FIL has....reading your list was like reading my Dad's. We (including his

dr.) discontinued all medication six months prior to his death. This was due to

the fact that they were not working anymore or the side effects were worse then

what he was facing at the time anyw

ay.

Right now, it sounds like your FIL has more of the Parkinsonian symptoms but

the LB symptoms are probably what is bringing the rapid change in him.

Unfortunately you will continue to see the decline. My thoughts and (((hugs)))

go out to you. Stay with this group and feel free to e-mail me directly if you

need to let out some frustration or are confused about any aspect of this

disease. It's a very hard journey for both the cared one and the caregiver! We

in this group are here to support you and your family.

In reference to your FIL being hot one minute and cold the next. This is quite

possible as his mind may not be able to regulate his temperature, mentally. He

may think he is hot or cold rather than physically hot or cold. It's just one

more of the many aspects of this disease. My Dad did that a little bit with the

alternations but he was mostly cold all the time and always had layers of

clothes on.

Hang in there!!!

na

(just up I-26 in NC)

aswest1021 wrote:

Hello again,

I am new to the group and I have so many questions for all of you.

Let me recap a bit. My 68 year old FIL was diagnosed about two

years ago with PD. Then, approx. 6 months later, he was told he

also has some LBD. My feeling on that is either you have it or you

don't; you can't just have a little of it. Anyhow, he was started

on Requip, which caused more troubles than good, then he was

switched to Sinemet. He now takes it every four hours, but we're

not noticing it brings about any improvement, other than controlling

his tremors somewhat. I am wondering how you know if your LO has PD

or PD w/ LBD? How do you tell the difference between the two? I

will, again, list the symptoms I've observed in him or those my MIL

has shared with me:

1. Stooped posture

2. Extreme slowness in walking, eating, going to the bathroom

3. Tremors (started with hands; now is full body)

4. Loss of facial expression; is having facial grimacing now

5. A lot of mental confusion

6. Inability to perform simple math problems (he was a former

banker)

7. Frequent freezing and rigidity

8. Often says inappropriate things

9. Gets fixated on ideas and things easily

10. Is oddly tolerant of high heat

11. Argumentive

12. Can no longer drive (safety issue)

13. Requires a lot of assistance with using the toilet, getting up

and out of bed, cars, and chairs. Walks slowly with a walker or

cane.

14. Doesn't socialize much anymore

15. Fatigues very easily

16. Very poor handwriting, sentence structure, grammar

17. Blurred vision (prisms don't help)

18. Bouts of urinary incontinence

19. Frequent falls

20. Easily agitated

I'm sure there are more symptoms, but that's all I can come up with

right now. I know that a lot of these sound like typical PD.

That's why I want to know how you tell if it's more than that? What

symptoms would lead one to conclude that he also has LBD, not that I

doubt it?

If he in fact does have PD and LBD, can we expect the Sinemet to do

much for him? If not, are there any meds he should be taking? He

is under the care of a much-recommended MDS in ton, SC by the

name of Dr. Bergmann. I guess I just keep expecting to see some

positive changes in my FIL, but when I see him every month or so, it

always takes my breath away to see the state he's in. My MIL is his

primary caretaker. Thankfully, her other son lives just down the

road from them, so he is able to help a lot. Unfortunately, he'll

be leaving at the end of this month to work in another city for a

couple of months. I don't know what my MIL will do then. When my

FIL falls, she can't lift him by herself. Someone on another board

suggested she call the local fire dept. and they'd come out and

assist her free of charge. I've also read that it's a good idea for

her to keep a daily journal so that she can record what my FIL is

like from day-to-day. Should she express her concerns to the MDS

that he doesn't seem to be getting any better? How much should we

expect from the meds, as far as improving his condition? I know

that there is no cure for either PD or LBD. Does LBD progress more

rapidly than PD? Is it common for PD to progress as rapidly as I've

described?

Thank you all so much for listening. My heart goes out to each and

everyone of you who are dealing with this terrible disease. It

truly is a devastating illness for all those involved.

April W.

GA.

Welcome to LBDcaregivers.

[Guest guest]

April:

My Dad was diagnosed with Parkinsons in 2000. He was diagnosed with

Lewy Bodies Dementia in June 2005. My Dad has all the symptoms you

have noted with the addition of hallucinations which are very vivid.

At first the hallucinations did not upset him, but as they became

more vivid and detailed he became angry and upset. The majority of

his hallucinations involve people.

My Dad is on Aricept and Seroquel for the Lewy Bodies, Zoloft to keep

him calm and Sinemet for his Parkinsons symptoms. You really have to

watch the dosage of Sinemet because this tends to exacerbate the Lewy

Bodies symptoms. Management of the meds is key to managing Lewy

Bodies - if you can actually manage it. I just recently had to

insist that my Dad's neurologist reduced the amount of Sinemet my Dad

was taking because I felt he was having an adverse reaction to it.

They had him on 5 pills 25/250 mg a day. He is now at 2 pills-half a

tablet four times a day. I thought that was a drastic reduction but

I'll see how it goes. It's such a hard call and I pray I've done the

right thing. Saw him yesterday and he was having a good day so I

felt a little better about my decision.

My Dad lives in his home with Home Health Care 24 hours a day. I

live an hour and a half away and try to keep on top of things. I

want to keep him in his home (which is on a farm) as long as

possible.

T.

> Hello again,

>

> I am new to the group and I have so many questions for all of you.

> Let me recap a bit. My 68 year old FIL was diagnosed about two

> years ago with PD. Then, approx. 6 months later, he was told he

> also has some LBD. My feeling on that is either you have it or you

> don't; you can't just have a little of it. Anyhow, he was started

> on Requip, which caused more troubles than good, then he was

> switched to Sinemet. He now takes it every four hours, but we're

> not noticing it brings about any improvement, other than

controlling

> his tremors somewhat. I am wondering how you know if your LO has

PD

> or PD w/ LBD? How do you tell the difference between the two? I

> will, again, list the symptoms I've observed in him or those my MIL

> has shared with me:

>

> 1. Stooped posture

> 2. Extreme slowness in walking, eating, going to the bathroom

> 3. Tremors (started with hands; now is full body)

> 4. Loss of facial expression; is having facial grimacing now

> 5. A lot of mental confusion

> 6. Inability to perform simple math problems (he was a former

> banker)

> 7. Frequent freezing and rigidity

> 8. Often says inappropriate things

> 9. Gets fixated on ideas and things easily

> 10. Is oddly tolerant of high heat

> 11. Argumentive

> 12. Can no longer drive (safety issue)

> 13. Requires a lot of assistance with using the toilet, getting up

> and out of bed, cars, and chairs. Walks slowly with a walker or

> cane.

> 14. Doesn't socialize much anymore

> 15. Fatigues very easily

> 16. Very poor handwriting, sentence structure, grammar

> 17. Blurred vision (prisms don't help)

> 18. Bouts of urinary incontinence

> 19. Frequent falls

> 20. Easily agitated

>

> I'm sure there are more symptoms, but that's all I can come up with

> right now. I know that a lot of these sound like typical PD.

> That's why I want to know how you tell if it's more than that?

What

> symptoms would lead one to conclude that he also has LBD, not that

I

> doubt it?

>

> If he in fact does have PD and LBD, can we expect the Sinemet to do

> much for him? If not, are there any meds he should be taking? He

> is under the care of a much-recommended MDS in ton, SC by

the

> name of Dr. Bergmann. I guess I just keep expecting to see some

> positive changes in my FIL, but when I see him every month or so,

it

> always takes my breath away to see the state he's in. My MIL is his

> primary caretaker. Thankfully, her other son lives just down the

> road from them, so he is able to help a lot. Unfortunately, he'll

> be leaving at the end of this month to work in another city for a

> couple of months. I don't know what my MIL will do then. When my

> FIL falls, she can't lift him by herself. Someone on another board

> suggested she call the local fire dept. and they'd come out and

> assist her free of charge. I've also read that it's a good idea

for

> her to keep a daily journal so that she can record what my FIL is

> like from day-to-day. Should she express her concerns to the MDS

> that he doesn't seem to be getting any better? How much should we

> expect from the meds, as far as improving his condition? I know

> that there is no cure for either PD or LBD. Does LBD progress more

> rapidly than PD? Is it common for PD to progress as rapidly as

I've

> described?

>

> Thank you all so much for listening. My heart goes out to each and

> everyone of you who are dealing with this terrible disease. It

> truly is a devastating illness for all those involved.

>

> April W.

> GA.

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

>